Radiation 9/35

Yesterday was my 9th radiation. On Friday afternoon, I will be one-third of the way through.

So far, no bad effects. I think the fatigue is starting a little, but nothing major. My skin looks normal (or “fantastic,” according to my radiation oncologist) except the scar in my armpit where they took out a lymph node is now red, as are some of the vitiligo spots in my armpit.

My hair is slowly but surely returning, but right now is platinum blonde so no one could even tell it’s coming in by looking at me. No period yet; don’t know if it will ever come back, but I sure hope so. Menopause sucks.

The worst thing about radiation so far is it’s a total time suck. Every morning I either have an activity with the kids or am taking Gregory to and picking him up from school, which is a 20-minute trip each way – so an hour and 20 minutes spent driving. Mid-day I have appointments or errands. And then at 3, I leave to go get irradiated. By the time I get home it’s after 4 and I have to start dinner for the kids. Then it’s family time until the kids go to bed at 7:30, kitchen cleaning time, and time for Julian and I to be together until bedtime around 10. This leaves me zero time to myself and zero time to clean house. Things are piling up around me and I feel absolutely bonkers. I am zipping this blog out in the 20 minutes before I take the kids to gymnastics. I am totally overwhelmed and feel depressed knowing it’s going to get worse before it gets better, but I don’t know what, if anything, I can do about it. We do have help with the kids but Gregory ALWAYS wants to be with me and when I don’t do things with them I feel terribly guilty and like I am being a bad mother.

So yeah, so far radiation has basically stolen time from me, and that has actually been rougher than you would think. But I am soldiering on – only another month to go.

Radiation, Week 1 (or Week 1/2, if you prefer)

So I wrote I think on Wednesday, when I started, and hadn’t actually gotten any radiation yet. Now I’ve had two days of radiation, so I am practically an expert.

On Thursday, I was browsing one of the cancer groups on Facebook and happened upon a post regarding breastfeeding after radiation. This was something I had previously been concerned about and asked the nurse about during our very first appointment a long time ago. My radiation oncologist – who frankly I am not super fond of, because she always seems to be in a rush and not have enough time to talk to me or answer my questions (like, on Friday she was literally standing with her hand on the doorknob while I was asking questions) – had already left the room and could not be bothered to come back so the nurse kept having to run out to ask her my questions. With regard to breastfeeding, she came back with the answer that “my supply would be lowered.” Ruby has been a super producer, so I was not overly concerned with this answer. After reading the post on Facebook, I started doing some online research and discovered that every study that has been done indicates that women are UNABLE to breastfeed after lumpectomy and radiation because the breast tissue is too changed and damaged. The women in the studies who could produce anything – through either nursing or pumping – largely gave up and nursed only with the untreated breast because the amount produced was so little that it was not worth the time.

This was understandably a big shock to me. I am not crazy about being pregnant but nursing – which I was only able to accomplish with Conor – ranks among my favorite things in the world. I texted Julian about how heartbroken I was. And of course, the day I found this out was the day I started actual radiation treatments, so I didn’t want to do it at all, and when I laid down on the bed I began crying. The techs were super super nice and dabbed my eyes for me (my arms were already above my head and I was all lined up) and told me I didn’t have to start that day if I didn’t want to. The fact is, I didn’t want to start ANY day after learning what I had. I explained why I was so upset and one of them said it was totally understandable, that I was grieving a loss, and I realized that’s exactly what it was. Cancer took the possibility of breastfeeding from my right breast from me. And unless I choose to forego radiation (which would be stupid), that ship has sailed. And it sucks.

ANYhow, I got the radiation, both Thursday and Friday. Thursday I had all sorts of phantom pains – pain in the gallbladder incision, heartburn – and was worried they were radiation related. I had none of them on Friday after radiation, however, so I think they were in my head. My breast did feel a little tender yesterday, but no skin changes yet. ALSO! Dr. InARush told me that only 10% of women experience tissue changes. This doesn’t seem accurate since EVERY woman I spoke with in the Seattle BC group mentioned changes, but perhaps it’s only 10% of women receiving the type of radiation I am. So that gave me hope that I won’t be disfigured by this. She also said it’s all about your body’s ability to heal itself, and my body has always healed quickly and well. So, fingers crossed!

