September

Hi friends.

As I approach my two-year cancerversary, which is Monday, I have some news to share. Don’t worry – I remain cancer free!

As some of you may know, when I was diagnosed in September 2015, Julian and I had been planning to begin trying to expand our family the following summer. I would love to have a girl baby, but would equally love another boy – I just have a gut feeling that our family is not complete yet, that we are supposed to be a quintet.

I, like most other people, was not aware of the effect chemotherapy can have on a woman’s reproductive system, both during and after treatment, until I was diagnosed. That is when I discovered the cold, hard facts about the possible infertility chemotherapy can cause. Still, when my oncologist offered to refer me to a fertility specialist, I declined. Why? Many reasons. Specifically, I already had two beautiful children; I thought “seeing a fertility specialist” meant “freezing my eggs,” which frankly sounded like an awful procedure; and most importantly, I didn’t think infertility would happen to me.

Ridiculous, right? I was diagnosed with cancer at 37; the January before, I learned I’d had gall disease since I was a teenager. Why did I think anything that could happen wouldn’t happen to me? Maybe it’s because of those very things. Like, “Omg I have cancer as a 37 year old vegetarian who managed to bear two kids with only one fallopian tube. Of COURSE I’ll retain my fertility.” In addition, my oncologist put me on Lupron during chemo – a horrid drug that stops your ovaries from working, sending you directly into menopause, but has been shown to “sometimes” prevent infertility. How they determine that, I don’t know, since from what I have heard it’s basically a craps shoot whether you get your period back or not. But that’s not really the point.

Looking back, I wish I’d seen that fertility specialist. I wish I’d gotten all the information available to me. I wish my oncologist – who I love, don’t get me wrong – had said, “If you ever think you ever might possibly want to have another baby, just go see what the specialist has to say.” Because now I know there are other ways of preserving fertility – I read yesterday about a simple procedure where one ovary is removed and frozen, and then the outer layer – where the eggs are stored – is grafted back on to the remaining ovary, restoring fertility. Would I have done that? Yes. If I had a time machine, I’d go back and do it now. But alas, I was in denial. I thought I knew all the risks. I was both right and wrong.

Tired of my oncologist and my gyno both telling me I just had to “wait and see” what my body would do, I finally made an appointment at Seattle Reproductive Medicine (you know, like I should have done two years ago). A trans-vaginal ultrasound revealed my ovaries to be so small they were nearly undetectable. My uterus, while healthy, is a menopausal uterus – small, with a very thin tissue lining. A blood test measuring AMH came back so low that the doctor prefaced the result by telling J and I that it “couldn’t tell you the difference between low egg supply and zero,” but that mine was at the very lowest limit. She went on to tell me that’s not to say I couldn’t ever conceive, but the possibility is “remote.”

Why did “remote” hit me like a bucket of cold water? Low, small, even a percentage number – those I think I could have handled. But “remote” – remote is the snowy woodland where someone freezes to death because she lost her way hiking. Remote is where they used to send the very worst criminals to live and kill each other. Remote is so small it can’t even be quantified. Remote is not impossible, but it’s impossible’s next of kin.

I had previously asked J about adoption – which for some reason, he is not interested in – and between the ultrasound and the blood test I had even had a revelation that perhaps we could get an egg donor and a surrogate and have a baby that is at least a half sibling to our boys. So I had done a small amount of research into that, but even so – even so, I was hoping against hope they’d tell me my egg supply was lowered, but not – not that my chances were “remote.” I’ll be 40 next year – “remote” was already around the corner anyhow.

This was on Tuesday. I cried. A lot. I felt stupid, greedy, uninformed, angry, regretful, ungrateful, lost. For the last two days I have been processing. It’s still not real to me, if you can believe that – somehow, in my stubborn brain, remote is not far enough. I still feel this glimmer of hope. But my logical brain keeps trying to put that glimmer in check. And so I am struggling.

I haven’t told you everything yet, though. And I’m not sure if I should put it down, because we don’t know where we are with it. So take it as that, information, not opinion or decision. Just information we were given from a doctor, information that I will present to my oncologist at my regular appointment on Monday and ask his opinion of.

If they were to give me low levels of estrogen and progesterone – very low, the same my body would be making itself had my period come back – my uterus would rebound and begin working again as though my ovaries had not given up the ghost. Then, if we wanted, we could choose an egg donor, and I could actually carry the baby myself, nurse it myself. Genetically it would not be mine, but who’s to say how much DNA a baby picks up in the womb? Whose blood would be running through its veins? Whose heartbeat would it hear? Whose milk would it drink?

If you are by chance reading this, and you have been diagnosed, and you have not started treatment – even if you have children, even if you think you are done, even if you aren’t sure you ever want them – please go see a fertility specialist. Seeing them will do no harm. Know ALL your options. Regret is a horrible feeling to have after you’ve managed to survive a brush with death.

I’m okay!

Okay first a short bit of clarification.

