We're coming up on the one-year anniversary of my cancer diagnosis. I've been thinking of how to really start off this blog, and the purpose of it, and other philosophical things like that. But instead of adding anything, I'm going to start by simply revisiting the last year. In chronological order, so you can live it quickly although I lived it more slowly, here are all my posts on my caringbridge site from my diagnosis until this blog post. I also popped in a few of the posts I put up on my personal Facebook page. [Facebook part still TO DO] I've left them mostly unedited, except for changing out my kids' names for placeholders, and as noted in a few places. There is a lot of profanity in here, you've been informed. I hope someone somewhere gets some solace from reading this.
Overview (February 22, 2014?)
I've never been a big fan of Valentine's Day, and this year it wasn't a big fan of me -- that's the day when I learned I have invasive breast cancer. So if you're seeing this, you're hoping to keep informed about how things are going. I'll try to do that here, to some extent. Thanks for coming. Craig, Kid1, Kid2 and I appreciate your support.
The worst part — February 22, 2014
I don't know much yet. It's only been one week since diagnosis, and I've been on "vacation." The worst part, so far, is not knowing what will happen. I know my cancer is aggressive. Aggressive cancer is a scary phrase. It pops into my head, that short and that scary, every time I look at my boys and wonder what the hell I am going to do.
MRI Monday afternoon, after our flight lands back in Seattle. Meeting the breast surgeon on Tuesday afternoon. Oncologist currently set for the following week.
My intent is to update here. I am overwhelmed, and I'm unlikely to respond to individual people for a while. Thanks for the love, vibes, juju, prayers, thoughts, care, and wishes. I am so scared.
Ugh. — February 23, 2014
I feel like tomorrow is the beginning of the end. Fuck.
One down... — Feb 24, 2014
n to go.
Overview (February 22, 2014?)
I've never been a big fan of Valentine's Day, and this year it wasn't a big fan of me -- that's the day when I learned I have invasive breast cancer. So if you're seeing this, you're hoping to keep informed about how things are going. I'll try to do that here, to some extent. Thanks for coming. Craig, Kid1, Kid2 and I appreciate your support.
The worst part — February 22, 2014
I don't know much yet. It's only been one week since diagnosis, and I've been on "vacation." The worst part, so far, is not knowing what will happen. I know my cancer is aggressive. Aggressive cancer is a scary phrase. It pops into my head, that short and that scary, every time I look at my boys and wonder what the hell I am going to do.
MRI Monday afternoon, after our flight lands back in Seattle. Meeting the breast surgeon on Tuesday afternoon. Oncologist currently set for the following week.
My intent is to update here. I am overwhelmed, and I'm unlikely to respond to individual people for a while. Thanks for the love, vibes, juju, prayers, thoughts, care, and wishes. I am so scared.
Ugh. — February 23, 2014
I feel like tomorrow is the beginning of the end. Fuck.
One down... — Feb 24, 2014
n to go.
Good news — February 24, 2014
My surgeon says the MRI shows it is only one side, the other side looks good, and no evidence from the MRI of lymph node involvement. Even preliminary good news feels good. More tomorrow.
Next steps — February 25, 2014
It sure feels good to have some information. At the same time, my brain is melting. It is clinical Stage 2A. (pathology stage comes after they take it out).
I have a lumpectomy (aka partial mastectomy, same thing) with sentinel lymph node biopsy scheduled for March 11. We're going to do some genetic testing this Thursday. That will take a few weeks to get results, which would determine whether bilateral mastectomy makes sense - the genetic testing is suggested for anyone under 50 diagnosed with breast cancer, not me in particular. But we're doing the first surgery without waiting for those results.
We talk about chemotherapy next week. If needed that follows surgery. Then comes radiation - daily for six to seven weeks. Radiation is for sure, whether or not chemo, unless genetics suggests I should have a bilateral Mastectomy, in which case probably no radiation.
Let's cross our collective fingers that chemotherapy isn't necessary, although I will do whatever they think gives me the best chance to live a normal length life. The surgeon said that with me being so young, they may want to throw the book at me to try to prevent recurrence.
So the long and short of it seems to be that it is a garden variety scary aggressive cancer (younger women tend to have more aggressive breast cancers), with a relatively standard treatment arc. Hopefully the biopsy confirms no spreading cancer. And I'll report in after the oncologist appointment next week.
And I can keep working out until March 10. And then we'll see.
Variations on a theme. — February 26, 2014
So I'm not a the hugest fan of the pink industrial complex. I had threatened to unfriend the first person to send me a pink teddy bear holding ribbons. I think I will let this one slide. Not that I can actually *use* it with Kid1 around reading everything. Thanks Melanie. And good luck birthing that little girl today!!!!
My surgeon says the MRI shows it is only one side, the other side looks good, and no evidence from the MRI of lymph node involvement. Even preliminary good news feels good. More tomorrow.
Next steps — February 25, 2014
It sure feels good to have some information. At the same time, my brain is melting. It is clinical Stage 2A. (pathology stage comes after they take it out).
I have a lumpectomy (aka partial mastectomy, same thing) with sentinel lymph node biopsy scheduled for March 11. We're going to do some genetic testing this Thursday. That will take a few weeks to get results, which would determine whether bilateral mastectomy makes sense - the genetic testing is suggested for anyone under 50 diagnosed with breast cancer, not me in particular. But we're doing the first surgery without waiting for those results.
We talk about chemotherapy next week. If needed that follows surgery. Then comes radiation - daily for six to seven weeks. Radiation is for sure, whether or not chemo, unless genetics suggests I should have a bilateral Mastectomy, in which case probably no radiation.
Let's cross our collective fingers that chemotherapy isn't necessary, although I will do whatever they think gives me the best chance to live a normal length life. The surgeon said that with me being so young, they may want to throw the book at me to try to prevent recurrence.
So the long and short of it seems to be that it is a garden variety scary aggressive cancer (younger women tend to have more aggressive breast cancers), with a relatively standard treatment arc. Hopefully the biopsy confirms no spreading cancer. And I'll report in after the oncologist appointment next week.
And I can keep working out until March 10. And then we'll see.
Variations on a theme. — February 26, 2014
So I'm not a the hugest fan of the pink industrial complex. I had threatened to unfriend the first person to send me a pink teddy bear holding ribbons. I think I will let this one slide. Not that I can actually *use* it with Kid1 around reading everything. Thanks Melanie. And good luck birthing that little girl today!!!!
Facebook Post - February 27, 2014
Learned today: if you have a mini-mental breakdown at the pharmacy counter in front of a nice pharmacist, she can give you your prescriptions for free together with a hug and a nice pick-me-up talk.
Radio silence — February 27, 2014
Fan club,
Sorry about the email/text/etc. radio silence. So many of you have sent such nice notes and offered so much emotional and logistical support. I have read them all, I promise, and I love reading them. They also make me cry, and I am overwhelmed and can't respond right now. But I really appreciate it, and I will let you all know when shit starts or will start hitting the fan and how you can help. I know you all want to help.
Love, Natasha
Facebook Post - March 2, 2014
Craig: You want some? Me: No. Thank you. I already have cancer. Don't make me eat cottage cheese too.
Busy being a patient, busy being impatient. — March 3, 2014
I will have six medical appointments this week. I've always been good at absorbing and retaining information, but this is a lot and I am in full overload already. This will be a difficult week. And then I have to make decisions based on that information that directly and irrevocably affect my long-term health and my family.
This whole business is doing a fantastic job at feeding my propensity for anxiety and impatience.
One good thing I can say: I'm lucky to live near Seattle, because other people in my shoes have to travel long distances for care of this caliber. As it is, I'm debating between several excellent care providers in one tightly circumscribed geographic area. We are cancer-care-central.
My surgeon is Claire Buchanan. http://www.swedish.org/physicians/claire-buchanan
My medical oncologist is Kristine Rinn. http://www.swedish.org/physicians/kristine-rinn
I am being treated at the True Family Women's Cancer Center.http://www.swedish.org/services/cancer-institute/services/true-family-womens-cancer-center
I have yet to determine some other members of my care team. Natasha
Roller coaster — March 3, 2014
(Someone asked about donations. For the love of all that is holy, don't donate to Caringbridge. Other than that, your favorite charity works.)
It has been a real roller coaster this week.
I met with a couple of radiation oncologists. They convinced me that opting for a full mastectomy is not medically preferable. Although I have a pretty strong urge right now to get as many breast cells as far away from me as possible, I'm going to listen. We'll reevaluate in the unlikely (but extremely anxiety-inducing) event that my genetic testing comes back adverse.
I also learned about a form of radiation delivery to the left side that reduces impacts on the heart: deep inspiration breath hold. I'll be doing it at Swedish. This SCCA page has a compelling image plainly demonstrating why it is useful for left-sided breast cancers.
http://www.seattlecca.org/diseases/breast-cancer-radiation.cfm
Unfortunately they don't offer this at Overlake, so I won't do my radiation therapy there. (Overlake is a seven- minute, traffic-free commute... but I can't risk my heart, obviously.)
I met with the medical oncologist Thursday evening. I was expecting confirmation that I definitely need chemotherapy. She didn't say that. She said I likely do. But if my lymph nodes are clear, she will order the oncotype test. http://breast-cancer.oncotypedx.com. There is a slim chance that notwithstanding the aggressive nature of my cancer, it scores a low-risk on that test. She said she has seen it happen before. That test takes about two weeks to return results. If the result is what she expects (not an amazing low score, but an intermediate risk score or higher), she's going to recommend chemotherapy. If my nodes show cancer cells, she's going to recommend chemotherapy. There are so many forms of chemotherapy and the appropriate form depends too much on the results of my surgery to know more.
I was also feeling pretty good yesterday and this morning about the process of treatment and recovery. It sounded less bleak than I expected. But this afternoon I met with a physical therapist, and it sounds like it is going to be really arduous and difficult and SLOW SLOW SLOW and require a lot of patience from me. Again that word patience. I feel like I've recently put a lot of work into my physical and emotional well-being. I know it will serve me well in recovery, and I should be glad to have my so-called "health" going into this. But I nevertheless often feel like things are just unraveling at the seams.
Craig is the best husband who ever existed.
Kid2 is responding with acute emotional awareness and empathy. It breaks my heart to see it. I know empathy is good, but I just don't want my little troublemaker to need to exercise that skill so much so deeply so soon.
Kid1. Kid1 has heard all the real words - cancer, radiation, surgery, chemotherapy. I wasn't planning on hiding things from him. But with a thousand books and pieces of paper everywhere that he can read, that wouldn't have been an option in any event. He said that when I talk about it, it even hurts him in his feet. He is very distressed that I might lose my hair. He is keeping it together better than I am. I think. I hope. I signed up for a study through the UW about talking with school-age kids about cancer. That should start soon, and I am hoping it will help.
Next week surgery is on Tuesday. I have meals and child care set for the rest of the week. Once the rest of my plan is in place, we will put out information on this site about when and how and what help we will be needing and appreciating from this fan club. Some folks who live nearby can try to help with bringing meals to our house so those who are Seattle-side don't need to slog over to drop off food, especially since I don't promise to be friendly on any given day. :-) Details of all of this will be forthcoming. Thanks for your continued support.
Facebook Post - March 2, 2014
I have figured out the problem. The source of it all. You've all got my BACK. You've apparently all been neglecting my FRONT.
Fun with needles — March 10, 2014
Now I'm radioactive. It kind of sounds like a superpower. But let me report that it is a lot less awesome. And it hurts.
Overheard on the drive to surgery — March 11, 2014
"Aw, Fuck." -- Cancer
Pretty sure.... — March 11, 2014
... I am still high. I should have experimented with drugs more in my youth.
We got home around noon. (so about 7 hours all told today). I woke up hungry about an hour ago. Sitting here on the couch, less two lymph nodes and one fucking cancer. It feels great to have left so much of the cancer in the hospital.
Let's hope they got it all. Next step: healing, waiting for pathology, learning more, waiting Waiting. Waiting. Lots of TV.
Love, Natasha
Scrambled. — March 13, 2014
Doc said she removed tissue about the size of a small egg. The result is a lot of swelling. A lot. Everything feels scrambled. Looks it too.
The incision to remove the lymph nodes hurts like a bitch. Those missing lymph nodes would be really handy right now to help with all that swelling. The back of my arm is numb. Apparently the trauma to the nerves commonly causes this numbness, and hopefully it will resolve soon.
I'm still drugging up, but it feels more like a mask than relief.
I really hope they got all the cancer mass out. I really hope they did.
News. — March 13, 2014
They didn't. They didn't get all of it. Fuck. It's still in me. They have to go back in there.
The nodes are negative. This part is good news. (Edit : they found lymohovascular invasion. I don't know what
that means exactly for treatment, except I know it isn't good.)
The good stuff — March 13, 2014
I just got off the phone with the oncologist (Dr. Rinn). Here is a good thing: the invasive part of the cancer was smaller than they initially thought, so I've gone from a stage 2 to a stage 1 cancer. This is good news. She says this is really good news. She said what I'm dealing with is non trivial, we're going to do a lot, we're going to do what we have to do, but she said I'm going to be just fine. (Cue Natasha crying.) If we could skip the rest of 2014, I'm in.
She says the next surgery won't be any worse than the one I just had (especially since they don't have to take out any more lymph nodes). Although she knows this one sucked. She said lumpectomies can hurt more than mastectomies for recovery because they (obviously) don't take out all your nerves. So the next one will suck too. Now that I've done this so far I'd rather keep the rest of the boob, so I'm hoping I won't need to take the whole thing off. That's TBD.
She's going to order the Oncotype test. This test measures recurrence risk. If that comes back clearly low or high risk, then we act accordingly. If that comes back intermediate ("wishy washy"), she's going to enroll me in a study (the promise study? Can't quite remember the name) to do every other genomic test out there. And that's how we come up with a plan.
So yeah. My Ativan and I bid you all a good night.
Facebook Post - March 17, 2014
I dropped Kid1 off at school today. It took a lot more out of me than I had expected it to! But it felt good to do something normal again. Quoth he: Awww. I wanted Kim Aunty to drop me off again! Love you too, Buddy.
The down low from this afternoon. — March 19, 2014
Dr. Buchanan presented my case at the Tumor Board today (other surgeons, radiologists, pathologists, radiation oncologists, medical oncologists - it's like a big cancer party they have every week), and she said she was hoping to get a consensus on whether to try the re-excision or go for the mastectomy. She said she didn't get a consensus.
We're trying the re-excision. I might end up with something of a quasimo-boob from the re-excision (think breast lift and a bit smaller) and radiation (radiation shrinks tissue); she said it is hard to say what the end results will look like after multiple surgeries and radiation. And I have a 20-30% chance that she won't get clear margins again. They are basically fishing in the dark in there because the cancer that is left (the DCIS part; not the invasive part; that's all out) doesn't show up on any of the imaging (including the x-ray they do of the removed tissue right after they take it out). So they have to send what they cut out over to pathology and wait and see. If they don't get clear margins again after this, then I would probably have a mastectomy.
[I know a lot of you think, hey, why doesn't she just have a mastectomy. I know this because some of you have said things like, "Hey, just have a mastectomy." So if you want to know why, the conversations basically went like this:
Me: I'd like to get as many breast cells as far away from me as possible. Take 'em off please.
The doctors: We could do that... but then you know you wouldn't look quite as good in a bikini, right? Me: Wha--- what??? Nevermind.
Oh wait. Maybe that's not exactly what happened. Now that I think of it, it might have had something more to do with my specific cancer, the information we have so far, and sage medical advice from experienced practitioners doing their best to cure me.]
Anyhow, so I have surgery on Monday. On the plus side, they don't have to dig into my side again to get any more lymph nodes out. This is really good news for me, because whatever happened last week, it really screwed me up. I have a lot of pain in my arm/upper back which the doc identified today as nerve pain. It is getting worse instead of better. I have a new drug to add to my panoply to help with the neuropathy. She confirmed that Advil/Tylenol wouldn't help with it much, which is a relief because I was starting to think I might need to look into picking up a more serious pain pill addiction or something to feel better. And she said it might keep getting different and worse for a while, that new painful things might happen over the next few weeks that I haven't experienced yet, because nerves are funny like that. Yay for me.
On the plus side - I'm in a pretty good mood for some reason at the moment that I am typing these words, and I have yet to take anything today that causes chemically-induced euphoria. So there's that!
Also, I got to talk to someone this week who just went through this crap and is about my age. That was really cool. Now I have a cancer buddy.
I think that's the haps. Also, Craig's mom might fly in this weekend, so hopefully we'll be OK next week for childcare/meals, etc., but don't you all fret. My emissaries or I are going to let you all know when we expect you to fall in line with the meal train or whatever. I promise that I'll post something here or/and on Facebook when we need food. I promise. Promise. [Please stop asking, I promise I will tell you. I promise. I know you want to help. You are awesome.]
Euphemisms. — March 21, 2014
So the physical therapist today confirmed that I have Axillary Web Syndrome, aka cording, which is a Euphemism for My Arm Fucking Hurts All The Time.
See http://www.breastcancer.org/treatment/side_effects/aws
She also confirmed that it can get worse for a few months, but that it doesn't last forever. Of the many side effects of surgery this is therefore a "good one" because other stuff is bad and permanent. So yay?
Treatment is lots of massage that feels really painful. Pulling on the cords. Like playing a guitar in your underarm. Uhm. Yeah. This happens?????!?!?
Ciao.
Facebook Post - March 21, 2014
I'm really glad my earlobes don't hurt. #brightside?
Take two. — March 24, 2014
So here I am post-surgery. Which is good, because I was more and more of an emotional wreck pre-surgery as the weekend progressed. I am crossing everything that can be crossed that surgery is now done in hopes they got it all. Please oh please oh please.
I asked Dr. Buchanan if she could just take more out and get a better chance of clean margin, on the theory that I don't mind a more misshapen boob but I do mind more surgery. She said that isn't really how it works. She takes out what she's supposed to. And then if it isn't a clean margin, she's just chasing something that might be bigger than we expect. So that's why it's usually mastectomy next. Although they do also have mastectomy in that case that comes back saying no residual disease. Ugh. I don't actually mind the idea of mastectomy as much as I mind the idea of mastectomy after two other surgeries.
I just want this done in reverse so I can make all my decisions with hindsight instead of guessing. Actually I think if we could start at the end of treatment, except then not go back in time. Yes. That is option G. I take option G. All the other options sound less awesome.
I'm still not completely past the anesthesia meds, although I just finished my post-surgery nap. So right now, I feel OK. The worst pain is still the same as it was before surgery - the neuropathy in my arm. I feel the new surgery pain, but it is just starting to poke its head out of that rabbit hole, and my nap aaaaaaalmost brought me all the way to narcotics time. So I'm going to try to dull that down. At least the pain medication is effective for that new pain.
Hoping that we did actually fuck that cancer up this morning, and not just fucked me up more. Over and out.
Oh my. — March 25, 2014
You know it's good when your surgeon's message starts with "Yippee." She got it all. In a few places with less than 0.5mm to spare (distance from cancer to edge of removed tissue). Oh my goodness. I almost fainted. I'm so relieved and overwhelmed. I don't quite know what to do with myself right now.
Facebook Post - March 28, 2014
FU, cancer. I went to the gym.
The haps. — March 31, 2014
OK, people.
So the good news: The surgical site is healing well. I have a seroma (http://lmgtfy.com/?q=what+is+a+seroma&l=1) but it is going to resolve itself (at least, the surgeon didn't say she needed to do anything about it, and I assume since my boob and I were just there, she would have done or said something if she needed to). It will take a few months before I can tell what my final product will look like. I am clear to swim in three weeks, lift up to 10 lbs now (unrestricted in three weeks -- note that Kid2 being 30 lbs of wriggly trouble, this doesn't resolve the main issue we're still facing post-surgery), and run in 2 more weeks. Also, my nerve pain is improving significantly. I no longer want to kill anyone who touches my arm or back. I have graduated down to assault or battery. [Brownie points* to my attorney-friends reading this, if you can accurately post the difference between assault and battery (if any - I'm not giving hints) in the comments WITHOUT reference to any research materials, no cheating.] As Craig noted, whether this nerve-pain improvement is the result of passage of time, the nerve medicine, or the weird physical therapy/lymphatic massage, he and I don't really give a shit. <TMI>Also many many thanks to Melanie for suggesting Magnesium Citrate as a solution to my digestive woes. I lost over 5 lbs on Saturday. This bottle of magic cost less than $2, but provided over 6 hours of amusement.</TMI>
The bad news: My Oncotype score is 51. This is high risk of recurrence (http://www.breastcancer.org/symptoms/testing/types/oncotype_dx#Interpreting). This means I have a ticket to chemoville. Technically, I haven't actually been told directly in person by my oncologist that I will need to have chemo. That's because my appointment is on Wednesday and today is Monday. But, I'm a pretty smart lady and can read.
Ciao. Natasha
*Brownie points not exchangeable for actual brownies, magic or regular. The sustenance-providing is going to be mostly one-way for the coming months. What Craig and I are going to get around to doing is to write up a list of stuff we like to eat including some of our favorite recipes that the boys will eat, and get that out there somehow. I don't know when chemotherapy will start, but assuming I haven't outsmarted myself and it is going to start, my rough estimate is 2-6 weeks from now. Dr. Rinn (medical oncologist = chemo doctor) previously told us that the general pattern is usually chemo, followed by a week of feeling like crap, a week of feeling meh, and a week of feeling pretty good. Rinse and repeat 4-6 times. So there will be at least several solid weeks coming up when we'll appreciate the help with the food and other things, and come our appointment this Wednesday we should have a better idea of when our most-miserable times will be, and when our "we want to pretend we are handling this thing called life" times will be. I think. And then everything will end up being different than I expected, and y'all will need to bring even more food.
Facebook Post - April 1, 2014
I get choked up every time I brush my hair.
Well... — April 2, 2014
Things suck. Everything I write next is kind of a blurred recollection of my rather stressful meeting this afternoon.
That score of 51 on the Oncotype? My oncologist said it surprised her, it's not common to see them that high. It is Really Fucking High. She still was encouraging but not as "you're going to be fine" as she had been before this test result. This score means that, without chemotherapy, I have a 34% (95% confidence with approx 10% SD) chance of distant recurrence in 10 years (read: not in my boob, but somewhere else more dangerous -- aka metastatic) (assuming I take Tamoxifen, which is a given). Chemo reduces this risk by about 60%, which means I have a ~14% chance of ending up with metastatic breast cancer in 10 years... that's INCLUDING the benefits from surgery, chemotherapy, radiation, and hormonal therapy (Tamoxifen), and all the resulting disaster this is going to bring about on the rest of my body. A bilateral mastectomy reduces this risk by 0%. If I tolerate chemo well, she'll consider giving me six cycles of chemo instead of four. She said there is no clinical data that confirms that will help, but if I can tolerate it she will want to try it.
Shit fucking hell.
I am getting a port implanted on Tuesday afternoon next week, so that my right side doesn't feel left out from being scarred and mangled. See scary picture bottom of this page: http://www.breastcancer.org/treatment/chemotherapy/process/how
I start chemo on April 16.
I was thinking of how I was going to close this journal entry with the good news - I couldn't come up with any. But then the Pagliacci delivery guy came, and after he gave us our pizza he said our grand total was $0, thanks for being super customers. So there's the good news.
