Wednesday, December 17, 2014

Just wanted to give a quick update.  Things are going okay.  I saw the doctor a couple of weeks ago and we decided to cut the dosage of medication because of the chills and night sweats.  It has helped.  I have only been waking up two or three times a night to change my clothes and bedding, and the chills are much less severe.  I still feel cold almost always.  My feet hurt to walk on.  In the morning it's like someone has thrown glass all over the floor, and I have to get the kitchen.  I have random painful red bumps appearing and disappearing all down my legs.  Both legs are swollen by the end of the day.  And I generally just don't feel 100%.  I am just over the first cold that I can remember since I started immunotherapy almost 3 years ago.  My blood counts are still a little low from the TIL, so maybe that's why I couldn't fight it off.  This cold came with a cough that was so strong it made me throw up.  Josh slept on the couch because things were just ugly at night.  Luckily he is back, and thank goodness he leaves at 5 in the morning, because that's the only dry spot in bed and it suddenly becomes mine.

I have been a little bummed about my health lately.  I was offered a trip this month.  I know he will be embarrassed that I'm mentioning it, but Josh's brother Mike opened up the world to us and said pick a place, any place.  Like my own Make-a-Wish granter.  I tried to think of somewhere.  I wanted to be warm.  Sun would be tricky (my lips have blistered like crazy after 10 minutes of forgetting to cover them outside), and even slathered in sunscreen and a wide brimmed hat-in a swimsuit I look like I have some communicable disease with these red spots on my legs.  Italy sounded amazing, but do I really want to use that up in the winter?  And how big of beds do they have in Europe, and how many towels per night can I wipe down my dripping body with?  And how will I clean all those wet clothes?  And what if I can't keep going all day like I would want to?  And how will I keep my medicine in the refrigerated during a trip?

And so, it didn't happen (he says I can take a raincheck, so no worries).  There is nowhere I can hide from the disease.  There is no escape right now.  Not even in sleep, which has always been my relief.  I have been having nightmares again, I don't know if it's because my sleep is so interrupted or if it's because I drew a line at the BRAF inhibitors and said at that point things will be bad, and here I am, and in my mind things are bad, so I come up with scary stories to tell myself while I sleep.  I don't know.

During the day things don't seem that bad.  I have been trying hard to find appropriate gratitude for the drugs I'm taking.  I found it in my own words here at the end of the post.  Someone handed me months of extra life.  In pill form.  I'm so lucky I've been around these three years to watch my kids grow up.  It's crazy to think we are spinning around the sun at the same speed.  They change so quickly, and Josh and I are stuck at 22 (ha!).  I'm just so grateful for this bonus life, I know I'm lucky to be here.  I feel really lucky to be here.  More than mad at the disease, and disappointed that things aren't turning out how I planned, I feel deep down very lucky.