Warning: This following note is directly from my diary. So, it is not edited. It is full of cursing. Not appropriate for small children. It picks up right where I left my last note.
Yes, it has been almost a year since I last wrote in here. Been a crazy, fucked up year. Hmm… Where to start?
1. The ABVD chemo didn’t work. Not only did my cancer not go away, it spread to a new area. I now have a new name for my type of cancer: Refractory Hodgkin’s Lymphoma. This really upped the ante as far as treatment goes. I had to get the ICE chemo.
2. Three rounds of ICE chemo. Well, I consider them to be 9 rounds because each one required me to be in the hospital for 4 days/3 nights.
3. Oh Happy Day! The ICE chemo worked for me. I was cancer free. Which meant I needed to get the high dose (HD) chemo and stem-cell (SC) transplant. But I couldn’t get them through JPS hospital. So I had to go on medical disability to get Medicaid so that MD Anderson would take on my case. Took forever to get the ball rolling; forever being about 3 weeks.
4. I forgot to say I had to get another Bone Marrow biopsy done. Fucking Ouch!
5. Because the registration and Medicaid approval process took so long… My cancer came back. I found out the day I was supposed to go into the hospital to start the HD chemo/SC transplant process.
6. Came back home to Keller and JPS hospital. Have to get 4 rounds (2 cycles) of GND chemo. GND chemo doesn’t like me at all. I feel like shit for almost 5 days. That is worse than when I was getting 3 nights of chemo for ICE.
7. Got my tonsils taken out. When I was down in Houston at MDA, they did a PET CT scan. This is how they found out the Hodgkin’s was back. On that scan, my tonsils lit up a little. They recommended getting them taken out before starting the SC transplant. So I finally, after fighting them for 27 years, got my tonsils taken out. And holy hell, did it hurt. I couldn’t eat. I could barely drink. I literally lost 10lbs in 5 days. And the ear pain! Holy shit… It would bring me to my knees. All I could do was sit there holding my ears and cry.
8. My liver hates me. It is very angry. After 29 rounds of chemo, it has decided to rebel. After my tonsil surgery, my liver function test results were double and triple what they should have been. I’m freaking out. My doctors are freaking out. Of course, my mom is freaking out. My main doctor is so worried about it that she decides to actually talk to Dr. Yuenes down at MDA (Lymphoma Specialist). They decide to push my chemo back an extra week to give my liver a little time to calm down. They think the combination of surgery, post-op meds, chemo-meds, and chemo was just too damn much for my liver.
9. Luckily, they were right and I got my last 2 rounds of GND chemo. The last being on 10-13-10.
10. Today (since I am writing this at 2 am on Thursday morning) is going to consist of me calling MDA to get the ball rolling as soon as possible. I need to get another PET CT scan. If I am cancer free, I will get the HD chemo/SC transplant treatment. That means I will be in Houston for 2 months. Basically all of the Holidays: Thanksgiving, Christmas, and New Years in the hospital. Fan-Freaking-Tastic!
Yes, it has been almost a year since I last wrote in here. Been a crazy, fucked up year. Hmm… Where to start?
1. The ABVD chemo didn’t work. Not only did my cancer not go away, it spread to a new area. I now have a new name for my type of cancer: Refractory Hodgkin’s Lymphoma. This really upped the ante as far as treatment goes. I had to get the ICE chemo.
2. Three rounds of ICE chemo. Well, I consider them to be 9 rounds because each one required me to be in the hospital for 4 days/3 nights.
3. Oh Happy Day! The ICE chemo worked for me. I was cancer free. Which meant I needed to get the high dose (HD) chemo and stem-cell (SC) transplant. But I couldn’t get them through JPS hospital. So I had to go on medical disability to get Medicaid so that MD Anderson would take on my case. Took forever to get the ball rolling; forever being about 3 weeks.
4. I forgot to say I had to get another Bone Marrow biopsy done. Fucking Ouch!
5. Because the registration and Medicaid approval process took so long… My cancer came back. I found out the day I was supposed to go into the hospital to start the HD chemo/SC transplant process.
6. Came back home to Keller and JPS hospital. Have to get 4 rounds (2 cycles) of GND chemo. GND chemo doesn’t like me at all. I feel like shit for almost 5 days. That is worse than when I was getting 3 nights of chemo for ICE.
7. Got my tonsils taken out. When I was down in Houston at MDA, they did a PET CT scan. This is how they found out the Hodgkin’s was back. On that scan, my tonsils lit up a little. They recommended getting them taken out before starting the SC transplant. So I finally, after fighting them for 27 years, got my tonsils taken out. And holy hell, did it hurt. I couldn’t eat. I could barely drink. I literally lost 10lbs in 5 days. And the ear pain! Holy shit… It would bring me to my knees. All I could do was sit there holding my ears and cry.
8. My liver hates me. It is very angry. After 29 rounds of chemo, it has decided to rebel. After my tonsil surgery, my liver function test results were double and triple what they should have been. I’m freaking out. My doctors are freaking out. Of course, my mom is freaking out. My main doctor is so worried about it that she decides to actually talk to Dr. Yuenes down at MDA (Lymphoma Specialist). They decide to push my chemo back an extra week to give my liver a little time to calm down. They think the combination of surgery, post-op meds, chemo-meds, and chemo was just too damn much for my liver.
9. Luckily, they were right and I got my last 2 rounds of GND chemo. The last being on 10-13-10.
10. Today (since I am writing this at 2 am on Thursday morning) is going to consist of me calling MDA to get the ball rolling as soon as possible. I need to get another PET CT scan. If I am cancer free, I will get the HD chemo/SC transplant treatment. That means I will be in Houston for 2 months. Basically all of the Holidays: Thanksgiving, Christmas, and New Years in the hospital. Fan-Freaking-Tastic!
