Tuesday, January 26, 2010

Return to Arkansas, part 1...or I hope God has a good sense of humor!

Dateline: Little Rock.

Jill and I are in the Capitol Hotel, where we arrived on Sunday evening. It's about a year ago to the day that we came out here for testing and ultimately determined that this is where I would make my stand against Myeloma. Returning now, there's a nice almost nostalgic feeling to some of it. A few of the nurses recognize me, but many take a moment as I've got hair now. I've also put on weight, as too many have pointed out! They mean this as a complement, but I'm wary of the impact the dex continues to have on me. Nonetheless, considering how bad I looked when I had lost 40 pounds in the hospital, I'm taking their comments in the spirit they are intended: a return to health.

Yesterday they drew blood. I had arranged to have them use the portacath and so rather than go to the MIRT (the Myeloma clinic which is manned by people other than RNs, and who therefore cannot access the portacath) I scheduled the blood draw from the infusion center, which IS manned by RNs. For those who may not know, post-chemo it's hard to find a vein, and a "peripheral stick" (needle in the arm) is more of a nuisance than just accessing the port.

However, the best laid plans of mice and men (I just mistyped "best laid men of...") often go astray. They wanted to run a "clotting factor" test which would be effected by the heparin in the central line, so they had to go for the arm anyway. The first RN looked at my arm for a few minutes and couldn't find a vein. They called in support. Around this time I figured I would just demand they use the central line, which is what I found myself doing post transplant when I was just sick to death of needles. However, the support (a nurse named David) was a pro, found a vein, stuck it, and that was that.

We bumped into a new patient (BB, who I will call WB so as not to confuse him with Il Doctore) and his wife with whom I had spoken on the phone a few weeks ago. I have asked BJ, BB's faithful right-hand, to call on me as a resource to speak with potential patients and WB was one person that she thought could benefit from a conversation. I was happy to speak with him and happy to see him here, having gone through the same calculus that I did about a year ago before deciding Arkansas was the right place for me. I see a lot of me in him -- he's going through the same early-day frustrations (go from point A to point B to point C, not everybody is coordinated, lots of waiting, etc.) that I did. I marvel at how much patience this entire process has taught me!

On this note, I then met with a research nurse. Here's where things get a little confusing. I am on Velcade weekly as part of maintenance. Upon scheduling this return trip, I wanted to make sure that I would be administered Velcade on the Tuesday (today, as it happens). I had asked PinnacleCare to follow up on this. My rep at PinnacleCare spoke with a woman in scheduling here, who said that this was a planned week off from Velcade for me. That was news to me, but welcome news insofar as Velcade is responsible for that weird red blood cell morphology and my depressed white count and a little breather wouldn't be a bad idea. So long as it is on protocol -- I don't want to win a meaningless battle (red blood cell weirdness) only to lose the war (cancer returns).

The research nurse was surprised. Said there is no time off Velcade ever. Said the protocol requires weekly administration and the only time people are ever taken off it is if there is toxicity. Said she had no idea why anybody would tell me otherwise.

Okay, says I. No problem. I'm getting the portacath access tomorrow for the bone marrow. Just push some Velcade through it and we're done. Right?

Wrong. There could be contra-indications, evidently, between the conscious sedation and the Velcade, and they can't be given on the same day. I explained I'm not getting general anaesthesia -- it's a little Versed and a squirt of Propofol to keep me knocked out for ten minutes. She wasn't budging. I asked her to check. Jill pointed out that it is strange that, knowing this, they would have scheduled the bone marrow for a Tuesday. The nurse had nothing to say on that point.


So we left, with the understanding that this nurse would check with BB and if it was okay, I would get my Velcade tomorrow, and if not, I would get it Wednesday. Evidently there is a +/- 1 day flexibility on this administration, which is good to know. Although I still need to get NEXT week's dose (Feb 2nd) done at Sloan Kettering in New York while there on business, which will pose a new logistical challenge and one that I am actually a little excited to undertake. One more little victory to be pulled off.