Natasha
Yay. — April 3, 2014
BRCA1 and BRCA2 testing came back negative. Yay. I get to keep my ovaries. My treatment might make them stop functioning temporarily or permanently anyway... But at least they won't have to be physically removed.
And as a side note I get to keep my remaining boobs, although my rudimentary understanding from the genetic counselor is that the ovarian cancer risk with BRCA genetic abnormality is the really dangerous thing - it is much harder to detect than BC and therefore by the time detected, usually deadly. Not that I am particularly impressed with BC detection technology.
And I just got a massage from a cancer massage person. Cancer has lots of people.
Impatience pays off. — April 4, 2014
I just got out of PT. She gave me a bunch of exercises I can do with a band, while sitting on a ball. She said it's early in my recovery to do these, but she knows I want to get this going, and I have pretty much my full range of motion back already.
She also says she doesn't feel any more cords. Yay! I still have the nerve pain, albeit improved, but maybe it isn't from the cords and just from the nerves being poked around.
But the most significant upside: she ok'd me to go back to my gym for a "regular" circuit training workout, after I do her exercises for a couple of days. I had to gripe a little, and she did roll her eyes at me and extract some promises from me regarding intensity. But hells yeah, I'm going back! I've been to my gym four times this week to ride the bike, and it's been great to get my sweat on and feel like most of me is not broken (and just to be around the people at the gym, who are so inspirational and supportive - thanks Nick and Liz!). But it's hard to watch people do the workout and not join in the fun. I'm itching for Monday.
The downside of course is that I can only fit in the one visit since they put the port in on Tuesday. She told me that they sew the port to your pectoral muscle to keep it in place. Yuck and gross and blech. The whole idea of this plastic device sewed inside me for half a year gives me hives. I wish they could wave a magic wand over me and leave my body alone.
Also, the teachers at Kid2's school all got together and wrote me the sweetest, most supportive card ever, and included gift certificates to some kid-friendly restaurants and for Cupcake Royale. It really warmed my heart, and I love that they are taking care of my baby. I know he's been in school and will continue to be in longer hours than I like. It's so nice to feel like he's in such a caring and loving place. I love them all.
And finally, Sarah K. sewed me a special little treat - a real-life version of my Caringbridge profile picture. [I was actually planning to do this myself, but in over two years, I haven't completed even 5% of Kid2's cross stitch birth announcement. So I think one might actually say, I was "planning to plan." Brownie points to whoever can name the movie reference, no cheating.] I can't keep it out on display because of Kid1ReadAllTheTime, so it graces my lingerie drawer and keeps my bras company. So now when I put a bra on, it sends an extra burst of FC power to my boobs. I'm not sure they have a clinical study (yet) proving that FC power boost is as effective as radiation boost, but they fund all sorts of weird studies. This clinical study is sure to be in the pipeline. Thanks Sarah!
Bring food! — April 6, 2014
Hi folks. The day some of you have been clamoring for is here! I know you are all breathing a collective sigh of relief.
We are using the "planner" feature on this website to do our meal requesting. It seems to work-ish, and doesn't require you to go to another website, so let's give it a shot. You have to click on the "Planner" tab in the header bar. We just put in some requests for the first week that I'm expecting to feel like hell. Caringbridge doesn't send out any notifications when things are added to the planner (because that would be too helpful) so I have to write a journal entry too when we do that. If this works well, we'll add more days as we know when they will be.
Anyhow. Sign up? Thanks.
Also, folks from afar have been wondering how to help since they can't drop off dinner. You help by writing supportive comments, emails, and sending nice thoughtful cards. I really appreciate them. They are enough.
Some of you, however, have been insistent. If you really want to do something tangible, restaurant gift cards are an option. Here are some places we like* and go/get take out from sometimes:
[ed. note: I deleted this list...]
Ok. Thanks guys. Tomorrow I meet with this dude: http://www.swedish.org/physicians/david-zucker He seems Awesome. His video makes me hopeful.
Also, I'm going to this thing called look good feel better, which is through the American Cancer Society. http://lookgoodfeelbetter.org. Apparently they will have a cosmetologist there who will try to teach me how to use appropriate makeup (which they give me free) to make myself look less like crap when chemo makes me look like a pallid ghost. Wish them luck getting me to actually *use* the makeup. I don't think they've met anyone yet as makeup-lazy as I am. But who knows, chemo will wreak a great many changes on my life. Maybe makeup use will be one of them. (Then Kristine K. will have to convince me to buy a pair of Louboutins, and my transformation will be complete.)
Good night, Natasha
*"Like" defined loosely here. Some of these are on the list only because they are places Kid2 can scream freely.
Deep thoughts and foreign bodies. — April 7, 2014
I had a great meeting with Dr. Zucker today. He has encouraged me immeasurably about the prospect of doing what I can - which isn't insignificant - to nurture a healthy body through cancer treatment. I will have to learn new techniques of everything, including the basic principles of understanding what my body needs and how it communicates those needs to my brain, which isn't going to understand what this new body is telling it for a while. It's not good or fun. But it has goals and hope, and he said I can keep up my regular circuit training workout (with modulated intensity) as much as I want/am able.
And he has amazing understanding of the philosophical and existential angst I'm experiencing. Sometimes I feel like people (I might be talking about you, but I still love you) are so eager to try to make me feel better, stronger, more of a "fighter," the possessor of a more positive attitude, that I can't quite even explore the depth of my thoughts - dark, light, or in between. For example, he just seemed to have a deep understanding of the vivid and visceral, discordant feelings that arise from having a diagnosis of breast cancer scant months after ending breastfeeding a child. (In fact I am still lactating.) Of facing mortality so soon after nurturing new life.
He also confirmed several times, with exactly the right tone, the right facial expression and body language, a lack of pity, yet a sense of humor - "this just sucks."
It sucks.
Tomorrow I'm going to get the port put in. I don't want it in my body. But in it will go. The consent form is signed. It's better than the alternative of a shredded vein. There are no good choices.
I don't consent. I don't! I don't consent to one cell in my boob going awry and trying to figure out an efficient, clandestine way to kill me. It didn't ask my permission, the little shit. I don't consent to figuring out how to not spend the rest of my life wondering if or when. I don't consent to the irony of compulsively reading all the "top ten dirty foods to buy organic" lists, and then having a plastic device placed in my body, under my skin and sewn to my muscle, with a long winding catheter that will poke into a vein in my chest and end up RIGHT NEXT TO MY HEART VALVE so that poison can be conveniently pumped directly into my heart.
One day at a time. As if there is any other option.
I do consent to the poison, and the radiation, and the drugs, and the surgery (my surgeon was an artist by the way, her work is beautiful) and the side effects, and the anxiety, because Kid2's laughter is what joy looks like when it changes from a feeling into a sound, because Kid1's empathy is human compassion in its purest form, and because when Craig holds my hand and lets me cry with his fingers stroking my hair and a gentle quirky smile on his face, I know he's still going to be really fucking good looking when he's 98, and I don't want to miss that.
There is a Facebook page called "Humans of New York." It's pretty awesome. This guy just walks around, taking pictures of New Yorkers and interviewing them, and putting short (obviously out of context) poignant quotes up about them. I saw one recently that really spoke to me. This quote was from April 3,145pm (Pacific time I guess). Take a look at the photo that went along, it is really good - you just have to scroll down on his Facebook page. [ed. note: I added a screenshot of the HONY page, from www.humansofnewyork.com]
Here is the quote:
"I worked at the same cafe for 28 years, but it just went out of business, so I had to find new work. Before it was like I had a family. I saw the same people every day. But now I just have a job. One day you lose something, and you say: 'Oh my God. I was happy. And I didn't even know it.'"
Hi folks. The day some of you have been clamoring for is here! I know you are all breathing a collective sigh of relief.
We are using the "planner" feature on this website to do our meal requesting. It seems to work-ish, and doesn't require you to go to another website, so let's give it a shot. You have to click on the "Planner" tab in the header bar. We just put in some requests for the first week that I'm expecting to feel like hell. Caringbridge doesn't send out any notifications when things are added to the planner (because that would be too helpful) so I have to write a journal entry too when we do that. If this works well, we'll add more days as we know when they will be.
Anyhow. Sign up? Thanks.
Also, folks from afar have been wondering how to help since they can't drop off dinner. You help by writing supportive comments, emails, and sending nice thoughtful cards. I really appreciate them. They are enough.
Some of you, however, have been insistent. If you really want to do something tangible, restaurant gift cards are an option. Here are some places we like* and go/get take out from sometimes:
[ed. note: I deleted this list...]
Ok. Thanks guys. Tomorrow I meet with this dude: http://www.swedish.org/physicians/david-zucker He seems Awesome. His video makes me hopeful.
Also, I'm going to this thing called look good feel better, which is through the American Cancer Society. http://lookgoodfeelbetter.org. Apparently they will have a cosmetologist there who will try to teach me how to use appropriate makeup (which they give me free) to make myself look less like crap when chemo makes me look like a pallid ghost. Wish them luck getting me to actually *use* the makeup. I don't think they've met anyone yet as makeup-lazy as I am. But who knows, chemo will wreak a great many changes on my life. Maybe makeup use will be one of them. (Then Kristine K. will have to convince me to buy a pair of Louboutins, and my transformation will be complete.)
Good night, Natasha
*"Like" defined loosely here. Some of these are on the list only because they are places Kid2 can scream freely.
Deep thoughts and foreign bodies. — April 7, 2014
I had a great meeting with Dr. Zucker today. He has encouraged me immeasurably about the prospect of doing what I can - which isn't insignificant - to nurture a healthy body through cancer treatment. I will have to learn new techniques of everything, including the basic principles of understanding what my body needs and how it communicates those needs to my brain, which isn't going to understand what this new body is telling it for a while. It's not good or fun. But it has goals and hope, and he said I can keep up my regular circuit training workout (with modulated intensity) as much as I want/am able.
And he has amazing understanding of the philosophical and existential angst I'm experiencing. Sometimes I feel like people (I might be talking about you, but I still love you) are so eager to try to make me feel better, stronger, more of a "fighter," the possessor of a more positive attitude, that I can't quite even explore the depth of my thoughts - dark, light, or in between. For example, he just seemed to have a deep understanding of the vivid and visceral, discordant feelings that arise from having a diagnosis of breast cancer scant months after ending breastfeeding a child. (In fact I am still lactating.) Of facing mortality so soon after nurturing new life.
He also confirmed several times, with exactly the right tone, the right facial expression and body language, a lack of pity, yet a sense of humor - "this just sucks."
It sucks.
Tomorrow I'm going to get the port put in. I don't want it in my body. But in it will go. The consent form is signed. It's better than the alternative of a shredded vein. There are no good choices.
I don't consent. I don't! I don't consent to one cell in my boob going awry and trying to figure out an efficient, clandestine way to kill me. It didn't ask my permission, the little shit. I don't consent to figuring out how to not spend the rest of my life wondering if or when. I don't consent to the irony of compulsively reading all the "top ten dirty foods to buy organic" lists, and then having a plastic device placed in my body, under my skin and sewn to my muscle, with a long winding catheter that will poke into a vein in my chest and end up RIGHT NEXT TO MY HEART VALVE so that poison can be conveniently pumped directly into my heart.
One day at a time. As if there is any other option.
I do consent to the poison, and the radiation, and the drugs, and the surgery (my surgeon was an artist by the way, her work is beautiful) and the side effects, and the anxiety, because Kid2's laughter is what joy looks like when it changes from a feeling into a sound, because Kid1's empathy is human compassion in its purest form, and because when Craig holds my hand and lets me cry with his fingers stroking my hair and a gentle quirky smile on his face, I know he's still going to be really fucking good looking when he's 98, and I don't want to miss that.
There is a Facebook page called "Humans of New York." It's pretty awesome. This guy just walks around, taking pictures of New Yorkers and interviewing them, and putting short (obviously out of context) poignant quotes up about them. I saw one recently that really spoke to me. This quote was from April 3,145pm (Pacific time I guess). Take a look at the photo that went along, it is really good - you just have to scroll down on his Facebook page. [ed. note: I added a screenshot of the HONY page, from www.humansofnewyork.com]
Here is the quote:
"I worked at the same cafe for 28 years, but it just went out of business, so I had to find new work. Before it was like I had a family. I saw the same people every day. But now I just have a job. One day you lose something, and you say: 'Oh my God. I was happy. And I didn't even know it.'"
I was happy. I did know it. I'm still a lot happy. But I've lost touch with something very deep in the core of the happiness. I don't know what. It feels a lot like fear (or more precisely, a lack of fear), although the word doesn't quite fit. I'm trying to figure it out. I don't think it's irretrievable. But I can't find something when I don't have a name yet for what I've lost.
End deep thoughts. We now return you to your regularly scheduled programming.
Facebook Post — April 9, 2014
Act of rebellion! I didn't wait 24 hours post-op to shower. Just 22. So there, hospital release restrictions. In your face!
Trauma. — April 14, 2014
My hair used to be straight. Not completely. It had a little of that annoying random waviness to it that made it especially difficult to deal with the fact that my mother cut my hair throughout high school. But mostly straight. Then I had my two boys, and somehow they came out as a matched set, with this crazy-cute, blond, corkscrew- curly hair.
They didn't pass the blond up the tree. But they did hand up the curly. Especially post-Kid2, my hair has been curly. Sometimes just a little, but some days -- some days crazy ringlet curly. I've told the boys so often, this is the curly hair they gave me.
I just had Craig cut me a lock of my hair, as a keepsake. Then I got Kid1 out of bed so he could cut a lock for himself, too. All of a sudden I had the overwhelming drive that it had to be tonight. Tomorrow starts some of the pre-drugs specific to the chemotherapy (cycle 1 starts Wednesday) and I wanted to keep pre-chemo hair. Not too much of it. Just enough to remember. So that when it comes back in next year, agonizingly slowly, I can still hold onto these pieces and remember the curly hair my little boys gave me.
I don't know what it will look like when it comes back in. Maybe it will look a lot the same and maybe it won't. But this story is part of my family now. I couldn't let it all go.
There is so much trauma going on here that doesn't involve the surgeon's knife.
A recap. — April 18, 2014
So I am planning two journal entries today. This one will be a recap of my mini Facebook "live-blog" for people who aren't on FB but are following here, so they can see what happened on Wednesday. Then I thought I would update you all on the rest of it in another post.
Here is the recap:
Caption of the picture of me at the gym:
End deep thoughts. We now return you to your regularly scheduled programming.
Facebook Post — April 9, 2014
Act of rebellion! I didn't wait 24 hours post-op to shower. Just 22. So there, hospital release restrictions. In your face!
Trauma. — April 14, 2014
My hair used to be straight. Not completely. It had a little of that annoying random waviness to it that made it especially difficult to deal with the fact that my mother cut my hair throughout high school. But mostly straight. Then I had my two boys, and somehow they came out as a matched set, with this crazy-cute, blond, corkscrew- curly hair.
They didn't pass the blond up the tree. But they did hand up the curly. Especially post-Kid2, my hair has been curly. Sometimes just a little, but some days -- some days crazy ringlet curly. I've told the boys so often, this is the curly hair they gave me.
I just had Craig cut me a lock of my hair, as a keepsake. Then I got Kid1 out of bed so he could cut a lock for himself, too. All of a sudden I had the overwhelming drive that it had to be tonight. Tomorrow starts some of the pre-drugs specific to the chemotherapy (cycle 1 starts Wednesday) and I wanted to keep pre-chemo hair. Not too much of it. Just enough to remember. So that when it comes back in next year, agonizingly slowly, I can still hold onto these pieces and remember the curly hair my little boys gave me.
I don't know what it will look like when it comes back in. Maybe it will look a lot the same and maybe it won't. But this story is part of my family now. I couldn't let it all go.
There is so much trauma going on here that doesn't involve the surgeon's knife.
A recap. — April 18, 2014
So I am planning two journal entries today. This one will be a recap of my mini Facebook "live-blog" for people who aren't on FB but are following here, so they can see what happened on Wednesday. Then I thought I would update you all on the rest of it in another post.
Here is the recap:
Caption of the picture of me at the gym:
It's C-day. I've been up since 1 am, just too wired on stress and dexamethasone to sleep, notwithstanding a double dose of sedatives. My trainer took this picture of me working out yesterday morning. This is what I think I look like, "fighting" back against my cancer. Later this morning, I'll get some pictures of what I look like while my formidable medical team launches an assault against my cancer. I have thoughts fomenting on the use of the word "fighting" in relation to cancer which will pour out of me sooner or later on caringbridge.
9:00 am: Can I skip this part? 2014? Let's just go straight to 2015.
9:28 am: Port accessed, blood drawn. This is officially happening. [See picture of me with port accessed. As Bill put it in a FB comment, I was sporting a "bemused" expression, but I think actually, it was the Ativan...] 12:04 pm: Moment of first poison entry: 1203p. Taxotere. Die, cancer, die!
1:45 pm: Moment of 2nd poison entry: 131pm. Cytoxan. Die, more cancer cells. Die die die! 2:28 pm: And... We're done. Let the side effects commence.
End of recap. Other post will take longer to prepare as I have to think, and I will be using phrase "chemo brain" as often as I can in the coming months.
9:00 am: Can I skip this part? 2014? Let's just go straight to 2015.
9:28 am: Port accessed, blood drawn. This is officially happening. [See picture of me with port accessed. As Bill put it in a FB comment, I was sporting a "bemused" expression, but I think actually, it was the Ativan...] 12:04 pm: Moment of first poison entry: 1203p. Taxotere. Die, cancer, die!
1:45 pm: Moment of 2nd poison entry: 131pm. Cytoxan. Die, more cancer cells. Die die die! 2:28 pm: And... We're done. Let the side effects commence.
End of recap. Other post will take longer to prepare as I have to think, and I will be using phrase "chemo brain" as often as I can in the coming months.
How things have changed. -- April 18, 2014
So far my only for-sure side effect is fatigue, but man did it hit hard last night - wham at about 510, I hit the wall. Having never achieved that before from excessive working out or the like, it was difficult to comprehend. I basically sat comatose in front of the television with the kids until Craig got home and warmed up our dinner (thanks Robin!) and then promptly went to bed. I probably would have just left the kids unattended and gone to bed without dinner, except for some of these pesky medicines I need to take with food. But the idea of actually moving from the couch to the kitchen to put something in my mouth and then chew it was rather overwhelming. And slept for shit, because of the dexamethasone and of course, because Kid2 is my son. But at least that was the last dose of dexamethasone until cycle 2 starts in a couple weeks.
I think maybe sort of maybe I'm feeling a little nausea, but maybe not. I'm going to take a nap here soon and see how it feels when I wake up.
So far my only for-sure side effect is fatigue, but man did it hit hard last night - wham at about 510, I hit the wall. Having never achieved that before from excessive working out or the like, it was difficult to comprehend. I basically sat comatose in front of the television with the kids until Craig got home and warmed up our dinner (thanks Robin!) and then promptly went to bed. I probably would have just left the kids unattended and gone to bed without dinner, except for some of these pesky medicines I need to take with food. But the idea of actually moving from the couch to the kitchen to put something in my mouth and then chew it was rather overwhelming. And slept for shit, because of the dexamethasone and of course, because Kid2 is my son. But at least that was the last dose of dexamethasone until cycle 2 starts in a couple weeks.
I think maybe sort of maybe I'm feeling a little nausea, but maybe not. I'm going to take a nap here soon and see how it feels when I wake up.
Speaking of medicines, I have been amazed at the arsenal of pharmaceuticals that have invaded my life. I find it fascinating and am going to share it all with you. I am amazed I can even keep it straight, but I have purchased some nifty pill-dispensers for the various purposes. Thank goodness I don't have to be concerned about HIPPA when I am the patient disclosing the information! Here goes, in kind of random order:
Pre-cancer: daily vitamin D supplement for deficiency. occasional unisom for sleep.
post-cancer:
Daily vitamin D for deficiency.
taxotere and cytoxan - these are the chemo meds we're using. (not pictured)
lots of saline solution to push everything into my heart.
Unisom ain't cuttin' it. Tried ambien. Ain't cutting it. Now using clonazepam at night. Ativan as needed for anxiety, and in a higher strength for the nausea, if and when it comes.
Also, ativan by IV during chemo for nausea and to calm me the fuck down more. (not pictured) Aloxi for nausea, by IV during chemo (not pictured)
Emend for nausea, by IV during chemo. (not pictured)
benadryl - to prevent allergic reaction to Taxotere (not pictured) castor oil - to rub on all the scars to help them heal better.
Emla cream (lidocaine/prilocaine) to numb up my skin above the port, so that they can inject lidocaine with less pain, so that they can put the fat ass needle into the port with no pain. I gotta say - didn't feel that fat ass needle go in.
Lexapro for anxiety and to combat loss of appetite, which has me down 10lbs already. I understand chemo bloat will bring me back those 10lbs in short order.
dexamethasone (steroid) to prevent allergic reactions to Taxotere, one of my chemo drugs. this is for three days (chemo day, day before, day after) and this really fucks up my sleep.
Hydrocodone for pain.
Pepcid for excess stomach acid. Prochlorperzine for nausea if/when.
gabapentin for nerve pain (still from original surgery). ondansetron (zofran) for nausea if/when.
advil for pain, if/when.
colace and ployethylene glycol (miralax). if you have to ask what these are for, you're lucky.
L-glutamine. A LOT of L-glutamine. It might help prevent or alleviate peripheral neuropathy that is a side effect of Taxotere. It may not.
Neualsta - a shot in the belly the day after chemo, so that my bone marrow tries its best to make more white blood cells after the chemo poisons tell it to stop doing that. (not pictured)
Claritin - to alleviate the deep bone pain that will result from the neulasta.
biotene - mouth rinse for when I get dry mouth and sores from the chemo meds. I haven't opened this yet, but I feel like I'm about to need to.
omni-gel flouride gel - to give my teeth some extra protection from the dry mouth effects on tooth enamel. digestive enzyme
lipids (basically fish oil) multivitamin/mineral supplement calcium/magnesium supplement.
These last four are from the naturopath. Altogether I'm popping 12 of these naturpath pills a day. I find it a bit sketchy, because they are really expensive and he owns the company that makes them. But they are safe for immune-compromised people (like me) and my surgeon and oncologist both said that he's a great naturopath and these things will make my systems keep working while the drugs battle the cancer... and I also learned that they are recommended to cancer patients by other naturopaths who don't have a conflict of interest in making money off the brand they prescribe... so I basically feel like I have to take them, because right now I'm taking anything that gives me a 0.1% chance of feeling better.
Some of these at night, some in the morning. Some with meals, some on an empty stomach. Some in the "middle of your meal." Good thing I like being organized, because this is stretching even my powers pretty tight.
OK, chemo brain. Ciao.
Facebook post -- April 19, 2004
Me: But the port still hurts. It's been a week. And I just slept three hours and I ache all over. *whine* *grumble* Craig: Well, yeah. I mean, it's going to take a while. You're not Wolverine.
Through the Wringer. — April 23, 2014
Logistical stuff first, then filling you in on the haps:
Meals: Round 2 starts May 7. The freaking meals have been awesome and appreciated and really rock our world. I just created requests for May 7-13 right here on caringbridge again, in the planner tab. Thank you in advance for signing up to save our evenings.
