Friday, January 30, 2009

Day 5...a major hurdle is cleared

Okay. So after the utter horror of yesterday, I had a splendid dinner at a restaurant called Ashley's. It was about half the price of a similarly-good restaurant in Los Angeles so we availed ourselves of a little southern hospitality. The night was not pleasant though...after a week of dealing with everything, including being told we had the high risk chromosome 1, then learning it wasn't that meaningful, then learning that the second clone that I had was very troublesome and could be leukemia, 100 tests and then culminating in the deep tumor marrow biopsy without sedation or any way to anesthesize the bone...we broke down. It's to be expected...and frankly were we not so strong we would not have lasted as long as we did before the stress overwhelmed us.

Anyhow, we got up and prepared for the last of the tests: a pulmonary test, an EKG and an echocardiogram (an ultrasound of the heart) all intended to make sure I was healthy enough for the Total Therapy protocol that BB pushes. I passed all these. It was remarkable to take a test that didn't indicate I was sick. It felt nice to be normal for a change.

All the while, we waited for two things. First, our meeting with BB at 3PM, to discuss whether I was high-risk or low-risk (more on this in a moment). Second, I know BB is a motorcycle enthusiast so I had ordered him a very nice hardbound coffee table book on the history of Ducati, which is the Italian high-end bike that he currently rides. This should have been delivered to my hotel on Wednesday AM but because of ice-storms in the area delivery was delayed.

The meeting with BB was delayed because he was running behind. His office was kind enough to call and say he was running two hours behind, but usually gets caught up in the afternoon, so we should show up at 4PM rather than 3PM. I pressed on this, and she then admitted 4:15 was probably a better time.

We grabbed a bite and bided our time. All the while the pressure was mounting. If I was low-risk, I would be a good candidate for BB's therapy and stood an excellent chance of prolonged remission and a decent chance of being cured completely. If I was high-risk, my outlook according to BB is "dismal" (he didn't say this to me, but it's how he describes "high risk" patients in his presentations on myeloma). And all I knew is that while I wasn't automatically high risk because of chromosome 1 problems (contrary to what Typhoid Bonnie, his assistant, had said a couple of weeks ago), it was still troubling. As was the second clone issue that could mean I'd be battling myeloblastic displasia -- a precursor to leukemia.

UPS was late with the delivery, but at 4PM I picked up the book I'd ordered for BB. We drove to the hospital and I inscribed it: "Dear Dr. B -- no pressure at all, but I fully expect you to cure me completely. Warm regards, Nick van Dyk." My heart was racing.

It just got worse as we waited. They called us back. According to the vitals, my heart-rate was 133 bpm (it was 77 bpm during my EKG earlier in the day) and my blood pressure was 149 over 95. Jill and I were beside ourselves with stress. When the nurse had called earlier to tell us BB was running late, I asked her if she could tell me if I was low-risk and she said she wasn't privy to that information.

We waited. I tried to console Jill by saying that high-risk just meant that this one particular protocol wasn't the right one for me. SJ, meanwhile, had refused my request for a phone consult, but we kept our appointment on 2/23. If I was low-risk, I wouldn't need to speak with SJ, and if I was high-risk, I would.

We discussed Dr. PZ, our primary care physician who was good enough to find my MM so early (so many people this week said he was such a good doctor to have found it). When Jill and I got married, we had to get HIV tests before we could get our marriage license. When Jill was in his office, PZ opened the door and before the door was even all the way open he said "it's negative." That's one of the things we love about him.

We wondered if BB would be the same way. The tension was almost unbearable.

Then, his resident, Dr. CS (for Caleb Sumthin-or-other) came in and said "are you two okay?" And I said "we're waiting to find out if we are low risk." And he said "well you are!!!!"

I can't tell you the relief we felt. Jill started sobbing and almost fell to the floor. I held her and let the realization that the odds are in my favor that I'll be in sustained remission wash over us.

It was a lovely moment.

But still, no superpowers.

More to come, I must sleep. I do want, though, to give a special "shout out" to my friends and family, especially those that have prayed or asked others to pray for me. I don't doubt that it has an effect. I also want to thank my friends who are atheists or agnostic, that are thinking positive thoughts -- I don't doubt that that, too has an effect. Lastly, I'd like to thank those people that have posted comments and emailed, who I've never met but who found this blog and cared enough to reach out. Each of you is very special to me, and your words of encouragement and support also make a difference.

I have a great team. And that beats superpowers any day of the week.

Be well. As I said, more to come tomorrow.

I'm very sorry about the last post...

Because I was so was a sloppy post.

I left out reason #2A that I was very proud of and forgot to include it in the list.