Radiation 18/35

Not such a good day.

WP_20160516_15_23_58_Pro

The radiation is really starting to take its toll on my skin. My right nipple is significantly darker than my left, and my entire breast feels heavy. I am developing a red, spotty rash from above my nipple to into my armpit. Meanwhile, I have vitiligo in my armpit, so the radiation has made it very red and tender, like a sunburn. Unlike a sunburn, the redness and soreness do not go away. In fact, I learned from my tech today that my skin woes are really only just starting – they will get worse, and continue to worsen even after I am through with radiation (June 9). So essentially I am looking at my skin darkening, burning, and possibly (likely) blistering and opening before this is all over, which really won’t be until the end of June.

WP_20160516_18_33_36_Pro (2)

I am tired. Not fatigue-tired, thankfully – that hasn’t hit me yet, though I am sure it will. I am mentally tired. I am tired of fighting this enemy that I can’t see or feel. I am tired of waging war on my own body to combat something that may or may not even be there. It has been 7 long months since my first surgery, and I have mostly stayed positive, but today, as I lay on the table, holding those fucking pegs, I thought to myself, “What if I just died? If something killed me, then I wouldn’t have to do this anymore.” I don’t mean suicidal, though I have been there – I mean just, I don’t want to do this anymore. I don’t want to face one more day of self-harm for a result I may or may not see. And my friend, her mother went through all this shit – surgery, chemo, radiation – and guess what? She just had a tumor removed from her spine. Metastasis. So is this worth it? I really don’t know.

I want to quit. Just say, fuck this, I have done enough, been through enough. There is only so much the human mind, spirit, and body can handle, and I am at my limit. When you start to think death is a preferable alternative, I think it’s safe to say you’ve used up your reserves and are pretty much at the end of your rope.

But then I talk to my breast surgeon, who tells me he doesn’t ever think I am going to deal with this cancer again. And I talk to my Mom, who offers words of sympathy and encouragement. And I talk to my husband, who makes me dinner and takes the kids up for their bath so I can write it out. And I talk to the ladies in my Facebook cancer group – some of whom have been through this and come out the other side, some of whom are facing it head on right now, just like me – and they offer words of camaraderie and praise. And I realize: this will be all right. I will be all right.

So yeah. Things suck today. But I’ll go back tomorrow, and every damned day until I’m done, and I’ll suffer and have bad days but in the end it will be behind me and if the cancer does come back, at least I know I can say I did everything I could.

Radiation 12/35

I was cruising along so well that I got comfortable and thought maybe I could do this without any majorly ill effects. I was wrong. And I’m not even halfway done – the treatment cycle or the week.

My right breast is swollen and tender. My right nipple has gotten darker and is sore like a bruise – like a terrible sunburn, the kind that turns your skin nearly purple. Maybe I could deal better if I didn’t have – and LOVE – my children climbing all over me all the time, kneeing me in the chest as often as resting their heads on it. The scar in my armpit from my lymph node removal gets pinker and pinker, and the skin looks thin – not what I would expect from scar tissue. I am slightly afraid it will split, as I have read radiation skin can and often does.

WP_20160511_10_27_48_Pro (2)

I will ask my doctor about it when I see her Friday.

Funny, the side effects from this treatment really are minimal compared to chemo, but somehow it seems worse in some ways. I think the side effects of chemo were immediate and tangible, but the side effects of radiation are cumulative, so there is more anxiety involved.

And speaking of chemo – six weeks out from the last one today, and the joint pain unfortunately continues. Advil helps, but I try to use it sparingly as I don’t need a destroyed liver on top of the joint pain! Have had acupuncture twice and have noticed no effect (other than the hour lost sitting bored with needles in me). I’ll keep trying.

So, blah. Not a great day for me today, BUT – we did get Gregory’s ear tubes yet and he has had an immediate and overwhelming improvement in his hearing that has made us all giddy. So I’m trying to focus on all the beauty and good outside of my own body for the time being.

Post-Chemo Joint Pain

This is another one of those blogs I am writing more for the benefit of others who might go through the same thing than for my friends and family to read. That said, feel free to read on!

On chemos four and five, I found I experienced joint and muscle pain a few days after treatment that would last several days and then subside. I experienced the pain again after my sixth and final chemo… but it has not gone away.