Jazz up my ears!: (cross post from Facebook) Miss me? Come say hi! Darcy and Amy are graciously opening their house (which is near my house) up on May 4 in the afternoon for people to come and rub my fuzzy and/or bald head, and if you like, jazz it up with something sparkly. Drop in some time between 3 and 6. If you think you might stop by, please let us know in the Doodle (link below), so that we can be in the right range for snacks etc. (No need to respond with time you think you're coming, that you can't come, etc., it's really casual. Location details in the Doodle.) Feel free to tell people you're keeping posted on my haps who might not be linked up with me online but might want to stop by. I'd love to see people, and I start round two (of six) a few days after this par-tay and then, I will not want to see any of you again for a while. [link removed]
The Haps: Wow, that was a shitty week.
On the plus side, I can lay off the L-glutamine now until the next cycle, which is a relief. Yay! Also, I am weaning off the gabapentin (should be done by week's end) because my arm nerve pain is abating! Now it's like a big ole bruise from armpit to elbow, but before if a feather touched my arm, it felt like it was being jabbed with a red hot poker. (Note that my arm isn't actually bruised - but my nerves are still really confused.)
On the down side, I had some poison pumped into my heart with predictable results. You know that scene from the Princess Bride, where Count Rugen has Wesley in the torture contraption, and he turns the dial up to the lowest setting, and Wesley writhes in pain, and then Count Rugen says, "As you know, the concept of the suction pump is centuries old. Really that's all this is except that instead of sucking water, I'm sucking life. I've just sucked one year of your life away. ... What did this do to you?" and then Wesley just moans? Well, last week felt like the OTHER part of the movie, where Prince Humperdinck turns that fucker up all the way to the highest setting and kills Wesley.
One afternoon I lay in bed for four hours, and I could feel my bones. I don't mean touch them from the outside and think "hey that hard thing under my skin is a bone." I mean, I was internally aware of where each bone in my body was. I felt that I had multiple plates of bone in my skull. I could feel the presence of two bones in each forearm. I could feel the existence of individual bones in my body from the inside out, as bones. This process was not pleasant, was very deep, and it lasted most of the week. I went to bed at 630 a few times. It didn't seem to help. Nothing helped but the passage of time, and sometimes my walk helped. A bit. I felt so tired for days at a time, I couldn't even read my Regency romance novel. Regency. Romance. Novel. You realize how little brain power this takes, people? I didn't have it.
I had various other ailments, including thrush (yay! more medicine bottles!) which according to my oncologist, should resolve any minute now. Because this is magic week. Today I feel pretty good (!!!!!). I still have bone pain, and fatigue, and overall achy miserableness, but I have energy. It feels like magic. Like my vitality was suddenly taken and is being rather (but not quite as) suddenly restored.
I had blood tests done today, and my white blood counts are through-the-roof awesome. The oncologist is excited, because she explained that although the blood counts will stop being quite so awesome from cycle to cycle, the fact that they are so awesome now means that my body will hopefully be able to sustain the full six cycles she wants to give me (rather than having to stop at four or five cycles).
My other doctor (Dr. Zucker, who makes me happy just by existing) is pleased that I walked for an hour each day. Some days I walked more, which is a no-no. An hour tops, because my body's signals aren't the same as before, and we don't want me to misunderstand this feeling of regained strength, overdo it, and crash lower than low. I can't recover like you reg'ler folk.
Tomorrow, tomorrow - tomorrow if I feel up to it, I might go to the gym again. Craig is planning to wake up at his normal time and go to work (out of the house before kids wake up). I will take the boys to school. This will mark the first day, since March 10, that our daily routine will resemble anything like our pre-cancer routine.
I actually think I might do some legal work next week. Last week the thought crossed my mind several times that there was no way my brain could ever function again. And right now I'm thinking, where was I on that particular client matter? This, my friends, is progress!
The next cycle starts May 7. I'm not excited about it, but I am excited to kill more possibly roaming cancer cells. I know a bit more what to expect, which is in some ways better and in some ways worse. It's going to be harder because the fatigue will be worse. It's going to be harder because I will start looking outwardly like a cancer patient next week when my hair goes. I don't know how that feels yet. I'm ruminating on how that feels. I've been thinking about it as I go for my walks and pass people - they don't know I'm a cancer patient, but next week, if they pay attention, they will guess.
Most people don't pay attention most of the time. So most people might not notice. But when you're feeling super duper crappy it is really amazing how much a nice smile or a nice gesture make a difference in your life. (Like at the grocery store last week, someone offered to walk my empty cart back at the exact moment that walk back to the cart corral was looking like a mile.)
I know some people will be extra nice to me once I start looking like a cancer patient. Do me a favor this week - be extra nice to someone who doesn't look like a cancer patient. Because you never know.
Facebook post -- April 25, 2004
I feel f*cking fantastic today.
Facebook post -- April 29, 2004
I do appreciate the flowers y'all have been sending. But this here haircut is the flowers Nigel A[.] sent. L.O.B.!
Pre-cancer: daily vitamin D supplement for deficiency. occasional unisom for sleep.
post-cancer:
Daily vitamin D for deficiency.
taxotere and cytoxan - these are the chemo meds we're using. (not pictured)
lots of saline solution to push everything into my heart.
Unisom ain't cuttin' it. Tried ambien. Ain't cutting it. Now using clonazepam at night. Ativan as needed for anxiety, and in a higher strength for the nausea, if and when it comes.
Also, ativan by IV during chemo for nausea and to calm me the fuck down more. (not pictured) Aloxi for nausea, by IV during chemo (not pictured)
Emend for nausea, by IV during chemo. (not pictured)
benadryl - to prevent allergic reaction to Taxotere (not pictured) castor oil - to rub on all the scars to help them heal better.
Emla cream (lidocaine/prilocaine) to numb up my skin above the port, so that they can inject lidocaine with less pain, so that they can put the fat ass needle into the port with no pain. I gotta say - didn't feel that fat ass needle go in.
Lexapro for anxiety and to combat loss of appetite, which has me down 10lbs already. I understand chemo bloat will bring me back those 10lbs in short order.
dexamethasone (steroid) to prevent allergic reactions to Taxotere, one of my chemo drugs. this is for three days (chemo day, day before, day after) and this really fucks up my sleep.
Hydrocodone for pain.
Pepcid for excess stomach acid. Prochlorperzine for nausea if/when.
gabapentin for nerve pain (still from original surgery). ondansetron (zofran) for nausea if/when.
advil for pain, if/when.
colace and ployethylene glycol (miralax). if you have to ask what these are for, you're lucky.
L-glutamine. A LOT of L-glutamine. It might help prevent or alleviate peripheral neuropathy that is a side effect of Taxotere. It may not.
Neualsta - a shot in the belly the day after chemo, so that my bone marrow tries its best to make more white blood cells after the chemo poisons tell it to stop doing that. (not pictured)
Claritin - to alleviate the deep bone pain that will result from the neulasta.
biotene - mouth rinse for when I get dry mouth and sores from the chemo meds. I haven't opened this yet, but I feel like I'm about to need to.
omni-gel flouride gel - to give my teeth some extra protection from the dry mouth effects on tooth enamel. digestive enzyme
lipids (basically fish oil) multivitamin/mineral supplement calcium/magnesium supplement.
These last four are from the naturopath. Altogether I'm popping 12 of these naturpath pills a day. I find it a bit sketchy, because they are really expensive and he owns the company that makes them. But they are safe for immune-compromised people (like me) and my surgeon and oncologist both said that he's a great naturopath and these things will make my systems keep working while the drugs battle the cancer... and I also learned that they are recommended to cancer patients by other naturopaths who don't have a conflict of interest in making money off the brand they prescribe... so I basically feel like I have to take them, because right now I'm taking anything that gives me a 0.1% chance of feeling better.
Some of these at night, some in the morning. Some with meals, some on an empty stomach. Some in the "middle of your meal." Good thing I like being organized, because this is stretching even my powers pretty tight.
OK, chemo brain. Ciao.
Facebook post -- April 19, 2004
Me: But the port still hurts. It's been a week. And I just slept three hours and I ache all over. *whine* *grumble* Craig: Well, yeah. I mean, it's going to take a while. You're not Wolverine.
Through the Wringer. — April 23, 2014
Logistical stuff first, then filling you in on the haps:
Meals: Round 2 starts May 7. The freaking meals have been awesome and appreciated and really rock our world. I just created requests for May 7-13 right here on caringbridge again, in the planner tab. Thank you in advance for signing up to save our evenings.
Jazz up my ears!: (cross post from Facebook) Miss me? Come say hi! Darcy and Amy are graciously opening their house (which is near my house) up on May 4 in the afternoon for people to come and rub my fuzzy and/or bald head, and if you like, jazz it up with something sparkly. Drop in some time between 3 and 6. If you think you might stop by, please let us know in the Doodle (link below), so that we can be in the right range for snacks etc. (No need to respond with time you think you're coming, that you can't come, etc., it's really casual. Location details in the Doodle.) Feel free to tell people you're keeping posted on my haps who might not be linked up with me online but might want to stop by. I'd love to see people, and I start round two (of six) a few days after this par-tay and then, I will not want to see any of you again for a while. [link removed]
The Haps: Wow, that was a shitty week.
On the plus side, I can lay off the L-glutamine now until the next cycle, which is a relief. Yay! Also, I am weaning off the gabapentin (should be done by week's end) because my arm nerve pain is abating! Now it's like a big ole bruise from armpit to elbow, but before if a feather touched my arm, it felt like it was being jabbed with a red hot poker. (Note that my arm isn't actually bruised - but my nerves are still really confused.)
On the down side, I had some poison pumped into my heart with predictable results. You know that scene from the Princess Bride, where Count Rugen has Wesley in the torture contraption, and he turns the dial up to the lowest setting, and Wesley writhes in pain, and then Count Rugen says, "As you know, the concept of the suction pump is centuries old. Really that's all this is except that instead of sucking water, I'm sucking life. I've just sucked one year of your life away. ... What did this do to you?" and then Wesley just moans? Well, last week felt like the OTHER part of the movie, where Prince Humperdinck turns that fucker up all the way to the highest setting and kills Wesley.
One afternoon I lay in bed for four hours, and I could feel my bones. I don't mean touch them from the outside and think "hey that hard thing under my skin is a bone." I mean, I was internally aware of where each bone in my body was. I felt that I had multiple plates of bone in my skull. I could feel the presence of two bones in each forearm. I could feel the existence of individual bones in my body from the inside out, as bones. This process was not pleasant, was very deep, and it lasted most of the week. I went to bed at 630 a few times. It didn't seem to help. Nothing helped but the passage of time, and sometimes my walk helped. A bit. I felt so tired for days at a time, I couldn't even read my Regency romance novel. Regency. Romance. Novel. You realize how little brain power this takes, people? I didn't have it.
I had various other ailments, including thrush (yay! more medicine bottles!) which according to my oncologist, should resolve any minute now. Because this is magic week. Today I feel pretty good (!!!!!). I still have bone pain, and fatigue, and overall achy miserableness, but I have energy. It feels like magic. Like my vitality was suddenly taken and is being rather (but not quite as) suddenly restored.
I had blood tests done today, and my white blood counts are through-the-roof awesome. The oncologist is excited, because she explained that although the blood counts will stop being quite so awesome from cycle to cycle, the fact that they are so awesome now means that my body will hopefully be able to sustain the full six cycles she wants to give me (rather than having to stop at four or five cycles).
My other doctor (Dr. Zucker, who makes me happy just by existing) is pleased that I walked for an hour each day. Some days I walked more, which is a no-no. An hour tops, because my body's signals aren't the same as before, and we don't want me to misunderstand this feeling of regained strength, overdo it, and crash lower than low. I can't recover like you reg'ler folk.
Tomorrow, tomorrow - tomorrow if I feel up to it, I might go to the gym again. Craig is planning to wake up at his normal time and go to work (out of the house before kids wake up). I will take the boys to school. This will mark the first day, since March 10, that our daily routine will resemble anything like our pre-cancer routine.
I actually think I might do some legal work next week. Last week the thought crossed my mind several times that there was no way my brain could ever function again. And right now I'm thinking, where was I on that particular client matter? This, my friends, is progress!
The next cycle starts May 7. I'm not excited about it, but I am excited to kill more possibly roaming cancer cells. I know a bit more what to expect, which is in some ways better and in some ways worse. It's going to be harder because the fatigue will be worse. It's going to be harder because I will start looking outwardly like a cancer patient next week when my hair goes. I don't know how that feels yet. I'm ruminating on how that feels. I've been thinking about it as I go for my walks and pass people - they don't know I'm a cancer patient, but next week, if they pay attention, they will guess.
Most people don't pay attention most of the time. So most people might not notice. But when you're feeling super duper crappy it is really amazing how much a nice smile or a nice gesture make a difference in your life. (Like at the grocery store last week, someone offered to walk my empty cart back at the exact moment that walk back to the cart corral was looking like a mile.)
I know some people will be extra nice to me once I start looking like a cancer patient. Do me a favor this week - be extra nice to someone who doesn't look like a cancer patient. Because you never know.
Facebook post -- April 25, 2004
I feel f*cking fantastic today.
Facebook post -- April 29, 2004
I do appreciate the flowers y'all have been sending. But this here haircut is the flowers Nigel A[.] sent. L.O.B.!
Facebook post — April 29, 2004
Me: I look totally different. I look so different. Craig: You look way more bad-ass now, though.
Hi peeps! — May 3, 2014
Hi! I am very excited to see some of you tomorrow. Here is the link to the Doodle with the address. [removed] Kids are OK to come.
You have to click on the "Photos" tab above to see the photos, and if you do it that way, you can see the captions at the same time. Make sure to go to the second page to see the rest of them.
So I had a plan to go to Gary Manuel Salon on Tuesday this week to get my hair cut to donate to Pantene Beautiful Lengths. (Funny side note - when I'm not bald, I get my hair cut at whichever of Great Clips,
SuperCuts, or Hair Masters is running a special. To go bald, I make an appointment at a shi-shi salon. But they provide all these services complimentary to cancer patients, because they are cool.) Then we were at the zoo on Saturday and it just kind of started pulling out. Like 10-20 hairs each time I ran my hands through my head. It wasn't going to hang around until Tuesday. So instead we had a little shindig at home on Sunday afternoon and Craig buzzed it down for me.
Some of you have seen on Facebook the super cool pictures of what happened next - Nigel Avilez hooked me up with his barbershop to get the Seahawks logo and the 12th Man logo designed into the buzz. Super awesome!! Unfortunately that only lasted three days, and I am down to nothing now. (Still patchy hair, and you can see faint traces of the designs, but it is all buzzed down to my scalp. For a while there it was pretty weird/cool/surreal because I could just pull hair out, and I got a lot off using a lint roller). But.... I sent a before and after picture to the Seattle Seahawks with a little summary of the Down Low - and THEY SENT ME A CARD! Loving it! Awesomeness. So cool, my friend Nichole Chiappini who is certifiably not a football fan is now a Seahawks Fan.
And last week, or maybe two weeks ago, Kristine Kuch and I went up to the Providence Regional Cancer Center up in Everett, where we found a really kick ass wig at the wig bank (it was even a real-hair wig by Pantene Beautiful Lengths, so that is going full circle!). (Which Gary Manuel Salon then trimmed to perfection at my previously scheduled appointment, and gave me a head massage and arm massage.) Plus, Kristine hooked me up with a super cool blue wig, because she is the BEST. All in all, the hair thing was and continues to be awesome, minus the couple of times the short pieces just kept falling out during my showers and basically sticking all over my body. That was not awesome. And it kind of hurts and is itchy. But whatever.
My dad just bought me some really cute hats today, and that is awesome. And Kristine's mom Rosemary sent me a whole bunch of head wear of all different styles. So fun! She is so supportive.
The other haps: I've been going back to my gym (bFit Bellevue [ed. note: now Sweat Equity]), best gym in the world, if you don't live close enough to go there, I feel bad for you) every day since last Thursday (so 10 days in a row now), and I get to go tomorrow and Monday too. I am required to keep my intensity lower so I don't over-do it, and omit moves that involve pectoral muscles. But Nick Merrill is the best trainer ever and somehow manages to keep track of me during the workout and sub in other moves for me even when there are 20 other people there also needing attention.
It feels so GOOD to be back at the gym. I feel pretty much normal, except I sleep more (subject to Kid2) and am busy with appointments all the time and can't concentrate that well. But I managed a little bit of work, and I think next cycle that will be easier (the working part) because I know what to expect now, and some of the stuff (hair) won't happen again.
It's going to get harder physically each cycle, but as you can see from the photos (coming soon after I post this) - the Seahawks Secondary has my back. How can I fail? And if you haven't seen it yet, check out the new
Seattle Cancer Institute spot featuring Richard Sherman. That's where I am being treated. I think I'll write him a letter.
http://mynorthwest.com/11/2509211/Richard-Sherman-talks-trash-about-cancer-in-new-video
I'm not looking forward to my next cycle of chemo, except I also am looking forward to it, because that's how the cancer dies, if it isn't dead yet. So yeah. Bring it.
I'm going to upload a bunch (maybe too many?) of photos from the hair cutting day, my cute wigs (serious and funky), my cute kids, my cute husband, one of my cute new hats, and my bald head, which is thankfully well- shaped.
Hope to see you tomorrow! I feel like I just rambled, but I am feeling bubbly and excited. How often do you get a card from the Seahawks, you know?!
Love, Natasha
Facebook post — May 14, 2004
You know what rocks? My bone marrow. That's what. Booyah baby!
Howzit. — May 14, 2014
Hello people! Cycle 2 is in the books.
I had my week-after blood count check today, and my bone marrow is still kicking. Woot! I have a lot of neutrophils. http://lmgtfy.com/?q=what+happens+if+you+have+low+neutrophil+counts&l=1 Thank goodness, because prophylactic use of clotrimazole tablets notwithstanding, I got thrush again (mouth hurts, ouch), proving that chemo *is* working because it did kill the lining of my mouth, that I *did* have low neutrophil counts that allowed the yeast to grow, and that since my blood counts are now good, that (and my newly- prescribed fluconazole for my growing pharmacy) should soon return my mouth to normal. Apparently my nadir (just google it, people) is probably 2 days ago.
This round was much better than last round for a few reasons.
1) I did not have to lose my hair again. Although I really didn't mind that part (cutting it off) that much. I think I mourned the hair loss right before chemo cycle 1, when I knew it was going to happen, and it felt like I "lost" my hair the moment when they put the chemo drugs in the first time, and that it actually falling out wasn't as stressful as knowing it was going to happen. Once it was done, it was done, even though outwardly it pretended to not be done yet. And have you seen my head people? I should post another picture. My head is perfectly symmetrical. I have some sort of superiority complex about it. It's sensitive to the sun, which is hampering my style a bit. I like rocking the bald look. I'm hoping more of what's left of the hair bits comes out next week, so I can be a bit more smooth-shiny. I actually overdid it on the use of a lint roller trying to get more little pieces out. I need to dial it back on that lint roller.
2) I took lots of Advil. It is an ibuprofen miracle around here. Last cycle, it went like this. Natasha: Craig, everything really really hurts. I feel like I am breaking inside. Can you get me some Advil? Craig: here. Natasha: Thanks. Repeat randomly after writhing about. This cycle, it went like this: Breakfast: Advil. Lunch: Advil. Dinner: Advil. Bedtime: Advil (or Tylenol, if bedtime ~= dinnertime). This reduced my pain from about an 8-9 out of 10 to about a 4-5 out of 10. Man. That was better. I think I was back to my good energy spirits a day earlier than last time (Tuesday, rather than Wednesday). And I am feeling fucking fantastic today, which is a day earlier than last time too.
3) People made some really delicious food! This isn't so different from last time, actually, but it is still really nice. And Melissa's pulled pork... almost worth getting cancer to get a delivery of that! Man oh man. My appetite is back, with a vengeance. I won't be missing those 10 lbs much longer. I think 5 or 6 of them are back, and it's not "chemo weight" it's just "my friends bring me delicious food and I am feeling pretty good and want to eat it up yum yum yum" weight.
4) I feel like I am getting an "A" at being a cancer patient. I'm pretty much in a good mood all the time, even when I feel shitty. (I checked, and my therapist does not think I am crazy.) (I mean this literally. I asked her if I was going crazy, because I am pretty damn happy, and I have cancer and am in the middle of some pretty unpleasant chemotherapy, right? She said she thinks I am healthy.) I get really cranky sometimes, mostly when my batteries run out, and they run out really early some nights. But then I'm OK again pretty soon. And I have some super cute hats and earrings (you people have good taste in earrings!). I really like the exercise/PT program that's part of my treatment plan (the so-called "ACTIVE" program). It makes me happy. I like that there are so many people who are really smart taking care of me. And I get to go to the gym again tomorrow, until two days before my next cycle.
That's the report. I don't think I'll post much more unless something awesome happens, but I might post a picture or two of my rocking head and my cool new hat rack. I love me some organized hats. It was driving me batty not having an appropriate place to hang them all up. :-) And we'll do another food calendar. That food really helps. Not just because we need to eat, but because we feel the love.
Craig says hi too. Someone asked how he's doing. I think he's doing great! He's the best. He's coping pretty well, I think. We laugh a lot. But if you want to know more, you should ask him. He's pretty friendly.
Love, Natasha
Accoutrements. — May 19, 2014
Hi peeps!
Notice: next meal planner dates are up. End notice. Check out the picture of my hat rack!
I installed it myself, although Craig did the hunting and acquiring of the actual racks.
As pictured it has 17 hats on it. Two (not pictured) are in the laundry. Some I had from before, some are perfect hand-me-acrosses from Paige, some are from my dad, some came from online places that give stuff to you free if you have cancer, and some came from people who knit hats and stick them in bins at Swedish that you can just take. I'm set for all seasons! I still check out the bins now and again. You never know when you might find the most amazing hat.
I also have some fabu head covers that tie around from Kristine's mom. Those aren't pictured either. If I put them on the rack, they would just serve as convenient handles for Kid2 to destroy the covers/the rack/the wall/the planet/all of the above.
I think I've only purchased one for myself. It's like the universe is just taking care of things.
I've been going about bald a lot. I love it, although I hate the sunscreen slathering. I am planning to get a henna crown soon. I have to shave my head for that, which for some reason I find spooky. And I hear the henna crown only last two weeks, alas. That's all she wrote tonight. The end.
Halfway? — May 28, 2014
Cycle three of chemo today. Seriously, the worst part of the actual drugging itself is being awake since 230a from the steroids, three days in a row. I popped another Ativan when I woke up, which just means I am awake and mellow... The next worst part is the coming week, but I'm living in the now! Let next week worry about next week.
My nails are starting to get discolored. Dark underneath, like bruised nail beds. Not all of them yet. I wonder what will transpire there. Hopefully they won't all fall out. Yuck.
Once we get home today, we'll be halfway through chemo. I kind of wonder if that is true, or if we should really mark that event after the resulting week of yuck is over. We're marking it today at least in part; we're giving Kid1 a cool Lego set because he's a great kid and has been really sweet and supportive the past few months.
