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!

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%.

Oncotype DX Results

Agh okay so I don’t feel like blogging this. I don’t know why, just not feeling it. So it will hopefully be pretty short and succinct.

My Oncotype DX results finally came back. My Recurrence Score Result is 22 (out of a possible 50) which puts me just above the low range in intermediate. Good news/bad news situation. Let’s do bad news first and get it out of the way.

BAD NEWS
They don’t know what to do with intermediate peeps. Low means chemo won’t have any effect on you; high means chemo has definitely decreased recurrence rates in the majority of patients in that group. Chemo on intermediate patients helps some and doesn’t help others. Researchers are still working on identifying what the factors are that cause the difference, but they don’t know yet. So being that I am intermediate, it is now our choice to do chemo or not – and it may or may not have any impact on whether or not I have a recurrence of cancer.

GOOD NEWS
My cancer is/was high grade – it got a score of 8 out of a possible 9. (What can I say, even my cancer aims for the stars.) With that in mind, me getting a low intermediate result on the Oncotype test is really amazing! It could have easily come back high grade, which would have meant definitely chemo, definitely hormone treatment, and STILL a possible recurrence. So we’re in pretty good shape!

We met with a final doctor today, Dr. Ellis. She was GREAT and is also in Dr. Kaplan’s office. I think we’re going to stick with Dr. K – I really liked his manner. He was very easygoing and essentially gave the impression that all of this is a formality to me recovering 100%, which just really put me at ease. That said, Dr. Ellis was the first one to see my Oncotype results so she was the one who gave me her best ideas for my treatment. I called Dr. K afterwards and we chatted and he is basically of the same mind, although we have an appointment scheduled with him for next week to formulate a solid plan.

It looks like (and again this is just a rough guess right now) I may be able to avoid Tamoxifen (which my gut says I should do), IF I do 4 cycles of TC chemotherapy accompanied by Lupron to suppress my ovaries (and, according to Dr. K, help preserve my fertility). Plus of course the radiation. This would mean 3 months of chemotherapy – one administration of the drugs every three weeks for four times total. Typical side effects that you probably already know about, plus the added benefit of it possibly sending me into permanent menopause (although Dr. K thinks at my age I may make it through just fine).

I think that’s pretty much all the data I have right now. I am nervous and scared but also glad we can finally move forward with this. I am second guessing myself all the time and sometimes the overwhelming amount of information we have – and don’t have – makes me just want to say, “Screw all the treatments, I’ll take my chances.” But I have to do what I can to make sure this doesn’t take me down, for my family. I guess the most annoying part is they cut out a very small, very early lesion – along with a perfectly good lymph node! – so I feel like I am cancer free. So WHY do I have to do all this additional crap that’s going to make me feel, well, like crap? I feel good now, why do things that make me feel lousy?

Just things I have to deal with, I guess.

Stupid DST

I know people always talk about getting rid of DST but seriously, can we do it already? I’ve been lying awake in bed since 5:40am just thinking, and that’s not good for anyone.

So basically yesterday was scary as hell. Because when they talk about recurrence, you think (or at least I think) of it as a repeat of this time: you have a lump, we’ll now remove it, you’ll recover. But the thing I have to be constantly reminded of is that my current case is a best case scenario. If I have a recurrence, it COULD be: you have a lump, the cancer has gone to your lymph nodes, it’s in your bones now, you’re going to die. In the end, when choosing whether or not to follow the recommended treatment plan, the question is: are you feeling lucky, punk? And right now, I do. But is that enough?

I have really been thinking a lot about the baby we were talking about having – I mean, prior to yesterday. I’d say it’s been on my mind daily. Will it be a boy or a girl? If it’s a girl, what clothes of the boys will she be able to wear? How different  will s/he be from the two I have? Will s/he nurse as well as Connie or be a breast refuser like Gregory? I think about it so often it’s almost like I’m already pregnant instead of more than six months out from even starting to try again. I know this all sounds so Sally Homemaker which really isn’t my character but as I said, I really feel like I found my calling in becoming a mother. Yes I have two gorgeous boys but I’d probably have another three if circumstances permitted (they do not – if we do get to have another, it would be our last). Anyhow I’m blathering but maybe this sheds some light on why I’m so resistant to treatment at the onset – I have been basically dreaming of another baby on a daily basis and assuming (stupidly) that if my reproductive system cooperates it’s in the cards, and yesterday was just like a slap in the face.

We are having the Oncotype DX test done. I don’t really understand it fully but I guess it’s a measure of how aggressive a cancer is and how likely it is to recur. If I’m at the low end, I have more freedom with choosing my treatment plan. If I’m medium, they strongly recommend the treatments I have mentioned and possibly chemo. And if I’m at the high end, well, it’s essentially “Have all three treatments or die.” So yes, we’re waiting for yet another test result.

