So things went reasonably well at the City of Hope today, surprisingly enough!
I woke up this morning and popped 20mg of dex, along with Acyclovir (400mg), Tamiflu (75mg), Pantoprazole (the heartburn is acting up) and 10mg of Lipitor. Funny...I remember going on the Lipitor several years ago and lamenting the fact that I would have to be on medication for the rest of my life. How little did I know...
We went to City of Hope and after checking in, we went to the surgery consult. I had the person at check in, the nurse that checked my blood pressure and admitted me to the surgery consult, and the physician's assistant who looked at me ALL say "so, you're here for a Hickman removal?" And I explained to each that I'd had numerous conversations to try to set them straight there, but every time, the administration at CoH screwed it up. I don't have a Hickman, and it's not a removal.
Once we got over that frustrating little barrier, the PA was actually very helpful. He explained that the portacath was placed higher in my chest than they would do, and that it might be sitting on nerve ganglia, and that it's very rare to experience this type of pain. We talked about several options, including keeping it, removing it, or replacing it with a Pik-line (which would be similar to what I had...no thanks, I like taking a shower like a normal person and not having to worry about changing the thing out every couple of months). His ultimate point of view was that it's only been two months post-op, and we should check again in a month and then decide what to do.
From there, we went to get labs drawn. After a little mixup (of course they didn't have down that I had a portacath and sent us to the wrong lab) we went to City of Hope's version of the infusion center. The nurse who helped me was a WONDERFULLY warm person who informed me that her husband's friend was just diagnosed with MM. I get her the history of my research and treatment, and mentioned this blog to her, and offered my perspective and help.
She did a very good job of accessing my port -- which is to say it only hurt a bit more than a regular IV placement, not horribly. She didn't touch the painful line -- I'll have that done next week at GD's office. She said that the placement was deeper than usual. That might have something to do with the pain, which she said was an issue in maybe only one in a hundred portacaths in her experience. She left the IV in, and we went to check in with Dr. SF.
It was now a little after 1PM, and they checked us in, and THEN said that the appointment wasn't until 4:30. So we went to lunch, came back, and killed 45 minutes by reading my charts, including the labwork that had been done earlier that day.
Long story short: the lab numbers all look great. All my counts are normal, although platelets at 160 are on the low end of normal. But Hemoglobin has come roaring back and is now at 14.5, which explains why my energy level has been improving. White counts are normal. Electrolytes are normal. Total protein is normal at 7.5 and Albumin is roaring back to 4.6, so globulin is a very nice 2.9 figure -- considering this number was around 10 at one point, with over 8 from monoclonal protein, it's great to see it in a healthy range.
Then we met with SF, and I am reminded once again of what a wonderful, warm, compassionate, funny and extremely intelligent doctor he is. I told him I feel like I have the "dream team" of physicians on this project. Some highlights:
* He looked at the maintenance instructions from BB and, smiling, shook his head. "Typical BB." Was his response. It's powerful stuff, definitely. But he is on board for it.
* He agrees that reimmunization isn't necessary, although at some point we'll run a test to confirm that I have residual antibodies present in my blood for all my childhood diseases. He suspects that I have rebuilt my immunity to Varicella (Shingles) and that I hopefully will not have another episode of those, which is a good thing. He is not as sold on the prophylactic value of daily Tamiflu -- in fact he was quite skeptical -- but I'm sticking with the program as it helped me get rid of a burgeoning cold last week. He said he thought it would be okay for me to get a dead flu vaccine -- we'll see about that. I'll probably wait a couple of years until the immune system is working fine again. He wasn't quite as sure about travelling to India or other exotic locales where the "herd immunity" is fundamentally different from the immunity of those around me in the US or similarly innoculated societies.
* The heartburn which I now have is a result of the Dex, and that explains why Pantoprazole is needed. Hopefully I can discontinue it at some distant time in the future.
* The enlarged prostate may or may not be a result of the Melphalan but in any case it has no connection to increased likelihood of prostate cancer. I can have PSAs run but they are mostly useful to set as a baseline.
* The portacath should not hurt like this and it should come out. He recommended putting one on the other side. He said that if I was even CONTEMPLATING taking something like Dilaudid before having it accessed, it was crazy to keep it in, and felt that two months post-op was MORE than enough time for the discomfort to have stopped. I'm going to see how bad the access is next Tuesday before I make a decision on that one.
After our consult, I got my Velcade and we went home without further event. I gulped down my first of about 800 Revlimid pills tonight. Yum!
And soon, it's off to sleep, right after I have a baby aspirin to ward off any potential bloodclots from the Rev/Dex combo. I will dutifully report any side effects from maintenance, and will certainly be back as next Tuesday draws near, if nothing merits an update before then.
But soon, however, I will have a poll for all of you, or a questionnaire at least. Stay tuned for that gripping development! :)
Best to you and yours,
Tuesday, September 29, 2009
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