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.