I’m just so sad and angry. I don’t know where to put all this – garbage. I feel completely at a loss, restless and helpless. Such a nose dive from all the good news of the biopsy.

One week post-op!

For those who haven’t been following along at home, the Making Strides fundraiser was a success, the lumpectomy was a success, and my charity Halloween party was a success. Pretty good news in a time that has been a little stressful, to say the least!

My pain is not too bad, although it flared up yesterday and today. I realized that I have been overdoing it, which I swore to myself I wouldn’t. I think I do indeed have a problem asking for help. The first two or three days after surgery I was okay with being taken care of, taking it easy, etc. But by days 3-4 I started doing more than I should simply to avoid asking Julian (or anyone else) to help me. I asked myself why this is, and I realized it’s because I am afraid people will think I am lazy, malingering, or taking advantage of their good nature. Even today I swore I wouldn’t pick the kids up or physically exert myself and I found myself doing both rather than asking for assistance. Besides not liking asking for help, I also just really don’t like sitting still! There’s always so much to do and never enough time to do it.

The scar in my armpit looks amazing. One of the steri strips has come off the breast scar and it looks literally like a scratch. I mean it’s almost invisible. I don’t dare to hope the whole thing will look that way, but WOW. After all my worrying.

Next week I have a s**tload of appointments – followup with breast surgeon, radiation oncologist, medical oncologist, cancer naturopathist. I am nervous but interested to hear what they all have to say! Julian is supportive in me not wanting to do either radiation or Tamoxifen, but we’re both keeping open minds with regards to professional opinions and recommendations, as well as statistics.

That’s about it!

More results, more good news!

A few things to report but I’ll just cut to the chase right here at the beginning:

Wide clear margins on the removed cancer cells, lymph node negative for cancer! CANCER IS GONE!

I tried taking a pic of the damage a couple days ago but it’s tough to tell what’s going on because of the steri strips. Then the steri strips in my armpit just started falling off, probably because I have such sweaty pits, so here’s a photo of that incision, which is now exposed. You can see the ones on my breast to the side.

So some bruising obviously and yes a big old wound, but given that the operation was done on Monday and this pic was taken this morning, not so bad!

I still have quite a bit of soreness in my armpit, but have been off the narcotic pain meds for about 2 days – just taking ibuprofen as needed now. The incision in my breast doesn’t hurt at all unless I accidentally brush it (or one of the kids leans on it, as is more often the case). Very tired a lot of the time – long sleeps at night and also often daytime napping. I think my body is putting all its energy towards healing itself and as a result my energy is sapped. As long as that means I am healing well and fast, though, I’ll take it!

I’ve had a few amazing friends bring food, company, and send flowers, so my spirits are as high as ever, and now with good news to back it up! Next steps are appointments with medical oncologist, radiation oncologist, cancer naturopathy department at Swedish, and follow up with Dr. Smith.

Onward and upward!

Post-op

They actually make you write this above the boob you’re getting operated on after asking you half a dozen times which procedure you’re having done. JUST MAKING SURE WE’RE ALL ON THE SAME PAGE. I added the exclamation point for enthusiasm.

The deed is done!

The pre-op procedure was the worst part. I had it done at the Polyclinic and although I loved all but one medical professional I encountered, the process itself is bumbling and awkward.

We had to check in at the Polyclinic on Madison for the radioactive seed implantation, so that was my first change into a gown. The technician/nurse there, Alka, is and has always been so amazing that I need to send her flowers to thank her. Smart, professional, kind, and compassionate. After that procedure, which hurt SIGNIFICANTLY less than the biopsy, I went across the way for a mammogram. Then I had to change into my clothes again, we had to get into our car, and drive to a different Polyclinic. Now, I knew this was coming, but the way the nurse and doctor made it sound, I had the impression that this would all run smoothly together – in fact, my nurse navigator told me that although my actual surgery wasn’t scheduled till 12pm (we went to the first appointment at 9:45am), that if we were ready sooner, they’d start sooner. This turned out to be very far from the case.

