Troubling News

The week started and ended well but there was a tough spot in the middle. It began with lunch at the Ho Ho Gourmet with a great bunch of guys I used to work with: Matt Augustine, Gary Lee, Ryan Anderson, and Jared Penrod. We get together about once a month; Dave Moore usually joins us but couldn't make it this time.

Then Laraine and I had a great dinner with my brother Steve and his wife Elaine at the Water Moon in Draper (it must be Chinese week). We planned a camping trip for the week after next down at Capitol Reef National Park.

Thursday was the hard day. We met with my oncologist, William Nibley, and the news was not good. One of the two cancer markers we follow, the M-spike, had gone up to 0.4 after having been level at 0.2 since my transplant last November. The other marker, IgA, was inadvertently not processed by the lab, but I have no doubt it has gone up too. Unlike the M-spike, the IgA has been climbing steadily since the transplant. This means I will probably be switching to a new drug regimen. Dr. Nibley ordered more tests to confirm the M-spike result and pick up the IgA count that was missed, and then we'll meet and re-evaluate in a month.

In addition, my red and white blood counts were down even further. This is caused by the Revlimid drug that I take, even though I had been off it for a week. I do a cycle of 21 days on and 7 days off. The lowered red count makes me anemic and the lowered white count weakens my immune system.

Things got better after that as Laraine, and Libby and her two boys Sam and Max, and I headed for St. George, where we are staying with my brother Mike and his wife Jan. Friday we all took a nice walk on the pathway along the Virgin River. Saturday Mike and I enjoyed a bike ride on the road that leads to Zion National Park, ending up in Springdale, where the rest of the gang met us for dinner at Oscar's. Try it if you're ever in the neighborhood.

Yesterday after the Brigham City Temple dedication, Mike and Jan had a barbecue for other family and friends that are visiting or live here in St. George. Our youngest Aly was down with her husband and some of his family. Also here was my sister Suzanne, her son Brian and his family, and my brother Steve's son Nathaniel and his family--all St. George residents. We had a great evening.

I continue to be plagued with pain in my back, or at least in my ribs. When it first started a few weeks ago, the doctors thought it was a spinal problem, but after reviewing all my past x-ray reports, I think the problem may be in my ribs, perhaps from fractures I've had since getting cancer--ones I didn't even know about because I hadn't read the reports carefully. When we return home to Sandy I will get back together with my primary care doc, Reid Hales, to try to figure it out. It's really been slowing me down.

Lots of testing this week. Dr. Hales, my primary care physician, had me get a CT scan on Thursday, to try to figure out what was causing the pain in my back. Then Friday morning I underwent what is called a skeletal survey, about thirty-odd x-rays of my entire skeleton. This had been ordered by my oncologist, Dr. Nibley, who is also concerned about my back, but also wanted to know if there was any increase in cancer-related damage to my bones. While I was in the clinic, I also got my regular blood tests, and my quarterly infusion of Zometa, an osteoporosis medicine to strengthen my bones.

The result of the CT scan and the skeletal survey is that there was nothing to indicate any source of the pain in my back. I have a little degeneration in the spine, probably due to my age. I also found out I had two fractures that I didn't  know about, in one of my ribs and in my pelvis. Both apparently are healed. My guess is that they were caused partly by the damage to my bones from the myeloma, but I have no idea when I got them.

The blood work showed that, as usual, the Revlimid therapy I take has suppressed my immune system, and depleted my red blood cells, perpetuating my anemia. I am off Revlimid this week, which is part of my regimen: 21 days on and 7 days off. I will meet with Dr. Nibley this week to decide what to do differently, if anything. As far as the cancer markers, which indicate how active the cancer is, that test has to be sent out to another lab, so I won't get those results for a day or two.

Every Friday morning I take dexamethasone, a steroid that is part of my cancer treatment regimen. I noticed two Fridays ago that I had no back pain all that day, after taking the "dex", but the pain returned part way through the next day. This last Friday, however, the pain went away and never came back. So I'm guessing the dex has somehow cured the cause of the pain, or at least masked the pain. Either way, I am really grateful. The pain was very debilitating; it gave me real empathy and compassion for those who suffer chronic back pain.

I just got a great call from my good friend Lee Taylor, from my graduating class at Springville High. Lee looks after all of us and keeps the class together, a "calling" he selflessly took upon himself years ago and has carried out faithfully ever since. He travels widely and always makes a point of visiting any class member who happens to be in his path. He's a great guy.

I'm headed to St. George this week to see my brother Mike and my sister Suzanne and to see "Aladdin". My next post will be from there.

I know the best post is a short post but I have some catching up to do. Back in April, I was just getting over the RSV-pneumonia-bronchitis adventure that put me in the hospital when I hit the next speed bump. Laraine and I had just gone to Marriott Mountainside resort in Park City for a week of fun, relaxation, and just getting away from our chores. Sunday was great; daughter Aly and her husband Dave joined us and we went to Church in Heber, where we ran in to my nephew Brad Allen, who is on the high council there. We had a lovely dinner and evening.

