Volume 66, Number 4, Treatment plan and so on

Start of new treatment was postponed today (Thursday, Jan. 14, 2016). The insurance company is unsure of one of the triumvirate of drugs (the oral chemo drug pomalidomide). Dr. Sumrall decided to postpone treatment until we have all the components.

Treatment will likely begin next week sometime.

I also asked about scheduling some of the infusions here in Matthews, which will save an hour of drive-time for each.

As we’re not in an emergency situation, I am considering this a holiday from taking beatings until morale improves.

Thanks for your support.

Randy Newman with Charlotte Symphony Orchestra, January 15, 2016

I have been a Randy Newman fan for more than forty years. I have seen him perform solo at Wake Chapel (he sang “God’s Song”) in Winston Salem and at, of all places, Carowinds theme park. Friday night was the first time I saw him perform with a full orchestra. The orchestra, conducted by Albert-George Schram, accompanied his piano and vocals using arrangements written by Randy Newman. Randy Newman himself conducted the orchestra on suites from four of his movie scores.

Randy Newman and the Charlotte Symphony Orchestra performed to a full house at Belk Theater Friday night, January 15, 2016.

The opening number was “Birmingham,” somewhat surprising as it’s not one of Newman’s best known numbers. But, as the symphony came in with its whimsical, syncopated accompaniment, it was clearly a good fit. It’s one of Newman’s anthropological numbers about a roller in a steel mill, his wife named Mary (but called Marie), and Dan, the “meanest dog in Alabam’.”

After Birmingham, Newman mentioned that the orchestra would sit out the next number–“not that they refused to play it.” As the lights on the symphony went down, the opening piano chords of “Short People” came up. The audience was clearly pleased. Afterwards, Newman said, “Wow, that sounded especially mean tonight.”

The next three tunes were love songs:

“I Miss You,” a “love song to my first wife I wrote while I was married to my second wife.” “Love Story” (You and Me) is an outline of a vapid, nine-to-five existence that, ironically, “sounds pretty good today.” The first lines of “Marie” say it all “You looked like a princess the night we met, with your hair piled up high, I will never forget. I’m drunk right now baby . . .”

The evening felt like a gathering at Newman’s home–with ninety or so of his musical friends backing him up. Commentary between songs was conversational and entertaining. He was extremely complimentary of the orchestra and the conductor–and he has performed with many of the best.

From the piano, he told of fighting with his young daughter over a chair with its back to the room in a restaurant. After some back and forth, she shut down the argument by saying, “You’re not that famous.”

From the podium, before conducting the “Suite from The Natural,” he turned from the music to a microphone set up behind the podium three times to relate a story about meeting Paul McCartney. McCartney, at this meeting, jumped over a couch to sit down beside Newman. (Turn back to podium and then to the mic.) When Sir Paul acted like it was no big deal, Newman said, “Aren’t you like eighty nine years old?” (Turn to music and back.) “Impressed the shit out of me!”

At 72, Newman is still musically as vital as ever. Sure, he shuffles across the stage to the piano, and to the podium and back from the piano. He changed spectacles when he switched from playing to conducting. But nothing is wrong with his musical chops. Several of the songs he performed are new and will be included in an album he’s releasing this year. So he’s still writing and, obviously, performing.

Newman conducted four suites from his movies: Toy Story and the Natural just before intermission, and Maverick and Avalon (“a movie no Gentile ever saw”) just after intermission.

At intermission, as I was wandering around the lobby, a man approached me and asked me if I was from Iredell County. Being, usually, constitutionally incapable of lying, I said, “Yes I am.” He said, “You don’t remember me, but I’m John Godfrey.” He was wrong. I did not recognize him (and was surprised he recognized me) but I definitely remembered John (of course, as Johnny). I said of course I remember you. We went to the same high school. John was a year older than I, so we weren’t high school friends. However, we both went to the University of North Carolina at Charlotte, and, at one point, we both lived in a trailer park near the University. We became close friends and and shared a number of experiences which are, today, no one else’s business. I think the statute of limitations has expired on most of them, anyway.

Playing solo on “You can leave your hat on,” Newman commented afterward, “Joe Cocker and Tom Jones both had hits with this because they pitched it up a sixth (brief piano demonstration). Just like me to see a hit coming and run the other direction.”