The hardest thing for Kid1 is when I go to bed before him and we miss cuddle time. I'm trying to prevent that by napping 2 hours a day, when I can, so that I can stay up past 8. Daddy is a pretty good substitute in a pinch, but Kid1 has articulately clarified that he's no Mommy.
Kid2 will get extra love too. And newly-acquired, first-time-in-the-Black-household finger paint tubs. This is a Big Deal. One of my favorite parts of day care is that Kid2 gets to do messy art *there*. He likely won't notice what a big treat this is for him, but I will. Oh yes I will.
Craig does the sweetest thing. When we go to the hospital for blood draws from my port, I get pretty anxious. The first couple of times, the techs told me a bunch of bad punny jokes. It really worked to keep me distracted and then the poke wasn't so bad. So when they ran out of jokes I hadn't heard before, Craig scoured the interweb and curated his own list of bad jokes for me. Because he is the best husband who ever existed.
Random funny anecdote: I constantly find myself wrapping my head in a turban after my shower. My arm muscle memory has so far declined to adapt to no hair. Of course the turban falls off on its own accord rather promptly, having no anchor. And yet again finds itself back up there, crowning my scalp after the next shower.
Speaking of which, everyone (read: people on online forms going through cancer-related hair loss) mentions how wonderfully quick showering is, hair-free. Dear World: I *liked* long showers. But not just standing there. I liked pretending I believed my long shower was necessary to get clean. One of my few ecologically non-best- practice habits. Now I feel like I am wasting water because... Well... Soap and done. So I've taken to shower gels and a bath puff to extend my shower time "productively." No shaving (positive side effect!) so that cuts time too. Other ideas for keeping busy while allowing water to course down the drain are welcome.
End of random middle-of-the-night musings. Thanks for tuning in.
Halfway. — June 4, 2014
This morning I had my week-after-chemo blood test, and once again my bone marrow is taking care of me. I'm
again clear of the danger of low blood counts for two more weeks, before my next infusion on June 18 (Round 4). I've populated the meal planner schedule for Round 4, if you'd like to sign up to add more work to your busy life and feed my family. (I can't thank you guys enough for the meal deliveries. Some people are doing more than one, which is extra love! You guys are amazing. Thank you thank you.)
This round was the toughest, fatigue-wise. I am still feeling it pretty hard right now, whereas last round, Wednesday was my turnaround point. It's OK, because I know it's normal, but it's not OK, because I am so tired, dammit. And I got thrush again, and it seems like that will just happen three more times. No matter how much drugging they do to avoid it.
My mood is swinging. I was pretty sure that I was going to be excited to be halfway done. But instead I've had a really tough mental day. I was chatting with Paige about it earlier and she about summed it up perfectly - I feel like I have summoned all my energy to do what I have done so far, and finding the energy to do it again doesn't seem feasible. It just somehow doesn't seem possible that, with how I feel right now being the "starting point," I'm going to do three more rounds equal to the three that have gone. I'd say it feels insurmountable.
The nurse today was very understanding and supportive. This is apparently a common feeling at the halfway point. I think the mismatch in my expectation (excitement) and reality (desolation) for the day just hit me really hard.
But then Craig gave me a hug and made a pretty good comparison to running sprints - he said that yesterday, he ran six sprints. And when he'd done three, he was just exhausted and felt like, no way he could do three more. But then he did one more. And then all of a sudden, he'd done 4 and there were only 2 left. And that felt doable. So I don't know if that feeling is what I'll get, but I'm just latching onto his energy and spirit and powering through (as if I have another option). And really most of the time, I'm OK. Today was tough.
Other good stuff happened! I got to spend several hours with Paulette yesterday (some of you may recall the picture of the Pink with Attitude quilt she made for me) who was in town. That was a big lift. And I got to see my friends Kim and Melissa for lunches this week, and so pretty much I have had three consecutive days of lunch love. I love hanging out with my people. You guys are the best.
I'm working on mindfulness meditation. I'll update on that when I get better at it.
Also, I got to help Paige organize all her medical paperwork from her Fucking Cancer, which I realize some people might not put in the "fun" column, but I love doing stuff like that. It was F.U.N.
I don't get to go to the gym tomorrow, because it is undergoing a Spring Spruce Up. More like a spring Tear-the- gym-to-pieces-and-rebuilt-the-shit-out-of-it. I walked by a few days ago and the floor was getting jack-
hammered and everything looked like a disaster. (Sorry, Nick, if you're reading this! It was scary messed up.) I am soooo addicted to that place, if it doesn't open back up on Monday on schedule I will shed tears. But since it is closed the next few days, I get to go work out with Craig tomorrow, who makes his own lunchtime field workouts near his office. And I bet I get some awesome hugs during that workout.
Something else super awesome happened. My cousin Diana has been really emotionally affected and supportive through this wonderful thing called Fucking Cancer. She had hair past her hips - and she cut it!!!!!!!!! and is donating it to Pantene Beautiful Lengths in my honor. She looks SO AMAZING. I've uploaded three of the photos she sent me (before, during, and after) from her cut of over 15" to donate. Somehow it's not letting me attach them to this post (see earlier posts on topic of how much CARINGBRIDGE SUCKS) but you can click on "photos" to see them. [ed. note: now simply see photo gallery, below.]
Me: I look totally different. I look so different. Craig: You look way more bad-ass now, though.
Hi peeps! — May 3, 2014
Hi! I am very excited to see some of you tomorrow. Here is the link to the Doodle with the address. [removed] Kids are OK to come.
You have to click on the "Photos" tab above to see the photos, and if you do it that way, you can see the captions at the same time. Make sure to go to the second page to see the rest of them.
So I had a plan to go to Gary Manuel Salon on Tuesday this week to get my hair cut to donate to Pantene Beautiful Lengths. (Funny side note - when I'm not bald, I get my hair cut at whichever of Great Clips,
SuperCuts, or Hair Masters is running a special. To go bald, I make an appointment at a shi-shi salon. But they provide all these services complimentary to cancer patients, because they are cool.) Then we were at the zoo on Saturday and it just kind of started pulling out. Like 10-20 hairs each time I ran my hands through my head. It wasn't going to hang around until Tuesday. So instead we had a little shindig at home on Sunday afternoon and Craig buzzed it down for me.
Some of you have seen on Facebook the super cool pictures of what happened next - Nigel Avilez hooked me up with his barbershop to get the Seahawks logo and the 12th Man logo designed into the buzz. Super awesome!! Unfortunately that only lasted three days, and I am down to nothing now. (Still patchy hair, and you can see faint traces of the designs, but it is all buzzed down to my scalp. For a while there it was pretty weird/cool/surreal because I could just pull hair out, and I got a lot off using a lint roller). But.... I sent a before and after picture to the Seattle Seahawks with a little summary of the Down Low - and THEY SENT ME A CARD! Loving it! Awesomeness. So cool, my friend Nichole Chiappini who is certifiably not a football fan is now a Seahawks Fan.
And last week, or maybe two weeks ago, Kristine Kuch and I went up to the Providence Regional Cancer Center up in Everett, where we found a really kick ass wig at the wig bank (it was even a real-hair wig by Pantene Beautiful Lengths, so that is going full circle!). (Which Gary Manuel Salon then trimmed to perfection at my previously scheduled appointment, and gave me a head massage and arm massage.) Plus, Kristine hooked me up with a super cool blue wig, because she is the BEST. All in all, the hair thing was and continues to be awesome, minus the couple of times the short pieces just kept falling out during my showers and basically sticking all over my body. That was not awesome. And it kind of hurts and is itchy. But whatever.
My dad just bought me some really cute hats today, and that is awesome. And Kristine's mom Rosemary sent me a whole bunch of head wear of all different styles. So fun! She is so supportive.
The other haps: I've been going back to my gym (bFit Bellevue [ed. note: now Sweat Equity]), best gym in the world, if you don't live close enough to go there, I feel bad for you) every day since last Thursday (so 10 days in a row now), and I get to go tomorrow and Monday too. I am required to keep my intensity lower so I don't over-do it, and omit moves that involve pectoral muscles. But Nick Merrill is the best trainer ever and somehow manages to keep track of me during the workout and sub in other moves for me even when there are 20 other people there also needing attention.
It feels so GOOD to be back at the gym. I feel pretty much normal, except I sleep more (subject to Kid2) and am busy with appointments all the time and can't concentrate that well. But I managed a little bit of work, and I think next cycle that will be easier (the working part) because I know what to expect now, and some of the stuff (hair) won't happen again.
It's going to get harder physically each cycle, but as you can see from the photos (coming soon after I post this) - the Seahawks Secondary has my back. How can I fail? And if you haven't seen it yet, check out the new
Seattle Cancer Institute spot featuring Richard Sherman. That's where I am being treated. I think I'll write him a letter.
http://mynorthwest.com/11/2509211/Richard-Sherman-talks-trash-about-cancer-in-new-video
I'm not looking forward to my next cycle of chemo, except I also am looking forward to it, because that's how the cancer dies, if it isn't dead yet. So yeah. Bring it.
I'm going to upload a bunch (maybe too many?) of photos from the hair cutting day, my cute wigs (serious and funky), my cute kids, my cute husband, one of my cute new hats, and my bald head, which is thankfully well- shaped.
Hope to see you tomorrow! I feel like I just rambled, but I am feeling bubbly and excited. How often do you get a card from the Seahawks, you know?!
Love, Natasha
Facebook post — May 14, 2004
You know what rocks? My bone marrow. That's what. Booyah baby!
Howzit. — May 14, 2014
Hello people! Cycle 2 is in the books.
I had my week-after blood count check today, and my bone marrow is still kicking. Woot! I have a lot of neutrophils. http://lmgtfy.com/?q=what+happens+if+you+have+low+neutrophil+counts&l=1 Thank goodness, because prophylactic use of clotrimazole tablets notwithstanding, I got thrush again (mouth hurts, ouch), proving that chemo *is* working because it did kill the lining of my mouth, that I *did* have low neutrophil counts that allowed the yeast to grow, and that since my blood counts are now good, that (and my newly- prescribed fluconazole for my growing pharmacy) should soon return my mouth to normal. Apparently my nadir (just google it, people) is probably 2 days ago.
This round was much better than last round for a few reasons.
1) I did not have to lose my hair again. Although I really didn't mind that part (cutting it off) that much. I think I mourned the hair loss right before chemo cycle 1, when I knew it was going to happen, and it felt like I "lost" my hair the moment when they put the chemo drugs in the first time, and that it actually falling out wasn't as stressful as knowing it was going to happen. Once it was done, it was done, even though outwardly it pretended to not be done yet. And have you seen my head people? I should post another picture. My head is perfectly symmetrical. I have some sort of superiority complex about it. It's sensitive to the sun, which is hampering my style a bit. I like rocking the bald look. I'm hoping more of what's left of the hair bits comes out next week, so I can be a bit more smooth-shiny. I actually overdid it on the use of a lint roller trying to get more little pieces out. I need to dial it back on that lint roller.
2) I took lots of Advil. It is an ibuprofen miracle around here. Last cycle, it went like this. Natasha: Craig, everything really really hurts. I feel like I am breaking inside. Can you get me some Advil? Craig: here. Natasha: Thanks. Repeat randomly after writhing about. This cycle, it went like this: Breakfast: Advil. Lunch: Advil. Dinner: Advil. Bedtime: Advil (or Tylenol, if bedtime ~= dinnertime). This reduced my pain from about an 8-9 out of 10 to about a 4-5 out of 10. Man. That was better. I think I was back to my good energy spirits a day earlier than last time (Tuesday, rather than Wednesday). And I am feeling fucking fantastic today, which is a day earlier than last time too.
3) People made some really delicious food! This isn't so different from last time, actually, but it is still really nice. And Melissa's pulled pork... almost worth getting cancer to get a delivery of that! Man oh man. My appetite is back, with a vengeance. I won't be missing those 10 lbs much longer. I think 5 or 6 of them are back, and it's not "chemo weight" it's just "my friends bring me delicious food and I am feeling pretty good and want to eat it up yum yum yum" weight.
4) I feel like I am getting an "A" at being a cancer patient. I'm pretty much in a good mood all the time, even when I feel shitty. (I checked, and my therapist does not think I am crazy.) (I mean this literally. I asked her if I was going crazy, because I am pretty damn happy, and I have cancer and am in the middle of some pretty unpleasant chemotherapy, right? She said she thinks I am healthy.) I get really cranky sometimes, mostly when my batteries run out, and they run out really early some nights. But then I'm OK again pretty soon. And I have some super cute hats and earrings (you people have good taste in earrings!). I really like the exercise/PT program that's part of my treatment plan (the so-called "ACTIVE" program). It makes me happy. I like that there are so many people who are really smart taking care of me. And I get to go to the gym again tomorrow, until two days before my next cycle.
That's the report. I don't think I'll post much more unless something awesome happens, but I might post a picture or two of my rocking head and my cool new hat rack. I love me some organized hats. It was driving me batty not having an appropriate place to hang them all up. :-) And we'll do another food calendar. That food really helps. Not just because we need to eat, but because we feel the love.
Craig says hi too. Someone asked how he's doing. I think he's doing great! He's the best. He's coping pretty well, I think. We laugh a lot. But if you want to know more, you should ask him. He's pretty friendly.
Love, Natasha
Accoutrements. — May 19, 2014
Hi peeps!
Notice: next meal planner dates are up. End notice. Check out the picture of my hat rack!
I installed it myself, although Craig did the hunting and acquiring of the actual racks.
As pictured it has 17 hats on it. Two (not pictured) are in the laundry. Some I had from before, some are perfect hand-me-acrosses from Paige, some are from my dad, some came from online places that give stuff to you free if you have cancer, and some came from people who knit hats and stick them in bins at Swedish that you can just take. I'm set for all seasons! I still check out the bins now and again. You never know when you might find the most amazing hat.
I also have some fabu head covers that tie around from Kristine's mom. Those aren't pictured either. If I put them on the rack, they would just serve as convenient handles for Kid2 to destroy the covers/the rack/the wall/the planet/all of the above.
I think I've only purchased one for myself. It's like the universe is just taking care of things.
I've been going about bald a lot. I love it, although I hate the sunscreen slathering. I am planning to get a henna crown soon. I have to shave my head for that, which for some reason I find spooky. And I hear the henna crown only last two weeks, alas. That's all she wrote tonight. The end.
Halfway? — May 28, 2014
Cycle three of chemo today. Seriously, the worst part of the actual drugging itself is being awake since 230a from the steroids, three days in a row. I popped another Ativan when I woke up, which just means I am awake and mellow... The next worst part is the coming week, but I'm living in the now! Let next week worry about next week.
My nails are starting to get discolored. Dark underneath, like bruised nail beds. Not all of them yet. I wonder what will transpire there. Hopefully they won't all fall out. Yuck.
Once we get home today, we'll be halfway through chemo. I kind of wonder if that is true, or if we should really mark that event after the resulting week of yuck is over. We're marking it today at least in part; we're giving Kid1 a cool Lego set because he's a great kid and has been really sweet and supportive the past few months.
The hardest thing for Kid1 is when I go to bed before him and we miss cuddle time. I'm trying to prevent that by napping 2 hours a day, when I can, so that I can stay up past 8. Daddy is a pretty good substitute in a pinch, but Kid1 has articulately clarified that he's no Mommy.
Kid2 will get extra love too. And newly-acquired, first-time-in-the-Black-household finger paint tubs. This is a Big Deal. One of my favorite parts of day care is that Kid2 gets to do messy art *there*. He likely won't notice what a big treat this is for him, but I will. Oh yes I will.
Craig does the sweetest thing. When we go to the hospital for blood draws from my port, I get pretty anxious. The first couple of times, the techs told me a bunch of bad punny jokes. It really worked to keep me distracted and then the poke wasn't so bad. So when they ran out of jokes I hadn't heard before, Craig scoured the interweb and curated his own list of bad jokes for me. Because he is the best husband who ever existed.
Random funny anecdote: I constantly find myself wrapping my head in a turban after my shower. My arm muscle memory has so far declined to adapt to no hair. Of course the turban falls off on its own accord rather promptly, having no anchor. And yet again finds itself back up there, crowning my scalp after the next shower.
Speaking of which, everyone (read: people on online forms going through cancer-related hair loss) mentions how wonderfully quick showering is, hair-free. Dear World: I *liked* long showers. But not just standing there. I liked pretending I believed my long shower was necessary to get clean. One of my few ecologically non-best- practice habits. Now I feel like I am wasting water because... Well... Soap and done. So I've taken to shower gels and a bath puff to extend my shower time "productively." No shaving (positive side effect!) so that cuts time too. Other ideas for keeping busy while allowing water to course down the drain are welcome.
End of random middle-of-the-night musings. Thanks for tuning in.
Halfway. — June 4, 2014
This morning I had my week-after-chemo blood test, and once again my bone marrow is taking care of me. I'm
again clear of the danger of low blood counts for two more weeks, before my next infusion on June 18 (Round 4). I've populated the meal planner schedule for Round 4, if you'd like to sign up to add more work to your busy life and feed my family. (I can't thank you guys enough for the meal deliveries. Some people are doing more than one, which is extra love! You guys are amazing. Thank you thank you.)
This round was the toughest, fatigue-wise. I am still feeling it pretty hard right now, whereas last round, Wednesday was my turnaround point. It's OK, because I know it's normal, but it's not OK, because I am so tired, dammit. And I got thrush again, and it seems like that will just happen three more times. No matter how much drugging they do to avoid it.
My mood is swinging. I was pretty sure that I was going to be excited to be halfway done. But instead I've had a really tough mental day. I was chatting with Paige about it earlier and she about summed it up perfectly - I feel like I have summoned all my energy to do what I have done so far, and finding the energy to do it again doesn't seem feasible. It just somehow doesn't seem possible that, with how I feel right now being the "starting point," I'm going to do three more rounds equal to the three that have gone. I'd say it feels insurmountable.
The nurse today was very understanding and supportive. This is apparently a common feeling at the halfway point. I think the mismatch in my expectation (excitement) and reality (desolation) for the day just hit me really hard.
But then Craig gave me a hug and made a pretty good comparison to running sprints - he said that yesterday, he ran six sprints. And when he'd done three, he was just exhausted and felt like, no way he could do three more. But then he did one more. And then all of a sudden, he'd done 4 and there were only 2 left. And that felt doable. So I don't know if that feeling is what I'll get, but I'm just latching onto his energy and spirit and powering through (as if I have another option). And really most of the time, I'm OK. Today was tough.
Other good stuff happened! I got to spend several hours with Paulette yesterday (some of you may recall the picture of the Pink with Attitude quilt she made for me) who was in town. That was a big lift. And I got to see my friends Kim and Melissa for lunches this week, and so pretty much I have had three consecutive days of lunch love. I love hanging out with my people. You guys are the best.
I'm working on mindfulness meditation. I'll update on that when I get better at it.
Also, I got to help Paige organize all her medical paperwork from her Fucking Cancer, which I realize some people might not put in the "fun" column, but I love doing stuff like that. It was F.U.N.
I don't get to go to the gym tomorrow, because it is undergoing a Spring Spruce Up. More like a spring Tear-the- gym-to-pieces-and-rebuilt-the-shit-out-of-it. I walked by a few days ago and the floor was getting jack-
hammered and everything looked like a disaster. (Sorry, Nick, if you're reading this! It was scary messed up.) I am soooo addicted to that place, if it doesn't open back up on Monday on schedule I will shed tears. But since it is closed the next few days, I get to go work out with Craig tomorrow, who makes his own lunchtime field workouts near his office. And I bet I get some awesome hugs during that workout.
Something else super awesome happened. My cousin Diana has been really emotionally affected and supportive through this wonderful thing called Fucking Cancer. She had hair past her hips - and she cut it!!!!!!!!! and is donating it to Pantene Beautiful Lengths in my honor. She looks SO AMAZING. I've uploaded three of the photos she sent me (before, during, and after) from her cut of over 15" to donate. Somehow it's not letting me attach them to this post (see earlier posts on topic of how much CARINGBRIDGE SUCKS) but you can click on "photos" to see them. [ed. note: now simply see photo gallery, below.]
Hi! — June 6, 2014
My energy is rebounding and I'm feeling much better today. Just wanted to send that out to into the ether, because a lot of you have been reaching out after my post of a couple of days ago with worry. Thanks for the worry! I am out and about and enjoying the sun.
Also, we're planning to be in Andover/Boston from Aug 13-23. Actually only 14-16, since we arrive late on the 13th, then we'll be going to Lake Winnipesauke for family camp on the 17. That is in between chemo and radiation. Radiation starts August 25. Radiation will be 6.5 weeks, daily except weekends. My understanding is that other than local side effects (which can be pretty gnarly), the major side effect of radiation is fatigue, which is extra intense if radiation comes after chemo.
I feel like this east coast trip is an ambitious undertaking, but will be worth it... I think... I hope. I hate long flights (yes, this counts as long) even sans cancer fatigue! I will be at my worst fatigue level for the trip. Yay?
Last time we went to that family camp, Kid1 was 8 months old and didn't sleep and puked and had... intestinal issues... all week. That sucked. And then a couple of years later, we tried family camp at Lake Wenatchee, and he screamed and ran around like a banshee in the no-electricity-dark-as-a-black-hole cabin for hours each night. We cut that trip short and drove home. But this time will be great!!!!!?! In any event, we're looking forward to seeing the Boston family gang and I am looking forward to the boys spending a week in the woods with their cousins.
The end for now.
Love, hugs, Natasha
On the chemo-road again.... — June 16, 2014
So this Wednesday starts cycle 4. Most people on my chemo regimen would be done with cycle 4, but I am Special and my cancer is Special so I get to have six cycles. Some people are just special. Deal with it.
Kristine is coming on Wednesday for my infusion, and Paige is too. Kristine is going to teach Paige and I how to use makeup. We both need serious help in this regard. Kristine has been trying to get me to use makeup since we met in 1993, so this is a real milestone. She is a Grade A Awesome Friend. I've known her forever.
My nails are hanging in there, so far. I have the slight slight slightest bit of peripheral neuropathy, so mild that Dr. Zucker (love him) isn't even worried about it. Almost dismissed it, without dismissing my feelings, which is an amazing skill. Somehow he made me not worry about it while at the same time feel like he cares about and validates how I feel. Patent that skill and sell it, dude.
This past cycle was a disaster. I "recovered" from cycle 1 at day 8, cycle 2 at day 7, and cycle 3... still feeling really exhausted, napping almost daily, it's a total bummer. I was all "woe is me" to Zucker, and he bucked me up a bit. I might have brought some of it on myself - the weekend after my blood counts came back good, Craig and I took the kids for a "hike." Which was more like a crawl, for the first 0.3 miles, because (a) we have kids, (b) there were caterpillars, (c) every foot along the way on the path, (d) each of which Kid1 had to point out, and (e) each of which Kid2 had to get super excited about. Especially the "little baby ones" which are "sooooo cute" aren't they "awwwwwwwwwwwwwww!" Which is actually really really cute, especially when your kids are so happy and have their curly heads bent together staring at a little bug, except that's not a hike.
