I am so, so tired.
Tired in my bones tired.
New mom, breastfeeding, up all night tired.
Dissertation-writing graduate student tired.
Struggling writer finishing a manuscript tired.
But without the baby, the dissertation, the manuscript.
Three weeks ago, my oncologist switched my hormone supressing cancer therapy from tamoxifen to aromasin, an aromitase inhibitor. Aromasin, like Arimidex, which you may have heard advertised on the radio or at the 3 day walk, works to prevent recurrence of hormone-positive breast cancer by blocking the production and circulation of estrogen. Aromasin is recommended for post-menopausal women, while tamoxifen is best for pre-menopausal women.
Like most steps of my cancer journey, I fall into the long tail of women who are neither or both, as I was pre-menopausal (and 34) when this all started, but, after 6 months of chemo, 3 years of tamoxifen, and the removal of my ovaries, I am now utterly and thoroughly post-menopausal (and 36). Which hormone suppressant should I take? Nobody knows. There are no studies.
There are no studies.
There are many, many women who have become menopausal through cancer treatment, including many of my IBC sisters, who don’t have any scientific guidance on which hormone suppressant to take. We don’t know whether tamoxifen, which ravages a woman’s hormonal production and causes all kinds of unfortunate side effects (I’m not going to get graphic; my dad reads this blog), or aromasin, which does the same and in addition strips women’s bones of their strength, causing 40 year olds to develop osteoporosis and all of us to be tested annually for early detection, causes untold aches and pains where none were before, and generally wreaks havoc, will work at all for us. It’s not been studied.
So, like the good girl that I’ve always been, I take my medicine, say my prayers, and hope that one or the other (or both) works, and my body can fight off recurrence for a few more years, until I’ve gotten some projects under my belt, published my book, written and published a follow up, raised my children, and checked off some more things on my “bucket list,” all the while knowing that the medication is only “probably” going to work for me, and my sisters in this pre/post menopausal gray zone.
Oh, and did I mention that it causes insomnia?
I have not slept more than two hours at a time, three to four hours a night, in almost three weeks.
But I’m a good girl, and I take my medicine … and pray.
Susan, what on earth can I do to help you? Can I come and take your kids for a day–or two? Can I spend a few mornings or afternoons just hanging around your house while you rest? I’ll do laundry. I’ll clean your bathrooms. I’ll pick up every toy I can find, and I’ll do your grocery shopping for the next month. I’ll make meals. I’ll bring coffee. I’ll bring wine. At any time of the day. Or I’ll just sit on the couch with you as our kids run around crazy, and we can chat.
Friend, I am sick to my stomach thinking about what a baby I can be after I read your eloquent posts–especially ones like this.
How about I just come over next week? You tell me what works, and depending on how you’re feeling, we can hang out, or you can rest, or we can do both.
Let me know. And hang in there, knowing that there are many of us keeping you in our thoughts and prayers more than you know.
Amy, You’re a fabulous friend. Susan, if I knew you IRL I hope I would be right there with Amy. I can only be here for you on-line, but in times of insomnia that can work quite well – the time difference means I won’t be asleep anyway. So just email me if you need someone to chat to in the middle of the night. Meanwhile, we’ll all keep praying and sending good thoughts and crossing fingers that all the right things are happening and that one day many many years from now, with great-grandchildren at your side, you look at that bucket list all crossed off and wonder “now what?”.
Hang in there Sus. We’re pulling for you.
It’s a tough call. I couldn’t tolerate aromasin and decided to punt it and go with living as much of a healthy lifestyle as possible. Those stats on the AIs just didn’t convince me it was worth all the side effects. Others are more fortunate (?) and can tolerate the drugs.
I hope whatever works for you, works for you…
You’ve got lots of people pulling for you, Susan. I hope the insomnia fades soon.
Let me help too—whatever you need.
I think that in almost any case, not knowing is the hardest part. I wish there was research and I wish that you could just KNOW. I’m sorry.
Let me help too!! I’m so sorry and will do anything to help. I had these GREAT friends come over and help me get my house in order and I’m ready to return the favor!!! Hugs!
Thanks, thanks. I’m taking some narcotics for pain relief now (the pain has been pretty unbelievable since mid-January, with periods of relief as I get physical therapy) and last night I was finally able to get some sleep.
But I’m still pissed off about the lack of research.
Sorry you are having such struggles. I just want to mention that I (post-menopausal from the start of my BC saga) have been on femara, another of the aromatase inhibitor options, for over two years, and it is working fine for me. I do still have issues with not sleeping through the night, and am up several times, but am not sure I can even attribute that to the femara. I have been trying to get a late afternoon nap in on days when I really need it — have found myself falling asleep at the computer and hitting my face on the keyboard — but I realize that is tough to do with young kids.
I have no idea why some doctors prescribe aromasin and some femara — suspect that they simply start off on one and switch if there are problems.
At least with these drugs we eventually get a reprieve (after five years).
You have come such a long way, and I hope the road ahead will get smoother for you.
I Just hear that so often- How tired and I can’t imagine all that it is when your in it like you are.
I have checked in over the months since Meighan died, my brother ran the NYC marathon in her honor and raised alot of money and his daughters have been here for a visit last month. Now I help others friends that have started their battle and I hear how tired they are.
Let us know how we can help the fatigue on those days.
I am thinking of you and wishing for the spring to bring new energy and a cure.
I pray for you. I pray for all mothers who are worried and scared and frustrated and angry. I pray for their children and their spouses and their friends and their families. I pray for the researchers. I pray for me.
My prayers are for you. That God can give you some rest and peace in all of this. Know that through your struggles and pain, you have touched so many women and family as well. I know that does not make things better. However, I feel that you are a blessing to all who know you. I love you.
I wonder if there is a way to retroactively do a study? Gather medical history and current progress to see what is working. It wouldn’t be as sound as a study from the ground up, but it might be something. I know, the trouble is who is going to fund even this?
As Clifford said, we’re pulling for you.
[…] Nearly three years after my diagnosis, I’m still in physical therapy four days a week for pain management, scar tissue reduction, and lymphedema (side effects of my double mastectomy) and struggling with sleeplessness and other side effects of required medications tamoxifen and aromasin. […]
Sleeplessness is so hard. A good friend of mine says that she thinks that (like the native Alaskans, with their 50 words for snow) she has 50 ways of being tired. Angry tired, silly tired, uncoordinated tired… Here’s wishing you goofy tired, or better yet not tired.
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