Monday, January 26, 2009

Day one at BB's clinic...

We arrived last night, and had dinner with BB's very sweet but alarmist assistant, who was very kind to us and seemed to agree with me that I must be low-risk despite her alarmism in the previous email.

Today, we had a long day. Patient intake at 8:30 or so, followed by signing up for clinical trials: it involved committing to donating marrow to the database, which was no problem, and more blood...but also signing up to donate extra stem cells, which I object to if I don't have enough for at least three transplants...and also agreeing to allow a needle aspiration of any tumors in my ribs. Now I know I've complained about the ribs on here...but believe me these are painful to even LOOK AT much less stab with a needle in the heart of a lesion. Nonetheless, if I didn't play ball, I wouldn't get the gene expression profile that will tell me low-risk v. high-risk so I'd have come all this way for nothing. Fine. I signed up, knowing full well that if they ask me to do something down the road that I don't want, I will say no.

Then more waiting, following by an interview with the insurance person who, frankly, seemed a few cards short of a full intellectual deck and was probably fairly responsible for screwing up the insurance (I had a momentary bout of compunction for my angry voicemails). Nonetheless, she re-iterated that CIGNA had known about the situation since the 9th of this month, and that she had already submitted everything required for pre-approvals. This meeting was followed by more waiting, followed by meeting with the coordinator there who had me fill out more forms. Followed by more waiting. Followed by an INCOMPREHENSIBLE amount of bloodwork...I counted 25 vials of blood and I think I am probably underestimating.

Then we met with one of the nurses who took my medical history. Pretty uneventful. I was tempted, though, to start answering "yes" to everything just to see how long it would take them to forcibly admit me to the hospital. "Do you have chills?" "Yes, all the time." "Do you have hot flashes?" "I'm sweating profusely right now." etc.

This was followed by lunch. We drove around and settled on a simple bar and grill. I emailed Disney to find out about insurance, and then Jennifer at CIGNA called. She was, to my surprise, very pleasant and understanding and apologetic. Now mind you, she got the POLITE version of the angry voicemail last week, but still. Anyhow, turns out the problem was that the procedures were sent in as transplant work rather than diagnostics. I don't see why it would matter but according to CIGNA that's why the Medical Director there disallowed them. She said she had called Dolores at BB's to try to straighten it out, and that she wasn't able to get through to her, and was waiting to hear back. I said I would speak with Dolores. I also emailed Elizabeth at PinnacleCare to bring her up-to-date.

Then I went to get X-rays. I did so with a great deal of interest (and pain in my arm from where the vein was now tingling since no blood was left in it). I wanted to see how the bones were progressing and I was sure that I would see multiple lesions on my ribs or potentially my back given the pain that I am in these days. After all the X-rays were done, I asked the tech to look at them with me. Now, neither the tech nor I are doctors, but I've looked at enough examples of lesions on bones and I swear there's nothing there. I'm sure there is stuff going on in the marrow that's not kosher, but nothing has turned up on the X-rays yet.

At this point, I was feeling pretty good. I'm in the right place, these people know what they are doing, and I'm on top of it. The disease is advancing but there's no bone involvement and I'm way ahead of the game. I'm going to start treatment earlier than most and will kill what ails me. Great! Tomorrow I have to get a bone marrow biopsy done, so again I insisted on being given waking sleep drugs, and although they tried to talk me out of it (because it's a hassle for them) I insisted. So I had to call the pre-op counseling line and was on hold for 35 minutes when they finally came on the line and gave me six seconds of instructions ("don't eat after midnight"). Thanks. Sure am glad I waited 35 minutes for that. And in any case, what they are giving me is so mild the prohibition doesn't even stand. But whatever. All I know is they're gonna tap my hips dry of bone marrow and I don't want to feel anything.

We then went to new patient orientation. I tried to get out of it given the depth of my research but they were pretty insistent. So I went. I am younger, healthier, and better researched than anybody else in the room. I'm feeling good at this point. The insurance person calls me while I'm in there, and I tell her I'll talk with her after I get out (since they were making me go there). She came down to address the group, and I stepped out in the hallway to speak with her.