So in the end, after some pretty potent whining from Kid2, Craig took the kids back down the path, and I took an alternate 2 mile loop around by myself. And I was so happy to be out there in nature and breathing the air and listening to the woods, I did some trail running. I've been learning about listening to the new messages my body is sending me about its chemo-capabilities, and it's not that I wasn't listening, but I distinctly remember saying in my head, "fuck it" and running that trail. And it was glorious and fun and I felt free and then the shit obviously hit the fan, because I'm still napping two hours every day and it's been almost the full three weeks between cycles and aaargh. BUT - I says to Zucker, I says, "that was stupid of me" and he says, yes he does - he says, "No, it wasn't stupid. You tested your limits, and you learned something. So now we know. You won't do that next time. And, that actually might not have been what made this cycle fatigue so bad, but it might have extended the tail of the fatigue. So we learned something, and let's see what happens next cycle." So yeah, he's one of my heroes.
Also, major crisis averted - my trainer left my gym (horror! disaster!) and for a couple of days I was freaking the FUCK OUT because I pretty much can't finish cancer treatment without my gym. I'm pretty good at freaking out, and I was doing it really well because he announced this bombshell kind of out of the blue after the gym was closed for a week, which was already crappy enough. But then it turns out he created his own new gym that he couldn't talk about until after he left the old gym (lawyers... I tell ya... they mess everything up) and everything is going to be FINE because he, his wife Liz, and everyone else I love at old gym is moving to new gym. This is new gym: http://www.sweatequitygym.com/
The coolest thing? My dad is buying me my new gym bag-to-be (because he is awesome) and it matches the new gym's colors. http://www.rei.com/product/863336/rei-vitality-gym-duffel-bag-womens (not the black one, the other one).That wasn't on purpose but that makes me happy. Serendipity.
Sometimes I think, man, having cancer is getting old. Like, wow, I am *still* having cancer treatment? What? Seriously.
Reading these still interesting? I hope so. Hang in there with me, people. Can't do it without you. Natasha
Facebook post — June 17, 2004
Naturopathic treatment now includes: eating a can of beets every other day. (yes, the normal size can. Yes, the whole can.) Eating a sweet potato every other day. Swishing my mouth with oregano essential oil (ouch! Stings!) three times a day. Drinking coconut water mixed with Recharge (hippie dippie version of gatorade) a few days around chemo time. And lots of pills. Woot. [EDIT: Also 1/2 to 1 tsp of dark molasses, daily.]
Facebook post — June 17, 2004
OH MY GOODNESS, people, I am high on steroids. HIGH. I am jumping off the fucking WALLS. This is going to be great when I show up all twitchy and shit at my "Mindfulness for People with Cancer" class this afternoon.
Facebook post — June 18, 2014
"From the point of view of mindfulness, as long as you are breathing, there is more right with you than wrong with you, even if you are sick or troubled or in pain and things in your life feel dark and out of control." Fuck yeah. This doesn't apply just to me folks. Live your life fully present, today.
Facebook post — June 18, 2014
This morning I am thankful for modern medical knowledge and chemotherapy, which makes my body temporarily debilitated but which makes it much more likely that I can be around to see even *more* modern medicine in the future. And I am thankful for this beach and this pier and Lake Washington and lorazepam.
My energy is rebounding and I'm feeling much better today. Just wanted to send that out to into the ether, because a lot of you have been reaching out after my post of a couple of days ago with worry. Thanks for the worry! I am out and about and enjoying the sun.
Also, we're planning to be in Andover/Boston from Aug 13-23. Actually only 14-16, since we arrive late on the 13th, then we'll be going to Lake Winnipesauke for family camp on the 17. That is in between chemo and radiation. Radiation starts August 25. Radiation will be 6.5 weeks, daily except weekends. My understanding is that other than local side effects (which can be pretty gnarly), the major side effect of radiation is fatigue, which is extra intense if radiation comes after chemo.
I feel like this east coast trip is an ambitious undertaking, but will be worth it... I think... I hope. I hate long flights (yes, this counts as long) even sans cancer fatigue! I will be at my worst fatigue level for the trip. Yay?
Last time we went to that family camp, Kid1 was 8 months old and didn't sleep and puked and had... intestinal issues... all week. That sucked. And then a couple of years later, we tried family camp at Lake Wenatchee, and he screamed and ran around like a banshee in the no-electricity-dark-as-a-black-hole cabin for hours each night. We cut that trip short and drove home. But this time will be great!!!!!?! In any event, we're looking forward to seeing the Boston family gang and I am looking forward to the boys spending a week in the woods with their cousins.
The end for now.
Love, hugs, Natasha
On the chemo-road again.... — June 16, 2014
So this Wednesday starts cycle 4. Most people on my chemo regimen would be done with cycle 4, but I am Special and my cancer is Special so I get to have six cycles. Some people are just special. Deal with it.
Kristine is coming on Wednesday for my infusion, and Paige is too. Kristine is going to teach Paige and I how to use makeup. We both need serious help in this regard. Kristine has been trying to get me to use makeup since we met in 1993, so this is a real milestone. She is a Grade A Awesome Friend. I've known her forever.
My nails are hanging in there, so far. I have the slight slight slightest bit of peripheral neuropathy, so mild that Dr. Zucker (love him) isn't even worried about it. Almost dismissed it, without dismissing my feelings, which is an amazing skill. Somehow he made me not worry about it while at the same time feel like he cares about and validates how I feel. Patent that skill and sell it, dude.
This past cycle was a disaster. I "recovered" from cycle 1 at day 8, cycle 2 at day 7, and cycle 3... still feeling really exhausted, napping almost daily, it's a total bummer. I was all "woe is me" to Zucker, and he bucked me up a bit. I might have brought some of it on myself - the weekend after my blood counts came back good, Craig and I took the kids for a "hike." Which was more like a crawl, for the first 0.3 miles, because (a) we have kids, (b) there were caterpillars, (c) every foot along the way on the path, (d) each of which Kid1 had to point out, and (e) each of which Kid2 had to get super excited about. Especially the "little baby ones" which are "sooooo cute" aren't they "awwwwwwwwwwwwwww!" Which is actually really really cute, especially when your kids are so happy and have their curly heads bent together staring at a little bug, except that's not a hike.
So in the end, after some pretty potent whining from Kid2, Craig took the kids back down the path, and I took an alternate 2 mile loop around by myself. And I was so happy to be out there in nature and breathing the air and listening to the woods, I did some trail running. I've been learning about listening to the new messages my body is sending me about its chemo-capabilities, and it's not that I wasn't listening, but I distinctly remember saying in my head, "fuck it" and running that trail. And it was glorious and fun and I felt free and then the shit obviously hit the fan, because I'm still napping two hours every day and it's been almost the full three weeks between cycles and aaargh. BUT - I says to Zucker, I says, "that was stupid of me" and he says, yes he does - he says, "No, it wasn't stupid. You tested your limits, and you learned something. So now we know. You won't do that next time. And, that actually might not have been what made this cycle fatigue so bad, but it might have extended the tail of the fatigue. So we learned something, and let's see what happens next cycle." So yeah, he's one of my heroes.
Also, major crisis averted - my trainer left my gym (horror! disaster!) and for a couple of days I was freaking the FUCK OUT because I pretty much can't finish cancer treatment without my gym. I'm pretty good at freaking out, and I was doing it really well because he announced this bombshell kind of out of the blue after the gym was closed for a week, which was already crappy enough. But then it turns out he created his own new gym that he couldn't talk about until after he left the old gym (lawyers... I tell ya... they mess everything up) and everything is going to be FINE because he, his wife Liz, and everyone else I love at old gym is moving to new gym. This is new gym: http://www.sweatequitygym.com/
The coolest thing? My dad is buying me my new gym bag-to-be (because he is awesome) and it matches the new gym's colors. http://www.rei.com/product/863336/rei-vitality-gym-duffel-bag-womens (not the black one, the other one).That wasn't on purpose but that makes me happy. Serendipity.
Sometimes I think, man, having cancer is getting old. Like, wow, I am *still* having cancer treatment? What? Seriously.
Reading these still interesting? I hope so. Hang in there with me, people. Can't do it without you. Natasha
Facebook post — June 17, 2004
Naturopathic treatment now includes: eating a can of beets every other day. (yes, the normal size can. Yes, the whole can.) Eating a sweet potato every other day. Swishing my mouth with oregano essential oil (ouch! Stings!) three times a day. Drinking coconut water mixed with Recharge (hippie dippie version of gatorade) a few days around chemo time. And lots of pills. Woot. [EDIT: Also 1/2 to 1 tsp of dark molasses, daily.]
Facebook post — June 17, 2004
OH MY GOODNESS, people, I am high on steroids. HIGH. I am jumping off the fucking WALLS. This is going to be great when I show up all twitchy and shit at my "Mindfulness for People with Cancer" class this afternoon.
Facebook post — June 18, 2014
"From the point of view of mindfulness, as long as you are breathing, there is more right with you than wrong with you, even if you are sick or troubled or in pain and things in your life feel dark and out of control." Fuck yeah. This doesn't apply just to me folks. Live your life fully present, today.
Facebook post — June 18, 2014
This morning I am thankful for modern medical knowledge and chemotherapy, which makes my body temporarily debilitated but which makes it much more likely that I can be around to see even *more* modern medicine in the future. And I am thankful for this beach and this pier and Lake Washington and lorazepam.
Facebook post — June 18, 2014
Fucking cancer treatment. Worse than cancer.
Intensity. — June 23, 2014
(I am writing on my phone. Because caring bridge sucks, it may delete all my paragraph separations.)
There are sheets of skin peeling off my gums. This is unpleasant. I am understating. I'm not sure if it is a side effect of thrush, chemo, thrush treatment... No idea. I just know that it really hurts. It mostly hurts for about six hours after a sheet peels off. Then I can eat again for a bit until it happens again.
The pain has been really intense again, this cycle. On Saturday, I was lying in bed. The pressure of my body weight on my back felt like it was bruising my skin. I kept trying to "get comfortable" but no matter how I placed my back, there were these annoying lumps in my bed poking me painfully. I finally tried to remove them from the bed (what are they? Did Kid1 leave balled up socks in my bed or something?). Turns out they are my vertebrae. Not removable.
My skull hurts. Note: I don't have a headache. My SKULL hurts. It hurt my bones when Kid2 held my hand.
Plusses: My henna tattoo is beautiful. Craig was gone all day Saturday for an ultimate tournament, and a combination of Kristine, Darcy, Kim, Anand, Amy saved the day. I am 2/3 done with the poisonings. The Lloyds came for dinner and we had a great evening. I am practicing some makeup lessons Kristine gave me, and loving it. (This may be a minus for the budget, eventually.)
The end.
Hi! — June 23, 2014
Wow, I should have read that post before posting it, what a downer. Sorry! Other plusses: cancer treatment saves lives and I am happy that they have powerful medicines that will keep me alive. I am actually not grumpy. It just sucks. But my mood is OK. I love all of you, and I just took a nap. It's not all bad. Buck up, people!
Here's a photo of my henna tattoo in case you're not on Facebook with me. This is post-picking-off the henna. It looked awesome with the henna on, too, and it provided a whole day of amusement picking it off.
Natasha
Fucking cancer treatment. Worse than cancer.
Intensity. — June 23, 2014
(I am writing on my phone. Because caring bridge sucks, it may delete all my paragraph separations.)
There are sheets of skin peeling off my gums. This is unpleasant. I am understating. I'm not sure if it is a side effect of thrush, chemo, thrush treatment... No idea. I just know that it really hurts. It mostly hurts for about six hours after a sheet peels off. Then I can eat again for a bit until it happens again.
The pain has been really intense again, this cycle. On Saturday, I was lying in bed. The pressure of my body weight on my back felt like it was bruising my skin. I kept trying to "get comfortable" but no matter how I placed my back, there were these annoying lumps in my bed poking me painfully. I finally tried to remove them from the bed (what are they? Did Kid1 leave balled up socks in my bed or something?). Turns out they are my vertebrae. Not removable.
My skull hurts. Note: I don't have a headache. My SKULL hurts. It hurt my bones when Kid2 held my hand.
Plusses: My henna tattoo is beautiful. Craig was gone all day Saturday for an ultimate tournament, and a combination of Kristine, Darcy, Kim, Anand, Amy saved the day. I am 2/3 done with the poisonings. The Lloyds came for dinner and we had a great evening. I am practicing some makeup lessons Kristine gave me, and loving it. (This may be a minus for the budget, eventually.)
The end.
Hi! — June 23, 2014
Wow, I should have read that post before posting it, what a downer. Sorry! Other plusses: cancer treatment saves lives and I am happy that they have powerful medicines that will keep me alive. I am actually not grumpy. It just sucks. But my mood is OK. I love all of you, and I just took a nap. It's not all bad. Buck up, people!
Here's a photo of my henna tattoo in case you're not on Facebook with me. This is post-picking-off the henna. It looked awesome with the henna on, too, and it provided a whole day of amusement picking it off.
Natasha
Facebook Post — June 24, 2014
Me: Kid1, I'll show you the owie parts of my mouth if you want to see them. Kid1: Yeah I do! Me: OK. Here , look. Kid1: Oh. That is gross. That is too disgusting to even look at. (few minutes later) Me: Can I have a kiss to make it better? Kid1: No. Me: I meant on my cheek, on the outside skin you can see, not the gross part. Kid1: Oh, sure. You can have lots.
What the what? — June 25, 2014
So I went in for a blood test today. The routine is pretty much.... Well - routine. At the lab, a nurse named Shannon picked up my file to draw the blood. We head back, and everything is fine, until I take off my pre- bandage which is there to hold the emla (numbing) cream in place. I'm all, bring on the lidocaine. Oh, says Shannon, if you've already used emla cream, you shouldn't need the lidocaine shot. That's what the emla cream is for. You shouldn't feel anything differently than if you had the lidocaine shot, and for your skin integrity it is better to have less injections.
Less injections? OK, I think. She seems pretty smart. The port draws have been going well. Maybe she is right. I mean, they wouldn't put her here with cancer patients if she doesn't know what she's talking about, right? And hey, one less needle in my life.
She is Not Right.
I am screaming bloody murder. That hurt like.... Well, like getting a fat-ass needle stabbed into your chest.
I think Miss Shannon got yelled at by some other people. When I showed up all freaked out at oncology (my doctor's office) the receptionists were all up in arms for me. A few minutes later, one of them disappeared and the other quietly informed me that superiors were being informed. They said that they had never seen me come upstairs in "such a state." [And please believe, I have been in states of various types on that floor.] My nurse, Betsy, who is actually an angel, came out already fully informed about the situation and -- unlike Shannon, who is not an angel and kept saying "well it must have hit a nerve to hurt like that, which lidocaine wouldn't have helped" -- promptly demonstrated empathy and concern.
Dear Evil Shannon: No one else hit this nonexistent "nerve" of pain and misery. I have been painlessly stabbed in the chest many times the past few months. You messed up. And then you didn't seem to give a crap. If I hadn't just listened to a mindful meditation CD the day before you stabbed me, I'd be sending evil thoughts your way. Dammit, poorly-timed Buddhist-media consumption. Instead I will send you thoughts of Loving Kindness because that's what I am supposed to do. Live it to be it.
Dear Shannon Sommer: You I love and will still hang out with, even though you share a name with Evil Shannon.
My white blood counts continue to be beautiful! My anemia is getting worse. Among other things I was instructed to eat more chocolate (seriously - good source of iron). We're ix-nay on the oregano oil rinse next cycle, which may be the culprit of the peeling layers of skin in my mouth (this has stopped happening, thank all that is good and smiling upon me). I didn't get thrush this cycle (I think - or if it was there, it wasn't that bad), but I'm not sure I would risk mouth peel again to avoid it.
Namaste. (you hear me, Evil Shannon? Na-fuckin-maste.)
It's JULY! — July 1, 2014
It's July! It's JULY!!! I have two chemo infusions coming up this month - the 9th, the 30th. And then that is IT for the chemo part of my active treatment. I hope forever, knock on wood/your favorite good luck routine. I'll be recovering from the July 30 chemo in August... but I'm instead focusing on infusions being fully enclosed within the boundaries of this calendar month.
I kind of feel a little guilty sending out such a short journal entry, if you're the kind of person who signed up for "notifications." I feel like I owe you more for receiving an email and interrupting your other activity to log in to see what I am rambling about. But that's all she wrote.
Good things about chemotherapy — July 4, 2014
Or perhaps some of these apply to cancer treatment generally:
1. Your friends feed you yummy food. I updated the planner. I just did it now for both remaining cycles, so there are July and August dates available; lucky YOU! I am hoping that this is the end of meal requests. Yay! I don't know what radiation will bring, so it might not be. We'll just have to wait and see now, won't we?
2. Doctors call you back really quickly. Your pharmacist is on a first name basis with you. Everyone providing you healthcare smiles at you kindly. [Note: Even Evil Shannon smiled kindly.]
3. Chemo brain. Perfect excuse for everything.
4. Immune suppression also suppresses autoimmune issues. I have a mild one - keratosis pilaris - that causes rough bumpy skin on my arms. It is benign, but no one loves rough, bumpy skin. Chemotherapy has caused this to completely go away. I am now constantly seen rubbing my smooth, smooth arms. I have no memory of ever having smooth arms. I understand this is temporary and due to immune suppression, and therefore will return when chemo stops.
5. No shaving my legs or plucking my eyebrows or anything. Since April. For several more months. And although I'm not banking on them hanging in the whole time, I still have eyebrows and lashes. They're starting to thin out though.
6. I have made a bunch of new friends.
7. I have learned that a bunch of people I knew are really, really good friends. I didn't have occasion to know that before, because I haven't needed to. It is pretty amazing.
8. I am much better at living in the moment and practicing mindfulness.
9. I'm not stressed out that much. I'm calmer than I was before being diagnosed with cancer. Most of the time.
10. There are awesome people out there that want to help you. Like take for example Cheryl Allmon, of Cheryl Allmon Photography, who donated a professional photo shoot through the Magic Hour Foundation. Check out the extra awesome photo she got of me in my blue wig! I'm all hip and shit. She got so many great shots but I am too tired to upload more pictures now, since caringbridge sucks. See also item 3 above.
11. Henna crown. Going to have to get another one before this is said and done. Hoping never to have the opportunity to do it again, while also loving it.
12. Makeup. Granted I didn't need cancer to do that transformation.
13. Craig being there for me all the time. He is eery awesome. It's almost like it's not possible that he can be that awesome.
14. Ativan. It had to be said.
15. Learning in a really deep and visceral way what is important in life. I don't think these lessons will go away.
16. It not being the 1950s, 1960s, or 1970s, or 1980s. Or 1990s. Or 2000s. Or even 2013, I imagine. Every year is like a new generation in breast cancer treatment.
17. I've done an hour of exercise every. single. day. since April 15th-ish. Even on days when I could identify each of my bones individually from the inside out. Boo-yah baby.
Also, FYI, Craig is going to nationals in Ultimate Frisbee, in Florida, in a couple of weeks. I am really proud of him. He is awesome.
Ciao, babes. Natasha
Me: Kid1, I'll show you the owie parts of my mouth if you want to see them. Kid1: Yeah I do! Me: OK. Here , look. Kid1: Oh. That is gross. That is too disgusting to even look at. (few minutes later) Me: Can I have a kiss to make it better? Kid1: No. Me: I meant on my cheek, on the outside skin you can see, not the gross part. Kid1: Oh, sure. You can have lots.
What the what? — June 25, 2014
So I went in for a blood test today. The routine is pretty much.... Well - routine. At the lab, a nurse named Shannon picked up my file to draw the blood. We head back, and everything is fine, until I take off my pre- bandage which is there to hold the emla (numbing) cream in place. I'm all, bring on the lidocaine. Oh, says Shannon, if you've already used emla cream, you shouldn't need the lidocaine shot. That's what the emla cream is for. You shouldn't feel anything differently than if you had the lidocaine shot, and for your skin integrity it is better to have less injections.
Less injections? OK, I think. She seems pretty smart. The port draws have been going well. Maybe she is right. I mean, they wouldn't put her here with cancer patients if she doesn't know what she's talking about, right? And hey, one less needle in my life.
She is Not Right.
I am screaming bloody murder. That hurt like.... Well, like getting a fat-ass needle stabbed into your chest.
I think Miss Shannon got yelled at by some other people. When I showed up all freaked out at oncology (my doctor's office) the receptionists were all up in arms for me. A few minutes later, one of them disappeared and the other quietly informed me that superiors were being informed. They said that they had never seen me come upstairs in "such a state." [And please believe, I have been in states of various types on that floor.] My nurse, Betsy, who is actually an angel, came out already fully informed about the situation and -- unlike Shannon, who is not an angel and kept saying "well it must have hit a nerve to hurt like that, which lidocaine wouldn't have helped" -- promptly demonstrated empathy and concern.
Dear Evil Shannon: No one else hit this nonexistent "nerve" of pain and misery. I have been painlessly stabbed in the chest many times the past few months. You messed up. And then you didn't seem to give a crap. If I hadn't just listened to a mindful meditation CD the day before you stabbed me, I'd be sending evil thoughts your way. Dammit, poorly-timed Buddhist-media consumption. Instead I will send you thoughts of Loving Kindness because that's what I am supposed to do. Live it to be it.
Dear Shannon Sommer: You I love and will still hang out with, even though you share a name with Evil Shannon.
My white blood counts continue to be beautiful! My anemia is getting worse. Among other things I was instructed to eat more chocolate (seriously - good source of iron). We're ix-nay on the oregano oil rinse next cycle, which may be the culprit of the peeling layers of skin in my mouth (this has stopped happening, thank all that is good and smiling upon me). I didn't get thrush this cycle (I think - or if it was there, it wasn't that bad), but I'm not sure I would risk mouth peel again to avoid it.
Namaste. (you hear me, Evil Shannon? Na-fuckin-maste.)
It's JULY! — July 1, 2014
It's July! It's JULY!!! I have two chemo infusions coming up this month - the 9th, the 30th. And then that is IT for the chemo part of my active treatment. I hope forever, knock on wood/your favorite good luck routine. I'll be recovering from the July 30 chemo in August... but I'm instead focusing on infusions being fully enclosed within the boundaries of this calendar month.
I kind of feel a little guilty sending out such a short journal entry, if you're the kind of person who signed up for "notifications." I feel like I owe you more for receiving an email and interrupting your other activity to log in to see what I am rambling about. But that's all she wrote.
Good things about chemotherapy — July 4, 2014
Or perhaps some of these apply to cancer treatment generally:
1. Your friends feed you yummy food. I updated the planner. I just did it now for both remaining cycles, so there are July and August dates available; lucky YOU! I am hoping that this is the end of meal requests. Yay! I don't know what radiation will bring, so it might not be. We'll just have to wait and see now, won't we?
2. Doctors call you back really quickly. Your pharmacist is on a first name basis with you. Everyone providing you healthcare smiles at you kindly. [Note: Even Evil Shannon smiled kindly.]
3. Chemo brain. Perfect excuse for everything.
4. Immune suppression also suppresses autoimmune issues. I have a mild one - keratosis pilaris - that causes rough bumpy skin on my arms. It is benign, but no one loves rough, bumpy skin. Chemotherapy has caused this to completely go away. I am now constantly seen rubbing my smooth, smooth arms. I have no memory of ever having smooth arms. I understand this is temporary and due to immune suppression, and therefore will return when chemo stops.
5. No shaving my legs or plucking my eyebrows or anything. Since April. For several more months. And although I'm not banking on them hanging in the whole time, I still have eyebrows and lashes. They're starting to thin out though.
