Friday, December 9, 2016

It's been a long time since I've posted; much has happened over the last few weeks.  After careful consideration, I have decided to proceed with a prophylactic bilateral mastectomy.

As most of you know, I have the BRCA2 genetic mutation, putting my risk for developing breast cancer much higher than average, particularly since I've had ovarian cancer twice.  There's nothing I can do about preventing the ovarian cancer from recurring, but breast cancer--this is something I have some control over.

For a host of reasons, I've decided to have the surgery at Fox Chase Cancer Center.  It's a hike, but I think the benefits will outweigh the inconvenience of having to travel there.

So thank you to family and friends who have been faithful supporters.  Here we go again again...

There's no special meaning behind this duck photo; it just makes me smile.

Wednesday, October 19, 2016

It's 11:35pm.  I should be sleeping, but here I am, wide awake.

I have to be up at the crack of dawn tomorrow because I have an appointment with my gynecology oncologist.  There's no reason I should be stressed about this: I've been feeling well for the most part. It's just that fear of the unknown, the "what if" that starts to gnaw at my stomach.  My chest starts to feel tight, and before you know it, my alarm goes off, waking me up to Warren Zevon howling "Werewolves of London," just as I'd drifted off.  If that doesn't wake you up, nothing will.  Meanwhile, I've spent the night chasing sleep like a mother trying to catch her rebellious toddler.

Like I said, I've been feeling good for the most part.  I have been struggling with the proverbial pain that I have, but that's nothing new.  Last weekend was pretty rough though.  I had severe pain in my side, and then I got a full-blown migraine just for fun.  It's not often that my problems bring me to tears, but in the middle of the night Saturday, I just started weeping over the pain, the loss of mobility, how this disease has changed my life and my parents' lives, and another issue I'll get to.  I don't mean I was crying; I was weeping.  There's a difference, at least from a literary perspective.

The other issue is that I'm having problems with forgetting words, or how to express myself.  The other week I was writing something and had to use the word "cup."  I couldn't remember how to spell it.  I sat there in an internal panic for what seemed like an eternity; I was just at the point of getting up and asking my mother how to spell it when it came back to me.

I could chalk this up to just chemo-brain, but it's been happening a lot more frequently, and now it's becoming something different.  Yesterday I was typing something and suddenly, "poof," I couldn't figure out how to get the thought that was in my head into my fingers.  It again included a problem spelling a simple word--"who."  This time it took about two minutes until my neurons were firing on all cylinders.  It's hard to explain: It's like having a mist suddenly descend in your mind, clouding all your thoughts.  Then, just that quickly, it's gone.

I'm debating telling my physician tomorrow, but I'm afraid she'll either just think I'm neurotic (a possibility) or, this being an academic center, she'll take me so seriously that I'll be in for lots of tests that require myriads on myriads of tests.

OK, well, I am going to try to get some sleep.  Why is it I sleep when I wish to remain awake and I'm awake when I wish to be asleep?

Monday, October 3, 2016

Well, it's been quite a while since I posted here.  Summer came and went, and Autumn is here.

Later this month I go for my q 3 month eval. with the gyn. oncologist in Philly.  I don't anticipate any problems since I've been feeling OK.

I had an issue earlier this year which had me concerned.  Since I have the BRCA2 mutation, I'm at a higher risk for breast cancer.  Well, long story short, I wound up needing to go see a breast surgeon.  Things are OK, but he wants to see me back in January.  He asked me if I'd thought about prophylactic bilateral mastectomy due to my risk factors.  I told him I had, but I kept breaking bones and needing orthopedic surgery.  It's something I'm thinking about; I really don't want to have to deal with another cancer.

It was nice to have a few months of peace and calm.

Friday, April 15, 2016

Well, so much for the idea of walking and getting out of the house and in the sunshine.  I went for a short...very short walk yesterday.  Big mistake.

I'm back in my big orthopedic boot and have limited walking.  This is just so frustrating.  I was hoping to get to enjoy the nice weather for once.  After all, it's been years since I've gotten to do that.

Color me very, very discouraged.

Thursday, April 14, 2016

It's been a couple of months since I posted anything; things have been status quo for a while, except for the proverbial sinus infections.

Yesterday was a long day. My parents and I went to Fox Chase Cancer Center in the morning, then went straight from there to Rothman Institute to see the orthopedic surgeon.  We were all exhausted when we got home!

Things were good with the gyn oncologist.  I had blood work done (CA-125), and it came back at 3.7, which is great.  I have to go for a breast MRI before I see the oncologist in July.

The doctor at Rothman said my ankle had still not healed completely, but he thought it would be OK for me to start walking like like a normal person.  This afternoon I went for a short walk with my mother.  It was the first time I was out for a walk in over two, maybe three years.

So, this weekend I will be shopping for shoes...another thing I haven't gotten to do in a long, long time.


Thursday, February 25, 2016

It's been a while since I posted, so I thought I would do a bit of an update.

My lymphedema has come back with a vengeance, so I'm going back to therapy to try to get it under control.  It's a real balancing act.  The meds that I take to get rid of the fluid throw my electrolytes off; the other week I got a call from the cardiologist because my potassium was 2.5...way too low.  He wanted to admit me to the hospital, but I talk him into letting me take extra potassium and magnesium at hime to bring it back up.

It has just gotten so frustrating: running from doctor to doctor, taking all these meds.  It feels like my life just revolves around doctors' appointments and pharmacies.

My pain has gotten much worse.  On Tuesday I went to a palliative care doctor.  She made some adjustments with my pain meds.  I hope it works; the pain just grinds me down.

Some days it really gets overwhelming.

Saturday, January 9, 2016

Haven't been posting here lately because things have been status quo.

On Wed. I went to the oncologist.  My CA-125 was good, but she wants me to have a CT scan because I've been having abdominal pain.

Then it was off to Rothman Institute to see the orthopedic doctor.  Things were looking good with the surgery, so now I'm allowed to start walking.  It's painful, but it feels good to be able to stand up and walk around.

All in all, it was a good day, but a long and tiring one.  I spent the next two days sleeping.

It seems that life can go back to normal for now.  I could do with a bit of boring for a while.