January 18th - The compromise

Dragged myself down for my every three week visit to NYC last Tuesday and explained to my doctors that I am very concerned about the night sweats. Well docs wouldn't agree to do a PET scan, but after lots of begging and pleading (just short of a temper tantrum), and threatening to quit the study, I got them to agree to another CT scan at least.

Left the doctor's office and went 3 blocks away to the breast cancer building to have the scan, then back over to the doctor's office for the results. They had the results as soon as I walked in the door. Everything looked good. No changes from the last one. It's a good thing but, this doesn't satisfy me completely as I really believe a PET scan would be more appropriate. Argued with the doctors a bit more (I'm a really aggressive patient nowadays). Didn't get any where with them so it was off to the chemo suite.

I love how they call it that, the chemo "suite". Makes it sound like a luxurious, relaxing place. When in reality, you're stuck in a hot little cubicle, with anticipatory nausea, the nurse poking you like a pin cushion for your pre-chemo labs. Then they stick the IV in and give you a whole bag of poison. After the poison's all in, you get to listen to the loud BEEP BEEP from the pump for 5 minutes until the nurse comes back. Time to leave (YAY), but you are so nauesous and weak from the whole thing you can barely walk yourself out. How "suite" is that!

Sorry about the rant, I feel better now. At least mentally, excuse me while I go puke.

January 5th - Happy New Year!

Wow, it's been so long I honestly forgot the URL to get here. Sorry...

Haven't had much to update until now. Still going every three weeks for trial preventative chemo. Because the neuropathy got so bad, they have reduced my dose by 25%. I know that I have about 4 or 5 left so, IF I keep going, I should be done by April of this year. I say "If" because I threaten to quit all the time and one of these days I may actually do it.

Also, this chemo I am on, was approved by the FDA for very limited use in August. Not approved for use in the way it's being used on me, so I still need to stay in the trial. The chemo is now known as Aceridis. Since it's approval, I have received more info about the drug. Last month, I actually got PAID to do a market research survey for the company that produces the chemo. It proved to be worth more then just a check. I was given so much more information about the drug then my doctor ever shared with me. This survey also gave me some piece of mind, because I learned going through it that, my side effects aren't "rare" or "unusual", as my doctor told me. Almost all of my side effects were listed on slides shown to me as part of the survey. In the past, my doctor has acted like my fever made me an enigma and the other side effects were either just in my head, or the result of something else.

Finally, I do have one concern at the moment. I've started to have night sweats again. The night sweats were the biggest (and one of the only) symptom of my Hodgkins. I am really afraid that it is back. My last scan was in early November and was clean, but it was only a CT scan, which doesn't show everything. My next PET scan isn't until March, but I am trying desperately to convince my Dr to move it up. He is reluctant to do so, and doesn't really give me an answer as to why. I have a suspicion that he is more concerned with the clinical trial, then what might be in my best interest.