It’s not like I am desperate to have a baby – that’s not what all the tears were about yesterday. I have two awesome babies – I am luckier than many! But we definitely were seriously considering another baby, and it just sucks to have that choice taken away. When my period came back that one time in June, I honestly thought, “Wait, maybe I don’t want another baby!” I just want to have the choice.

Much of the sadness/anger revolves around not the reproductive side of menopause, but the physical side. I have hot flashes constantly, and they’re miserable. They’re made worse by alcohol, so even a glass of wine can set them off. I have sore hips and a stiff back. My skin breaks out. I’m bloated and irritable. my hands are swollen and stiff every morning. I am forgetful. These are all menopause symptoms. I had hoped my hormone test would come back on the pre-menopausal side, so I could look forward to these annoyances tapering off. Instead, I’m still in the middle of menopause, which means I could be dealing with this stuff for a long time yet to come – years, even.

Anyhow, I talked to Dr. K last night and really there was nothing new – my numbers look bad for my period right now, but he says they can’t predict what will happen over the next four months (end of March is one year from the end of chemo). He says he has 75 year-old women with lower estradiol than mine, so it’s just a question mark right now. In three months he’ll test my blood again and see what the numbers are. Until then, I continue to wait.

But I’m okay. I’m great, actually. I have an amazing family and an awesome life and wonderful, supportive friends. And I’m alive and cancer free, so for now I’m just going to suck it up and deal with the little physical set backs and hope for better days ahead with regard to that!

Hormones and Grief (Video)

A 5-minute video about what’s going on with me. Apologize for the mood and for not just typing it instead – just don’t have it in me to type this up right now. If this doesn’t work, I also uploaded it as unlisted on YouTube: https://youtu.be/Ap5svJsM6V0

I also want to add that it’s not just the baby thing that is upsetting me. It’s all the physical ailments, which are being ascribed to “hormones,” and have no end in sight. It’s going through menopause before my time, before I’m even forty. It’s feeling cheated and old and helpless. It’s everything.

Short but sweet!

37 when diagnosed and started chemo, 38 when completed chemo, told my chemopause could be permanent, would probably take at least 6 months to know –

My period came back today. 🙂 Weird thing to write about, I guess, but since we really felt robbed of making our own decision whether or not we wanted to try for another baby, this was a super important thing to both Julian and me. Additionally, it makes me feel really positive – my body is becoming mine again, and if I could recover so quickly from chemo, I must be pretty healthy! Other than this stupid cold I am now battling, which came hot on the heels of the stomach bug from last week. In spite of those, feeling pretty good – and this also explains last week’s depression.

Hurrah!

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%.

Hot! Hot!! Hot!!!

If you’d like to see the full video for this, which is pretty cool if you’re a Cure fan,
check it out
on Vimeo.

One of my least favorite side effects of chemo/Lupron is the hot flashes. They are why I am awake at 5am writing this blog (I’ve been up since 4:30), and why I haven’t had a full night’s sleep in at least a month and a half.

During the day, every 1-2 hours, I feel my face begin to warm, then the first prickles of sweat. This quickly spreads to my head, neck, and then over my entire body, until I feel overheated and covered in perspiration. Sometimes it’s precipitated by a hot room or activity – something as simple as charging up the stairs. Other times I am sitting perfectly still at a comfortable temperature and it comes out of nowhere. I don’t like them during the day – they’re uncomfortable and make me feel gross – but I really hate them at night.

At night, about every 2 – 3 hours, I am woken from a sound sleep by a hot flash. Yesterday, I was taking a daytime nap after having been kept awake by them the night before. I was in the middle of a dream and IN MY DREAM realized I was starting a hot flash, which then woke me up. Each time I am awoken, I have to throw all the covers back and wait the 5 – 10 minutes it takes for the flash to pass. I sleep in a room with a window open in the middle of the winter. This helps cool me off during the hot flash, but once it’s passed, I have to get back under the covers because I’m freezing.  I already suffer from and am medicated for insomnia. The medication does not override the hot flashes, nor help me fall back asleep when they come after 4am. When they come in the early morning like this – which is pretty much daily – I am fully awake by the time the flash passes and simply lie in bed thinking of things I could be doing. Now and then I am lucky and can force myself back to sleep around 6, only to be reawoken by my kids between 7 and 8. Today, there’s no point in even trying, as it’s chemo day and I need to be up to shower and get ready at 6:30 anyhow.

Last appointment with my onc, he recommended I try an OTC herbal treatment called Remifemin, which I have dutifully taken twice a day for three weeks, but the hot flashes persist. I’ll tell him that today and he will probably prescribe something, which just makes me feel overwhelmed and angry. Another medication to treat another side effect of another medication to treat… etc. I am over it.

All of the other side effects/complications – even the diarrhea – come and go, ebb and flow. But the hot flashes affect me every single day, because it’s hard to function  normally when I NEVER get a full night’s sleep, and it’s impossible for me to sit still and not exert myself every single day to avoid the daytime flashes.

Today is treatment number 4. Three down, three to go. I will be so glad when this is in the rearview, and I better never get cancer again.