Tell me what to do.

Life is full of decisions. Black shirt or red? This job or that? Eat dessert or not? I’m used to making decisions. I even think I’m pretty good at it.

Cancer was full of decisions too. I read, I consulted, I cried, I researched, and I made every one. And I was confident in every one. But it’s not over. It will never be over.

Because I am cancer’s bitch now. Every day, every minute, every second of my life, I live with the spectre of cancer looming over me. I thought, so naively, that I would get through cancer. That I would move past cancer. But you never do, because you’re never really “cured.” You’re just waiting.

For two years, I have struggled with menopause brought on by chemotherapy. Let me list, just for posterity (a word I just couldn’t remember and had to google because, you know – menopause), some of the symptoms:

  • hot flashes
  • night sweats
  • disorganized thinking
  • forgetfulness
  • decreased libido
  • dry eyes
  • dry vagina
  • neck cramps
  • irritability
  • depression
  • wrinkles
  • thinning hair
  • thinning skin

That’s just off the top of my head. My body aged 10 years in three months and this shit came on overnight like a bucket of cold water over the head. But cold water, what a relief that would actually be! I slept through the night last week – something I haven’t done since December, because every single night I wake up numerous times, drenched in sweat, feeling like a fire is burning inside my body. I finally made an appointment with a psychotherapist two weeks ago, one recommended by the survivor outreach nurse at Swedish, because for the first time in years I felt suicidal. I feel trapped inside my own body and the ONLY way out of that would be to ESCAPE THIS BODY.

But that’s not what I want either. In the past, my suicidal thoughts have been linked to brain chemistry, to feeling worthless, useless, a burden. I know I have important jobs now – I’m a mother to two amazing children, I’m a friend, I’m a wife, I’m a sister. I want to watch my children grow up, I want to grow old with my husband, I want to change the world by filling it with kindness every day. So it’s not chemical – it’s situational. And most situations, you can rely on them ending, eventually. But what when the situation is a body that has been fucked up? What when it could be a year or a decade or even longer? What when there is no end in sight and you’re trapped day in and day out in a body that is betraying you? And could ultimately betray you to death?

So I decided to take control. I went to my gyno Tuesday and I laid out my situation and she put me on an estradiol patch and progesterone pills. And suddenly I felt liberated. It’s too soon to know if it’s working – the hot flashes continue, and it could take up to three weeks to know – but I had hope. Hope that things would get better. And more than that, agency – over my own body, over my life, over what cancer took from me.

We talked about it, of course, and I already knew – hormones are verboten for those of us with ER+ PR+ cancer. In fact, if you have been following my blog, you may remember that the actual full treatment for hormone+ cancer includes a drug called Tamoxifen that actually blocks naturally occurring estrogen and progesterone and sends the patient into menopause. I opted out of Tamoxifen, but it turns out I didn’t need it – my body went into menopause on its own. So in brief, hormones bad, make Kate’s cancer grow. But lack of hormones also bad, make Kate want to die.

Where the hell does this leave me? Fucked.

After floating for the last two days, I just got a voicemail from my gyno. She spoke with my onc, with whom I have an appointment tomorrow. He is not happy. She reiterated several times that he understood why I had chosen to go on hormones, but that he was not in support of it because naturally they have no data on what it does to survival rates. But since we know that blocking hormones increases survival rates, I think we can safely guess what increasing hormones does. Or can we? I mean, who the hell really knows?

So tomorrow I go meet with my onc, who you may remember I absolutely adore. I trust and respect him beyond words, so I already know this is going to be a tough appointment. And I don’t even know what to do at this point. I feel like whatever decision I make, I lose. I literally have to choose my mental health and physical comfort OR potentially dying of cancer.

And if it were just me, if I was a single, childless woman, I know what I would choose. I’d do the hormones and just live until I died. So maybe that’s my answer. But it’s just not as simple as that.

So here I am, wedged between a rock and the hardest of places. And standing here, I raise my middle fingers to the sky and say, FUCK YOU CANCER. FUCK. YOU.

Depression makes its sneaky return?

So for the past four nights I’ve found it very difficult to sleep. I have always suffered from insomnia, but usually Trazodone helps take the edge off, and the fatigue from all the treatment has really kept me sleeping. The last few nights I have averaged 5 – 6 hours, and that’s not solid – that’s on and off. That may sound fine to some but as someone who really needs 8, I’ve been struggling.