6. I have made a bunch of new friends.
7. I have learned that a bunch of people I knew are really, really good friends. I didn't have occasion to know that before, because I haven't needed to. It is pretty amazing.
8. I am much better at living in the moment and practicing mindfulness.
9. I'm not stressed out that much. I'm calmer than I was before being diagnosed with cancer. Most of the time.
10. There are awesome people out there that want to help you. Like take for example Cheryl Allmon, of Cheryl Allmon Photography, who donated a professional photo shoot through the Magic Hour Foundation. Check out the extra awesome photo she got of me in my blue wig! I'm all hip and shit. She got so many great shots but I am too tired to upload more pictures now, since caringbridge sucks. See also item 3 above.
11. Henna crown. Going to have to get another one before this is said and done. Hoping never to have the opportunity to do it again, while also loving it.
12. Makeup. Granted I didn't need cancer to do that transformation.
13. Craig being there for me all the time. He is eery awesome. It's almost like it's not possible that he can be that awesome.
14. Ativan. It had to be said.
15. Learning in a really deep and visceral way what is important in life. I don't think these lessons will go away.
16. It not being the 1950s, 1960s, or 1970s, or 1980s. Or 1990s. Or 2000s. Or even 2013, I imagine. Every year is like a new generation in breast cancer treatment.
17. I've done an hour of exercise every. single. day. since April 15th-ish. Even on days when I could identify each of my bones individually from the inside out. Boo-yah baby.
Also, FYI, Craig is going to nationals in Ultimate Frisbee, in Florida, in a couple of weeks. I am really proud of him. He is awesome.
Ciao, babes. Natasha
Facebook Post — July 9, 2014
Bring it, cycle 5. Bring it. Let's see what you got.
Facebook Comment — July 9, 2014
Uhm, sorry, cycle 5. Didn't mean to taunt. Take it back. Please....?
Facebook Post — July 16, 2014
My bone marrow hits it out of the park again. My white blood counts are "beautiful." Kristine (oncologist) says they could practically use my blood as a control in the lab. *sniff* So proud of my over-achieving marrow. And I feel great today! Round five ties with round two for fastest recovery time to feeling "not shitty."
Kilter. — July 20, 2014
I've been off-kilter since February. Somehow, though, being between round 5 and 6 of chemo is making me feel.... on-kilter. [I looked up a few definitions; I do believe that is proper word usage, and it cracks me up.] It's like this -- when I first found out my cancer was Special and I was gearing up for six rounds of chemo, no one knew whether I could do six rounds. But six rounds was my insurance policy, over the standard four rounds, to try to offset the Specialness. And after round one, when my white blood counts came back great, they were all hopeful I could make six, although they expected my white blood counts to deteriorate over time. But they haven't deteriorated. And now I've done five... so obviously I am going to make six, because there isn't any other test to "pass" to get to round 6. So I feel really damn good about it - I am getting all the chemo they think will help my Special cancer not come back. It might still come back, but my body was able to tolerate their best- case prevention chemotherapy scenario. I'm proud of you, body. [But not proud that you created the cancer in the first place. That was an inappropriate decision, please do not repeat that behavior.]
I also feel like the other rounds - I didn't know what to expect as far as recovery. And this upcoming round, I kind of just don't care. I mean, it could be a great round, like rounds 5 and 2, or a crap shit round, like round 3, and it doesn't matter. Because there isn't another round coming up after this round. It's just... done.
I start radiation August 25, which is about three weeks after round 6. But my understanding is that the first couple weeks of radiation, people don't feel much of the fatigue. It builds up over time. But not those first couple of weeks. (6.5 weeks total, daily except weekends.) So although I'll be getting zapped, I will be feeling better and better for a while, before I start possibly feeling worse and worse. And I'm just excited for that feeling... that feeling of better and better. And I know I can do radiation. I mean, it might or might not suck, I might or might not have terrible side effects, but as far as I understand, it isn't something that you have to "stop doing" because your body can't handle it the way chemo can be.
Once you have cancer, you always have it. It doesn't go away when treatment is done. You aren't a cancer "survivor" until you die from some other cause. (Yes, people define "survivorship" differently. But that's my definition, and this is my "blog," so yeah, I win.) I hear from blogs and people I have met that other people in your life move on from it, like "wow, remember when Natasha had breast cancer?", but really it is always there. I'll be on medication for at least 10 years starting after radiation, except they'll probably find more ways to try to increase my survival odds involving medication in those years so maybe forever. I might be in menopause already, and might never come out of it. And I'll be watching for a recurrence forever. And I'll be changed forever. And my in-your-face sense of mortality with be untimely awakened forever. And it's OK that most people will move on from it. I hope to, too. Not in a denial kind of way, but in as healthy and aware a way as I can achieve.
In a lot of very real ways, I like the changes cancer has brought on my life. Not the "might die young" risks, not the "might not see kids grow up" risks, not the "have to cut up and poison and radiate my body" parts. Not the "family has to deal with this shit" and "friends have to worry about me" parts. I mean, 2014 can really bite my ass. But I'm deeply and fundamentally more aware of living in the moment. Right now is the only time we have. And I feel like holding onto that awakening is really important, and worth it. Worth it.
I've been having a great time this week. Betsy came to visit on Tuesday, and she's been a real help with Craig away playing in the Grand Master's tournament in Florida. (He won three games then lost in the semi-finals, 11-10, in a hard-fought game. He's flying home as I type, and seems in good spirits despite not coming back with the victory.) Betsy and I have been having a great time together, and with the boys, but also together without the boys while they are in school! Family time is great.
I've been working very little, because my concentration is pretty shot. I keep trying, and it is just really hard to focus enough to be confident of my work product. So yeah - not great mental condition for drafting people's estate planning documents. I'm lucky to work for such an accommodating boss. My clients are being so accommodating, and overall, I am feeling blessed.
It's a good day. Thanks for tuning in.
Happy dance. — July 30, 2014
It's three am! I'm wide awake! Thanks, steroids. Love you too.
This is it. Today will be my last chemotherapy infusion, hopefully forever. I'm pretty gosh darn tootin' excited. Except for the recovery from the side effects that are steadily more weird. Like some of my fingers have double fingernails. That's right, ladies and gents, one fingernail growing under the other, both still attached, both might fall out. The audience of this blog is a little too broad to share some of the other recent weirdness. Be thankful for small favors.
In exciting news, Kid2 is so shocked this is finally my last chemo he tried to get it rescheduled by acquiring an "unspecified rash" and being kicked out of school for tomorrow. To thwart his plan, we were going to leave him at home with some nonperishable food items within reach. He knows how to get himself water. But then Nichole Chiappini Richeson sounded so excited to hang out with my sick and probably-not-but-possibly contagious monkey, so we'll do that instead. I'm sure plan A would have worked out fine too... It's not like he doesn't find ways to hurt himself while we ARE home.
I still have eyebrows and lashes! This is my major accomplishment of the summer. I hear they can fall out up to a few months after chemo ends (like, all of them in a day! Up to six months after you thought side effects were all exposed! Freaky.) I love them and hereby give them permission to do whatever they think is best, since they have stayed with me through the course. Since this will be the last of the poisonings (or as my nurse Betsy objects, "It's medicine, Natasha,") their departure now would make me look alien for a much-reduced time period than, say, their departure in April. So yeah, thanks, eye-protecting, feature-defining hairs. You did good.
My understanding is that stopping chemotherapy can be traumatic, because it also means you're no longer chemically killing possible stray cancer cells. I'm not really expecting to feel that way. First, because chemotherapy itself is traumatic, and enough already. Second, because I am on good anxiety-management drugs and have good therapists and friends/family to keep me on track. Third, because I do still have a long plan of killing stray cancer cells by frying my chest with radiation for a couple of months, so I'm not quite done killing cancer cells. I'm not falling off the active treatment cliff yet.
Thanks for reading! I'm up over 3000 views on this blog. That's a lot of people-instances of care, concern, morbid curiosity, or just thinking I'm a fantastic writer and waiting with bated breath for a new entry notification, any of which is fine with me.
Please take a moment to send out good thoughts to everyone out there who needs them. I have some readers of this blog who also need them.
Love, hugs, Natasha
Facebook Post — July 30, 2014
Celebrating the last day of chemotherapy by going in style!
Bring it, cycle 5. Bring it. Let's see what you got.
Facebook Comment — July 9, 2014
Uhm, sorry, cycle 5. Didn't mean to taunt. Take it back. Please....?
Facebook Post — July 16, 2014
My bone marrow hits it out of the park again. My white blood counts are "beautiful." Kristine (oncologist) says they could practically use my blood as a control in the lab. *sniff* So proud of my over-achieving marrow. And I feel great today! Round five ties with round two for fastest recovery time to feeling "not shitty."
Kilter. — July 20, 2014
I've been off-kilter since February. Somehow, though, being between round 5 and 6 of chemo is making me feel.... on-kilter. [I looked up a few definitions; I do believe that is proper word usage, and it cracks me up.] It's like this -- when I first found out my cancer was Special and I was gearing up for six rounds of chemo, no one knew whether I could do six rounds. But six rounds was my insurance policy, over the standard four rounds, to try to offset the Specialness. And after round one, when my white blood counts came back great, they were all hopeful I could make six, although they expected my white blood counts to deteriorate over time. But they haven't deteriorated. And now I've done five... so obviously I am going to make six, because there isn't any other test to "pass" to get to round 6. So I feel really damn good about it - I am getting all the chemo they think will help my Special cancer not come back. It might still come back, but my body was able to tolerate their best- case prevention chemotherapy scenario. I'm proud of you, body. [But not proud that you created the cancer in the first place. That was an inappropriate decision, please do not repeat that behavior.]
I also feel like the other rounds - I didn't know what to expect as far as recovery. And this upcoming round, I kind of just don't care. I mean, it could be a great round, like rounds 5 and 2, or a crap shit round, like round 3, and it doesn't matter. Because there isn't another round coming up after this round. It's just... done.
I start radiation August 25, which is about three weeks after round 6. But my understanding is that the first couple weeks of radiation, people don't feel much of the fatigue. It builds up over time. But not those first couple of weeks. (6.5 weeks total, daily except weekends.) So although I'll be getting zapped, I will be feeling better and better for a while, before I start possibly feeling worse and worse. And I'm just excited for that feeling... that feeling of better and better. And I know I can do radiation. I mean, it might or might not suck, I might or might not have terrible side effects, but as far as I understand, it isn't something that you have to "stop doing" because your body can't handle it the way chemo can be.
Once you have cancer, you always have it. It doesn't go away when treatment is done. You aren't a cancer "survivor" until you die from some other cause. (Yes, people define "survivorship" differently. But that's my definition, and this is my "blog," so yeah, I win.) I hear from blogs and people I have met that other people in your life move on from it, like "wow, remember when Natasha had breast cancer?", but really it is always there. I'll be on medication for at least 10 years starting after radiation, except they'll probably find more ways to try to increase my survival odds involving medication in those years so maybe forever. I might be in menopause already, and might never come out of it. And I'll be watching for a recurrence forever. And I'll be changed forever. And my in-your-face sense of mortality with be untimely awakened forever. And it's OK that most people will move on from it. I hope to, too. Not in a denial kind of way, but in as healthy and aware a way as I can achieve.
In a lot of very real ways, I like the changes cancer has brought on my life. Not the "might die young" risks, not the "might not see kids grow up" risks, not the "have to cut up and poison and radiate my body" parts. Not the "family has to deal with this shit" and "friends have to worry about me" parts. I mean, 2014 can really bite my ass. But I'm deeply and fundamentally more aware of living in the moment. Right now is the only time we have. And I feel like holding onto that awakening is really important, and worth it. Worth it.
I've been having a great time this week. Betsy came to visit on Tuesday, and she's been a real help with Craig away playing in the Grand Master's tournament in Florida. (He won three games then lost in the semi-finals, 11-10, in a hard-fought game. He's flying home as I type, and seems in good spirits despite not coming back with the victory.) Betsy and I have been having a great time together, and with the boys, but also together without the boys while they are in school! Family time is great.
I've been working very little, because my concentration is pretty shot. I keep trying, and it is just really hard to focus enough to be confident of my work product. So yeah - not great mental condition for drafting people's estate planning documents. I'm lucky to work for such an accommodating boss. My clients are being so accommodating, and overall, I am feeling blessed.
It's a good day. Thanks for tuning in.
Happy dance. — July 30, 2014
It's three am! I'm wide awake! Thanks, steroids. Love you too.
This is it. Today will be my last chemotherapy infusion, hopefully forever. I'm pretty gosh darn tootin' excited. Except for the recovery from the side effects that are steadily more weird. Like some of my fingers have double fingernails. That's right, ladies and gents, one fingernail growing under the other, both still attached, both might fall out. The audience of this blog is a little too broad to share some of the other recent weirdness. Be thankful for small favors.
In exciting news, Kid2 is so shocked this is finally my last chemo he tried to get it rescheduled by acquiring an "unspecified rash" and being kicked out of school for tomorrow. To thwart his plan, we were going to leave him at home with some nonperishable food items within reach. He knows how to get himself water. But then Nichole Chiappini Richeson sounded so excited to hang out with my sick and probably-not-but-possibly contagious monkey, so we'll do that instead. I'm sure plan A would have worked out fine too... It's not like he doesn't find ways to hurt himself while we ARE home.
I still have eyebrows and lashes! This is my major accomplishment of the summer. I hear they can fall out up to a few months after chemo ends (like, all of them in a day! Up to six months after you thought side effects were all exposed! Freaky.) I love them and hereby give them permission to do whatever they think is best, since they have stayed with me through the course. Since this will be the last of the poisonings (or as my nurse Betsy objects, "It's medicine, Natasha,") their departure now would make me look alien for a much-reduced time period than, say, their departure in April. So yeah, thanks, eye-protecting, feature-defining hairs. You did good.
My understanding is that stopping chemotherapy can be traumatic, because it also means you're no longer chemically killing possible stray cancer cells. I'm not really expecting to feel that way. First, because chemotherapy itself is traumatic, and enough already. Second, because I am on good anxiety-management drugs and have good therapists and friends/family to keep me on track. Third, because I do still have a long plan of killing stray cancer cells by frying my chest with radiation for a couple of months, so I'm not quite done killing cancer cells. I'm not falling off the active treatment cliff yet.
Thanks for reading! I'm up over 3000 views on this blog. That's a lot of people-instances of care, concern, morbid curiosity, or just thinking I'm a fantastic writer and waiting with bated breath for a new entry notification, any of which is fine with me.
Please take a moment to send out good thoughts to everyone out there who needs them. I have some readers of this blog who also need them.
Love, hugs, Natasha
Facebook Post — July 30, 2014
Celebrating the last day of chemotherapy by going in style!
Facebook Post — July 30, 2014
This is what a bag of chemo looks like. Like a bag of water/regular IV fluids. How does it look so... Nontoxic?
This is what a bag of chemo looks like. Like a bag of water/regular IV fluids. How does it look so... Nontoxic?
Well. I wasn't expecting THAT. — August 5, 2014
Hi everyone! You know when you wake up one day thinking you're going to a doctor's appointment to have a cut looked at and a possible course of action set, and instead they poke you with 20 needles in the eye? Oh wait, maybe that just happens to me.
Apparently taxotere (and other taxane-based chemo agents) can scar tear ducts. This is happening less and less as a matter of general side-effects because dosages of the drugs are being very well determined, but since my Special Cancer required 6 instead of 4 rounds of taxotere, I get a special bonus of experiencing this.
My eyes started tearing a lot. It started after round 3, got worse after 4, and even worse after 5. It takes a couple weeks post chemo for the cyclic worsening, so I'm expecting it to get worse next week. And I am in fact freaking out a bit now that chemo is over, about whether or not chemo worked or if a cancer cell or 2 or 6 or 504 are still floating around, undetected and undetectable, and that *IS* making me actually intentionally cry a bit, but what is happening that is worrisome is that water just keeps falling out of my eyes during the day.
Mostly when I'm outside, but also inside. It's been getting worse and worse. Like, it's pouring down my face, on and off. While I'm not crying. Like, right now, I'm not crying. But it looks like I am.
I talked to the eye doctor about it a few weeks ago when it started, and he said to let him know if it got worse, and when I mentioned it to the oncologist last week, the onc told me to go back to the eye doctor... so today I did. And he basically said, "Get ye to an eyelid specialist ASAP." So today I did, luckily - they had no openings and I was all, what? I have cancer, you must have an opening for me, and they were all, no we don't. But then as I was pondering why the cancercard didn't work, they called back because someone cancelled their afternoon appointment.
So I go, with Kid1 in tow (who has been home sick). And basically that eyelid specialist surgeon dude, who looked and sounded all non-threatening the whole time before he started in on me, put a drop in each of my eyes and then promptly took a long-ass sharp needle and poked it repeatedly into each of my four tear ducts. And then gave up on my right eye while the other doctor got the pediatric-sized tear duct-poking needles of pain, because apparently my right tear ducts are scarred so tight the regular ones don't fit, and then he poked my
eyes multiple times with that. All so that he could open a small pathway and pour liquid down my tear duct, which went into my throat.
I managed not to scream because hey, five year old sweet kid sitting two feet away playing games on my phone.
You can't close your eyes or look away for this particular procedure, folks.
So back to the liquid down the throat - this is the good news! Yay! Because at least it's just the little tributary tear ducts that are scarred. But now I need surgery to insert tubes in all four ducts, which is happening on Tuesday next week. (Right in time for the flight east Wednesday!) And apparently, the tubes will make the symptoms worse, but will protect my tear ducts from scarring shut permanently. And then in a few months I can get the tubes taken out.
I'll check back in tomorrow with blood counts. Which is currently the last time anyone is scheduled to stab me in the chest to withdraw blood from my port. (Port removal surgery scheduled for 8/27, radiation start scheduled for 8/28).
Oh, and I get radiation simulation this Thursday. This includes casting my body so I am in the same particular position each time, plus a few CAT scans to see whether or not I need to do the breath hold method, and tattooing me. Which is a total bummer. I wish I were brave enough to already have had my first tattoo, because it sucks that my first tattoos will be radiation dots. Anyhow I'll update on how that goes too.
Clone me. Natasha Black, August 6, 2014
Once again my blood counts are amazing. The nurse said "if only we could clone you." But then you'd get the cancer too... or maybe not... or maybe... hmm.
Today was quite a day. Started out great, until Kid1 ran into a couch and ripped his lip apart from his gum (that little connecting thing between his upper lip and gum is now gone). I didn't know that had happened, at the time, because there was just too much blood and his lip was three times its normal size, so I didn't quite notice it missing. And it was time to go, so basically we stuck him in the car with an ice pack and dropped him off at school. When I picked him up from school I felt bad that I hadn't noticed earlier. But really, what was I going to do about it? So maybe it's best, because I worried less about him all day. So yeah, I guess not so bad. And Kimber says maybe it will grow back. Whoever wants can undertake that Google research project. Kid1 doesn't seem to be much worse off without it, except for the wounded-looking bits. Mouths heal fast.
Remember Evil Shannon? Still evil, but maybe right about hitting a nerve, because that happened again, and this time I did have the lidocaine shot. I hate to think she could have been right, but at least I can remain smug about my certainty that she was Evil. Because the nurse that stabbed me today and caused the screaming and pain was sooo sooo sooo sooo sooo empathetic and nice and sorry, that she wasn't deemed evil. So I got poked in the arm too. (Betsy - glad you were here for the last chest poke, and not this one, because it wasn't pretty.) Today the pain lasted for about 20 minutes even after she took out the offending needle. That. Sucked.
Chemo officially deemed over. Bone pain over (Sayeth the nurse: "With those blood counts, you sure would have bone pain!"). Done with dexamethasone, l-glutamine, thrush meds, chemo meds, claritin, omeprazole (almost), nausea meds (never took the pill-form ones; just the IV ones). Now remaining are the naturopath meds, lexapro, clonazepam, and various vitamins. Still lots of pills, but my liver is happier and perhaps, soon, I can stop with the beets.
Answers to important questions and comments received on this site and through other media:
1) I will be OK to fly Wednesday. The eye surgery Tuesday shouldn't be a big deal; in fact inserting tear duct tubes is generally an in-office procedure, not a surgical suite event. Only happening this way because of the extent of my scarring requires anesthesia. I should recover quickly that afternoon after surgery. This is a nonexcisional surgery (i.e. no cutting, no blood). If yesterday's investigatory poking had happened under anesthesia, it would also have been not a huge deal, but the whole point of yesterday was to decide what had to happen Tuesday, so yeah.
2) Yes, yesterday's thing was pretty much the worst possible thing to happen to someone with a needle phobia. (Relatively speaking. I mean, cancer is worse, but if cancer is a given, then this is the worst other possible thing.) Thanks especially to those who know about my needle phobia and responded privately to freak out with me. I really appreciated those freakouts.
3) I can continue to wear makeup; the tear duct issues have no effect on this issue other than to potentially make my makeup look bad. But I have learned about makeup from an expert, and most of it is waterproof enough to let me stay made-up-pretty. Maybe she's born with it, maybe it's cancer-causing-chemical-additives-that-make- her-eyes-sparkle.
Onward.
!$&!#$@ — August 26, 2014
The good: Our vacation was lovely. Minus the flights and everyone being sick. Except for Kid1. So that's a change, since it's usually Kid1 being sick. And everyone not sleeping. Except for Kid1. :) Among other things, it was great to not have doctor's appointments for over a week. And to really reconnect with Michelle (my sister in law, who is really just my sister and soul mate). And to see my Dad and Maya, especially Maya who I haven't seen in a while and who loves me a lot. And to see Gail, who is like my mom. And to get some really awesome perfectly-timed hugs from Betsy. And hang out with my nieces, who I love. And we managed to see Steve and Karla before they left the country for a trip, and we got to spend quality time with Ken and Colleen and their family. Family is the best. We also got to catch up with Chagit and Tom, who have been really supportive friends and who I really love.
Plus we got to reenact Make Way for Ducklings, which was so super awesome. Kid1 was really into it. Kid2 too, although he was not aware of how awesome it was.
Lake Winnepesauke is like a balm to the soul. Being on an island, car-free, is so soothing. Kid2 was like a pig in shit all week. If he could be outside during all waking hours, he wouldn't be a difficult child to manage. He did find and play with a sadly deceased dead baby rabbit, so there is that. But that wasn't on the island.
The bad: Some of you know this because of the book of the face, but one of my four tear duct tubes fell out last week while at camp. They wanted me to replace it the next day, but settled for the first possible appointment when I was back in town (now yesterday). I balled up all my courage and chutzpah to drive myself to the surgeon to get an eye injection (see prior post re needle phobia). I managed it! It wasn't pleasant but it was done. New tube inserted. I then got Kid2 from his hourly daycare place (he loves having moved into the big kids side!), we had lunch, we went home. He napped. I realized how much the self-motivation took out of me, and wisely, I napped too. Unwisely, my newly-inserted tear duct tube decided to fall out during my nap. Seriously? Seriously. The doc had mentioned that it might, as the anatomy of this one punctal (sp?) is different and doesn't seat the tubes as well as the others. But during a nap right after the procedure? I kind of feel like my Fucking Cancer is laughing at me.
