In early July I went back out on disability. The treatment I'm on is every two weeks and it just got to be too much for me to continue to work while going through it. I miss work. I like the company I work for and the people I work with, not to mention being a contributing member of society, and it was really hard making the decision to go out. Right now my leave is indefinite, and I truly have no idea when I will be able to return, if I will be able to return. My good weeks are ok now, but I don't have as many good days as I used to, and it's entirely because of this treatment schedule and the pleural effusions. So until we get things under control, my leave is indefinite. The treatment seems to be working slowly though, so fingers crossed!!
The pleural effusions (bilateral) continue. I am at Fox Chase at least once a week now getting a thoracentesis on either the left or right lung. (That's a tap, for those wondering. You get good at medical terms when you're at the docs all the time!) The fluid doesn't seem to be accumulating as quickly now, but I did have a liter drained from my right lung on Monday after having it done just a week prior. It has been 3 weeks since the left lung was drained and that's great news because it means it's not accumulating as quickly. My right side has always been the bad side though, for some reason, with everything. I have a thora scheduled for Friday for the left side after treatment. I am getting tired of them. They are painful. First they put a needle in to numb the skin and surface tissue. Then they go deeper and numb the lining of the lung. That one takes your breath away. Once the doc didn't wait long enough for the numbing to occur, or she didn't get enough in there, and I felt the catheter go into my lung. Let me tell you, I've been through childbirth, both the pain of pushing with a little head peeking out, and the pain of a C-section without enough sedative, and I never cried from pain of a medical procedure until that moment. There are so many nerves in your lungs and it was so painful, I actually make sure to tell them every time I go in now what happened and to take it slow. They've been good since, thank God. I'm still done with it. I have an appointment in a few weeks with a thoracic surgeon to talk about next steps. I'm still up in the air on when and if I will get further treatment, but I need to have the consult so I'm ready when the time comes.
One last piece of medical info before I move on. There is a clinical trial at Penn that I'm interested in and have asked my doc about. It's an immunotherapy trial. I have always been a strong believer that immunotherapy is the right treatment for me and I could be full of crap (you know, with my obvious medical and bio-science experience), but when the cancer loves your immune system, it seems only logical that if you reprogram your immune system to fight the cancer, it is your best chance for remission. My doc at Fox Chase agrees this is a good trial for me and told me to contact my doc at Penn, which I have. It often takes a while to get all things dotted and crossed for a clinical trial, so once I know more, I'll let you know, but it may be a while. I may not qualify, but I'm hoping to God I do, and all juju my way on this one would be greatly appreciated.
So the title of this post is from my theme song during this fight, by Gym Class Heroes. There are so many things about this song that I relate to, even though it's not at all about fighting a disease. When I am down and feeling like I just can't do it, that song brings me back to my fighting weight.
"And if I can last thirty rounds
There's no reason you should ever have your head down"
Everyone has their own issues, and everyone needs to complain about things that ultimately don't matter in the end, but when I feel like I am complaining about things too much, or I hear people harping on about things that just don't matter, this is what I think of.
"It's gonna take a couple right hooks a few left jabs
for you to recognize you really ain't got it bad"
And it brings me back to center.
"If you fall pick yourself up off the floor
And when your bones can't take no more
Just remember what you're here for."
Happy 6th birthday, baby girl.
xo, Lisa