Additionally, my appetite has suddenly tapered off to nothing, which is VERY unusual. I didn’t even eat a cupcake at Conor’s birthday! Finally, I have been feeling very lackluster – no motivation, no desire, lots of guilt. Couldn’t get a sitter to go a friend’s event last night and felt terribly about it; have a sitter tonight for plans I’ve really been looking forward to, and now have no desire. So now I’m wondering: is my depression returning?

Of course, it could be all the chemicals still in my system, or my hormones readjusting. (More on that later, actually; hard conversation with Dr. K on Wednesday [re hormone treatment] that could be contributing to the blahs). It could also be that I have been battling a cold and am now having GI issues. Or, finally, the insomnia could of course be causing me to feel depressed – it wouldn’t be the first time.

Regardless, I am nervous, and in that curious depression quandary of feeling desperately lonely but not wanting to talk, of wanting company but not wanting to interact. And I’m just trying all the while to act normal in front of the boys because I don’t want them to be children who grow up remembering “When Mom had one of her spells!” I’ll just try to stay aware and if things degrade I’ll talk to a psychiatrist about my meds.

As far as hormone treatment, we met with Dr. K Wednesday and of course he strongly recommended I do the once monthly Lupron shots. I told him no, and he was – I guess probably just concerned, but of course I felt it was disapproving. He asked if I could tell him why, just so he knew, and I started crying as I described the hot flashes, night sweats, wrinkles, roughening of the skin around my jaw, weight gain – all of which happened while I was on Lupron during chemo. I told him I had no problem with growing old, no problem with turning 45, but that I’d like to do it in seven years, when I turn 45. He understood and was supportive, and we agreed to talk about it again down the line. Complicating things for me is the fact that a friend’s mother had breast cancer roughly ten years ago, and she did the full course – chemo, radiation, and hormone therapy – and it has now metastasized. So it’s all a roll of the dice anyhow.

After we left I realized it’s not just the symptoms I don’t want – it’s the daily reminder of those symptoms. That I had cancer, that I can have it again, that it could kill me. I mean it’s always going to be at the back of brain anyhow, but I don’t need to be reminded three times a day when I take the Gabapentin to combat the hot flashes (which by the way I am now off of, yay), as well as every fucking time those hot flashes occur.

The other day I went in to get sugared and it was an aesthetician I hadn’t met before, as mine is out sick. She asked me about my cancer and treatment and when she found out I was through, she remarked, “So you beat cancer.” Which, I am sure she was trying to be nice, but no. No I haven’t and honestly I can’t help but think that I won’t really have “beat cancer” until I die of something else. On the plus side, I told Julian this and it’s led to all sorts of great jokes, like me on my death bed and my last words being, “Suck it, cancer! Heart disease wins again!” (Julian’s: “Yes! Hit by a car! Take that, cancer!”)

Starting Monday, Julian and I are going to try to do a 10-day green smoothie cleanse. I am doing it to get rid of all the poison left in my system and to try to be healthier – I’m hoping it might also help with my joints (which are terrible, and contributing to my depression). He is doing it because he is supportive and amazing. Dr. K gave it the thumbs up so I’m hoping for the best.

This turned out to be a long, rambling post, but I guess I had a lot inside me. Happy Saturday – get out there and live.

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.

Waiting and changing

So the reason I haven’t posted anything cancer-related lately is there has been nothing to post. We met with that medical oncologist who made me really unhappy and he sent away for the Oncotype DX test, and there was an insurance snafu, so the results are not back.

In the meantime I made appointments with two other medical oncologists, both recommended by other women who have been through the breast cancer wringer. We met with one today and I cannot even begin to explain the difference. I left the last appointment feeling defeated, worried, unhappy, helpless, and judged. I left this appointment feeling supported, understood, heard, hopeful, healthy, and capable. Where the other doctor basically presented us with statistics and a one-size-fits-all treatment plan, this doctor (also a male) was flexible, agreed that the treatment should be my choice and fit with my life, and cited numerous examples not just of women delaying taking Tamoxifen but also of using a totally different drug, Lupron. He also noted my history of depression and stated that these drugs are contraindicated for depression – something the other doctor didn’t notice/mention – and said that would be a concern and something we’d have to keep a close eye on.

This doctor has mannerisms and phrasing that were so familiar and reminded me so much of my Dad that I finally asked him where he was from. He told me New York City, and when I told him I was from Philadelphia, he said, “Oh you’re not a Phillies and Eagles fan are you?” and snarled disparagingly. LOVE.

