Hi All!
Most of you know Teresa has been struggling with increasing shortness of breath on mild exertion for about 2 ½ years (since our hike across Spain). For some time she just thought this was simply an issue of aging. As it worsened, we realized it didn’t fit the profile of someone who had taught aerobics for 25 years. For the past 6 months she and her doctor have been aggressively looking for the root cause. Extensive tests, multitudes of specialists, scans, x-rays and ultrasounds all came back negative. A recent CT scan showed a compression fracture in her L1 vertebrae that wasn’t present on an MRI from 2 years ago. The doctor asked if she had fallen, had some trauma affecting her back or currently had any back pain. The answer was no. In trying to understand what caused the compression fracture, the doctor ordered one very specific blood test which looks for a particular light chain protein in the blood.
Immediately after completing that test she was referred to hematology/oncology. The oncologist said the normal for this protein count should be less than 20 and her count was over 1,000. The only known cause for such a high count is called Multiple Myeloma which is a cancer of the bone marrow. Last year there were about 30,000 new cases identified in the U.S. so it’s not rare, but not very common either.
Rogue cells in Teresa’s bone marrow are overproducing a sticky light chain protein which normally attaches to an antibody structure. In about 15% of myeloma patients, these proteins collect and accumulate in tissue, muscle and organs. This is known as Amyloidosis. Her oncologist ordered an echo cardiogram which revealed these proteins marbled in her heart muscle, something that didn’t show up in an earlier echo cardiogram taken in April. This causes her heart muscle to be stiffer and to not work as efficiently. Upon any exertion, her body signals for more oxygen so her heart pumps much faster and breathing increases accordingly. The good news is that we finally know what is causing her shortness of breath. This is HUGE!
Here’s a short easy-to-understand video about the disease if you’re interested in a little more detailed info.
https://www.myeloma.org.uk/videos/an-overview-of-al-amyloidosis/Now for the treatment. Starting Monday, October 1st, she begins chemo therapy (2 weeks on followed by 1 week off). We are told this chemo regimen is tolerated well by most patients. She probably won’t lose her hair but may experience nausea (which they can control with meds) and fatigue.
After 3-4 months of treatment she’ll go to Stanford Medical Center in the Bay Area to begin the 2-3 month process of bone marrow transplant. They will harvest her own stem cells for a few weeks, then blast her with mega amounts of chemo which will kill off the good, the bad and the ugly cells inside her bone marrow leaving her without a functioning immune system. She’ll be in a clean room of the hospital while they reintroduce her stem cells back into her body. The stem cells will repopulate her bone marrow and start producing the various blood cells and other stuff they’re designed for. At that point she’ll be in remission and will begin the maintenance treatment phase, taking a smaller dose of chemo forever. Since there is no cure for this disease, they’ll monitor the protein count in her blood and if/when it goes up, she’ll start treatment again. Once the protein counts are back to normal, her body should start to rid itself of the accumulated proteins in her heart (and wherever else they may be). This should begin to restore normal functioning of her heart.
Please pray for strength, healing and peace as we walk forward through this. It’s scary and overwhelming but we’ve already seen God’s fingerprints all over the timing of this in lots of ways. We wish we could have told each of you in person but this will have to do for now. Calls, emails and texts are all good ways to reach us if you have questions or just want to chat. Dave will be the communication point man in order to help manage the effort. Caring Bridge will be our main communication vehicle and you can sign up for email or text notifications whenever we post new updates. Teresa is fairly new to the iPhone world but is getting a whole lot better at texting and even sending photos. Our kids are so proud of their technologically challenged mom!
In His hands,
Teresa and Dave