Anyhow, next steps might include things I don't want to think about (la la la la la sewing the tube in place to my eyelid la la la la I can't hear you). The doctor is going to get his partner's input today and they'll get back to me re recommendations. I am starting to think that saving three out of four tear ducts isn't too bad.
The ugly: The rest of this week requires me to have a lot more mental chutzpah, and I used it all up yesterday. The tear duct falling out was the last straw. But I don't get to have a last straw. Today I have a doctor's appointment, followed by my first post-diagnosis follow-up mammogram. (Note to those who haven't had cancer: this is really Fucking Stressful.) Tomorrow I get to have a follow-up appointment followed by surgery to remove my chemo port (the first surgery I want to have, although it's all local anesthesia so I'm really unexcited about the prospect of it actually happening). Thursday I was supposed to see the eye doctor, but at least I got to cancel that visit for now. Hopefully I'll be able to drive post-surgery (as is anticipated) and can get an opportunity to do something fun with Kid2. Friday, I have my "dry run" for radiation. Radiation starts next Wednesday and goes through October 17, daily every weekday at 11 am. That is at least my preferred time of day! My understanding is that side effects start a couple weeks into radiation and get worse for about a month after radiation stops.
Kid1 starts kindergarten next Tuesday. I wish I had more mental space to focus on that. However, he still thinks I am a perfect mom, so I'll not feel too bad about that. Yet.
I kind of overdid it at the gym the last couple of days. I get so excited to be back. I'm going to skip today and just go for a short run. I'm not sure exactly how long I'll be restricted from working out after Wednesday, but hoping it isn't that long. The gym keeps me going. My trainer Nick and his wife Liz just bring so much positive energy into the world it's hard not to absorb it. I'm a sponge for positive energy.
Kristy Lloyd is taking care of Kid2 all day today and tomorrow. Because her own four kids aren't enough work? In fact, I told her my pick up/drop off plan and she asked me to drop him off earlier. Uhm.... ok. :) I've been kind of blown over by how you friends have stepped in to make this crazy ride doable. It's making me cry. That's not saying much these days, with these eyes of mine, but right now is really making me cry real tears of thanks.
Thanks. Thanks thanks thanks. I love you.
Ladies: go out and get your mammograms. Fuck the "age 50" recommendation. Men: check yourselves in whatever way you're supposed to. I don't have time to research that for you.
Other stuff: I have four radiation tattoo dots. I have barely noticed them. This is much better than I was expecting. I might still get a real tattoo of my own, but it kind of depends on what comes in the future and not because I hate these dots. Because they're really little.
Ok. Bye!
Quickie update. — August 26, 2014
Eyes: decision is to wait two weeks, see how the scarring is doing on the misbehaving tear duct, and reassess.
Mammo: all good. Although the radiologist implied that since I'm so young, I should have had a bilateral mastectomy since I have a risk of recurrence. WTF. I know that, dude. Because I still have breasts. Thanks for the extra anxiety. But he also explained something that has been confusing me for ages (how come over 4cm of DCIS didn't show up on the initial mammo?!) and reassured me. So overall I give him a "thumb sideways."
Next up: Port removal! Woot.
Lots of shizz happened since we last spoke. — August 31, 2014
OK, so here's the low down, yo.
Eyes: My left eye is the one that can't hold onto a tear duct plug and got so much attention the past few weeks/posts. So my right eye was really really jealous, and retaliated against me/my left eye by getting pinkeye. Woot! Two positives: I went back to the eye surgeon because of this, and he took blame for the pinkeye (he said something like, "if something crops up within a few days of surgery, we usually did it to you"). Also, I mentioned directly to him (rather than to nurse on phone, who had apparently not told him this detail) that the second tube just fell out during my nap. He thought that was pretty good news, actually, since if that duct were really scarred tight, it would have wanted to hold onto the tube (friction). So, yay. I still don't know if that means we'll just be leaving it all the way alone going forward, but a girl can dream. (Note: Pinkeye almost resolved. This HAS interfered with wearing makeup, and has duly pissed me off.)
Radiation: I went in for my "dry run" of radiation last Friday. It was very surreal. Literally: they had a sculptural art nouveau thing on the ceiling with soothing, smoothly-transitioning colored lights, and a big self-actuated futuristic machine, and groovy music. I felt like all that was missing were the special brownies. The tech said they ate them all before I showed up. I will try to photograph/video tape the machine/ceiling for the next installment of "Natasha Narrates Cancer." Before I left for vacation, they decided that I would indeed benefit significantly from the breath-hold radiation technique, because apparently I have great lung capacity and that, with my related anatomy, means my heart clears the radiation field completely when I hold a deep breath (depth of which is controlled by a computer and weird scuba-divey mask-y thing I wear during radiation). Check out this cool CAT scan image. The big mass is my heart. The little mass is my heart on a deep breath. The white stuff is bones (ribs, spine, etc.) The radiation field is somewhat like that dashed line, but not really, but close enough for caringbridge. See my heart getting no radiation? Rad. My heart moves not only over to the right as shown in this image, but also significantly down (like 5 inches over, 5 inches down, something like that). Who knew. Not I. So next time someone wants to shoot an arrow right into your heart, try taking a really deep breath. Maybe they will just pierce your lungs!!! (Radiation starts Weds, goes every weekday until Oct 17. Side effects expected to last an additional month after.)
Port: It is gone. I wasn't under general anesthesia when they did it. But it didn't hurt (much) to remove - just a lot of pulling and tugging. The medical establishment wouldn't let me keep my port as a memento because it is a biohazard. I'm all, yeah, but it's my own biohazard, and they're all, yeah, we don't give a shit, some lawyers said you can't have it. Lawyers screw EVERYTHING up. So I can't have it. But I did take a bunch of extra gross pictures, like this and this and this. I took a highly scientific poll on Facebook regarding preferences whether I do or do not post a picture of the removed port here. Most people want to see, and then Beth said "Pics or it didn't happen." That's almost a dare. Just remember, I didn't make you click on the links.
The end of that long tube was JUST OUTSIDE MY HEART INTAKE VALVE, yo. That is some seriously F.U.S. I did not specifically feel them pull the tube out, and apparently the vein it was inserted into just self- seals after they pull it out. (Did you read that right? It just self-seals. What?? How? I don't know.)
What is left now is a scar, which I can't see yet (still has steristrips), but about an inch long, and what feels like bruising where the port and the tube were. Much better than a scar (which I could see) and a port and a tube in my body! I think this was my last non-elective surgery of cancer, knock on wood, blah blah blah, because if I have more surgeries, that will be my decision. Except the eye thing, I guess, but somehow that doesn't feel the same to me. And I kind of assume they're done sticking tubes in that recalcitrant duct, since I'm done having it done... is that how it works?
Side note: the port didn't make the metal detector go off at the airport, which really annoyed me. I mean, I was bionic! And I was prepared with a doctor's note! Nothing. No love from the metal detector. Whatever.
Hair: I have some. It looks ridiculous. My niece Sophie said, as she rubbed my fuzzy head, that I look kind of like an animal. Since I am an animal, that's kind of OK. But this growing in process is weird. It's super sparse, and really baby-hair, and so soft and fuzzy. And I have lots of clogged pores, which I hope means I have more hair trying to get out, but which might just mean I have scalp pimples, I don't know. I kind of hate the fuzz and want to shave it off, but then what? Plus it makes my head hot now when I work out -- how did I have so much
hair before and not sweat from my head all the time? Anyhow hopefully it will fill in soon and start looking awesome or at least less fuzzy, and then I can start going to expensive salons to complement my new household budget line-item for makeup.
Work: Not really back to it. Kind of thinking about it, but I had seven doctor appointments last week. Once the kids are back in real school and I am in the swing of radiation, and it feels like a routine, I'll revisit. But I am sending out the occasional email that I hope doesn't sound completely half-cocked.
Help we need: We're OK! Thanks to you guys. Craig is going to China in early-mid November, when I might be feeling crappy, and Betsy was willing to come out for the whole month (since she is coming for Thanksgiving) but I decided I'll probably be OK and that you guys would pitch in if I am not. So you might hear about that eventually, but it might turn out that radiation is a breeze for me and I am fine by then. Or not. Stay tuned!
I think this is all I got. Maybe I forgot something, but how would anyone know? Is that a Zen koan?
Edit: oh yeah - I am now wearing a lymphedema sleeve and gauntlet full time. Not during sleep, only while awake. Hopefully this will prevent lymphedema resulting from radiation. I think my PT is being really conservative, but that's OK, since lymphedema would really suck. So I'll do it regardless of what I think may be low actual risk, to avoid possible lifetime of arm-misery.
Radiation week sucks. — September 9, 2014
Hi Supporters.
So radiation so far - maybe it's made me a bit more tired, but pretty much it seems to have done nothing to my body. Here are some pictures: the radiation room and some of the therapists, the new-age ceiling, and me on the table about to get zapped. That last picture doesn't show the fancy snorkel gear for the breath hold. But imagine snorkeling face gear? You doing that? OK good. I'm wearing it and breathing through it. But not any of the goggle parts. Done. You're now accomplished at imagery meditation, if you played along.
But the week? It's been really really crappy. I've been able to stay pretty positive about my treatment so far, even though my cancer is Special. But going to the hospital every day, at the same time, like clockwork is like this:
Hey I wonder what I should CANCER CANCER CANCER
That was a fun workout, I feel CANCER CANCER CANCER CANCER
Kid2 is so cute when he climbs CANCER CANCER CANCER
I hope Kid1 is enjoying kinder CANCER CANCER CANCER CANCER CANCER
Aw Craig made the thing I wanted to organize my CANCER CANCER CANCER CANCER CANCER
There is just no getting away, mentally. And I am having a really, really, really, really, really, really, really, really hard time dealing with it.
Also, my oncologist wants to put me in chemically-induced menopause at the end of radiation. Which is just as I suspected she would. It gives me an edge over just tamoxifen, because a new study shows a better chance of no cancer returning if I am in menopause and take an aromatase inhibitor instead (you can't if you're premenopausal, because ovaries are so effective at making estrogen, aromatase inhibitors don't work). I knew it was coming. I wasn't surprised when she said it. I'd actually asked her about it already. But FUCK. I'm 37. I don't want to go into menopause. But I also don't want my cancer to become stage 4, which it has a very high propensity of doing. Because that sucks. So on top of that CANCER CANCER CANCER CANCER.
Time to get ready for radiation treatment.
Why hello there. — September 21, 2014
Nice of you to join me on this roller coaster ride.
It's been a rough few weeks in radiation land. I am physically (i.e., my skin) handling radiation fine. Better than some/most, the oncologist is pleased with my skin changes so far, hopes I will avoid the worst of it.
Emotionally I've been pretty unstable. Thankfully they have drugs for that. Hopefully I'll be back to chemically- modulated stasis soon.
The gist of it is this: I've pretty much had it with cancer treatment. It is annoying. I hate that radiation is scheduled Day. After. Day. At. Exactly. The. Same. Time. I hate it, and I can't move past it, mentally, so I'm done. But it's just not done with me. And there is nothing for it except the passage of time. And that is really frustrating. My brain shuts off at about... 430p daily. My body basically shuts down at 730p. But the kids? They don't. And it is really hard.
I've been pushing it a bit too hard at the gym. I'm cutting back on that (exertion, not attendance), and trying to limit myself to 70% of max heart rate. While I am there, it feels really really good to push it and feel "healthy" and "normal" but then it hits me back hard at night. Because I didn't actually have the energy I was using in the morning. It's not that I'm underestimating the effects of radiation - it's really resource-intensive medical treatment, and taxes your body a lot. Especially protein stores, like muscle. It's just that I don't CARE and I want to feel Normal. So while I'm working out (still everyday, *pats self on back*) I start to feel frustrated by all the limitations I have on my physical activity now (resulting from surgery (limiting weight-bearing pectoral exercises), chemo side effects (nerve damage to palms of hands limiting how much weight my hands can hold/push), and now radiation side effects(can't wear a bra any more so no more running/jumping/impact exercise)), and I get madder and madder, then I beat the shit out of some cardio machine, and my heart rate skyrockets because it basically takes NOTHING for it to do that now, and then I pay for it later that day. But then I do it again the next day, because yeah. We're doing this Same. Shit. Every. Day.
I kind of hope that the end of radiation will break this cycle, but maybe the additional lexapro I've been prescribed will fill in that gap before radiation ends. I was pretty well-behaved at the gym yesterday, and kind of proud of myself... except I didn't get the "feel normal" moment I get when I stop "holding back" so then I got mad at missing that... whatever. I know I'm insane.
I've pulled back on the other medications significantly. A lot less pill popping! I'm down to one multivitamin a day (used to be 2), two digestive enzyme pills (used to be 8), some calcium/magnesium, fish oil, vitamin D, vitamin B6. The only "real" meds are the lexapro and the clonazepam. No rush on stopping those yet. My mental health will enable my body to focus on physical health. I'm not so overwhelmed with the med list any more, and that is pleasing.
They checked my hormones and I'm in chemopause still, which is great, because it means (a) I don't have to start getting a shot in my butt every month yet to create chemical menopause and (b) my oncologist said that it is likely that my menopause symptoms will be a lot like they are now, which is basically nothing (some warm flushes, I wouldn't really call them hot flashes). And my naturopath said that the biggest risk of menopause to me is the early onset of osteoporosis, the antidote to which is weight-bearing exercise.... See Exhibit A, supra. I think I'll be OK bone-wise. There are solutions to that.
I have some hair. It's sparse. I don't quite look like a newborn chicken any more. More like an adolescent chicken. It's not long enough to do anything with, but is long enough to give me hat head. So I'm not sure if that is good or bad news? I am growing hair back on my legs again too, which is kind of annoying. One benefit of chemo lost.
My tearing eyes are getting more annoying. They are now limiting my ability to use makeup, because they tear unevenly. So I blot unevenly, ever so gently, but unevenly. So if I use make up, a few hours later one eye looks fun and the other eye looks half-fun, which adds up with my hathead to make me really look like the town nut. Also the constant tearing makes my eyelashes stick together, which sucks. Especially when I try to unstick them, and then end up pulling one out, and it's like Noooooooooo........... they're already thinning.................
Here's a story for you:
So I'm sitting in the radiation waiting room and there's this guy right? Sitting there? Because he's there for radiation too. We all have cancer, us folks sitting there (unless you're a cancer spouse or whatever), and it's kind of hard sitting in that room with all these people in their 70s because it reminds me that I'm really too young for this. But that's not what this story is about. So this guy - he's all, "So did you lose your hair from chemo?" and I'm all, "uhm, no shit" but instead I say, "Yeah." And he's all, "I'm starting to lose mine too." Because some people do chemo and rads at the same time, it depends on the cancer, etc. So I'm all, "Yeah? You could just shave it then. Get it over with." And he's all, "Here's the hair I lost yesterday." And I shit you folks not, he pulls out a BAGGIE FULL OF HAIR to show me. Uhm. Whatthefuck. Here are the issues:
(a) Don't collect your shedding hair in a baggie. Throw it in the trash.
(b) Don't bring the baggie around with you to show strangers. There is no show-and-tell after grade school. And I'm pretty sure Kid1's (AWESOME) kindergarten teacher would ix-nay him if he tried to bring that to show- and-tell.
(c) It's cancerland, people, we're all bald, currently or formerly, we know what losing hair looks like.
(d) GROSS. Looks like hair balls. PLEASE.
(e) Seriously?
Please list additional issue you can identify in the comments.
This guy's appointment is right after mine. I told the radiation therapists about it, and the next day, they were all agog. Apparently, he pulled the baggie out to show them too. Seriously? Seriously. I now spend my time waiting in the nurses' station.
Thirteen frying sessions down, twenty to go. I thought I'd add another picture of the radiation room, just before the action, showing the laser light show and the snorkel equipment for the breath hold. They use these lasers to line up on the tattoos they put on my skin last month, so they are sure to zap the same area daily. I can kind of see a faint shadow of the area because my skin is getting red in that area, but it's faint. So far. It won't be by the end. They basically guarantee it. But they also basically guarantee it will heal. I just hope it works.
My brain left a few hours ago. My body is shutting down in ten minutes. Ciao, and goodnight.
Natasha
Mooooooooo. — September 25, 2014
I'm halfway done with radiation. Yay! Boo. You can see the area they are radiating. It is red. The rest of me is not red.
My hair is just about a 1. Craig thinks it is longer than a 1. I don't think it really is, but I'm not going to 1 it just to check. If you don't have any idea what I'm talking about, that's OK, because it doesn't really matter. It is short. It kind of looks like something that I could have maybe done intentionally (like, if I were super hip), except it is too thin still. Also, I am not super hip.
I mentioned to my psychiatrist that I am walking into walls a lot and can't concentrate. She thinks it is time to reduce my benzodiazepines (the clonazepam)! Yay. As I get farther away from chemo I need less for the same therapeutic effects, and will notice side effects (like loss of mental acuity and walking into walls, apparently). Some of you may know that walking into walls is an early symptom of mad cow disease, which I'm pretty confident I'm at risk for since we ate cow brains in England at the peak of mad cow time. But she thinks
it's the benzos. ;-)
We're going from 3 pills a night to 2.5 pills for 5 days. If I am still sleeping OK, we'll drop to two pills. Hold that steady through the end of radiation.
That's all. Were you expecting more? Natasha
Tamoxifen is SO 2013/early 2014. — October 8, 2014
Hi everyone.
Radiation: This is a terrible thing, this slow and steady burning of my body. I have a square about 8 inches wide and about 7 inches tall around my breast. This square is formed by radiation burn. Everything in this square is red. Except my underarm, that is now brown and rough, like a burned rash. As of yesterday, it cracked open and is seeping. Fun times! I can't walk right. I gave up on the gym last week. The cumulative effect of my treatments is such that all I could reasonably expect to do is ride the stationary bike slowly. So yeah. We're on
hiatus. I walk with arms akimbo, like I just have a bad attitude. Seven more treatments to go. Thankfully, only two more are whole-breast (i.e., affecting my armpit). The five next week will focus on the tumor bed only (and are electron beam, versus photon beam, in case anyone knows the difference). Because radiation side effects have delays, it will get worse for about a week, then start to get better. So my armpit will hopefully start getting better in a couple weeks, and the rest of it a week after that. (Also, please note that I was yelled at today for not taking enough painkillers. I wanted to avoid constipation, but I was basically yelled at, nicely, by my psychiatrist, my medical oncologist, and my medical oncologist's nurse. My radiation oncologist and his awesome nurse had gently encouraged me to take more pain medicine, but apparently I am dense and need the yelling. So I'm back on painkillers.) [EDIT: Also learned: If you cry in front of a nurse who likes you, she will get a social worker, and if you cry more, they will give you a gift card to a nice restaurant.]
Fatigue: My radiation fatigue will peak about a week after my last radiation treatment. It is pretty bad. Last Friday I fell asleep at the Lowen's house. On the couch. While reading something on my phone. With four kids screaming around my head. No one knew I was asleep, because it just looked like I was on my phone. It was 7:15. SEVEN FIFTEEN. As Darcy said, it was "an impressive display of fatigue." I basically can't get out of bed without chai (for reasons I can't explain, the chai magically appears) and I can't do much most of the day without getting exhausted, and I am physically spent by 730, and go to bed at 830. I am getting enough sleep, so I can't fall asleep at 830. But I also can't do anything else. So I just wait until 10 or so and fall asleep.
My brain: I'm basically a mess. I had my first-ever honest-to-goodness panic attack in the car yesterday. Thankfully Craig was driving, and not me. I don't know what really happened. Craig describes the event as "you just freaking lost it." It lasted about five minutes. I felt like crawling out of my skin. I was freaking out. I wanted to get out of the car, felt strangled and nauseated, I couldn't breathe, my heart rate was wonky, I felt my nervous system act weird. Craig said he was quite worried I might try to get out of the car while we were moving on the highway. My psychiatrist says that she thinks we may have reduced the clonazepam a little too rapidly (not the ultimate dosage, but the rate of ramping down) and hopes it is a one-off. She says there is a lot about the brain we don't understand. We're holding steady on the meds and hoping for the best. If it keeps happening we'll switch meds.
My eyes. You guys. My eyes. I now have a pyogenic granuloma on my left eye, lower eyelid. It's a red lump in the mucous membrane of my eyelid. Right where the tube is. It isn't that big. It doesn't hurt. I basically tried to pretend it wasn't there la la la la until Craig said I had to call the eye doctor if it didn't go away, which it
didn't. It is a case of an "exuberant attempt at healing" according to the eye surgeon. He said we could cut it off, but the cause (irritation from constant contact with the tear duct tube) was still there so it would just come back. So I'm to live with it until Oct 30, when the tubes get removed. And then, because of this thing, I need more needles to the eye (numbing meds). Le sigh. But he promised it will be less of a big deal than reinserting that tube (the one that immediately fell out). Do not, I repeat DO NOT, do a Google Images search for pyogenic granuloma. You will regret it.
My ovaries: They're shut off. My hormones are at post-menopausal levels already. I got my first monthly shot in the butt today. Lupron. It didn't hurt. It will keep my ovaries off. This will induce menopause, except I'm already in chemopause, so my oncologist is expecting that I won't have any specific/terrible/hot flashy/scary/mood-swingy/hatchet-wieldy reaction to this shot. Cross your fingers for all our sakes! Menopause has lots of unpleasant side effects. I'm getting a bone density scan to get a baseline density taken. There are other unpleasant side effects. Trade off for not dying earlier from cancer.
Next up: After one month on Lupron, I'll start on an aromatase inhibitor ("AI") -- this is a daily pill. We're trying Femara first. It has the worst side effects of the three AIs on offer, but if I tolerate it well, it is the most potent of the AIs. If I can't handle it, we'll try exemestane or anastrozole next. Somehow or other, I'll be doing this for five years (though my hunch is that in five years, they'll want ten). Eventually the lupron will be a shot that lasts 3 months. This is the New Thing. If it were 2013, instead of 2014, I'd not be on lupron/AI combo, and I'd be taking tamoxifen instead. Because I'm actually premenopausal. You can't take an AI when you're not in menopause, because your ovaries just pump out too much estrogen. After menopause your body fat and some other parts of you still make a little estrogen, and an AI can handle that. But inducing menopause and giving me an AI works better than not doing that and using tamoxifen. This is news that came out in June. If I can't handle menopause symptoms, we'll stop and go to tamoxifen. I hope this all makes sense to you, because there will be a pop quiz.
The kids: I love them. They say "Hi, we're cute, and we're being very nice to mom, except not all the time, because we're little and it's our job to get in trouble. Sometimes we get annoyed that she's so tired. We think her boob looks owie. But we kiss her a lot."
The husband: Amazing. It's just amazing how much he can do, and how tuned in he is to what I'm feeling, and how he knows what to say. He's the only one who can cheer me up, sometimes. And that's a lot for him to deal with. I hope some of you are checking in on him.
OK BYE!
Natasha
Wazzup. — October 15, 2014
Hi folkses.
I've grown some more hair. That's pretty cool. It isn't quite as thick as when I cropped it close after my first chemo treatment, but it is almost that long now. Still soft. I feel less like a baby chicken and more like a Gund stuffed toy. Like that polar bear? My hair feels kind of soft like that. Which is nice in a way, but mostly just weird. I am still using that Aveda stuff I bought that is supposed to help the follicles activate, but since I didn't do a control by using it on only half my scalp, I don't know if it is doing anything or not. But it makes my hair feel a little less soft and more hair-like, since it is a leave-in, so I appreciate that effect.