Later in the day on this point, a DIFFERENT nurse called and said there would be no Velcade because it was "too confusing" given the conscious sedation. WHAT?? I was dead asleep when they called or I'd have been more on top of it. This person said that the protocol allowed for me to skip a week. Also news.

This is the type of disorganization that might set BB off. I am confident that when I meet with him, we'll get to the bottom of it, and that worst case I'll get Velcade on Wednesday instead of today if I need it.

After the nurse consult, it was off for more tests. EKG. MRI. Bone densitometry. The last of these was the most interesting. Before talking about it, I will note that the MRI was a little briefer this time (only about an hour) and I popped an Ativan and slept through some of it. Good thing I am not claustrophobic as the last bit of it literally had my elbows and knees touching the inside of the machine, and the mask they fit over my face (think football helmet grille) was brushing my nose on one side. Tight quarters!

Anyhow, the bone densitometry was eye-opening. I saw the before and after of my vertebrae and confirmed that I have lost an inch of height. Most of this is from two vertebrae, each of which has lost about half an inch. I see the nice, square, ice-cube shaped lumbar vertebrae on the scan from a year ago, about one-and-a-half inches square, with a tiny little chip out of the upper right corner. Then there's the "after" shot where the thing is about 3/4" inch on one side tapering to about half an inch on the other and compressed all to hell.

It's a bummer. Particularly when the technician said "I can see where it was starting to go last time." You mean if they spoke better around here, they could have given me something that might have stopped it?

This really bums me out. Losing 10% of my vertebral height might seem like nothing but when I'm 5'8 to begin with, it makes a difference, and as I've remarked before all the guts are still there...they just push out more. This is mostly vanity, and my life has (hopefully) been saved so it's hard to complain, but it is discouraging to think that this could have been prevented had I taken more immediate action up-front. I'd have needed to begin treatment probably a month earlier than I did. Recall that my real sharp back pain, which was this vertebrae starting to go, happened only about a month after diagnosis, so I'm not sure how much could really have been done, but again, it's discouraging to think there wasn't enough talking going on here. I am reminded by Jill that there was a missing MRI that should have been done, as well, that would have caught this.

So let it not be said that this place is absolutely perfect.

However, it is where the irrepressible BB is saving lives, with increasing frequency. And I can't say enough about him or his people here.

I got a fair amount of work done in the afternoon and we got a bite to eat, after which we went by our old condo to say hello to the concierge. We noticed a BMW motorcycle parked in front of the restaurant there. BB's Ducati, I was reminded by Jill, doesn't start as well in the cold and it is quite cold here right now! When the concierge affirmed BB was there, we went over to say hi. He was having drinks with a colleague (another doctor in the clinic whom I had met with once) and did not see us come in.

I couldn't resist, and here's where I hope God has a good sense of humor.

Long-time readers may remember one doctor here who wears his religion and politics on his sleeve, and who allowed them to unprofessionally cross over into his clinical role with me. As BB is a scientific atheist, he has told me that he playfully mocks this other doctor (who I will call Dr. R in this entry). He has also pointed out that Dr. R is a very good man who has gone to great lengths to be helpful to BB personally, and I am sure this is the case. So this will be the last time he is the butt of a joke from my end of things (unless he crosses the line again).

Aware that BB had not seen us enter, I wrote a note for the waiter to bring to BB's table. It said "Dr. R is on the phone. He says he has seen Jesus in a potato chip. Will you take the call?"

We watched BB unfold the note and start laughing, then we went over and said hello. He's aware of the blog, which means some folks in the clinic must be reading: I LOVE YOU PEOPLE!! THANK YOU!!!!

Today there is more testing, and I'll get to the bottom of the Velcade thing sooner or later. And of course there's the hopeful news from my MRI (fewer / no lesions?) and bone marrow (no disease), etc. which I will dutifully report!