Announcement #2

October 17, 2008

-and-

October 22, 2008

Dear Family and Friends:

The first five paragraphs of this update were written on October 17, when, other than persistent pain, the way forward looked pretty straightforward, and quite positive. The remaining paragraphs were written on October 22, after that way forward suddenly changed without warning. We are still looking forward to a positive path—but it will be a different one, and now we know that this one, too, could change at a moment’s notice.

The October 17 Report: Mostly good news from the Painsville—not that pleasant city in the battleground state of Ohio—but rather my unwilling abode over the past few days. The bad news all centers on pain. An MRI yesterday revealed why I have been contending with so much of it—my fifth lumbar vertebra, thanks to the myeloma, has essentially collapsed into a compression fracture, which, I can assure you, hurts almost as much as the prospect of a McCain Administration! On Monday afternoon, I will be undergoing a vertebroplasty to rebuild the vertebra so that it can once again support the weight of my spinal column. The docs assure me that the pain relief will be almost immediate. I would drink to that, except that I have to be a teetotaler while on Oxycontin and Vicodin!

The good news has been abundant, however, and for that, we are very grateful. On Tuesday the 14th, I began radiation treatments on both hips and on the lesion in my pelvis, and after a slight early reaction, I have been tolerating this treatment well. As a result, I am already starting to feel some pain relief in these areas.

Most importantly, on the evening of Wednesday the 15th, I began my chemotherapy regimen of Revilimid and Dexamethasone, and I have been tolerating these two powerful agents extremely well. If they do their jobs, the tide of the battle will be turned significantly in my favor. What an incredible irony that the drug that broke so many hearts in the 1950s—thalidomide—will be, in its new incarnation of Revlimid, the means of saving my life!

Still to come is significant intervention to rebuild the weakened bones in my ribs and hips—that won’t be advisable until the chemotherapy reduces the myeloma load on my system—with the first treatment scheduled for my return to Mayo in mid-November. In the meantime, I’m dealing with a fourth cracked rib, but the painkillers have made this an easier task than I had with the first three.

So, by this time next week, I expect to be in significantly less pain, and hope to have the various markers by which they measure the progress (or regress) of MM moving in the right direction. Florence has been doing an awe-inspiring job of taking care of me—everything from managing my medical care to putting on my socks in the morning. Family and friends have rallied around with great food, thoughtful notes, generous infusions of mirth, and heartfelt expressions of prayers and good wishes. You’ve all combined to hold me up when sheer pain had me reeling. It’s all more than I could have expected, certainly more than I deserve, but not more than I can appreciate, nor more than I will remember with a full heart.

The October 22 Report: On the morning of Friday, October 17, my scalp began to itch. By that evening, my skin on my face was turning red and feeling warm. That evening, Florence took me to the Borgess Hospital emergency room, which gave me Benadryl, and sent me home. By the morning of Saturday, October 18, my head was doing an alarming imitation of the local jack-o-lanterns. We feared that I might be reacting to my pain medication, so we cut that out, too. I was now in full-blown reaction to at least one of the drugs I was taking, and the fifth lumbar vertebra, with no pain killers to mask it, was reminiscent of a Bowie knife twisting maliciously in my lower back.

By Sunday morning, October 19, it was back to Borgess, where a wonderful team of doctors, led by our close friend, Dr. Dan Stewart, and including Dr. Radha Vemuri, my Hematologist at the West Michigan Cancer Center, and Dr. Greg Nowakowski, my Hematologist at the Mayo Clinic, got the drug reaction under control with the use of steroids, and found a pain reliever that removed the figurative Bowie knife from my back. On Monday, October 20, Dr, Bozarth, an Interventional Radiologist, successfully performed the verteboplasty, thus rebuilding lower lumbar vertebra. While it is still tender from the surgery, the pain of the former compression fracture has been effectively relieved, allowing me to walk normally again, and someday soon, to be able to bend over once again. Obviously, this is a great development!

Our team of Drs. Stewart Vemuri, and Nowakowski, however, identified a much less happy development: the cause of the drug reaction. They eliminated the initial suspects one-by-one: the pain relievers, the aspirin, and the first set of steroids. The culprit, unfortunately, turned out to be Revlimid, the chemotherapy agent of choice. Florence has since discovered that, according to research conducted by the manufacturer; of the 37,000 people who have been prescribed Revilimid 11 have had reactions. That’s right—I am the twelfth person worldwide to wash out of a Revlimid regimen. I guess I have always believed that I am special, but here is hard proof!

We now go to the second-best chemo treatment, Velcade, which unfortunately has to be administered by infusion, instead of by pill. We hope that this will work, but we are mindful that, for two days, I seemed to be handling the Revilimid well, too—until it hit me like an angry rhino. If all goes well, therefore, we will start the infusion of Velcade at the West Michigan Cancer Center on Monday, October 27, and if I can tolerate it, the first cycle will come to an end in mid-November, just in time for our return visit to the Mayo Clinic.

So, with our continuing gratitude to our marvelous doctors, nurses and other medical professionals, continuing thankfulness to our friends who feed us both spiritually and literally, and with my personal awe at Florence’s boundless loving care for me, I’ll try to keep future news reports more positive from here on out.


With love,

Joel