OK so last we spoke, or more accurately last I blogged...
I had a mucus plug that rendered me useless and pathetic but alerted us to the fact that the Clinical Trial wasn't working. So now I am on traditional chemotherapy. I am on two drugs, Pemetrexed (or Olympta) which is the $10,000 ten min chemo I got last year and Carboplatin which is the sister drug of Cisplatin that was the 6 hour 200 dollar one. But Carbo is only an hour and has fewer side effects. I have one more round to go, but I'll explain more about that in another blog.
But we need to back a little further today to talk about the lung fluid. So I could not help but notice that from the late Winter to Spring I was having trouble breathing. The only things that my scan had showed was two lymph-nodes that were growing, but that wasn't enough to cause breathing trouble, which was good to hear. I didn't want to find out that the cancer was taking over my lungs. But I still couldn't breathe. So they gave me a chest x-ray and found I had a boat load of fluid in the Pleural Sac that bathes the lungs.
When you have lung problems, your lungs lose the ability to regulate the normal things, like how much fluid you need to keep your lungs wet. So the extra fluid I had was causing my left lung to not fully expand. The doc says I need to have the fluid drained. So they made me an apt. for a Thoracentesis.
I was told I could have breakfast, so when I tell the nurse I had breakfast, she is pissed. She calls everyone and their brother in law to find out who told me I can eat. She says to me, we can't give you anesthesia, and I said "I am only supposed to get a local." So she tells me she has to call the surgeon to see if he'll do it with a local. He was like "are you kidding we used to only do it with a local, what are you giving her a hard time for?" So I suddenly get a new nurse, which I don't really understand, I was cool with her, she was just doing what she understood to be the new outpatient surgery policy, they now knock everyone out no matter what. I think they do that so the recovery ward is quiet, but that's just me...
So I go in the OR and Dr. Maebody is like, look, this is how we usually do this, the only thing you'll feel is the needle with the Novocaine it's just like a dental procedure. So I'm like OK cool. So after a hilarious 20 min of taping my left boob up, they get started. It's true no pain from the procedure, but when they pop the tube in it feels kinda funky. They drain 1.5 liters. But truth is I did not feel any better.
A week later the doc sends me for another x-ray, fluid is back and worse. He tells me I need a tube. So they send me directly to the Big Hospital and it's perfect cause I haven't eaten all day. But it's John's birthday, I feel a little bad. Not too much tho cause I spent my birthday with him passing a giant kidney stone. Now we're even.
I am sent directly to a room and my nurse keeps asking me if I am in for the Pride Parade. So I can't help but feel like she's hitting on me, which made my day. And she was funny as hell so if not for my need of John's medical insurance to stay alive, I could have had some fun, but oh well.
So I am finally sent to surgery, when I wake up I find out they took 2 liters. Problem is, I can't breathe right now, I am choking on fluid. Turns out they took so much fluid that it triggered a Pulmonary Edema. I coughed my brains out and choked for about 7 hours. But it does stop eventually and I am OK by about 1 am. Now the funny thing is when I get wheeled back to my room and choking, my nurse is SCREAMING at the surgery nurses. "What did you do to my Jaime? She was all smiles before I sent her to you!!!"
Next day I am supposed to learn how to use the tube and go home. Except that the Nurse Practitioner who comes is very ambitious and tries to drain another Liter. Well she causes a pain to shoot up my left arm and I am in excruciating pain. I wanted to kill her. Now they have to run and get the EKG to make sure I'm not having a heart attack, so once they establish that the heart is fine. My nurse, new one, my girlfriend had the day off, was great. She explained that Nurse Mengela took too much fluid and the pain was my way of knowing that I should stop draining. But now I have to stay an extra night.
So we walk around the hospital we find the craft room, but the good stuff was gone. We find a balcony to hang at. It's all good. When I come home I have two visiting nurses who continue my tube training and they all agree that I not drain everyday, but every other and when I get even a glimpse of pain, stop. So I am very happy that the nurses are understanding the process and my feelings. And they train me to be a pro.
When I start out draining I am draining 900 ml every two days. And that is when I suspected that the clinical trial wasn't working. So then I had the mucus plug incident and my suspicion is right, nothing is shrinking. So I am going to switch to real chemo. Which makes me happy cause now I have a good shot that the fluid will start to reduce. And sure enough with the first round BIG change. I was draining 400 ml every other day. Right now it's a lot less, BUT I can't get my hopes up yet cause I have to drain small for a few drains in a row. I'll report when that starts to happen.
But yeah so I have tube sticking out of my side. I had a stitch that kept it tethered to my side, but that stitch was awful and my body literally rejected it. But my body has had it for so long that it's now apart of me and my tissue, so no stitch necessary, whew! The part of the tube that sits flush within my side before looping over my rib, itches every now and then. But the real enemy is the tape that I use to keep on the gauze. I'm allergic to everything but paper tape. Paper tape means there is no waterproofing, so I have to constantly change the bandage. But now I have had it for so long that a bandage consists of one sq inch gauze and three pieces of tape. The tube I let hang, I'm sure it freaks people out, but I have to have some fun!
So that's the story of the tube. When I drain 50 ml for three straight drains I can call the surgeon who put it in and we can talk about removal. So hopefully that'll be my Christmas present this year. But all in all, considering I have a tube sticking out of my chest that I have to keep clean and I pour out fluid from so I can breathe better, it's not that bad. The whole process take 10 min every couple of days. And it's something I can do for myself and I don't have to have a battery of docs and nurses to take care of it. It's my thing.
And I can't lie, sometimes I enjoy swing it around like rich cartoon guy, chest out, in a top hat swinging around his pocket watch.
Jamie god DAMN it..... I was worried fucking sick about you. Email me or send me a facebook link or something so I can check up on you. If I weren't in pink hell, I would have actually seen this post the minute it went up. I'm so sorry about all of this shit. I was probably IN the hospital at least once when you were "visiting" and playing games with that nurse. I would have popped in to say hi. No shit... email address is email@example.com .... I thought I had another way to get in touch with you but IF I DID... it's poof... gone from MY chemobrain.... You scared the shit out of me, girlfriend....ReplyDelete