I am feeling good! Movement is tricky, but we can work on that slowly. There is a drain sticking out of my side that is cramping my style, but we should be able to pull that out next week.
doctor said the operation went as good as it could have. Said the
tumor was about the size of a fist. It had not invaded the muscle or
major blood vessels, so everything is intact. He again guessed I would
develop lympedema, but thought the tumor would have caused that soon
enough if I hadn't done the surgery. Strangely the only real pain and discomfort I'm
in now is not from the surgical site, but from the swelling in my arm.
Hoping it is temporary, but it is very suspicious of lymphedema. I am
pretty bummed about it (maybe extremely depressed for small moments), but I have Josh
telling me it doesn't matter at all, and asking me if I'm alive in 5
years if I will really be complaining about a swollen arm? Good
We will see how things shake out this week, and get serious about getting it under control if it doesn't improve. But do you ever have those strange sensations as you are drifting off to sleep of one of your limbs or your head swelling quickly (tell me I'm not the only one)? I woke up one morning to the very thing, only it was not at all a dream. I did not recognize my arm, and was sufficiently creeped out. Josh said it looked like everyone else in America's arm, but not mine. What a sweetheart.
know those other dreams you have about waking up from anesthesia and someone telling
you something went wrong? I kind of lived that one too when I was in recovery and Josh told me my Florida Dr. called to say I won't be able to come
back for his trial. He found out that signing a consent for another trial disqualified me for his. It's a very long
story, last week was a disaster trying to figure it all out. I cancelled my surgery on Thursday because of the confusion. But on
Friday we got the okay for surgery in Seattle from the Florida Dr.
Monday during surgery they found out from the drug company it would not be okay like we thought.
I was not devastated, as I feel like I have
gotten all the benefit I am going to get from the PD-1. And it sounds
SO nice to stay home for a while. So, so, so nice. I just wish we would have been able
to factor that into the decision that was made. Most likely I will be
doing nothing for 4 weeks to see if they can get enough of my T-cells to
grow in Seattle. Like I said, there is a 50% chance they will get
enough cells. If some other tumor starts to bug me in the meantime then we may
have to alter our plans. And then of course if they can't get my cells to
grow I will pursue other options.
I haven't even told my Seattle and
Utah doctors about the mix-up yet. I don't know if I can handle one more conversation
about it. I spent a whole week pestering all three of my doctors last
week, only to make a decision that doesn't work anymore. It
is very confusing to have three oncologists in three states. They are busy
people and have been very kind to help me form a plan. This was the one
that we all liked.
There is a certain unbecoming phrase that has passed through my mind (and out of my lips) more than once this week. It includes two swear words and is absolutely all encompassing and has brought me much relief. Thank goodness for cuss words when you really, really need them. And also thank goodness I do not swear regularly, or they wouldn't pack enough punch.
all around we are doing just fine. Now that I am needy again (the surgeon called me out on my independence the first meeting we had, is it that obvious? Said I must take it easy, and let others do my chores for me as hard as it may be), I am reminded how kind people
are. Our house is spotless. Our fridge is full of good food. My family takes care of my kids. My
friends come to check up on me. Prayers have been said around the country for me. We are really the most spoiled family on the planet.
I have spent a lot of time in
bed trying to keep my arm elevated/wrapped/massaged this week, and following the Dr.'s orders. I have been digging into melanoma
blogs, if you are wondering what I've been doing (haven't done this for a long, long time). Trying to find some others who have done TIL trials or
other successful treatments at stage IV. ***Spoiler Alert!!!*** They all die. Well, okay. Not all (Christina). Most. And the thing is, the way blogs are set up, you always know their end from the beginning. What a strange way to read a person's life. Backwards. But not upside down. It almost makes it all make sense.
I am being reminded of some things while I read. I have got to make an effort to write down what is happening along the way, because I have learned so much from these people's experiences. These are people at the end of their lives, reading their own stories backwards, and have things figured out. It's fascinating how everyone comes to the same conclusions. Beautiful, simple, and inspiring conclusions. The same ones that are drawn out of all the great books, and all the great minds. They are at the end of every lovely story. And every lovely life. The moral of the story is always love in one form or another and it's so individual and universal-it almost takes your breath away.
But no need to stop breathing here. Not yet. I have a lot of confidence that we have more successes coming our way. I am not in my final chapter. Kind of up in the air as to where we are headed next, but I'm not scared. I am learning to trust that my story is being watched over and my steps guided.