We Ain't Done Yet

"Last night I had a dream, When I got to Africa,
I had one hell of a rumble.
I had to beat Tarzan’s behind first,
For claiming to be King of the Jungle.
For this fight, I’ve wrestled with alligators,
I’ve tussled with a whale.
I done handcuffed lightning
And throw thunder in jail.
You know I’m bad.
just last week, I murdered a rock,
Injured a stone, Hospitalized a brick.
I’m so mean, I make medicine sick.
I’m so fast, man,
I can run through a hurricane and don't get wet.
When George Foreman meets me,
He’ll pay his debt.
I can drown the drink of water, and kill a dead tree.
Wait till you see Muhammad Ali"


I came across that quote today and couldn't describe the attitude I need to have right now better than that. The last 3 weeks have been pure hell, with the last few days being especially excruciating. I have fungal pneumonia, some bacterial infection and now severe Graft Vs. Host Disease (GVHD). The pneumonia has been producing a nasty cough pretty much all day and night, pushing up phlegm into my already cut and torn up mouth. I'm basically not producing any saliva of my own, because the medicines I'm on that completely dry you out and the re's GVHD in my mouth. Sometimes it hurts to even drink water with all the cuts and ulcers in my mouth, let alone eat. Whatever I do eat, I throw up because of the cough. I weigh only 100 lbs. and can no longer walk more than about 200 feet. My Mom takes me to and from the hospital in a wheelchair - 3 weeks ago I could easily walk to and from. 


Most of my day is spent in the hospital, because I'm on some serious IV medications and a ton of pills. A lot of them are to be taken at different times of the day so it's mentally exhausting having to keep track of all the times, because my appointment times vary so that throws off my whole schedule. Some have to be taken on an empty stomach, some with food...it's just so very complicated. This is what you have to do when you have 3 problems going on at once. I think the pneumonia should be getting better soon though with the intense medicine  they put me on. The first day I took it, I turned off the lights to go to bed and saw this dim light flashing constantly. I thought I was gonna have a seizure and felt so dizzy. It also causes mild hallucinations every night, which is pretty interesting. Thankfully the flashing lights are not that apparent, but the dizziness still continues. My vision is getting so blurry, I have to wear glasses everywhere. 


This degree of gvhd doesnt happen to most people...it was not supposed to happen to me with such a great match...only about 30% of people get gvhd at all. I'm on two strong steroids and this pro-graft medicine that's expected to stop this and turn things around, but it's taking a while...my liver was finally healing from the previous complications, but it got about 7-8 times worse in the last couple weeks. I still can't taste ANYTHING, I could be eating grass and I wouldn't know the difference. I basically force myself to shove food down my throat, because the steroids make me so hungry. 

There's not much the doctors can do other than just wait for it to pass. Between the last problem and this, I had about 4-5 days where I could eat and taste things almost normally...it made a huge difference. This has taken away all of my strength, I've never felt this weak before. My hands shake all the time, I drop everything. I lost 10 lbs. all because of this. I was afraid I'm not gonna make it through my bday, but I just have to hope this is the last big issue and after this I can go home. I've been here so long, I forgot what it's like to go outside and feel the air. In the meantime, I just need to keep eating and move as much as possible. This is the hardest I have ever to push, but if that's what it takes, I have no choice...I have to wake up and go to the hospital and just dream of being done with this. 

Oh the worst problem is that gvhd completely kills the skin on your body. It's all peeling off now and couldn't be a bigger mess. The entire layer of skin on my legs, arms, hands and feet is coming off. Apparently, a new layer will grow, but again who knows how long...

This is where I've been, this is my life. But I'm pushing til my last breath. Three months and counting...