That’s all the boob news I have for now. Onwards!

Out of the frying pan, into the fire.

I went in today for what I thought was going to be my first radiation treatment, but it turns out the first treatment is actually just a dry run to get ready for the first actual treatment, which will be tomorrow. So basically I got myself all anxious for nothing.

They got me all set up on the table, located my tattoos, drew around them in magic marker so they could easily find them again tomorrow, and then took some X-rays. In between, they came in and drew on me with more magic marker so I could see what the treatment area would be and thus know where to apply the calendula lotion.

All this time I had been lead to believe that they were just going to shoot a radiation beam into the right side of my breast and it would be a super quick zap and I’d be on my way. So it was quite the shock when she drew on me in several different places all around my breast.

I went to get changed after and saw that there were green marker marks essentially from the top of my breast bone between my breasts extending down around the bottom of my breast all the way back up the outside of my breast and well into my armpit – nearly to my back.

I went out to the waiting room and met Julian in silence. I told him super quietly that it had just been a dry run and that the real therapy would be tomorrow. As we walked out he told me that he’d looked at his schedule and could come with me again tomorrow and – are you all right? You look upset. At which point I began fighting back tears, and told him I’d explain once we were in the car.

Once in the car I started weeping quietly and explained that the treatment area was much larger than I expected. They have fucked with my entire body for the last three and a half months and one of the only places I HAVEN’T had major issues is my skin, so of course they have to follow up with this. And this is MY body, but it sure as hell doesn’t feel like it belongs to me right now, and I might not love it all the time, but it’s the only one I’ve got and I’m sick of people screwing with it.

Then I sucked it up and decided that if I can make it through chemo and baldness, I can make it through this. But it still sucks and I hate cancer so much.

Finally, I have been having a lot of muscle pain in my legs and arms and also pretty severe joint pain in my hips. I am not sure if it’s the chemo or the Lupron, so I emailed Dr. Kaplan, who said we could chat about it. I asked him to call me when he had a few minutes to chat and he has not so I am a bit disgruntled about that, so I guess I’ll try to call him tomorrow.

That’s basically all the news I have for now ALTHOUGH I do need to post about eyebrow pencils, and I think I will do that on my other blog and cross-post to here.

OH and my friend Jen buzzed my head last night for what I hope will be the final time. Come on, little hairs! Make yourselves known!

Radiation Tattoos!

Okay so first of all here’s the radiation tattoo pics I have been promising!

radiation tattoos

You ever see that episode of Friends where Phoebe is all gung-ho to get a tattoo and Rachel begrudgingly agrees and then in the end Phoebe freaks as soon as the tattoo needle touches her so she only ends up with a spot? I actually did my freaking BEFORE, and now look! TINY PINK SPOTS! I have two more on my sides that I can’t see.

In case it’s not obvious, the black circles I added to indicate where the spots are – the tattoos are literally just the tiny pink things in the middle. Also the scar is from my gall bladder removal in January last year – 2015 was not great for me. Moving on.

The point here is that if you’re all freaked out about radiation tattoos, DON’T BE! And if you don’t want the blue/black tattoo dot reminders, YOU DON’T HAVE TO HAVE THEM! Think pink! At some point I’ll get Julian to shine a black light on me AND take a picture, although that’s starting to get complicated.

 

Radiation, Last Chemo, and All That Jazz

It has taken me way too long to write this, but we have had a lot going on around here! Even right now, I am chemo sick but have a toddler sitting next to me babbling away because he has separation anxiety and basically will only leave my side if dragged away kicking and screaming (literally). Yes, we have a doctor’s appointment scheduled re this.

