Tuesday, May 19, 2009

48 hours, from the ridiculous to the sublime to the grueling...

Yesterday started off very early. I was a little anxious about coming back here and diving back into things, to say nothing of bidding farewell to my kids for another month, so I didn't sleep very well on Sunday night. Bleary eyed, we headed to the airport Monday morning for a 6:35 flight.

I wonder how that flight was...because when we got to the front of the Continental line, they told us that the confirmation numbers we had were cancelled because the ticketing hadn't been finalized. Whether this is the fault of Continental or my assistant who booked the tickets, it caused quite a bit of chaos that morning. Everything was sold out. We had no way to get to Little Rock on Continental, American, or United. We could get there through Atlanta but it would mean arrive around midnight which wasn't particularly desirable seeing as we had to get up a 5 for my PET scan.

Eventually, we got tickets on Southwest...through El Paso and Dallas before arriving at Little Rock at around 7PM. It could have been worse. But still, somewhere there are 200,000 frequent flier miles that I used for two first class tickets on Continental and I would like to have those reinstated in my Amex mileage bank account, please. My assistant will be involved in a steel-cage death match with Continental ticketing upon her return from vacation later this week.

We managed this okay. I'm still nursing my cold so whenever somebody looked like they were going to take the open seat between Jill and me, I simply took out a tissue and started coughing into it. This worked like a charm on the first leg. On the second leg, it was packed so there was no choice. Some poor woman got stuck in the same row as sneezy the angry cancer dwarf. Jill kindly switched to the middle so at least she had a barrier.

We flopped down in the condo here and settled in for the next tour of duty. I'd run out of heparin by this time (we've got plenty at home) but I put some saline into my lines to keep them ready for action. I have limited time before I won't be able to go out in the evenings due to neutropenia and/or exhaustion, so we wanted to try to eat downstairs but I didn't really feel that great because of the cold, so Jill went down to pick up some seared tuna. Had to go heavy on protein and no carbs tonight as the PET scan demands that. The PET scan works, it seems, by starving the body's cells of sugar, and then giving them a bunch of sugar right away in the form of that hideous glow-in-the-dark Tang-type stuff that they foist on you, accompanying by a radioactive shot which, as I compalined once more to the technician, failed STILL to provide me with any of the superpowers that I've been led to believe I should have acquired by now. Shame on you, Stan Lee. Shame on you! Anyhow, the sugar-starved cells gobble up the orange goop, and there are no more voracious consumers of said goop than cancer cells. The PET scan then identifies these "hot spots" and can determine where tumors are forming, and how fast they are progressing. Aretty fascinating diagnostic tool, really!

Jill returned from her seared tuna run and said she saw BB and his wife downstairs. I suggested we go down and say hello, as Jill had only waved to BB's wife from afar. We went down and wound up having dinner and chatting with them for two hours. I learned more great stories (professional and personal ones about BB's crazy past, like trips to Rio in his bachelorhood, etc.) and we laughed like old friends, the four of us. BB and his wife Cathy are very warm people. I spoke directly to BB about articles I'd read...how achieving CR early implies faster regrowth of the tumors, and that Mayo was using this to argue for maintenance therapy, but I thought that had already been proven...long story short, out of that conversation I am more convinced than ever that BB is the right guy for me for this disease. I believe that if I continue at this pace, I will be cured. Full stop. I told BB I had full confidence in him and that it is very rare for me to relinquish control over something like this as I am a type A personality and a bit anal retentive in my work, but that I believed so strongly in this protocol and in him personally that I was able to let go totally. He said "thank you, and you should know that places -- appropriate so -- an even greater burden on me to deliver a cure. I have every expectation that I will."

I have to say, I love this doctor. I feel like he and his wife have taken quite a liking to Jill and me. As I said at the outset, I wanted to seek out the leader in the field, and ensure that he was fully invested in treating me. I believe he is more than fully vested -- I believe he treats all his patients with focus and care, but I also believe we are becoming friends. And if I know him as well as I think I do, he will be personally offended if the cancer doesn't go away exactly as he and his treatment demands and predicts.

Even though there was a nice piece of tuna sitting upstairs, we stayed and had dinner where I ordered another piece of tuna. BB poured me some of his bottle of white wine. I took half a sip and said "oh gosh, I have a PET scan in the morning, I can't drink this, can I?" He smiled and said "it's perfectly okay" and poured more wine in my glass. He did approve of my tuna steak dinner, since one need to load up on protein before the PET as noted above.

This morning, the PET scan was uneventful, albeit VERY early. I'd taken some cold and cough medicine, and popped an Ativan to make sure I could sleep through 45 minutes of sheer boredom. As it was, I slept through half of it, which was fine. I've gotten so used to this test it's really nothing. The Ativan was more helpful in relaxing me so that I didn't sneeze or cough than it was in anything else.

We left there, and got an EKG. That was simple. My tachycardia wasn't acting up as much -- it was showing around 85 bpm, which is much better. Bearing in mind that between the antihistimie on the one hand and the Ativan on the other, there was a battle royale going on for the frequency of my heartbeat. I've decided not to worry too much about it. Soon enough I'll be getting 2X a day checks for heartrate and I won't be on either of those meds when that happens.

We went to the clinic and had some blood drawn -- from my arm no less -- but the guy who did it there was quick, relatively painless, and very good at his job. Then they sent us off for an Echocardiogram. Were we were told there was a two hour wait. So we grabbed a quick bite of lunch, went to the grocery store for a few essentials, and then back to the hospital for the Echo, which was fine.

Then it was off to the MRI. After filling in paperwork, we waited for perhaps 20 minutes before my name was called. The test was about 90 minutes long. Again, I popped an Ativan. Turns out the sleep inducing impact of this drug is somewhat reduced when there is a 110db clanging sound next to your head, unabated for 5 minutes at a time. Nonetheless, it probably kept me from going insane in the tube for 90 minutes. When they focused on my pelvis and legs, I was coughing but kept my lower body still. When they focused on my back, chest, shoulders and head, I had restless leg syndrome (unofficial) but kept my upper body still. I think it worked. It will be interesting to see if the MRI reveals anything about my back pain.

It was a long day, but not a painful one. I didn't have time to call ahead to the outpatient surgery clinic to tell them I am getting a bone marrow biopsy but NOT a gene array tomorrow -- I have a 9AM appointment with one of BB's underlings at which point I will emphasize that, and then I'll emphasize it again in the OR (by refusing to sign the consent form as needed). I'm sure I'll have a story or two to tell about that experience tomorrow.

Now it's off to bed...very early for us...I'll see if I can stay awake long enough to catch the second half of the Lakers playoff!

1 comment:

  1. Wow, what a whirlwind!
    I'm glad you made it, albeit on Southwest... ugh.
    You are so, so fortunate to have such an amazing relationship with your doctor! It all sounds so great, Nick. Thinking of you, incessantly! Speedy recovery!! xo, A, F & S (sammie)