Graft vs. Host Disease and an Unknown Enemy

A friend sent me a link to the trailer for a new documentary coming out, called "Crazy, Sexy Cancer." As always, watching something like this is hits close to home, but this case is a lot different than mine. It's about a stage 4 liver cancer case with no real cure and completely experimental treatment protocol. Now, think about that...you find out you have cancer and then the doctor tells you, well we don't know what to really do. How do you not blow the world up? When I see or hear about a young cancer patient, my mind just starts running in circles, because it's doesn't happen that often. I start wondering how they felt on the day they found out, if they go through the vicious cycles of optimism-anxiety-depression and back to optimism, etc. This girl answered a lot of those questions.

The other day I saw a young patient at Hopkins who looked just like me: no hair, pajamas, slippers, hooked up to a large IV machine indicating she was in the inpatient phase of the treatment. The difference was she was white and much lighter, but I knew she had had a good amount of treatment, because I know what your body starts to look like (she was around my size and height) after the chemo/radiation. It was the strangest feeling to see someone in such a similar situation and know the way I felt when I looked at her is probably how other people feel when they look at me. I wanted to talk to her, but she looked pretty tired and had company, and I just didn't have the energy to start a conversation.

What's been happening the last few days? Well, two things. I have a pretty infuriating rash all over my body, additional liver damage and abdominal pain: all signs of graft vs. host disease. That means my body or what's left of it (mainly the organs, the bone marrow has been replaced meaning the blood is now a little different) is starting to realize that the new blood cells are different. Noticing these foreign cells, my body (the host) starts attacking them (the new cells are graft.) There is nothing that can help with the rash or stop it once its triggered. The other day I was awake from 12-6am trying to stop the madness, but nothing I did helped it. I even took a cold shower at 4am, something I haven't done since I was in India, but no luck. I called the on-call doctor and she pretty much said, I'm sorry there's nothing I can do, just take some sleeping pills and hope they knock you out.

Problem #2: I also have some sort of virus that's causing flu-like symptoms. It started with very high fevers and a sore throat, but has now really taken over my mouth too. It's basically like having mucositis again, but in addition to the graft vs. host in the mouth. There are ulcers, cuts, scratches, bumps, etc. everywhere and it hurts to even drink water. My throat is worse. Every so often, it starts closing up, meaning gets very very dry and I have to take a painful gulp of something or cough a lot to try to just breathe again. I can feel mucus running down from the back of my nose to my throat and sometimes I try to cough it up and it comes up yellow and bloody. Needless to say I can't eat anything anymore and I'm dropping a lb. a day. I feel so beat when I walk and it's getting harder and harder, because all this has been happening for about a week. A lot of testing has been done but nothing has been found. Tomorrow they're going to take a scope and drop it down my throat to try to see what's going on, so that's kind of the last hope in finding out what's causing this and maybe getting some medicine to treat it. It's making my life a living hell, and is one of the nastiest problems I've had in this process.

Today is day +60. Usually, you are released from the IPOP clinic to go back to your oncologist at home on this day. The two issues I have right now are what's stopping me from being able to go home. I try explain to people why this is hard to accept and I can't just sit here and think, well, I'll be better soon and then I can get out. We haven't even figured out what this is yet. I can handle the mouth pain, how many times do I have to? This occurrence of pain is completely unnecessary and doesn't happen to anyone. How many times do I have to stop eating? I've been enduring this torture for 6 months now, the first time I did treatment, everything happened in about 5 months or so. After that I just healed. I thought I was getting close to saying OK, the worst is over, but I would've had to bite my own words. I even have to start biting my thoughts now. All I wanted was to be home this week, because my brother is there, but it's not going to happen. I haven't seen him at home since he left for college, because I've always been in hospitals when he came home for breaks. I can't take many more days of this, I'm sick of explaining the problems I have to people and sick of just trying to push through the pain without knowing, once again, what these things are and how they're going to going to be fixed.

The only source of happiness this week was the video that all of my friends made for me. The idea came from one of my closest friends and with everyone's contribution, the video turned out amazing. It's one of those things I'll watch when I'm 60 and think wow, even in the worst times, there were so many people who cared and made me smile. Thank you so much Ms. Parmar and JC for making this happen, you have no idea what it means to me. It made me forget all about my pain for a bit and hey, there's nothing more I could ever ask for!