Newman introduced “In Germany before the War” simply as “a song about a murderer.” This song offers ethereal orchestration, melodies that alternate between minor and augmented voicings as the point of view shifts between the narrator and the murderer, and simple but chilling lyrics: “A little girl has lost her way, with hair of gold and eyes of gray reflected in his glasses as he watches her.” It’s a perfect combination of writing, composing, and arranging, though melancholy and chilling. (As one observer has noted, Newman writes three-minute masterpieces.)

The remainder of the second set was an upbeat “best of” Randy Newman: “You’ve Got a Friend in Me,” from Toy Story. “Sail Away.” “Political Science,” (“Let’s drop the big one now!”), and finally “Louisiana 1927,” followed by a standing ovation by the entire audience.

Two encores followed as Newman shuffled off and back onto the stage: “Lonely at the Top,” (Newman thanked the tuba player before playing the tune for “what he is about to do.”), and “I think It’s going to Rain Today,” (Perhaps Newman’s most-covered song.)

After shaking hands with the concert master and conductor and sharing another standing ovation with the entire orchestra, Newman picked up his other pair of glasses from the piano, shook hands with several fans who approached the stage, and shuffled away.

Infusions Volume 66, Number 3 Treatment plan and so on

January 9, 2016

Called Dr. Sumrall’s office Monday morning (the 4th). By noon, Serena had called me back to say I was scheduled to come in this Thursday (the 14th) for labs and my first infusion.

By Tuesday, she (Serena) had sent me the whole treatment plan for one four-week course:

Carfilzomib (IV chemo) on days 1,2,8,9,15 and 16
Pomalidomide (oral chemo) on days 1 through 21
Dexamethasone (steroid) on days 1,8,15 and 22
Acyclovir (antibiotic) twice a day while you are getting treatment
Then you will have a week off before it starts all over.

She also sent a calendar version of it which is a little easier to read.

I picked up prescriptions for the Dexametheasone and the Acyclovir this week but don’t start either until the 14th. The Dexamethasone dosage is a whopping 40 mg. For comparison, for altitude sickness, the dosage is .75 — 9 mg, divided into four- or six-hour portions. (I’m probably comparing kumquats and pomegranates here, but it’s because I’m (cough, cough) sick.)

Nobody has said how many four-week courses will be needed, but I’m guessing three or four based on past experience. If it turns out to be four, the treatments will end in mid April.

Soon after that, it it goes like last time, they will put some plumbing in my chest and give me a bunch of needles to inject myself with for a week or so (to get my body to produce “immature” cells). Then, I will connect the new plumbing to something like a dialysis machine so they can collect the cells and freeze them. Then, scheduling the transplant is mostly a matter of waiting for a bed. I’m guessing early June probably.

I have added a new category to my blog site called Infusions http://www.jamesrharrell.com/?cat=4. Talking about cancer on that blog was the last thing I planned to do with it, but, well, there you go. I will put copies of these emails out there whenever I send one out. I will probably post on Facebook when I add a new page. If you would rather read these on the blog site and not get the emails, let me know and I’ll stop spamming you.

I feel like I’m just gushing information out. I will try to keep these notices brief, infrequent, and to the point as we go along. As well as being a little bit horrified that I have to do this again, I feel like I’ve been challenged and want rise up and meet that challenge. Surprisingly, so far, I’m not the least bit angry. Definitely disappointed that I have to do this again only two years after the first one, but not angry. I suppose that may change.

Infusions Volume 66, Number 2 It’s on. Again. . .

January 4, 2014

They say history repeats itself and that those who don’t study history are doomed to repeat its mistakes, over and over again.

Back in 2013, almost three years ago, some of you commented positively on my status updates regarding my, um, interaction with multiple myeloma. , This, of course, condemned all of you to suffer my whines and complaints about all sorts of interactions: peripheral neurapathy, over-eager interns wanting to order MRI’s because I had some allergic reaction in one of my eyes, etc., etc., etc. (I did get some pretty cool dinosaur band-aids when they were targeting some lesions in my arm for radiation!)

So, once again, I am sending new updates to those people I think might be interested. If you’re not interested, just let me know and I’ll take your name off the list. If you know anyone else who might be interested, let me know and I’ll add them to the list.

