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Background Info: Here is background information that will bring you from my initial diagnosis up to September 2014, when we decided that it was time for a bone marrow/stem cell transplant. This can get lengthy and somewhat technical… sorry.
In the fall of 2011, I started noticing pain in my right hip area. After a couple of months it had gotten continuously worse, much worse, so I finally saw my primary care doctor. After a few tests, especially an MRI, he made a preliminary diagnosis of Multiple Myeloma based on the fact that my hip and several vertebrae had lesions on them (that's holes in the bone, causing the pain.) Next came a bone marrow biopsy and I saw oncologist/hematologist Denise Snow in January, 2012. She confirmed the diagnosis, officially.
Multiple Myeloma is a complex form of cancer that affects the bone marrow which is responsible for the creation of red blood cells, white blood cells and platelets. Multiple Myeloma is NOT CURABLE, but it is TREATABLE. Dr. Snow says that the life span with Myeloma a decade or two ago, was about 3 years. But now, with all of the new treatments, people can live with Myeloma for 5-20 years. She says to think of it like diabetes -- if you don't treat it, it will kill you, but if you treat it, you can live for many years. If allowed to progress, the myeloma cells create nothing but themselves, so that red and white cells are shut out. This leads to severe anemia, a severe weakening of the immune system and many other maladies, including weakening of the bones (osteoporosis), which can lead to compression fractures.
Here's my own personal miracle! On the first day that I saw Dr. Snow, we talked a lot about the pain. I had been using a crutch for church and any long walking, like stores. (I even got teased at church for using a "quad cane" which my sister-in-law loaned to me. Next time I need a cane, I'll get one with racing stripes!) So, at that first oncology appointment which was on a Friday, I had actually been using a wheelchair to get around the clinic and hospital for further testing, because of the severe pain. Dr. Snow prescribed some steroids and said to take them on Saturday morning and Sunday morning, and that by Sunday evening the pain should be much better. Here's the good part: When I woke up on Saturday morning -- BEFORE I TOOK THE PILLS -- the pain was already gone! WooHoo! Lots of people had been praying for me and I give God complete credit for the relief of pain. And even better -- the pain has NEVER come back!
Transplant Preparations: A bone marrow/stem cell transplant is considered the "gold standard" for treatment of Multiple Myeloma, but it is a very challenging, rigorous procedure. Oral chemotherapy gives the patient the option of delaying or even rejecting the transplant, as long as things progress well. I was sent to Mayo Clinic for a full evaluation in the spring of 2012 to determine whether a transplant was in my future. I opted to harvest my own stem cells and freeze them for a possible, future transplant, thus delaying the procedure, hopefully for a long time. The bone marrow/stem cell transplant itself involves harvesting healthy stem cells from the patient (mine were in pretty good shape thanks to the Revlimid.) That has been done. Bonnie and I spent almost 2 weeks in Rochester in May of 2012 for all of the testing and harvesting of stem cells. Then, if and when the time comes for a transplant, I will be given massive doses of chemotherapy by infusion -- to the point where not only the myeloma cells are killed, but also all of the bone marrow. So I will have no way of producing red or white cells, which means total fatigue and complete loss of the immune system. After the chemo, the stem cells (which were collected and frozen earlier) are injected into the bloodstream where they find their way to where the bone marrow was and rebuild it. Cool! The problem is that it doesn't happen overnight. It takes several weeks before I would be out of danger from infections. And I would need to avoid crowds for several more months. That's all in the future.
Long story short: In January 2012, I started on Revlimid, an oral chemotherapy, that was very effective. I am also on Dexamethasone once a week throughout all of this chemo. Dex is an oral steroid. The regimen for Revlimid is to take one pill a day for 21 days and then have 7 days off. The chemo and dex brought my "M-Spike" way down. "M-Spike" is a special protein that indicates the extent of Myeloma cells in the body. And there were very few, and very mild, side effects. I always said: "If I didn't know I was sick, I wouldn't know I was sick!" I was also put on a monthly infusion of Zometa for the osteoporosis. Zometa is similar to Boniva but I get a much bigger dose. (My monthly dose is equal to the amount of Boniva that would be taken in a full year.) But Multiple Myeloma is sneaky. It always finds a way to mutate so that the chemo is no longer as effective. So after a year and a half on Revlimid it started to lose its effect and the M-Spike slowly started to move up. So we added an injectable chemo called Velcade to the mix. The new mix brought the M-Spike down some which was encouraging, but after a year, the M-Spike started moving up again. So a completely new plan was started in early 2014. Drop everything and start on Cytoxan, an older oral chemo with some nasty potential side effects. Fortunately the side effects didn't materialize, but the drug was also not effective. My M-Spike continued to crawl up. The Myeloma wasn't at a dangerous point yet, but something new was needed to keep it that way. By the way, I was still feeling very good throughout all of this -- Thanks Lord! So… Cytoxan was dropped and I was put on the latest, newest oral chemo, Pomalyst. It is closely related to Revlimid, so we expected good results and we got them! My M-Spike dropped dramatically -- to the lowest point it has been since my diagnosis And that is after only 2 rounds. That's where I am as of September 2014.
God Is In Control My initial thought when given my cancer diagnosis was "I get to go home!" Really! But my second thought was "What about Bonnie and the others that I love and that love me?" So began the battle. We sought prayer from all the believers we knew. Not knowing what to expect next, we just sought comfort in God's caring hands, and healing. And He has provided. My doctor is wonderful. The meds have done what they need to do. And the support from family and fellow believers has been fantastic! I hope you'll read my journal updates so that you know what is happening day-to-day. That way you'll be better able to pray for Bonnie and me. Thank you so much!
Visitation for Phil will be Sunday, Oct. 23, 2022, from 5 - 7 PM, with a time of sharing at 6:30 PM at Korsmo Funeral and Cremation Service, Moorhead, MN.
Phil’s Life Celebration Service will be Monday, Oct. 24, 2022, at 11 AM, at Triumph (West) Lutheran Brethren Church, West Fargo, ND.
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