Monday, July 16, 2012

"Fingles"...or "The Myeloma Dream Team"...or "Another Triumph for Self-Diagnosis"...or simply "OUCH"

Well, where to begin. I guess the place to begin with wasn't peripheral neuropathy. I suppose I should feel good about that...I was already concerned that it was very painful and wasn't going away and would impact my ability to play golf, guitar, piano...or even type. My pecking away right now is pretty uncomfortable, actually. But as it happens, I am typing this from a hospital bed at Cedars Sinai. I went golfing Sunday morning and it was exceedingly difficult to play. While I normally welcome an excuse, it really hurt like hell. I had to pop several Vicodin to make it through the round, which I don't like to do either. But it was after the round of golf that the trouble began in earnest. We went to a birthday party for the adorable little 4 year old daughter of our dear friends and Jill noticed discoloration on my fingers. A little bell rang in my head. You see, every month that goes by, I get a new bottle of Revlimid and I have to answer a new questionnaire about the drug and its side effects. And one of these side effects is called Stevens Johnson Syndrome, which is rare but potentially life threatening and starts with a discoloration or rash on the skin. A quick google search lent just enough credibility to this (the photos looked worse but not a LOT worse than my fingers) so we sped off to the ER. To make a long story short, I have been here 24 hours now, they have pumped me full of antibiotics and antivirals. They have taken blood multiple times, urine, and goop from one of the blisters on my fingers (cue Ringo Starr). They have come into the room every ten minutes, just about, making sleep difficult but I appreciate their attentiveness. I have had an EKG and a chest x-ray, I am scheduled for an echocardiogram, and they keep threatening a biopsy of some kind or another. But nobody will tell me what I have or don't. They won't even rule out Stevens Johnson yet. I have been visited by three doctors on staff here, plus RZ who is an infectious disease specialist and the colleague of doctor PZ, who diagnosed me. I like RZ. She knows her stuff. And when pressed, she thinks it is unlikely that it is Stevens Johnson -- that is at least SOMETHING to hang my hat on. But it is not satisfactory. I would like to know what the heck is going on and when it takes 12 hours to get a red blood count out of these folks, the blood cultures are going to take too long. Meanwhile I have no idea how serious this is... I told the folks I wanted a Myeloma specialist to look, since they might have experience seeing this as a side effect of Revlimid. I suggested RV, who is on staff here and is excellent...even though i have never seen him and having him come by to check out a skin condition that is a possible side effect of treatment is overkill, like having Wolfgang Puck make a sandwich for you. But i think he is the best on staff here, so why not ask, right? The other thing i did was send a picture to the awesome folks from Arkansas. Thirty minutes later, the Arkansas opinion is that it is vasculitis. As we were looking that up, RV came by and he said that he had never seen this type of reaction, but it could be vasculitis. That sounds like a convergence of a diagnosis. If true, it means all the antivirals and antibiotics aren't gonna to squat. RV explained vasculitis is when the immune system identifies one's own veins as invaders and tries to destroy them. Doesn't sound like fun. DOES sound like something Revlimid can do. DOES sound like something my poor tweaked immune system could do. The treatment is steroids (yuck) and Cytoxan (double yuck). I guess the next step is to confirm this is what's going clue how to do that yet, although I have asked that RZ speak with one of the folks in Arkansas. At some point, somebody will come back in here and I will ensure they are continuing to pursue this line of thinking. I felt so good three days ago...this really sucks! And yet, I am always mindful of how fortunate I am. For example, today I had two of the top ten MM doctors in the country weighing in on this. My primary care physician is one of the leaders in infectious disease (every doctor is still amazed that he is my PCP). And I was educated at UAMS to be an empowered and informed patient, asking questions and offering opinions. I am thankful for all of that. And thankful for Jill, who slept in a cot by my side last night.'s to caregivers and the medical community! And to being thankful for what we have. And for an end, soon I hope, to this hospital stay. More news as events merit.