I feel really guilty I haven't posted in now, for the first time since starting my blog, in over a week! To be honest, I've been really overwhelmed lately. So much so that when I think about typing a new blog post I just can't. I can't gather my thoughts. I have too much to say. Which, really, hasn't ever been a problem before because usually I just start writing and my thoughts come together. And also, honestly, not posting in over a week has equaled me feeling really blocked. Like a blackhead or pimple or something. I feel I need to get everything out - or as much as I really can.
So last week I met with my plastic surgeon for my second post-op appointment. All went really well, and he lifted all of my restrictions! He even said I can "lift a truck tire" if I really wanted, but I assured him I'd be doing nothing of the sort. But I really am so happy to be able to lift weights again, workout and stretch. Sean and I went to the gym yesterday, and it felt amazing to be able to ride the bike, and I'm sure soon I'll start running again.
I also met with my genetic counselor, and this is the part that's overwhelming. The point of the visit was to discuss more of my specific case, what it means for my health, etc. So at this point my mom is going to get tested, and they are testing my tissue from my mastectomy to see if the mutation is present there also, since it was only found in some of my blood cells and not all of them. Testing the tissue will help determine where else the mutation is, and can kind of direct my care even more.
We also talked about options for having children, ranging from just having them and seeing what happens since my child will probably have a 50-50 chance of inheriting the mutation, to adopting, to egg implantation, where they remove my eggs and only implant the healthy ones - the ones without the mutation. The price for that starts at like $10,000. We also talked about my health screenings moving forward, how a preventive mastectomy was recommended (but until then I would get mammograms alternated with MRIs every six months) plus colonoscopies plus full body scans and imaging, plus being a part of a NIH study, possibly, plus going to Maryland every year for a Li Fraumeni conference, plus meeting new doctors, plus joining a support group, plus if I'd have a mastectomy before having kids or after, plus if I want to breast feed, plus how and when we should talk about having children plus plus plus plus PLUS. Too much to think about. Too many huge life decisions. Too much to wrap my head around.
PLUS I had a scare last week when I found a lump in my neck. I put myself into an all-out raging panic and anxiety attack. Luckily within a day I was in to see a doctor, and the following day got an ultrasound of the lump. So, I'm somewhat breathing again because the radiologist believes the lump is just a benign lymph node, and at this point is too small to biopsy, so the recommendation is to watch it, and have another ultrasound in 6-8 weeks. They will send the results to my oncologist to see if he has any other recommendations.
Is that enough to deal with in a week? Yes. So I'm trying, right now, to just BE. Not sure how that's going. I'll let you know as soon as I figure it out.
How do I BE, exactly? Living in constant fear because I have Li Fraumeni? Every time I find a "lump" am I going to be like this? Literally shut down for days. I know they probably think the lump is fine, but I'm really not ready to let it go. Is this how I'll just live now? Is this how I'll just BE now? Always requesting ultrasounds and biopsies and fine needle aspirations because everything could be cancer? I have real, documented reasons to be scared about getting cancer again. So how do I live like this? I am doing my best to go on with daily life ... make plans with friends, do things I enjoy and just be me. That, I'm afraid, is really going to take some work.
So once again it's about finding balance, but this time in a different way than when I had the expander and was waiting for my final implant surgery. Now, it's about BEING:
1. How do I live knowing I have a genetic mutation that makes me prone to cancer?
2. How do I plan my wedding and my life and my family knowing I could pass this mutation along?
3. How do I live with constant screenings and testing?
4. How do I live while waiting for my next mastectomy? Especially knowing that I've decided to have one.
5. How do I live while making the decision of WHEN to have my mastectomy - before or after I have kids? Breast cancer risk increases with age, especially for me, but it's also harder to have children the older you get. How exactly do I fit that decision into my life?
How exactly do I fit Li Fraumeni into my life?
So, this blog will go from ...
Planning my wedding while coping with breast cancer to planning my life while living with Li Fraumeni Syndrome.
Team Pink and Pearls will ride in 2018!
Help us raise money for Tour de Pink East Coast 2018!
Dear Marjie:
ReplyDeleteWhen I read your blog posts, I'm reminded of the saying by Woody Allen, "If you want to make G-d laugh, tell Him about your plans." If I look back at my lifespan which is about double yours in length, and read my journals which were as close in the Dark Ages to blogging as anything in today's world, I too laugh when I look at my "goals" and that virtually none of them was achieved as I expected or when I hoped.
Does that make me a colossal failure? Not hardly. For instance, I dreamed of attending the University of Missouri ... family financial pressures and the need to stay home nixed that idea. Instead, I lived at home, graduated from college, and still got the job. At college, I met my love and married after graduation. I landed my first job ... and got laid off 6 months later when the company went bankrupt.
I regrouped ... got another job and still others over the years. Paid the bills, moved, bought a house, traveled, grew together in love ...
In summer of 1983, we wanted to get pregnant. SCORE -- first month, success. Fourteen weeks later, on Thanksgiving, I had the heartbreaking loss of my baby, who died within me. I questioned my faith, my hopes were dashed, I couldn't stop asking WHY?! I took a year to figure it out.
Got pregnant the next Thanksgiving ... had my beautiful daughter the following summer. SCORE! Six days later, I had the first of what would be (over the next 30 years) a series of now five strokes, each one leaving me a little more disabled. My husband strayed ... we parted. This wasn't in my life goals!
Four months later, I met the true love of my life. I went through a nasty divorce from Husband #1, which bankrupted me financially and tested every bit of strength and faith I had. John and I married; we've seen each other through highs and lows. Honestly, our health crises have been many (ICUs, Last Rites, disability as a result, lost jobs, lost income) but at the same time, we have each other.
Marjie, this is called LIFE. It is what you make of it. I cannot and will not be ruled by my plans for the future. None of us can predict the future, any more than you can predict the course of your Li Fraumeni. With strength, with faith, with love, you'll conquer all. You're human, after all -- and isn't that a good thing to be?
Much love on your journey,
Ellen