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“Where there is great love, there are always miracles” Willa Cather
Multiple Myeloma (MM)????
If you have never heard of it -- you are in good company. Neither had we. But we had to learn quickly.
We thought it would be good to start with explaining what exactly Multiple Myeloma is.
Multiple Myeloma is a blood cancer related to lymphoma and leukemia Though it is not a curable cancer, there are treatments that can slow down its progression.
In Multiple Myeloma, a type of white blood cell called a plasma cell multiplies unusually. Normally, they make antibodies that help fight infections. But in Multiple Myeloma, they release too much protein (called immunoglobulin) into the bones and blood. It builds up throughout the body, causing organ damage.
The plasma cells also crowd normal blood cells in the bone. They release chemicals that dissolve bone. The weak areas of bone created by this are called lytic lesions.
Multiple Myeloma is often referred to as MM.
The most effective treatment for Multiple Myeloma is stem cell transplantation (SCT). In SCT, some of your stem cells are removed (harvested), frozen, and stored. They may also be taken from a donor. Using your own stem cells is ideal as it has a higher rate of success as opposed to using donor cells.
Before going straight to stem cell transplant, you typically go thru a regimen or "cocktail" of chemotherapy treatments in an effort to reduce what is called your Kappa Light Chain (KPI) . That may be a series of multi-week cycles over the course of 3 to 4 months. The goal of this regimen is to reduce your KPI to its lowest possible number before having a transplant
Then, immediately prior to the actual stem cell transplant, you receive an in-patient high dose of chemo which is used to destroy almost all the cells in the bone marrow -- both healthy cells and the plasma cells that cause the disease. It literally wipes out your entire immune system.
The harvested stem cells are then injected into your veins. They travel to the bone marrow, where they multiply and make new, healthy blood cells.
Stem cell transplantation doesn't cure Multiple Myeloma, but it often helps you live longer.
That's the cliff's notes version of Multiple Myeloma.
For some of our friends and family we know you are hearing all of this for the first time. We're truly sorry about that but knowing Mark you also know he can be a very private person as it relates to personal things. As we got closer and closer to knowing the outcome of his first round of treatment and what the next steps in the plan were, it became clear to us that we needed to more openly share the journey with all of our friends and family. We thought CaringBridge would be a good vehicle to share the history of what has happened over the past 4+ months (albeit lengthy) so you were informed and so you knew that we want you all to be a part of this journey we travel together.
That being said, forgive the long-winded timeline below.
So.....to make a long story.......longer: here's what got us to this point and where we are today:
In November, the weekend before Thanksgiving Mark was having some back pain. On Saturday morning he got tired of getting lectured about going to see see a doctor and agreed to go to the local Urgent Care Clinic in Burnsville. We assumed they would check him out, determine it was “back pain”, maybe prescribe some pain meds to get him thru the weekend, and tell us to go see our primary doctor next week if it didn’t improve.
After asking some questions, the Dr. at the clinic said he wanted to do a CT scan to rule out any possible other causes or issues. After what seemed like a really long time, he came back and told us he saw some things on the scan that “concerned him” and scheduled a full MRI scan at Park Nicollet Hospital in Minneapolis. We drove to Park Nicollet and after a 2 hour scan, we were told by the radiologist that they could not share the results with us. We needed to call the Urgent Care Doctor in Burnsville and ask him to read the results of the scan to us. Which we did. He informed us that the scan confirmed that Mark had some form of bone cancer and that we would need to wait to hear from an oncologist sometime Monday to determine next steps and discuss further testing.
Unfortunately we did not hear from anyone on Monday and we weren't sure even who to call or what to do other than wait. On Thursday after what you can imagine were 4 very long days, we got a call from a cancer clinic to schedule a series of tests and we were assigned an Oncologist to meet with and ultimately review the results of all the tests. Mark had a multitude of tests: PET scan, tons and tons of blood work, a bone marrow biopsy along with many others. Once the results were in from all of the tests we met with our first Oncologist. He confirmed that Mark has Multiple Myeloma. That it is not a curable form of cancer. It is a very rare form of both cancer and Myeloma. There are treatment options available that will hopefully slow the progression of the cancer. This Oncologist had some experience treating MM but not a lot as it is rare.
Ultimately we found a new Oncologist at the University of Minnesota who specializes in treating Multiple Myeloma. in fact, she ONLY treats patients with Multiple Myeloma. Our fist meeting with her was extremely comforting and she handled us with the utmost confidence and care. After more tests and more consultations she outlined her recommended treatment plan: 1) multiple cycles of a cocktail of 2 types of chemo, a steroid, and a bone strengthener. 2 weeks on, 1 week off per cycle. 4 or 5 cycles. 2) a high does inpatient "chemo blast" that will wipe out his immune system prior to Stem Cell Transplant, 3) Then move to Stem Cell Transplant. The goal of the first round of treatments is to reduce his Kappa Light Chain number to it's lowest possible number. When we started this journey Mark's KPI was at 99. The goal is to get it as close to 0 as possible prior to Stem Cell Transplant.
Fast Forward: we've completed the last cycle of chemo. The test results showed a dramatic drop in his KPI numbers which was great. Unfortunately they were not as low as they wanted them to be and the current treatment plan showed it had more than likely stopped working in reducing his numbers any lower. The recommendation now is to add a new step in the treatment process in the hope of getting his KPI to 0. That entails admitting him into the hospital for several days. They will put a PICC line in his upper chest and administering a new stronger form of chemo via the PICC. The PICC will stay in place for the duration of his treatment plan and post-transplant and hopefully be taken out after 6-8 weeks. On Monday, April 10th they will admit Mark into the hospital and start administering the new chemo. Hopefully he will be out of the hospital after 2 or 3 days. We will have to wait for about 10-12 days to watch for his numbers to change. Around approximately the end of April/first of May they will admit him to the hospital again for the high-dose "chemo blast". He will have 1 day of rest and the next day they will do the actual stem cell transplant.
So that's where we are today. The next update you will see from us will be Day 1 of the First Journal Update which will more than likely be around the 10th of April once Mark starts the new chemo.
Through-out the first phase of the treatment plan Mark has done extremely well and most days he feels pretty good. He has some days where he is overly-tired and gets crabby (LOL), but those are few-and-far-between. He has amazed us with his strength, positive attitude and his unrelenting concern for us more than for himself. We are also blessed with two of the most incredible children who have been forced to step into roles that no children should have to step into at this point in their young lives. Ryan has taken over complete control of the restaurant and has done a tremendous job. Megan has taken on the role of care-giver and keeps her Dad in-check with all of his appointments, meds and goes to every single treatment with him. We could not be more proud and more grateful for who they have become and for how they are handling all of this .
WE ARE INCREDIBLY BLESSED AND GRATEFUL KNOWING WE HAVE SO MANY FRIENDS AND FAMILY TRAVELING EVERY STEP OF THIS JOURNEY WITH US. WE ARE SO THANKFUL FOR ALL OF YOUR THOUGHTS & PRAYERS AND WE ASK THAT YOU KEEP THEM COMING AS WE GO FORWARD.
"When someone has cancer, the whole family and everyone who loves them does too" Pinkribbonproject.com