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.

Easter Weekend - April 7-9, 2012

Had a little upset this weekend.  The whole family has had colds the last week or so, including Jeff.  Saturday evening Jeff's temp went up to 101.9 -- not good, so we took a trip to the emergency room, where he was x-rayed, had blood work done, etc.  At about 1:00 a.m. the doctor said that they were going to keep Jeff and treat him for possible pneumonia.  He eventually was diagnosed with a bronchial infection (today Dr. Hales said that he has RSV).  So the family spent part of Easter visiting Jeff at Alta View Hospital.  Jeff was given antibiotics which has helped, and they sent him home Monday morning.  Still not feeling great.  We follow up with Dr. Hales Tuesday and Dr. Nibley Wednesday.  Since Jeff 's immune system is still compromised, it just takes longer for him to recover.  We have now learned that we still need to be very careful.  We cannot expose him to people who are sick. 

We all had to mask up, even little Max!

On March 14, we went for our weekly testing and to assess the prior week's tests with Dr. Nibley. This time my white cell counts were down slightly, which is the main expected side effect of Revlimid. The decline wasn't out of the normal range, but Dr. Nibley decided to cut the dosage anyway, to 15 mg., since studies show that the lower dose is just as effective. I also received my monthly infusion of Zometa, which helps to heal the bone damage caused by the cancer last year.

On St. Patrick's Day we had another great luncheon with friends from Springville High. Get-togethers like this are frequent among our class alums, but this one was again specifically to show support for Laraine and me. There were more in attendance than last time, some who I hadn't seen for a few years. The instigator of these meetings was my good friend Lee Taylor, who has appointed himself our class den mother, and over the past few years has gone to great lengths--literally traveling thousands of miles--to keep in touch with all the members of our class and to keep us in touch with each other. We have a very special class, and it continues to be that way in large part because of Lee.

On Monday the 19th, we returned to the Blood and Marrow Transplant Unit at LDS Hospital for 100-day post-transplant testing. They did many of the same tests they had run just before and just after the transplant to see how I'm doing against those benchmarks. There was a full battery of blood tests, a chest x-ray, a pulmonary function test, and an analysis of urine collected over the prior 24 hours. We won't get the results until next week.

Meanwhile, I feel pretty good. The neuropathy in my feet isn't as bad these days; either it is gradually healing by itself, or the pain medicine, Lyrica, is doing its job. Either way, I'm grateful. I'm still quite anemic and continue to be tired and lack energy, so my productivity is not great. It doesn't seem to matter much what I do or don't do during they day, by early evening I'm pretty drained. But life is good and I count my blessings every single day.

Good News

Went to the doctor March 8th and got the report from last week's tests.  Jeff's M spike is 0 and his igA level is at 150!  The PA we visited with told us we didn't need to be there because everything looked good!  We are very grateful for this good news.  Another week of Revlimid and then a week off.

Revlimid (Lenalidomide)

Just a quick update -- on February 21, 2012 we had delivered to us via UPS a 21 day supply of the maintenance chemo Jeff will now be taking.  He takes a 25 mg capsule of Revlimid daily for 21 days and then will be off the treatment for 7 days.  On March 1st we checked in with Dr. Nibley to have a blood workup done, as Revlimid suppresses the immune system.  After a week on this medicine, Jeff's levels were very good, so we will continue for another week.  Jeff will be checked weekly for the first month of treatment and then monthly after that to make sure that everything is ok.  The only side effect Jeff has had since being on this medication is that he felt a bit unsettled and then his head and waistline were itchy -- both of those symptoms have now gone away.  It takes longer to get the results of his iga levels and M spike (cancer levels), so hopefully this week we'll get that.  We visit Dr. Nibley again on March 8th.

After being under the care of the LDS Hospital Blood and Marrow Transplant unit for the past three to four months, I was officially transferred back to the care of my primary oncologist for ongoing monitoring and treatment. We--that is Laraine, Emily, and I--met with Dr. Nibley today. Emily comes along to many of my appointments when her works schedule allows it. I am exceedingly grateful for her dedicated interest and support; her passionate advocacy and medical training have been encouraging and insightful.

We always like to see Dr. Nibley; he is always lighthearted and upbeat, while saying what needs to be said. As expected, today he proposed a maintenance regimen composed of a small, daily, oral dose of a medicine called Revlimid, along with monthly testing to make sure the myeloma is staying away. Revlimid has only mild side effects, and is a modern cousin to thalidomide, which some of you may remember caused a horrifying rash of deformed babies back in the sixties.

Revlimid is highly controlled, so the Dr. actually has to apply for it, and the drug company will call and interview us before it can actually be prescribed and used, so we'll keep you posted on that. It is also highly expensive, as is everything related to this illness, so we're mighty grateful to Medicare and my insurance company for picking up the tab.

There really wasn't much else. We just asked about being able to serve a mission away from Salt Lake, and Dr. Nibley recommended we wait until the year mark and make sure everything is stable and I'm back to full strength, and then I could probably go anywhere where I could get hooked up with an oncologist who could monitor my medication and condition. Meanwhile, we could probably do something here in the valley that would fit within my energy limits; I'm still pretty anemic, and tire easily. However, the Church no doubt has its own restrictions on where members in our situation can serve, and we still have to check that out.