We got to the Broadway Polyclinic at about 10:30 and were told the nuclear medicine guy had just stepped out, “But your appointment isn’t till 11 anyway, right?” (This was for the injection of radioactive dye – lots of needles yesterday.) So we had to sit and wait for half an hour before that could be done – second gown of the day. When that was finished, we went up a floor for the surgery and checked in there – this was probably around 11:20. About 11:30 they took me back and I got changed into my third and thankfully final gown of the day. I had a nurse come see me one time to check my vitals* and chat with me briefly, and then never return with any more info. So that is the one medical professional I am grumpy with – I mean, again, surgery scheduled to BEGIN at noon and by the time it was 12:15 we still had no information or idea how much longer we’d be waiting? And it was COLD back there. Finally my doctor popped his head in and he went and found out it would be about 15 more minutes because they were running behind. Fifteen minutes later he came back and told me it would be another ten. So you can probably see what I mean about this being frustrating and awkward. Honestly everything should be in the same damned building and they should have at least two ORs to make this sort of situation avoidable. And you should only ever have to take off your clothes and put on a gown one time. Anyhow.

Once I finally got in to the OR, I was actually shivering – like, teeth chattering! – from the cold, so they got me all bundled. By now it was about 1:15 or so and I hadn’t eaten anything since 9 the night before, or had even water since 11 the night before. I have notoriously deep and difficult to find veins, so of course the anesthesiologist couldn’t find a vein with me basically being dehydrated. Eventually he had to go in through my wrist which was surprisingly painful, but honestly, at this point, I was just so relieved to finally be on the table I almost didn’t care. Just like I don’t care about that split infinitive right there.

They started the IV pain meds, which burned, but only for a second because then I was asleep!

I woke up with much difficulty in post-op. I just wanted to go right back to sleep, I was so warm and cozy. But eventually I came to. I asked to speak to my doc but they said he’d already spoken to me and left – I imagine his day must have gotten mighty screwed up by my surgery being over an hour late as well. I found out from the nurse that they’d only had to remove one lymph node, which is GREAT news because the fewer they have to remove, the lower your chances of developing lymphedema. Can’t get any lower than one! I was in pretty moderate pain in my breast and armpit, but they gave me some more IV pain meds, which brought it from a 5 to a 3. Then they gave me some crackers and water and a pain pill, and that took it to a 2. They took me to a room where Jules came and met me, and I got dressed, and that was it! Home I went.

I didn’t get home till about 4:30. The kids were AMPED to see me, which was wonderful. I was pretty dopey so I drowsed in bed from then till about 6. I was able to read stories to Greg and help put him to bed, which felt really good. I kept ice on my boob pretty much nonstop. I went to bed around 11 and slept till 6, got up, took some more meds and got another ice pack, then went back to sleep till 9.

Today I have been icing regularly and frankly the pain is very minimal. I have a hard time sitting still but Julian is staying on me to relax and not strain myself. The pain is worse at the incision in my armpit than at the one in my breast. I am allowed to take the bandage off on Wednesday, and I’ll post a photo of the incision with the steri strips when I do. You see all these absolute horror show scars when you look online and I don’t think mine is going to be that bad, so maybe it will give others some comfort!

People keep asking, “What next?” and obviously if you’re reading this you’ve been keeping up with my blog and already know the answer! But just in case, next they biopsy the lump and lymph node. Assuming the margins are clear, no more surgery. If the lymph node is clear they recommend radiation and tamoxifen, which I plan to talk to my doctor and team about. If the node is not clear, that means chemo as well. So, more waiting, BUT: the first, most major step has been taken.

I am so grateful to everyone who has shown me support and love over the last month and a half. What a crazy journey. I wouldn’t be as strong and optimistic without all of you holding me up!

*On a super awesome note, my vitals were kick ASS – my pulse was 52 and my BP was 120 over 68. The nurse actually asked me if I was an athlete or exercised a lot!

A very brief update!

I thought I better post a quick update since I’m getting lots of questions, but it will very brief because I am high on life, and by life I mean painkillers.

Everything went fine! There were a lot of delays which really sucked, but I am home now watching TV and eating delicious food brought by my wonderful friends and neighbors Meghan and Mac. The kids’ excitement at seeing me come home almost made the whole ordeal worthwhile. I have gotten lots of love and snuggles and kisses. My amazing husband has been the best nursemaid I could ask for. And I am just filled with hope and optimism (you were so right, Hannah) and more than anything gratitude. Grateful for my family, my friends, my pets, my health, my life.

Every single one of your messages buoyed me today (especially yours, giggin1 – wish I could read your blog, maybe I’ll put it through a translator)!

Thank you all, thank God, and tomorrow (probably, or soon) I’ll give you all the dirty deets.

xoxo!

Tomorrow

Scared, sad, anxious, I have a feeling sleep will be hard to hold on to tonight. I’m most dreading the first glimpse of poor Right Boob after it’s all done. Second biggest worry is what treatments they’re going to suggest after, the research I’m going to have to do, the medical professionals I’m going to have to talk to, the decisions I’m going to have to make.

Wish me luck, less than 13 hours to go.

Ode to an old friend

Monday, you will
sacrifice part of yourself.
I love you, Right Boob.