Several times during our meeting he touched my hands or my shoulder gently and reassuringly. Everything about him was the polar opposite of what I experienced with the other doctor and I actually cried during this appointment as well – from relief.

I have been walking around for the past two weeks with a gray cloud over my head, feeling fearful and depressed about the future, uncertain how my life was going to play out at the hands of medical professionals. After meeting with this doctor I feel in charge of my treatment, the hows, whats, and whys, and like I have a partner in my care plan, instead of someone who will dictate what I should do and show disapproval if I do not agree.

Could not be more grateful. Really looking forward to moving through this now instead of dreading it.

Reeling it in

Yesterday we saw a naturopathist and my breast surgeon for followup. I need to change my diet to support my health and aid in my treatment. The naturopathist asked if I’d been told to go off my birth control (NuvaRing), which I had not. I didn’t even think about it but yeah, given that they say this on their website:

NuvaRing is also not for women with high blood pressure that medicine can’t control; diabetes with kidney, eye, nerve, or blood vessel damage; certain kinds of severe migraine headaches; liver disease or liver tumors; unexplained vaginal bleeding; breast cancer or any cancer that is sensitive to female hormones; or if you are or may be pregnant.

and that we know my cancer is ER+, seems like that should have been something ONE of the THREE doctors I have seen should have mentioned to me. Thanks, guys. So I’ll take that out at the end of this cycle and then… what. I guess we go back to condoms? My doctor told me the diaphragm has been replaced by the cervical cap, although the research I did has not indicated to me that they have stopped making the diaphragm (which is what she said). Anyhow I have messaged my OBGyn about getting an appointment to talk about that.

Overall I am doing better emotionally. There’s not much to be done till we get the Oncotype DX results, which won’t be for a couple weeks. There are three risk categories associated with the results on that. I am praying I will be in the lowest risk group but I have an ominous feeling, given that this cancer came seemingly out of nowhere (or maybe from birth control) and then was an aggressive type. I am resigned to chemo and radiation, but still not endocrine therapy. Julian and I have discussed it at length and in the end we will weigh all the options and make a decision. But it’s not “just” having another baby that affects my opinion on taking Tamoxifen – it’s articles like this and like this. Julian discovered that second one, unasked, and sent it to me. It’s reading blog after blog and digest after digest of women bemoaning Tamoxifen and its insufferable side effects. It’s wondering, very seriously, if this isn’t a case where the treatment is worse than the disease. If it was one year of it, that would be one thing. But five years? That’s a damned long time.

Also, you might be wondering why suddenly all the talk of chemo when before it seemed like if my node was negative we were golden. Well, that was when they thought the tumor was less than a centimeter – 8 mm to be exact. Pathology showed it to be 1.2cm, so that throws us into a whole new risk/treatment category. Super awesome. Another thing that was kind of sprung on us at the medical oncology appointment, which we were kind of blindsided by.

I am lucky because J is being super supportive and we both agree that we want to get a second opinion, and that Tamoxifen may not be the best course for me. I am so grateful that he isn’t just blindly accepting everything the doctors say and is being analytical and open minded. I really feel like he is taking my emotions and instincts into consideration and giving them serious weight with regard to decision making. It makes everything a lot easier.

The naturopathist recommended curcumin (an anti-inflammatory derived from turmeric) and something called Host Defense MyCommunity (an immune system booster) as well as increasing my intake of veggie omega-3, although another friend said her doctor disagreed with that recommendation based on recent research (I’ll have to look into this myself). The naturopathist also recommended specific vegetables and protein sources, as well as trying to keep my blood sugar stable throughout the day. I’ve ordered a couple cookbooks (The Cancer-Fighting Kitchen: Nourishing, Big-Flavor Recipes for Cancer Treatment and Recovery and Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer) as Jules is determined to start cooking anti-cancer meals for me and I’m sure as hell not complaining.

In the meantime, as usual, tick tock. Hopefully those results will come back soon.

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.

Chocolate and tears

What do you do when, after loads of great news, you get a whole face full of shit?

You sit down and eat an entire chocolate bar, that’s what.

I went to see the radiation and medical oncologists today. I have been dreading it because I knew I didn’t want radiation or endocrine therapy (Tamoxifen) and I knew they would tell me that’s what I had to do. I was not disappointed in my expectations.

I can’t even get into all the stats and details because frankly my head is swimming and so were my eyes. Radiation takes your chances of relapse from 30% down to 3%, or something like that. So I grudgingly agreed. I go in on 12/14 to get prepped and tattooed (37 years without a fucking tattoo and now I have to get one and it’s not even a black cat). I’ll be starting off my new year with radiation, so so far, 2016 is not looking much better for me than 2015.