Long story short, I told her Jennifer had called and was waiting to hear. The insurance woman is a dolt. Sweet, but a dolt. So hopefully that will work itself out.

As I'm talking with her, the intake nurse calls. She's got that "I'm in a state of urgency" aspect to her voice. She tells me my protein is 12.4!!! I tell her "how can that be, the M-spike was only 6.4 a month ago." She tells me things do not look good and they have to take more blood, and my uric acid is very elevated and I immediately have to go on meds for it, and they are going to have to take even more blood in a couple of days.

What can I do but agree? Well, the other thing I can do is PANIC because my flippin' M-proteins have DOUBLED in the last month. Again, I'm really worried here. She comes down with the labs, and sends us up to get more blood drawn immediately. Which I do. In the other arm since there's no blood in my left arm at this point.

While waiting for the prick (needle!), I'm reading my labs. AND THIS PANICKY WOMAN COMPLETELY MISREPRESENTED STUFF. Yes, my TOTAL protein is at 12.4...NOT the M-spike. My total protein a month ago was 12.2. IT'S HARDLY BUDGED. My Albumin is down slightly, and that's not great, but the other markers are no big deal.

So now, I'm pissed off again at the alarmist nature of what's going on. We leave the lab and I'm ready to head back upstairs to tell the nurse. We see her exiting the elevator and I tell her that she led me to believe my M-spike had doubled when in fact it's probably stable. She more or less said "oh." WTF??????

I got my prescription filled but I wasn't going to just start taking this medicine. I emailed SF from City of Hope and told him the situation and asked him what to do. He called me and said it was okay to take the medicine for the uric acid because I'd need to go on it eventually, but we agreed that they were very alarmist here.

Just then, I got an email from the same nurse we had dinner with, who scared the crap outta me two weeks ago with her "your kidneys are failing!" email. She read me the same litany of panicky stuff..."THESE MARKERS CANNOT BE IGNORED!! YOUR PROTEIN IS ALMOST AT 13!!!! WE WILL HAVE TO DRAW MORE BLOOD TOMORROW AND REPEAT THESE TESTS."

At this point, I'd had enough. I thanked her for her concern, and told her no more blood would be drawn. I explained I understand the seriousness, but nobody else agrees with the sense of alarm and it must stop. I pointed out the total protein had barely budged in a month, and I reminded her of her panic over my calcium levels which have been stable since diagnosis and remain in the normal range. I told her to chill out, to do the PET and MRI, and that there would be no more major bloodwork done.

I confirmed with both SF and Elizabeth that my message was right on target and not over-reaching or rude. Haven't heard back from the panicky nurse but honestly, I've had enough of this crap. Yes, I'm sick. I GET IT. Yes, I need treatment soon. I WILL GET IT. STOP GIVING ME THESE HEART ATTACK PANIC EMAILS!!!!!

Well...that's about it for this evening. My arms are killing me from the two different blood draws, especially my left arm which feels like it's ready to collapse in on itself. I will write more tomorrow, when I am in my radioactive post-PET scan state.


  1. Wow. The "Alarmists" are maddening! So unnecessary.
    I continue to think of you all incessantly and am sending you the best energy and good thoughts possible. If ANYONE can kick this - it's you.
    Good luck tomorrow!

  2. I think you need to bring some duct tape with you on these appointments and immediately gag everyone there who does not have an MD after their name. What is with these people?!!! When I was reading that you had dinner with BB's assistant, I thought, "she'll probably have him diagnosed with elephantitis
    before the entree gets there." As if being poked and prodded and scanned wasn't stressful enough. JEEZ!!!

  3. Oh. my. gosh. Those folks need to chillax. And to confuse M-spike with total protein? Oy.

    Phil has enjoyed your correspondence; it will be nice to stay in touch as we all move along in this little journey.

    Keep kicking ass, dude.