On Monday morning, I went in for my radiation prep. I have been DREADING this, mostly because of the tattoos. When I was speaking with the two –  nurses? techs? I never know exactly what they are in theses situations – gentlemen regarding the procedure, what was going to happen, etc, I expressed concern over the tattoos. I told them I’d been told they would resemble freckles, but that I am so fair-skinned that all my freckles are light brown, so there is no way a blue-black spot is going to look like a freckle on me. I also told them that Dr. Morris – the radiation oncologist – had told me that if they really bothered me, I could have them removed.

“Have you seen or heard about the ultraviolet tattoos? They’re pink,” the one gentleman, Dan, asked me.

“No!” I replied, and the other gentleman, Jude, showed me one he had on his arm. Now, Jude was rather dark-skinned, so on him, the tattoo was really only visible under ultraviolet light. Still, PINK! Say no more, mon amour!

(Also, turns out Rex Manning Day is only 7 days away, so this is quite à propos.)

Anyhow, the lying in the CAT machine was no problem for me. I’m not really claustrophobic (which I swear I was asked if I was at least a dozen times that morning), and I just closed my eyes anyhow. I was a bit nervous about what the tattooing would feel like, although they were very blasé about it. Turns out they don’t use a gun or anything, it’s just an old fashioned tattoo. They put a little ink on your skin and pop it in with a needle. Doesn’t even hurt as much as a shot since you don’t have the injection part. Super easy! So I got four of those – one on each side, just off my breasts, that I can’t even see, then one right in my cleavage, then one kind of at the end of my sternum. They’re all very small and look like pin pricks of fluorescent pink highlighter, but when you shine a black light on them, they glow! I really want to get a pic of them to post but it’s hard to hold my boobs apart and click at the same time, so I will have to enlist the help of Julian this evening – stay tuned!

So got through that okay. I think I have already talked about radiation and side effects but as a quick recap, I will be starting on April 20th and going for six weeks – so through about the first week of June. It’s about 15 minutes a day, five days a week. At first I will feel fine but the fatigue will be cumulative. I will also likely get a sunburn like rash on my right breast where they shoot the ray in. It’s possible the treatment will affect my breast’s size and texture, though I’m praying ol’ Ruby makes it through this unscathed. I have to discontinue a bunch of supplements – including my multivitamin! – before I start treatment, which is kind of weird/awesome. LESS pills to take for once! And the nurse recommended I use calendula lotion on Ruby three times a day, which is going to be a pain in the neck, but I’ll do it. That’s about it for radiation info I think.

Then on Wednesday, the big day – LAST CHEMO! It feels weird to say “last chemo,” almost like I am tempting fate, so I usually try to add, “hopefully.” But that’s what we’re planning on.

My friends Erin, Alida, and Mari came by to celebrate with me, and their visits were nicely staggered so I had company (besides Jules of course) the whole time. And Erin brought me THESE:

InstagramCapture_f2448766-808d-4a75-95a0-81b27ac9ec1d

 Which are fabulous and nearly one of a kind, as she bought them from a street vendor in San Francisco who doesn’t have a web site! I have been looking and looking for my black cat tattoo design and everything is either blah or too fancy or too typical – and now these! And Julian suggested I have the eye be the ultraviolet spot which sounds SO rad. So maybe this is it!
Anyhow last chemo went fine and although I am now of course chemo sick I am so happy and positive and the sun has been shining like crazy so I am feeling so good about all of this! Nearing the end of the road now and really looking forward to putting this all behind me and reclaiming my life.
YIPPEE!

Thank you, and armpit hair.

First of all, thank you so much to everyone who has commented, texted, and messaged me about my last blog. Your supportive words really mean more than you know. Whenever we have to make a big decision there is of course uncertainty – but the love, support, and most of all the understand you have all expressed has really bolstered my confidence in my decision. Thank you, sincerely.

Second of all, met with the radiation oncology team yesterday. I will start radiation on or about 4/20 and finish or or about 6/3. Likely side effects are fatigue, which will be cumulative, and sunburn/rash/dry skin at the site of the radiation (good ol’ RB [right boob] – or Ruby, as she shall hence be known) as well as possible changes in her texture and size. The weirdest thing (to me) is I have to stop taking a bunch of my supplements, including Vitamin C, veggie DHA, and my multivitamins, for the course of the treatments. I am also only allowed to use natural deodorant* and AM NOT ALLOWED TO SHAVE MY RIGHT PIT.