Then off to the medical oncologist for more devastating news: chemo is not actually out of the question, and no matter what, they strongly recommend I do the endocrine therapy. As previously mentioned, this is five years of medication that stops your breasts from receiving estrogen and basically gives you five glorious years of menopause like symptoms. Given that I am 37, that means essentially I’d have five years of menopause before going into actual menopause. Additionally, Julian and I have been seriously discussing trying for a third and final baby, starting the process this summer, and you should not (and by should not I mean cannot for health and safety reasons) get pregnant and/or nurse on Tamoxifen. He started talking to us about seeing a fertility expert, harvesting eggs, etc, and I just got SO fucking angry. First of all because I hate the fact that it’s a foregone conclusion that they recommend Tamoxifen so therefore I will take Tamoxifen and it doesn’t matter what else I have planned in my life or what I want to do. Second, I hated being told that by a man because what the hell does he know? Has he been through menopause? Has he had breast cancer? Has HE taken five years of Tamoxifen?

Finally after years of feeling like I can do most anything adequately but nothing excellently, I found out what I am really good at: being a mom. I love it, I enjoy it, I am confident in it, and I make awesome little people. And now that I am hitting my stride and ready for the final installment in our fantastic family, BAM. God says eff you, no more kids. Instead you get five years of hot flashes and possible uterine cancer, and guess what? You might still get breast cancer that goes systemic and kills you. HAHA GOOD ONE RIGHT?!?

I am sad and angry. I know I need to see some other doctors and get second opinions but right now I just want to say screw it and pretend like I never had cancer and do nothing. And if it happens again and kills me well at least I will have gotten to live what remains of my life in the way I want to, doing the things I want to do, instead of burning the hell out of my boobs and ingesting copious amounts of chemicals.

I just keep repeating again and again, “I am not taking that drug. I’m not. I won’t do it.” But I’m afraid too, that if the breast cancer returns I will blame myself like crazy.

We’ll be out of town next week so I guess I will use that sort of down time to research doctors and make appointments for second opinions before rushing ahead with anything. But this all sucks and really has me down.

And oh yeah, someone broke two windows on my car on Saturday so they could steal the kids’ diaper bag, which Araceli left in the car. Fuck you, 2015. No seriously. Fuck you.

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!

Treatments and Seattle in the fall

I’ve now read about the treatments I am supposed to receive after I get the cancer out, which is unfortunate, because now I feel less like partying and more like crying.

First let me say that I am incredibly grateful. I am grateful this was caught early, I am grateful the only surgery I have to undergo is lumpectomy, I am grateful for the amazing support of my friends and family. I am grateful that, as yet, chemotherapy doesn’t look like a necessity (although that can of course change after the lymph node biopsy). I am grateful that I am strong enough and healthy enough to do the breast cancer walk this weekend (HINT HINT http://main.acsevents.org/goto/katejig). I am actually grateful for the cancer, weirdly enough, because it has made me even more appreciative for all the blessings of my life, for all the good I get to experience every day, and for the way it has extremely strangely strengthened my bond with my dead father. Having said all of that, I am about to whine a little. If that annoys you, no hard feelings, but stop reading now.

First of all, the radiation. Don’t do a Google image search for breast radiation photos if you’re going to have breast radiation. It will not make you feel any better. It will not make you feel any more prepared. It will only make you feel SAD. And scared. There are only mild pain-related effects: sunburn, sore ribs for a year (!), swelling, tenderness. There are more short-term cosmetic effects: red skin, dry skin, peeling, etc. Then there are also long-term effects which again are only cosmetic but which I still don’t want! And I don’t care if that makes me vain. As I mentioned previously, I spent my whole life not liking my boobs and then I had two kids and I FINALLY like them and get this:

Over time, you may notice firmness or shrinkage of the breast. You may also have mild tanning of the skin where the breast was treated or red discoloration, especially around the surgical scar(s). These changes may be permanent. – See more at: http://ww5.komen.org/BreastCancer/SideEffectsofRadiationTherapy.html#sthash.J2bLvWFm.dpuf

Awesome! So I could have one normal boob and one boob that is tan, hard, and small! This sounds like a fantastic deal. Those of you who know me well may know that I am obsessed with symmetry, so the idea of my body being completely asymmetrical in a place that will be clearly noticeable is setting my OCD to high.

But wait! There’s more!