Here’s the scoop for today:

I contacted Dr. Sumrall’s office to let them know I’m ready to start the new treatment plan whenever they are. I got a call at lunchtime, saying they are ready to see me next Thursday, 1/14/2016, to start the new regimen.

I’m out of my maintenance drug, Revlimid, and Dr. Sumrall is not renewing it.

I received notification from my pharmacy that my Dexamethasone (sp?) (steroid) prescription is ready to be picked up. Don’t ask me why, it just is, okay? (Feeble attempt at humor re steroid mood changes.)

Thanks in advance for any support you can offer. Please let me know if you do not want to receive these missives. I will gladly remove your name from the list (insofar as there is a list).

I’m not sure exactly where I am right now, but I know I couldn’t be here without the support of all of you and possibly many I have overlooked.

I am yours,

Infusions, Volume 66, Number 1 Biopsy results

January 3, 2016

I saw Dr. Sumrall (my oncologist) on Thursday.

She says the level of plasma cells in my marrow is at 15%. For reference, when we started treating this stuff in 2013 it was 66% and when I went for the bone marrow transplant in 2014 it was still at 30%.

It should be close to 0%.

This does not constitute an emergency situation, but she wants to begin a new course of treatment similar to what we did in 2013: Steroids (by tablet) and chemotherapy, one by daily tablet and one by infusion on one of those weird schedules they make up. (One the first week, two on successive days for the next few weeks, something like that.) She envisions another transplant after that.

I’m supposed to be thinking it over before I see her again on Jesse’s birthday because it’s “my” decision. I can’t see any reason for postponing it, except possibly to continue feeling as well as I do for a while before getting my butt kicked.

I’m in a much better place to deal with this than three years ago. I’m much stronger. The activity is much lower than three years ago but will probably only increase as time goes by.

Charlotte now has a regional specialist in Multiple Myeloma who came here from Arkansas. That’s kind of important because Sam Walton had the disease, and Arkansas has become the epicenter of research and treatment for the Multiple Myeloma. And, they can do the transplant here, in Charlotte, now. I think that’s kind of huge.

So, I plan to call Dr. Sumrall’s office tomorrow and tell them I’m ready when they are. I am up for this, somehow. Having been through essentially the same exercise once before, I think I’m up to it.

Why it’s a good sign if you curse

I’ve been getting A-Word-A-Day since it started back in the nineties.

Every Sunday, the author, Anu Garg, shares comments from the previous week and links to interesting stories about language from the web.

This past week, one of the links was to a Washington Post article Why it’s good sign if you curse a lot.

I enjoyed the article and hope you will too. I know some of you will, but I’m not naming names here.

I am not a cancer “survivor”

When I started planning this blog site, days ago, one of the items I considered posting was a set of things that are true of me, but that I struggle not to let define me.

So, one of my objectives, days ago, was to talk about the fact that, even though I have cancer, I don’t want to define myself as a cancer survivor.

I have Multiple Myeloma. I can’t say I “had” Multiple Myeloma because, at present, it is not a curable disease. The best I can hope for, the objective of the medical profession, is to die “with” the disease, not “of” it.

To get where I am today involved radiation, chemotherapy, a Bone Marrow Transplant (which I will talk about in a separate post), etc. Suffice it to say, as Randall Patrick MacMurphy (played by Jack Nicholson) said in the movie version of “One Flew Over the Cuckoo’s Nest,” I’m a “goddamned miracle of modern science.”

Then, today (Wednesday, November 25, 2015), I saw my oncologist for my bi-monthly check-in. And she told me that some of the numbers they monitor are rising and she is concerned. Like good and bad cholesterol, the absolute values and the ratio between a couple of them are important. The ratios look good, but she–Dr. Ashley Love Sumrall–is concerned about the absolute numbers, and wants to do another bone marrow biopsy.

This is okay with me. Dr. Sumrall is so thorough and careful that she doesn’t wait until things are out of control. She wants to stay ahead of the curve and not miss any detail. So I’m not going to panic unless and until the biopsy results are in.

The only reason I bring this up at all is that it makes it difficult to say, “I am not a cancer survivor.” Until this blip is resolved or disregarded, that’s exactly what I am.