Then, early Monday morning I awoke with vomiting and diarrhea which lasted about 18 hours. Apparently I had a good old GI (gastro-intestinal) infection, commonly known as stomach flu. I don't know how I got it.  At any rate, by the end of our week I was doing OK, but I did seem to have aftershocks for several weeks. Since my transplant, I do get indigestion and sometimes nausea, much more than before.

The next adventure was traveling to Shaker Heights, near Cleveland, in late May through early June to visit our son David and his family. It was a great trip as we got to know much better our grandchildren Miles, Faye, and new baby Gwen, and participate in many fun activities. We watched Dave graduate from medical school (woohoo!) and took part in blessing baby Gwen. The trip was marred just a little by bouts of bad indigestion and nausea, about every two or three days. The other bad thing was when I lifted a big bag of soil at an awkward angle. I thought I had pulled a muscle, but I found out later I had injured my back. On the plus side I did feel strong enough to exercise an hour every day, alternating between running and biking. 

After our two weeks in Shaker Heights, Dave, Cicely, the three kids and the two of us packed into the family van and headed for Orlando. We took two days, staying overnight in Charlotte, North Carolina. It wasn't as bad as you would think; the kids were great to travel with. We had a great time at Disney World, spending four days in the various parks and resting a couple of days in between. At the end of our week we flew home to Salt Lake and the kids drove back to Shaker Heights.

Aside from intermittent nausea, I felt pretty good the whole time with the kids, but apparently I caught something from somebody somewhere, because the day I got back I got really sick with chills and fever and was down for several days. The doctor put me on antibiotics and after a few days I was OK.

At the end of June, we sold our ancient van (1998 Windstar) and bought a used, crew-cab pickup (2006 Toyota Tundra) from one of our neighbors. For our first road test of the new truck, Laraine and I took the tent trailer to Great Basin National Park just across the border in Nevada. We camped at 10,000 feet and had a great time--no health problems. We hiked to see 3,500 year-old bristlecone pines, and toured Lehman Cave. If you haven't been there, you should go.

The first week of August brought the extended Cain family annual camp-out at Monte Cristo, above Huntsville, where we have camped the last few years. Some of us spent one day driving around northeastern Utah and parts of Idaho and Wyoming, tracking my brother Mike as he trained for the upcoming LOTOJA bike race. As usual we spent Friday of the camp week at Pinedale Reservoir, enjoying our son-in-law Brandon's boat. Fortunately, I felt pretty good the whole week.

Between adventures, I spent the summer working in the yard, trying to simplify the landscaping to make it easier to maintain and make it more attractive to potential buyers when we sell our house some day. One of the projects was to take out our large vegetable garden and replace part of it with grass. My neighbor had some leftover sod, so I went to work putting it in. I usually work two or three hours in the yard before noon and then quit for the day; that's about all I can stand in my condition. But for some reason (or lack of reason) I worked all day for several days in a row trying to finish the sod. In addition, the sod was very wet and consequently very heavy. Result: I now have an injured back and chronic back pain. The multiple myeloma may have weakened my back and predisposed me to back problems.

Speaking of multiple myeloma, I continue on the maintenance therapy, consisting of a daily Revlimid pill for three weeks, and then a week off. As I have mentioned before, the Revlimid makes me anemic and lowers my immune system, along with fighting the cancer. At one point, I had to take an extra three weeks off because my immune system was dangerously compromised. About three months ago, Dr. Nibley added a weekly dose of dexamethasone pills, a powerful steroid that fights the cancer, but that also has many side effects, including substantial muscle atrophy. The plus side is that on the day I take it, I have no back pain.

As to the cancer itself, we're getting a mixed message. One of the markers, the M-spike, has remained steady at a low level, which is good. On the other hand , the IgA measure has risen steadily since my transplant and is now in abnormal territory, which is not good. I will undergo some more tests later this week and meet with Dr. Nibley the following week, to try to figure out what is going on and what to do next. We might change medications. I have also considered getting a second opinion, probably from the Huntsman Cancer Institute, just to get another viewpoint.

On church matters, I was released from the bishopric just before my transplant and didn't have a calling for a while afterward, but now I am teaching gospel doctrine and serving as a stake auditor. Laraine has just been called as a counselor in the stake Relief Society presidency.

In the meantime, Laraine and I have spent this week with my brother Mike and his family at the Ideal Beach Resort at Bear Lake. Our daughter Libby and her boys also joined us for a couple of days earlier in the week. The main point of the trip was Mike's participation in the famous LOTOJA (Logan to Jackson) bike race, which took place yesterday. Mike's wife Jan, their daughter Jessica, my sister Colleen, and Laraine and I had a great time providing support to Mike during the race. Driving through the most beautiful scenery, we met Mike at several pre-selected feed zones along the route to replenish his supplies and otherwise give aid and comfort. Mike did great, finishing in a very respectable 12 hours and 28 minutes, especially given his age of fifty-seven.

I promise not to wait so long until the next post. Our next big adventure is a trip to colonial Williamsburg in October, but I will get back to you before that.