Thursday, September 17, 2009

The Big "Catch Up" Blog

Okay, at long last back in Los Angeles and with enough energy to type. Catch-up time!

We arrived in Little Rock on Sunday evening. It was a strange homecoming – I suppose I’ve become reacquainted with home, having been in Los Angeles for several weeks now, and the culture shock was palpable. No restaurants open on Sunday night, the “fancy hotel” in town not having movies on demand or a minibar or room service after 9PM, etc.

Monday was very busy indeed. We saw our friends Jan and Bruce who came to Little Rock as we were finishing up back in July, and I saw that they knew many new faces whom I did not – the torch is therefore passed to a new generation of MM warriors. :) I had seven or eight tubes drawn out of my arm (I’m actually more or less relieved at this point that accessing the portacath is done sparingly). Then off to meet with the nurse.

I've become downright insistent on certain aspects of managing my care. I opted out of gene arrays (deep bone marrows) and since we weren't going to have the results of the PET scan back, I refused the fine needle aspirations. They wouldn't even know what they were looking for, or where they were looking for it! And since the last FNA came back with no abnormal cells, and I *subsequently* achieved complete remission (according to GD here in Los Angeles), I figured they didn't really need it.

I also opted out of contrast in the MRI, both because they only use it for MRIs of the brain which had been normal (my wife might debate the accuracy of these tests) since day one, and because the damn portacath makes me skittish. Nonetheless, I spent a good two hours in the ol' tube, with ear-shattering banging going on. Good thing I'm not claustrophobic, but GOD is it boring. I've learned that when one is sick, one steels oneself for all this stuff. With no disease, the MRI seemed more of a chore. I also had to re-read the loooooong list of Velcade side effects again, and it has a distinctly different flavor to somebody in remission.

Before remission: "Does this list include dying of cancer? No? Okay, I'll take it."

After remission: "Uhhh....I REALLY don't want any of this stuff to happen to me."

Suffice to say, Velcade is a pretty nasty drug, but I don't think it's as nasty as the stuff I've been on, so ahead we go.

After the MRI, I had a PET scan, and this time they DID need to access the port for the isotope infusion. I told them I wanted them to use the portacath, so they called a nurse who was skilled in accessing it. Note to self: next time, tell them ahead of time. Anyhow, she accessed it alright...and it HURT. It wasn't pure agony because she accessed the less painful of the two, but it hurt a hell of a lot worse than a stick in the arm and I was once again left wondering why I have this damn thing.

On that topic, SF at City of Hope has to be one of the nicest, most caring, most conscientious and wonderful doctors in the world. But the staff at City of Hope leaves a little something to be desired. I had told his office that I wanted a consult to discuss potentially removing the portacath and replacing it with a single-lumen, or maybe removing it altogether. And they scheduled me (without checking my availability) for surgery this past Wednesday -- which obviously didn't work out so well since I was in Arkansas. I found out about this on Monday and was able to correct it, but the sheer number of clerical errors there is staggering. I thought back to the infamous "blood pressure" conversations during my initial consult back there last November / seems they haven't improved.

Monday night I had a nice dinner with Jill, and then Tuesday I showed up for the bone marrow. The PET folks left the IV in the portacath (once it was in, it actually was not uncomfortable like an arm IV was just the initial placement that hurt) so that was a pretty quick procedure. And then Tuesday night we met up with our friends Jan, Bruce and Lori for a wonderful dinner...followed by far too many drinks with BJ, BB's long-time assistant. We closed the restaurant down and I was feeling it until about 6PM the next day!!!

On Wednesday, we met with BB. He confirmed that I am in "very profound complete remission." No M-protein in the blood or urine under the most sensitive tests, totally normal bone marrow, no active focal lesions (though I still have over 100 small ones that are filling in slowly), and "multiple indistinct kappa bands" under immunofixation which is the hallmark, BB says, of profound remission.

However, the sub-type of my disease, as I have noted elsewhere, is pretty unfavorable. So I can't quite be fully confident yet -- with a less aggressive sub-type I might be able to say there's a 95% chance I've been cured, but as it stands now the numbers are more like 70%. Still, I'll take 70%!!

Unfortunately, the treatment is not without some side effects. I had thought I'd made it through relatively unscathed except for muscle atrophy and vision issues (potentially cataracts). But the PET scan revealed "mild calcification of the coronary arteries" and an enlarged prostate. Great. I've beaten cancer only to die of a heart-attack while peeing in my pants.

BB, of course, wasn't alarmed by either of these things. For the prostate, he simply said I must have a large gland before cackling and winking at Jill. I appreciate the compliment but I'd rather learn about the potential medical implications of the chemo side effects. For this, I suppose I will have to go back to my primary care guy PZ. On the plus side, after everything I've gone through, a simple finger-up-the-butt-test no longer holds the abject horror that it used to.

As for the heart calcification, he was a bit more serious. And then non-chalantly suggested I lose 40 pounds.

Now, people, when I left the hospital back in March, I looked like I'd just been liberated by Ike and the boys and I didn't weigh what he was suggesting!!! I need to lose more like 15 pounds or so -- I'm not even what I'd call pudgy but I have acquired the belly of a 41-year old who works too hard and collects wine, but doesn't live so well as to have contracted gout. We'll see what this does for me. I have also been cleared to go back on Lipitor, despite what the crazy man in Canada said about it causing my cancer in the first place.

Given my aggressive subtype of the disease (within the overall "low risk" category, still), BB wants to go a little heavier on maintenance with me than with most people, prescribing 1.3 mg/m2 of Velcade weekly rather than 1.0 mg, but he's going to wait until the protocol is revised. In the meantime, starting on 9/29, I'll get Velcade weekly, Revlimid every day (15mg) for 21 days out of each 28 day cycle, and 20mg of dex on the Velcade days. In addition, he wants to see all the osteolytic lesions close up since the notion is the cells could reactivate if they are still there, and he therefore prescribed Zometa, a bone-strengthener, to be administered via IV once a month. Plus I'm going to get Testosterone injections once a month for energy and general mojo, I suppose.

Quite a recipe.

I'm hoping to return to work in November but he cautioned that I shouldn't plan on jumping back in with both feet -- I need to ease into it. So I'm going to try that one out for size with my boss when I have dinner with him and his wife soon. I'm sure he will be supportive.

My next appointment in Little Rock is in late January -- hopefully by that time, all the lesions will have filled back in with bone and I will remain in deep CR, which should make us both feel better about long-term prospects.

Other than being stranded in Little Rock for one more day due to a mechanical problem with a plane and then bad weather in Arkansas and Atlanta, that's about all there is to report for now. I'll be visiting City of Hope to check out this stupid portacath soon, and of course there is my upcoming breakfast meeting with Kathy Giusti of the MMRF which I'm looking forward to, so there will be news in the coming days.

Thanks again to all of you for your support, prayers and positivity!