Thursday, July 19, 2012

Back to work

I posted bail yesterday and got out of the hospital.  

We still don't know what is going on.  The spots on my fingers seem to be improving, but the fingers are still numb and, when they have feeling, tender.

We have ruled out shingles or any related viruses, Stevens Johnson (thank god), and a bunch of other nasty stuff.  But the infectious disease and myeloma people think its vasculitis, while the rheumatologist (who specializes in vasculitis) doesn't think that's what it is.

We shall wait for the biopsy.

Meanwhile, back to work today!   I will keep you all updated as soon as I know.   Thank you for your concern!

Tuesday, July 17, 2012

Mini update

Today began with somebody wanting to do a punch biopsy on one of the lesions on the back of my right hand, which they have already scraped for pathology three times. I finally put my foot down and said I would be happy to submit but only after I understood why. I have been sitting here for almost two days now with an IV full of antibiotics and antivirals that have done nothing. The lesions have now shown up on my feet as well as my hands. They look like red dots that range from a pinprick to maybe 3mm in diameter. My beloved Dr. PZ came by. He said he concurred with RV and the folks in Arkansas that it was likely vasculitis. In his very calm way (this is, after all, the guy that said "myeloma is a malignancy of the blood" four years ago) he said that vasculitis was an autoimmune disorder that was usually treated with steroids. The pattern of lesions doesn't match viral presentation, evidently. He explained the biopsy would affirm the vasculitis if it was positive. So I submitted. As for the biopsy itself, the lidocaine shot hurt quite a bit for a few seconds, and the biopsy itself was painless. They put a couple of stitches in as with my low platelets and unpredictable healing capabilities it was bleeding pretty profusely. My question, now, is this: what else could it be, and why not treat for vasculitis at this point so I can start getting better? The treatment for vasculitis is steroids (prednisone, which is about one fifth the strength of my not-so-beloved Dex). That much I can handle. If it doesn't respond to steroids, the treatment is Cytoxan, aka Cyclophosphomide, aka the C of the VTD-PACE chemo regimen that I have already had twice. I do not want more Cytoxan. I do not want it, Sam I Am. I do not want it on a train, I do not want I on a plane. I do not want it in a house, I do not want it with a mouse. I do not want it in my arm, I am concerned that I will harm. I rather like this hair of mine, it will not help repair my spine. Etc.

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.

Saturday, July 14, 2012

New Ropathy

Well, this stinks.

Three years into therapy I'd never had more than a tiny tingling in my toes.  This would go away nearly as soon as it came, so I figured I was just lucky.  I had told BB about this and he surmised that some people are physiologically disposed to neuropathy, while others are not.  So when I had a little bit in my feet, I figured it would go away, and all would be well.

Well, I've got it pretty bad in my fingers today and it's terrible.

I had noticed trouble in my right thumb after the surgery to remove the carcinoma on my right index finger.  The doctor thought it was a dressing wrapped too tight that impinged a nerve.  Even then, though, it felt a little numb but not painful.

Yesterday, I banged my thumb against a large binder on my desk.  It hurt last night but even then, I assumed it was just sore from banging it.

Now, both thumbs actively hurt and I can't use a remote control for fear of too much pain.  Both index fingers are the same.  The rest of the hands are okay for the moment, so I know it's the one nerve in each hand that affects both the thumb and forefinger.

This is very's actually quite painful.

We'll see how this goes.

Friday, July 13, 2012

My "Tough love" interview with CureTalk

Hi folks.  Hope you are all well.

Not so much an update, but I did want to let you know that I was recently interviewed by a website called CureTalk, who has published it here.

I will warn you that while some of you may feel I am an unabashed UAMS apologist here, I do try to keep a pretty even keel when discussing therapies and I *never* want anybody with this disease to feel that on this blog I challenge or disapprove of their therapeutic choices.  This disease belongs to each of us, and we each much make decisions on our treatment based on our psychology, our physiology, our age, our outlook, the specifics of our disease, and other considerations.

At any rate, in this interview, I don't pull any punches.  I do believe MM can be cured, and I do believe UAMS has the best chance of doing so.  That still doesn't make it right for everybody, but it did for me.

Have a good weekend!