In August of this year, Joanne was diagnosed with two rare blood diseases and a very challenging prognosis for recovery. Surrounded by friends and family, Joanne is now embarking on the difficult and medically-daunting road ahead. To help support Joanne, we decided to create this site as a place where we can post updates on her progress, help coordinate the everyday logistics, and offer her support and well wishes along the way. She has a lot of love wrapped around her, and knowing that makes a huge difference!
Joanne’s has two rare blood diseases called myelodysplastic syndrome (MDS) and myeloproliferative disorder. Although the causes of these disorders are unknown, both genetics and exposure to carcinogens are likely suspects. During the progression of the diseases, the stem cells in the bone marrow do not mature into healthy red blood cells, white blood cells, and platelets. And unfortunately, while the severity can range from mild to severe, Joanne’s condition is at the severe end of the spectrum.
The Original Prognosis
Joanne’s doctors told Joanne that she most likely has a limited number of months to live. Of course, we all refuse to believe that and have chosen instead to drink of the enticing cocktail that is denial mixed with optimism and love. The prognosis notwithstanding, there is reason to be hopeful. Because Joanne is so healthy, she may be a candidate for a blood and bone marrow transplant (the only true cure for the diseases). First conversations are being had with the transplant center at Stanford, and a search for clinical trials is also underway. (Turns out that while clinical trials used to be a last hope, today they are often the first line of defense in treating many cancers.)
The Medical Journey
Joanne first went to the doctor because she kept feeling winded and short of breath. On long hikes, she blamed getting older, but when changing the cat litter became a source of exhaustion, she decided to talk to her doctor. Within weeks, she got this daunting diagnosis, was immediately ushered into chemo, and the search began for long-term solutions. In the months ahead, Joanne will go through several rounds of chemo. The immediate risks will be infection. The major side effects are fatigue, nausea and other annoying stomach things. Her doctors are insisting that she stay active and eat a very healthy diet (no sugar, no refined flour, and lots of nutrient rich vegetables, fruits and proteins). She will also need emotional support and comfort during this time...easy walking buddies, hanging out at the house, movies, and of course lots of prayers and positive psychic energy! After the chemo the road becomes particularly rocky as the medical heavy-lifting of blood and bone marrow transplant takes place (provided that a match is found). And finally, a well-supported recovery.
I think many of us struggle with how to express our support. What is the right thing to say? (There is no perfect thing to say.) What can we do? (We can never do enough.) From Joanne’s point of view, keeping her company and knowing that we are out there, caring, concerned and available is so very meaningful. There is a comment board on this site for you to post your thoughts, inspiring quotes and well wishes. There is a photo board for you to upload memories. When the road gets tough we will post “asks”… rides, meals, day-to-day things.
The friends and family of Joanne make up an amazing village, which is of course a testament to the amazing person she is! WE will get through this together!