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.

Good News!

We haven't given any updates until today as we have been waiting to meet with the BMT Clinic oncology doctor so that we could get the results of Jeff's bone marrow biopsy, which was done on January 11th.

We had a great visit with Dr. Finn Peterson today.  He told us that Jeff had an excellent response to the bone marrow transplant and that there is no evidence of disease.  We had met with the BMT Clinic coordinator last Friday and she had really prepared us for the possibility that Jeff would be entering the hospital in the next week or so to undergo another transplant.  But today Dr. Peterson told us that because of Jeff's excellent response, no second transplant would be necessary and we will now return to our oncologist, Dr. Nibley, and be watched by him.  Jeff will be on an oral low dose chemotherapy treatment to keep the cancer down and out.  The nature of multiple myeloma is that it will eventually return but we're hoping for a long-term remission from the disease.

We are so very grateful for this wonderful news.  We are grateful to our Heavenly Father for his blessings to us and our family and we are grateful to the outstanding medical staff who have given us such excellent care.  Thank you also to all our family and friends who have prayed, supported and helped us through this challenge.  Thank you!  Thank you!

Jeff continues to get stronger every day and to recover from the effects of the transplant. He has even sprouted some tiny, wispy white hairs from his shiny head, with more to come soon (we hope). We are now excited to make plans to enjoy life and to serve. We had made no plans except to be in the hospital and then recovering for the next three months. So our calendar is completely blank, just waiting for us to fill it.

We'll get back to you as soon as we've seen our oncologist.

Visit to BMT Clinic

Jeff and I visited the BMT Clinic on Thursday, January 5th, 2012.  The results were very good.  All of Jeff's blood levels are in the normal range now.  The doctors were pleased with the progress Jeff has made over the last few weeks.  Even though Jeff's blood is at normal levels, it will take a year for his bone marrow to heal completely.

This week has been a quiet one.  Jeff has kept himself busy with daily morning exercise and various projects he wants to complete - some outside and some in the garage.  He still needs to take short naps/rests throughout the day.  We are so grateful for his progress.

Our next BMT Clinic appointment will be on Wednesday, January 11th -- that's the day that a bone marrow aspirate will be taken and the doctors will know just how effective the bone marrow transplant has been against the level of cancer.  We are hoping for the best result possible.