Rare side effects

Although rare with modern treatment, radiation therapy can injure the normal tissues near the radiation field of the breast or chest wall. Rare side effects include:

Rib fracture occurs when the radiation weakens the rib cage near the treatment area.

Heart problems may develop years after radiation therapy is given to the left side of the chest. Multiple techniques are now used to limit this risk though.

Radiation pneumonitis (NOO-moh-NY-tis) is an inflammation of the lungs that can cause shortness of breath, a dry cough and low-grade fever. Severe symptoms can often be relieved by anti-inflammatory drugs. Radiation pneumonitis almost always goes away with time.

Very rare side effects include:

Brachial plexopathy (BRAY-kee-ul pleks-AH-path-ee) can happen when radiation damages nerves in the upper chest. It may cause tingling, pain and weakness in the affected hand and arm that is usually permanent.

These conditions may occur a few months or years after radiation therapy.

Radiation therapy and risk of a second cancer

In rare cases, radiation therapy can cause a second cancer. The most common cancers that have been linked to radiation therapy are sarcomas (cancers of the connective tissue) [18-19]. However, the risk of a second cancer is very small and the benefits of radiation therapy almost always outweigh the risks.

– See more at: http://ww5.komen.org/BreastCancer/SideEffectsofRadiationTherapy.html#sthash.J2bLvWFm.dpuf

Yes, I realize these side effects are rare, but you know what else is rare? Having a non-functioning gallbladder almost your entire adult life and finding out at 37. Having a ruptured ectopic pregnancy. Being an anglophile your entire life and then by chance meeting the man of your dreams and having him be British. All rare, yet all happened to me. So really, rare is relative.

The other post-surgical treatment they want me to undergo is taking Tamoxifen for five years. May I share with you my favorite Tamoxifen side effects? Well too bad, here they are:

Tamoxifen and antidepressant use

Some types of antidepressants called selective serotonin reuptake inhibitors (SSRIs) can interfere with the metabolism of tamoxifen (how tamoxifen works in the body). Some SSRIs (such as fluoxetine (Prozac), buproprion (Wellbutrin), paroxetine (Paxil) and sertraline (Zoloft)) interfere with tamoxifen so much that they should be avoided while taking tamoxifen [58].

– See more at: http://ww5.komen.org/BreastCancer/Tamoxifen.html#sthash.CmD0irMy.dpuf

Super! I will totally go off my Prozac so that I can survive breast cancer, only to die by my own hand.

Figure 5.10 lists some possible side effects and health risks of tamoxifen in women.

 Figure 5.10: Side effects and health risks of tamoxifen in women

Common

Hot flashes and night sweats

Loss of sex drive

Vaginal discharge

Vaginal dryness or itching

Irregular periods or spotting (uterine bleeding)

Rare

Blood clots in the large veins (deep venous thrombosis)

Blood clots in the lungs (pulmonary emboli)

Bone loss (premenopausal women only)

Cancer of the uterus (uterine or endometrial cancer)

Cataracts

Stroke

Adapted from Rimawi MF and Osborne CK [66].

– See more at: http://ww5.komen.org/BreastCancer/SideEffectsofTamoxifen.html#sthash.8JHvUkpd.dpuf

Great! This is all great. This all sounds just – just totally manageable. Thank you, cancer. Thank you.

Oh and here’s this side effect from Wikipedia:

Central nervous system

Tamoxifen-treated breast cancer patients show evidence of reduced cognition,[37] a major side effect of tamoxifen, and semantic memory scores.[38]

So I guess, in a nutshell, this is why I am sad, scared, and angry: If I do all the recommended treatments, this is going to reduce the quality of a minimum of five years of my life. This isn’t like, okay, they take the lump out, I recover and move on. This is so much longer than that. Right now I have so much support and understanding and sympathy and compassion. But what about three years down the road when I have no libido and no one even really remembers that I had cancer? Will I feel lonely, depressed, isolated?

In the end: I am scared. I hate that this happened to me and that this happens to anyone. I hate that it took me getting breast cancer to even understand how long lasting the treatments and effects are. I hate that I feel powerless. And I really hate feeling whiny or ungrateful or petty but I feel like – I don’t know, like I am owed that, at least once. Because everything is relative and although I know a lot of women have it worse than I do, this still sucks, for me, right now.

Now go donate $5 to my Making Strides campaign to cleanse your soul after reading all my bitching. I’m going to atone by walking 3 miles in the rain tomorrow.  http://main.acsevents.org/goto/katejig