Now, okay. I have dealt with chemo. Diarrhea, pills, fatigue, chemo mouth, depression. I have and am weathering it. But honestly, when she told me I can’t shave my armpit for six weeks… well, I was close to saying forget it. You can call me whatever you want, I don’t care. Tell me about how shaving is a stupid societal construct. I don’t care if you shave your armpits, and I don’t care what the reason is. I shave mine, and I like them shaved, and I keep them shaved, and I DON’T WANT HAIRY PITS. I am appalled at the very idea that I will have one unshaven armpit and am already pondering trimming techniques. So in the end, assault my body with poison, nearly kill me, but do NOT ask me to forego one of my basic tenets of personal hygiene. That I will not tolerate.

*I HAVE ACTUALLY FOUND A NATURAL DEODORANT THAT WORKS. Thank God for the timing on it too. I have been using it for about two weeks but am only posting now (because usually by the end of a week or so I can tell if it’s going to stop working or not). I am so amazed by how well this works that I have actually messaged the company because I am having a hard time believing it’s actually all natural, but the founder emailed me to assure me it really is. The name of the product is Bali Secrets and supposedly it’s really made in Bali. You can buy it on Amazon here: http://amzn.to/22hMZEB If you decide to try it please let me know if it works for you too – I am truly astonished by this stuff.

Decisions, decisions.

I’m going to try not to go on, because I know reading people’s meandering thoughts on themselves and their issues – whatever those issues may be – can really be quite boring, and I like to think I am not arrogant enough to think my musings are any better than most. Nonetheless:

Being diagnosed with cancer is not a decision, but it’s the start of many. Treat or don’t treat (seems crazy, but look at Jackie Collins)? Lumpectomy or mastectomy? Chemo or no chemo? Naturopathy or no naturopathy? Radiation or no radiation? Hormone therapy or no hormone therapy? And on and on and on. Having cancer is one of the lowest blows I’ve been dealt, but I don’t get to sit back on my laurels and wait it out. I have to do research, ask questions, and look inside my own head and heart for answers that don’t exist, that are just guesses. Educated guesses, but guesses nonetheless. Some people are willing to take everything their doctor says as gospel and just follow that path, which is great – but it’s not for me. I have every faith in my doctor, in his education and experience – but he can only tell me what is right for the majority, not for the individual. And I am, if nothing else, an individual!

So as much as I wish I could simply say, “I’ll do whatever you say, just tell me where and when,” I just can’t. And now here I am at the last decision I mentioned above – hormone therapy or no hormone therapy?

I have talked about it ad nauseam in this blog, so I’ll just do a brief update here. The lesion removed from my breast was determined to be estrogen receptor positive – ER+. What that means, in brief, is that estrogen helps it grow. So as long as my ovaries are releasing estrogen into my system – which, according to Wikipedia, will be for the next 7 – 17 years – any stray cancer cells in my system, or new cancer cells that develop, are likely to be boosted by the estrogen coming from my ovaries. Solution? Taking a pill or getting a shot to turn off my ovaries for the next five years to deprive those cells of estrogen.

The drug of choice to do this is called Tamoxifen, and I have already decided against that. There are a myriad of reasons, which I have discussed in previous posts (several previous posts), but the primary reason is that it and Prozac are completely contraindicated for each other and I am not sacrificing my mental health. I’m just not doing it. So as I mentioned in my last blog, Dr. K suggested I stay on Lupron, which is what I am currently on now along with chemotherapy because it’s supposed to help preserve fertility (in some women, some of the time).