I waited some time to contact my oncologist, expecting the pain would go on its own, that perhaps it was lasting a bit longer simply because the chemo meds had built up in my system. When I did finally contact him, he was stumped and asked me to make an appointment, and said that he’d do some research in the meantime. I did some research of my own (through Google, of course – does that actually count as research?) and discovered a number of people complaining about the same thing but no actual articles by anyone about the cause or how to treat it.

When I saw Dr. K, he told me he’d discovered that post-chemo joint pain is “a very uncommon but very well-documented” side effect, and that I could expect the pain to subside within two months. I wish I had asked more questions – such as what causes it – but I was so relieved that it had an expiration date that I didn’t even think of it.I did ask him how to treat it and he told me to take OTC anti-inflammatories, like Advil.

It’s been a couple weeks since then and I am unfortunately still in crippling (literally) pain. I am fine when I am up and moving, but if I sit for more than a moment, my hips and knees scream in pain when I finally rise. Sitting on the floor – which, with two toddlers, is a HUGE part of my day – is not only terribly painful to get up from, but also embarrassing if I have to do it in front of others. I look like an overweight, weak baby giraffe, trying to get my legs under me. My hips and knees are not the only joints that hurt, however – my feet, hands, and shoulders also ache, and in the morning when I wake up, I have to clench and unclench my hands multiple times just to get them to work properly.

I am really depressed and stressed out by this pain. It is a part of my daily existence and has made pretty much every part of my life either more difficult or more embarrassing – oftentimes both. I asked Dr. K if I could go see an acupuncturist and he said by all means. I booked with an acupuncturist at Swedish, but they can’t see me till the 24th, so I have begun seeing a doctor who is SUPER conveniently located about 4 blocks away. I had my first session yesterday and I have to say quite honestly that so far I have not noticed any difference (he said I should notice an immediate difference) but I have two more sessions scheduled for this week.

I am also going to email the American Cancer Society to see if they have any advice or information about this, which I will add here if I get it.

If you’re going through this too, you’re not alone! And if you’ve been through this and recovered, I’d love to here advice, suggestions, or even just words of encouragement. 🙂

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!

CHEMO MAKES YOU FAT.

That’s it. I just wanted to say it because in the movies, cancer/chemo makes you all skinny and hallowed. And from my experience – and according to the nurse I spoke with at my last chemo – that is not the case for EIGHTY PERCENT OF WOMEN. I lost a little weight after my first chemo and I was all stoked that at least one good thing would come of it.

WRONG.

I am 20 pounds heavier than when I started and it sucks, because I was not skinny to start with. The only positive thing anyone should expect to take away from chemo is cancer treatment. And not having to shave, which I admit I will miss.

CHEMO MADE ME FAT. TER. And if it makes you fat, too, you’re not alone. Hang in there, sister. It will be over soon.

This Is Me.

kate

First shot. No makeup. Natural light.

I was looking at myself as I dried off from the shower, and I felt the usual things I do when I see myself naked – some disappointment, some stress, some disinterest. And then I really started to look.

I am not a young woman anymore. I have scars – from a miscarriage, from two pregnancies, from gall bladder surgery and breast cancer. My breasts sag from age and from nursing two children. My stomach is pouchy from pregnancies and food and drink and the medications I’ve had to take and life. I’m about 45 pounds heavier than I’d like to be and I have cellulite and a muffin top and bat wings. My skin is spotted with freckles and vitiligo and old tan lines. My head is virtually bald, my eyelashes and eyebrows thinning, my eye sockets slightly hollow from chemo and illness.

But then I saw my eyes. And I truly stood up a little straighter. My eyes, my father’s eyes, my green eyes – they are clear. I have been so fortunate in this short life that it is astounding, surmounted each challenge with which I have been faced, been blessed with health, wealth, love, and LIFE.

I looked at my eyes, and my face, and I realized – everything on my body is just as it should be. Only this body has been through the things it has. Only this body has known this glorious and lovely life. And if I look a little hollow, and little round, well that’s just as it should be. I am not 21 – I am 38 and damned proud I have made it this far.

I am NOT a young woman anymore – and I don’t want to be. I want to be just who I am, where I am, with clear eyes that have seen me through it all.

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.