I grew enough hair out-of-place near my eyebrows to need my eyebrows waxed, which is a Major Milestone. Now they look pretty again, albeit still thinner than my usual. And I have some new baby eyelashes coming in. Very exciting. My eyelashes are falling out, but since the baby ones are coming in, I'm not too concerned.
My underarm is healing!!! This week they have been doing shallow radiation on the tumor bed, called a "boost," rather than whole breast radiation. Although the machine looks even stranger with more pieces added to it, the radiation they are using is not touching my most-heavily damaged skin. And it's healing! Yay!! I can touch the new skin without flinching now. [Note: narcotics may also have something to do with less pain.] I'm hoping that in a week, week and a half, I might have the skin I need to go back to the gym. Even if I don't have the energy. :) I promise to be slow and steady about it. Don't give me grief. I can't WAIT to get back. I've been unable to even walk with the wonky armpit peeling skin mess, so this is really exciting. Two more radiation treatments to go!!!!!
I haven't had any perceptible effects from the Lupron shot that induces menopause, since I was in menopause already. [I have heard that it can still cause side effects, notwithstanding chemopause, so I'm glad to report nothing in that regard.] I have a bone scan scheduled, so they can get a baseline on my bone density and address any decrease related to the induced menopause. I haven't started the Femara (aromatase inhibitor = estrogen blocker) yet.
Is that it? I think that's it.
Oh wait - a tip from my naturopath: if you have trouble falling or staying asleep, try 2-3 ounces of tart cherry juice twenty minutes before bedtime (100%, nothing else added) (you can get it at PCC) (I hate PCC, too granola for me, but you can find stuff like this there) (so annoying to have to go to specialty stores but it seems like everything she wants me to do is special), which has melatonin in it in a form that is much better absorbed than the pills. Will this work? Who knows. Some of the stuff she suggested to me definitely works, and I trust her. So soon I'm going to start drinking a shot of cherry juice every night. [Maybe I should add vodka.] This wasn't OK during cancer treatment because ??? but is OK once I'm done with radiation.
Over and out! Natasha
Today. — October 17, 2014
Last. Day. Of. Radiation. The end.
Quickie update. — October 26, 2014
I'm back at the gym! I went for a short run! Yay! I cannot emphasize the emotional boost of those activities. I'm signed up for a 5k in December. :-)
The thing growing on my eye slowly went away, by itself, then... The plug fell out by itself! Then... another one grew on the other eye. I've decided this means that the other plug is ready to come out, and that the lumpy thing
will go away by itself. I have an appointment Thursday to have the remaining two plugs removed. I'm going to tell them not to bother cutting off the weird lump, because I hope it will instead go away by itself. I'm hoping this means Thursday will involve no needles.
Tomorrow I'm going in for a baseline bone density check (a DEXA scan), so they can monitor the effects of my future treatment on my bones. I hope we are starting out at high density!
I have a PT appointment tomorrow to learn a bunch of stretches that I'll need to do for YEARS because radiation had long term effects on your tissue. Radiation fibrosis or something like that. Sigh. Whatever. I have almost full range of motion, so I'll be ok.
I feel fine. (!!!!!!!!!!!!!!!!)
My radiated skin is still peeling. It is pretty raw-looking, but doesn't hurt that much. Mostly it's really dry and cracked and irritated, not the intense don't-touch-me pain from before.
I'm not zonking out at night any more. I'm still tired. But not all-encompassingly. It's great. Last Saturday, Craig said, "it's good to have you back."
It's good to be back. M'kaybye!
Le sigh. — October 30, 2014
OK so... the third of four tubes in my tear ducts fell out on Tuesday. Yay! This is the one that caused the second granuloma. The granuloma is still there. I had an appointment this morning, to take out the final tube. I thought he'd also remove the granuloma/I'd ask whether we could just wait for it to go away like the other one did.... but none of the above. He wouldn't take out the fourth tube, because it is really well-seated and not causing me any problems, and I am too close to the end of radiation (two weeks-ish). Radiation, although not directed at my eye, can also cause constriction of the tear ducts. (I don't understand why everything is connected to messing with my eyes. WTH.) So he wants me to wait SIX MORE WEEKS just in case. Ugh. Also he gave me a prescription of steroid drops for the granuloma, which he thinks will help with that. That I need to use for a month. (Patient: "What about the other three tubes? Doesn't the radiation affect them also, then?" Eye surgeon : "Why yes, patient with relevant and astute questions, it does. We'll just have to wait and see how they do." -- paraphrase.) Le big sigh. I really really wanted my eyes to stop being salt-crusty and makeup-unfriendly.
In good news - I have an "excellent baseline" bone density. Yay! We'll track this over time to measure how much the long-term treatment messes with my bones.
In other good news - the tech who did my bone density scan says I am 63.5" tall. Not 62.5", as I thought for years and years. Yay! I asked my nurse to change my height in my medical records but she declined. She says she'll remeasure me, because she only wants to enter her own data and not someone else's data. I was like, no, I like his data! I hope her measurement confirms that I have now grown an inch. This extra inch is really going to come in useful when I get early-onset osteoporosis, people. I want my extra inch.
That's it. I have five cancer-related doctor's visits scheduled in November. That sounds like a lot to you, perhaps. It is not a lot. It is few. Blissfully few.
Workouts going well. :-)
Also, in case you didn't know, they show Metropolitan Opera recordings at Lincoln Square cinemas. I am very excited about this. I am going to go watch me some pre-recorded, world-class opera soon.
Natasha
(Questions about 5k? See comment below.)
New normal? — November 13, 2014
Hello constant allies.
So things are starting to get to what I may need to consider my "new normal." I hate new normals. Living with something that you'd rather not. It's not a phrase used for positive changes.
I've started my aromatase inhibitor, Femara aka letrozole (the "AI"). (Since we've shut off my ovaries with luprolide, and I'm therefore postmenopausal, we can skip over tamoxifen.) I'm sitting around waiting for the side effects to start.... anytime now... nothing yet. One pill down, 1825 to go. My oncologist says that the side effects are either immediate- or delayed-onset, and either accrete gradually or occur suddenly. Woot. (Please note I don't believe I'll be done after 1825 of these pills, because I am pretty sure I'll be on this medication or some form of it for ten years rather than five, and my oncologist agrees with that hunch, as research keeps proving "longer is better." And, FYI because it is interesting to note, there are about 22 pills a day in my arsenal right now, but most are supplements per my naturopath, only three "real" pharmaceuticals in pill form, and the 1825 number applies only to the AI. I don't want to think about the total number of pills involved.)
I do have some side effects though - not from the AI, but from treatment generally (chemo + menopause). My LDL cholesterol, which was already slightly elevated B.C. has jumped up to 188. My HDL has remained steady (increased a few points). Femara (any AI, actually) will make this worse, as will continued menopause, which will make me tend to gain visceral abdominal fat preferentially over hip/thigh fat. Yay future heart complications. I've met with a nutritionist, and there isn't anything much to do with my diet. I am pretty (excessively?) weird already about transfats (stop eating these, people), and don't eat much butter or other saturated fats, and have a good body weight and exercise 5-7 times a week, pretty hard. We're going to give it about three months and retest my cholesterol, and then I guess we head over to statin land? I don't know.
I'm trying a particular type of plant sterols/stanols, which have been proven effective and won't encourage my cancer to come back (unlike fake meats -- like textured vegetable protein -- which I've never liked and am now allowed to officially avoid per medical advice -- yay). (NB: This doesn't mean they're necessarily bad, generally. But they're bad for my cancer. You weird soy-"meat"-eating people can continue to do that if you want, unless your doctor tells you not to, if you think it's a good idea. End NB.)
I'm having some trouble handling my anxiety about the recurrence of cancer. I mean, either I'm cancer-free or I'm not. Not knowing is hard for me. I'm not a very good "go with the flow" person, in this regard. Better than I ever have been before, but I am having a hard time. Yesterday my oncologist's nurse, Betsy, used the phrase "cancer-free" and I said, then why do I have to take these medicines? And she said, just in case. Just in case.
I was talking to a cancer buddy a while back, and basically, we're like that guy in the Matrix, who sells out his fellow humans because he just doesn't want to know the truth anymore? The bad guy. Not the computer bad guy, the human bad guy. He's chewing the not-steak, but his mouth is telling him it's juicy and delicious? I am that guy. I know that life is capricious, that nothing is guaranteed, that anything can happen to anyone, any time, I know to enjoy my time, to celebrate the now. I know it. But sometimes... I just wish I'd taken the blue pill. No one gave me the choice.
Please note that there are great things that have come from taking the red pill. I have some amazing new friends. I have some amazingly closer relationships with some existing friends. My relationship with Craig is much deeper. It was always strong, but it takes real personal hardship to plumb the depths. Some things you can't know because you wish to know; you can only know once you need to know. I do appreciate things more, and it's much easier to not worry about things I can't control. I have a much easier time letting things be because that's the way things are. Really I do. I can barely believe it myself. I take joy in daily moments of life. I enjoy hugs from my kids more than I ever did. It's kind of hokey, but it's true.
I don't actually want to lose those great things. It's just hardest at transition times. This is, supposedly, one of the hardest times of non-metastatic cancer treatment - you're done with all the high-tech, busy, active treatment, where you're surrounded by intelligent, capable medical professionals all the time, and you're kind of eased out of it back to "normal life," where you take a daily pill (and some people don't have that much research available to give them that pill, so don't think I'm not appreciating the medical benefits), and now somehow you're supposed to go on, but you know there's another shoe. Will it drop? Won't it? When? The blue pill doesn't take away the shoe, but it lets you not know about it yet. That's all. All of you reading this who don't have cancer or some other potentially terminal illness diagnosis? Your shoe could be closer than mine, who knows? Not you.
Not I. But I think generally, people don't think about "the shoe" every day until some shoe of some type falls smack in your face, and then it's hard not to think about the other shoes. Once it's fallen, the innocence lost -- I don't think it comes back.
"You'll feel normal again. But it's a new you, Natasha. You're a different person now, than you were before. But you'll feel normal again." --Betsy, my nurse, yesterday.
New normal.
Natasha
PS - I reread this, and it's all true, but it makes me sound a little more sad than I *currently* feel, so just a heads up, I'm OK right now. xoxo
Swimming in the seas of now. — December 9, 2014
I hope you're having a great holiday-feeling time. I am feeling very wintry-sprited this year. More than my "old normal." Probably because I'm not working much. Hah!
My friend Beth wrote an article that was on Huffington Post today. It is good, because she's smart. And funny. And although I love my new stylish hairdo, I also hate it. And this explains that rather well.
Jury still out on side effects of Femara. I had some dizziness, but that's gone. Yay! I have some joint pain, but it is tolerable so far. Let's give it a couple more months.
My feet were hurting so much a while ago, but I fixed that by buying new well-fit running shoes. Not everything is cancer's fault.
I tried pulling out the last of my four tear duct tubes... with a tweezer... not recommended. I have an appointment in a couple of days to have it removed. I really can't wait to get it out. [Yes, I really took a tweezer to it, and pulled and pulled, and no, it didn't come out, but how can you sit there aghast and be so sure you wouldn't try that? When the other three fell out of their own accords? How can you be SURE? Before I tried it, I would have gone bug-eyed myself if you told me I was about to!]
I met with a plastic surgeon in Bellevue, who is all fancy pants, the guy who I imagine does work on the Real Housewives of Bellevue. Yaknowwuddimean? He's super nice and friendly and approachable and just-the- facts. He told me that my surgeon did such a good job, I should send her a gift basket and leave well enough alone. And I quote: "You have great looking breasts!" Yay!! He would know, having lots of other breasts to compare them with. Somehow having a guy whose job it is to create breasts of perfection tell me that mine need no work was the last shove I needed, but I think I'm out of the haze of maybe-have-more-surgery-maybe-not. I will see Doc. Awesome again in about a year to decide on any minor revision work (because by then the side effects of radiation should be evident). We'll see what my fantastic-looking breasts do over the next year and move on from there.
The radiation has really tightened my pectoral muscle. It is a pain in... well, in the pectoral, I guess. I have to stretch it every day, and it is still tight. I work out at least 4 times a week... and it is still tight. This will continue for approximately... ever. This wasn't something I was aware would happen when I embarked on the whole radiation process (which is when you choose to have a lumpectomy instead of a mastectomy, FYI, not when you start radiation, because otherwise, all that "lumpectomy and mastectomy have equal outcomes" mumbo jumbo doesn't apply). Somehow that lack of awareness makes it worse. I mean, I knew I would lose my hair, and then mourned it, and then it was gone. With this - I finished radiation, got to some sort of new normal, and then realized, wait - THIS is part of the new normal? New new normal I guess.
I'm happy. I am going to a cancer retreat at Harmony Hill early next year. I get to do this cool thing because I had cancer. Yay(?). I feel very strongly like I want to hold onto the new space I have in my mind and my life, to live in the moment. One of my physicians told me some eye-opening information, that I won't share because it's not personal to me but to him, and then sent me this quote from one of his mentors, which I will share, because it is published:
A confrontation with death often creates a dramatic perspective altering opportunity. The German philosopher Martin Heidegger spoke of two modes of being. The first, an everyday mode in which we marvel at the way things are in the world. This is a state of forgetfulness of being, a feeling of being tranquilized by the cornucopia of objects surrounding us. The second is an ontological mode, a state of mindfulness and being in which we live authentically and marvel at the very 'suchness' of things. In this state the individual is primed for life change.
How do we move from the everyday state to the ontological state? The German psychiatrist and philosopher Karl Jaspers describes a major vehicle as the 'boundary experience', a jolting irreversible experience which shifts the individual from the everyday mode to a more authentic mode. Of all the possible boundary experiences, confrontation with death is by far the most potent. Time and again we see individuals who, in a confrontation with death, make dramatic life changes.
It is a familiar theme in great literature. For example,Scrooge in 'A Christmas Carol' and Tolstoy's Pierre in 'War and Peace.' Cancer patients have described the experience of re-prioritizing life values and trivializing the trivia in life and saying 'No' to the things that are unimportant and turning full attention to loving ones about them: the rhythms of the earth, changing seasons, concern about the model of dying they set for others. In a macabre sense, cancer cures psychoneurosis and gives an unmistakable, bittersweet poignancy to life. Still another way to put it is that while the physicality of death destroys us, the idea of death can save us.
Yalom, I. "Religion and Psychiatry." American Journal of Psychotherapy. Vol. 56, No. 3. pp. 302-316.
I don't fight my cancer.* I don't love it. I don't hate it. I don't like it. I'm not thankful for it. I'm not glad I had it, and I don't wish I didn't.** But I am curious. I am learning. I am exploring. I am working on being mindful. As my therapist put it, getting a potentially-terminal diagnosis of illness, when you're not near that part of the arc of life, is like being thrown into an ocean of mindfulness. I am learning to swim, and I don't want to get out of the pool.
Natasha
*Don't get me started on the use of battle-language for cancer.
**My only wish is that I will live long enough to see my children become the people they are going to be. But I also don't focus on that too much. Also, sometimes I hate it. But then I try to get back in the pool.
"Bang!" -- 2014 — December 31, 2014
I have a new lump in my right breast.
...
...
Did that sink in? The other breast. The supposed "good" breast.
I've known about it for a while (about a month or so), and I've talked about it to my doctor's office (both medical and radiation oncologists' offices), and was assured that a contralateral breast cancer in the first year is so incredibly rare, that it basically couldn't be. But after enough nights of not sleeping well and worrying about it anyway, I went in this morning. Kristine (my oncologist) felt what I felt; there is a lump.
She said she has felt thousands of cancers, and she doesn't think it is one. Do you feel relieved? Me too. Believe me.
We're having it fully checked out anyway, which means I'm having a round of diagnostic imaging on Monday afternoon.
Did you feel stressed when you read about this? Imagine feeling that way every time something hurts. It might have hit you as you read this because I said it was a new lump in my breast, and I have just had my Year of Breast Cancer, but it hits people who have experienced cancer All The Time. It's called canceritis. "My arm hurts - I wonder if that is cancer in my bones." "My eye hurts. I wonder if it is in my brain." "My stomach hurts. It might be gas, but it might be cancer." I don't have canceritis as bad as some people I know, but it's pretty hard to deal with. Anyhow - I don't think I have detectable cancer in my right breast. That is, I no longer think this lump is cancer. This will be confirmed on Monday. My oncologist is being thorough, not worried. I will sleep well between now and then. Unless something else hurts.
Other random news:
My feet? Yeah. It wasn't the shoes. I was telling Kristine about it today and she said that it is another common side effect of Femara. So apparently, EVERYTHING *IS*, in fact, the cancer's fault. So I'm to wear great shoes, keep working out, and continue to have foot pain.
Benzodiazepenes: I tried to taper off from the clonazepam a little too quickly. This was evident when a rude comment from someone in Costco's optical department ended with me leaning up against the stacked boxes of raisins in the aisle, sobbing. I was "that crazy lady at Costco." I felt a bit like I was watching myself being that crazy lady, noticing people walk by, wonder if they should stop and help, sigh with relief when they discovered I was talking on my phone, and quickly and gratefully veer their carts away from a possible direct encounter with The Crazy. [As a side note, another Costco employee was so nice to me, she even offered to walk around the store and help me shop, if I needed it. I decided I didn't, but ended up crying twice more for No Apparent Reason, which induced a fellow customer to pray with me in the parking lot. This is two impromptu prayer sessions so far during this Year of Cancer. As you may know, I am not religious. However, I shun no source of support, and it does amuse me when strangers pray out loud for me, so that made me feel better, and so it's all good, right?] Anyhow, after later ruminating on my rapid and extreme emotional response to a snarky comment, I decided this was all because I should have tapered from the clonazepam more slowly... and went back on it that night. My psychiatrist agreed with me, and although she'd never think anything as mean as "I told you so," I think she basically told me so.
My teeth: I had fillings, which sucks. I had three. That's two more than I've ever had before, because I had great teeth. I hope the chemo damage to the strength of my teeth isn't permanent, and this is it for chemo-related tooth decay. I am using extra flouride and did so throughout chemo. The dental assistant, who is awesome and takes great care of me, told me that she was frankly surprised I only needed three fillings, after all the mouth trouble I had through treatment. But my mouth still hurts, and it's been two days! WHINE.
My eyes! Tube-free and not tearing! Yay. I really like those eye surgeons, they're good people, and I hope I never have to see them ever again for the rest of my life.
Uhm... that's it, I think.
I'll loop back around on Monday and confirm that that new breast lump is just a scare tactic. Natasha
Pristine — January 5, 2015
Hi! The radiologist was pleased to report that the mammography showed nothing exciting, and then said that my ultrasound imaging was "pristine." She also clearly could locate the lump by feel--it is quite close to the skin, not tiny, and hard to miss--but it is invisible on mammogram and ultrasound. All the tissue looks completely normal/like the inside of a boob.
She said she can't biopsy it, since there isn't anything for the ultrasound to guide her to biopsy. Since it is newly- fibrous breast tissue for some reason, and I'm now a suspicious-cell-haver, she said my options are to monitor it, or what she would do -- go back to my breast surgeon so the surgeon can get her wise hands on it. And then if the breast surgeon decides it is merited, she can do a palpation-guided biopsy (i.e., by feel). So that's on Friday. I'm not worried and I like my breast surgeon, so that's fine.
Also they went ahead and did the mammogram on the naughty boob too, so now I don't have to go for that next month. So just an MRI next month (part of normal post-cancer screening, which is every three months for a while).
And in good news I was accompanied by Beth, who came bearing a delicious mocha, so all in all a winning day. Thanks for the love.
Natasha
more waiting. — January 9, 2015
Boob update: No needles today! MRI scheduled for Tuesday afternoon, next week. Then we'll know more.
Natasha update: Kristine and I went on retreat for a few days, at Harmony Hill. The best part was spending three days with Kristine. I am a selfish and jealous person at heart! She's MY friend, and I got her for three days!
There were good parts of the retreat too.
I don't want to write it out right now, but hear this: I ate beets again. Lots of beets. So... Never say never. Natasha
Lump Vader. — January 16, 2015
Hi everyone!
We don't know what the lump is, but so far there is no evidence that the lump is bad news. Yay! The mammogram, ultrasound, and MRI all show nothing where the lump is. Everyone can feel it. So it's not in my
head.
At the same time it is very much much in my head, all the time. I mean, really - I have breast cancer. Now I have a new lump, in my breast, that can't be seen by any imaging technology available. And I'm supposed to be all relieved, and not worried, I guess? I don't know. It doesn't seem to be working that way.
I don't think it is cancer. But my body hasn't really regained my trust, and this is another setback to our trust relationship rebuilding process. On the other hand, I don't think this lump is going to hurt me physically, and at least I can feel it so we can keep monitoring it for changes.
In other news,
** I got my first haircut yesterday! It looks like the same thing, just less messy around the ears. But it felt really weird.
** I know you guys have missed my profanity-laced posts. Fear not, my life is not short on profanity. When I was at the MRI last week, the lady gave me the worst MRI constrast-IV poke ever. Kristine was with me, and I am sure could attest that if profanity would make MRI images light up, my scans would have been beacons. I think the echoes of some of my expletives might still be bouncing around in the room. Apparently the nurse believes she either poked a vein valve or vein wall with the IV, causing vein spasms. I told her in a grumpy voice that I was going to write about it in my blog.
** My gym is starting a newsletter and will feature a member in each issue, and they've chosen me as the inaugural member to feature. Which is super awesomesauce.
** I am flying out of town for a week, solo, next week. I'm going to help my fave sister Michelle organize her place. That is also awesomesauce, because I love organizing stuff.
I'm going to take all my posts and collect them together on a new blog thing that I am starting, because I really don't like caringbridge, and because I want to make them public. I'm going to replace the words Kid1 and Kid2 with placeholders or something, but otherwise I'm putting things up unedited. I hope that my blog will be a resource of some use to some person somewhere who gets a diagnosis and is looking for something. I have been thinking about writing a book, and maybe I will, but in the meantime my thoughts can continue to ruminate on a blog, and you all can comment on how awesome I am and how proud you are of me, publicly. I won't move the existing comments over there, because (a) I don't want to get permission from each of you and (b) it would be too hard. So once I've blogged it up and post the blog URL here, please do go over there and write inspirational comments for the world to read. I will then occasionally write other stuff, which you should also laud profusely.
I feeling up and down. My health is pretty good. My back hurts and my feet hurt, and that is just going to be the way of it for at least five years I guess. My pectoral muscle is a fucking pain in the ass ("look! there I am!" -- profane Natasha). It is sooo tight all the time. ALL. THE. TIME. And I can't do anything about it. But I got a facial, and a salt scrub, and I'm heading out for a back massage, so overall life is physically OK. But my brain is still sluggish, and I'm really short on motivation. I feel a bit like those people in that movie Awakenings. If someone lobs a ball at me, I can absorb motivation from the ball and act. But if I'm left to my own devices, I feel somehow like I'm just waiting and waiting.
Ciao for now.
Natasha
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