Lupron is… really shitty. I am bloated. I am fat. I am hungry constantly. I am getting new wrinkles (literally, it’s not just in my imagination). I cannot sleep. I have to be on ANOTHER medication to cut back on the hot flashes and night sweats, which were occurring roughly every half an hour – try to imagine waking up every half an hour on sheets completely drenched in sweat. I have never been anti-medication – it’s quite literally what keeps me sane – but I am caught in this medication to treat medication to treat medication cycle right now and I HATE it. I long for the days when all I needed was an antidepressant and an antacid daily! In the end, I don’t want to do Lupron either. Which means, really, I DON’T WANT TO DO HORMONE THERAPY. That’s it.

Last visit, while I was crying about this very subject, Dr. K said that with my cancer, when it was caught, how I’ve opted to treat it, etc., my survival rate is already in the 90th percentile. He also said that hormone therapy will only increase that percentage by a few points. So there’s the decision: Is five years of misery, of not feeling like myself, of pills and shots and feeling like I have no control over my body, worth those few percentage points? And the answer is: No one knows. If I don’t have a recurrence, it’s totally not worth it. If I do have a recurrence – we still don’t know, because I might have had that recurrence even WITH the Lupron.

So I think in the end, my decision, hard as it is, has been made. I will finish my chemo. I will do the radiation. And then I will say au revoir, cancer, and move on with my life.

And although this is already far longer than I intended, let me close with one last decision I have made: Cancer is not going to run the rest of my life. I have seen lots of posts about how breast cancer changes you, how once you’re diagnosed it’s always there, the other shoe waiting to drop (if you’re unclear why, please see my post on metastatic breast cancer). Yeah, it’s changed me. I will never forget this time, nor am I ignorant about what it means for the future. And I’ll follow up with every test suggested, stay on top of my health, remember that 30% of women with breast cancer end up dying from it – but also that 70% of women don’t. I’m planning to be part of that 70%.

Black cat rising

For many years I have thought about/talked about/considered getting a tattoo – a small black cat, somewhere that would only be visible if I was in a bikini. I have always decided against it, for a number of reasons – one being that at this point I have gone 37 years untattooed while virtually EVERYONE else my age has at least one. I have remained unmarked.

And then here comes cancer, and it’s all pleased with itself because it’s already marked me, and will mark me with ink when radiation begins. “Hey, lady! Guess what! Here’s a scar! And another scar! And ANOTHER scar! And guess what else? TATTOOS! Ahahahaha! You can get rid of me, but you’ll never be able to look in a mirror and not remember me!”

So I’m thinking maybe it’s time. Maybe I should get my first tattoo BEFORE radiation. A middle finger to cancer, a way to not allow it to be the first to mark me in that way, and to show it that maybe it’s taken one of my lives, but I have 8 more in me.

Maybe.

I am scared.

I am scared I am scared I am scared I am scared I am so damned scared.

I don’t know why I just – I am having like a fear panic attack. I am supposed to be going out with a friend tonight and my hands are shaking and I am nauseated. I assume it’s because I will be seeing the doctor tomorrow and finding out my treatment schedule, but I don’t know why that should scare me any more than what I already know. Still.

I am so scared.

I’ve never known fear

I hate this. I HATE this.

So here I am. I feel great, my wounds are healing. They cut out the cancer. It’s gone. …right?

I’m being a mom, I’m being a wife, I’m getting ready for the holidays, I’m organizing, bill paying, cleaning, dog walking, I’m living my life the way I always have. I’m a firecracker.

And they tell me, “Do this, just in case.” And, “Also do this.” And the thing is, I feel great, and those things will make me feel horrible. Each one has not only side effects during treatment that make life less livable, less enjoyable, but also potential long-term effects. Cosmetic effects – shrinking and firming of the breast, permanent hair loss, skin discoloration – and scarier, more devastating internal effects – more cancer (it’s called cyTOXan for a reason), loss of fertility, permanent menopause.

So I feel great, I think the cancer’s gone… but just in case. Just in case, I should risk my mental, emotional, and physical health for a possible positive outcome. The doctors say, the statistics say, the people who love me say – do it, just in case.

Would I rather regret something I did, or something I didn’t do? What if there end up being no regrets at all? Or what if the treatments take away my sparkle?