Daily life flies into brick wall. You go along, you don’t feel well, you finally decide to get some tests and at the end of the tests you get the Diagnosis: Philadelphia chromosome positive, Acute Lymphoblastic Leukemia (ALL), B-cell.
Not knowing what to think, you take a day to prepare, not knowing for what or how long or anything.
The first few days here were so busy that I hardly had time to breathe. Things are slowing down now. The bone marrow biopsy confirmed the presence of leukemia. A spinal tap injected chemo directly into the spinal fluid. They tested every little function of my body, including an ultrasound of the heart. When I mentioned I might have a sore throat it prompted a throat swab and high isolation for two days so that Steve and Elena both had to wear masks and gloves and gowns to be in my room. It was a great relief when that came back negative.
I have a Hickman Line, basically a type of central venous catheter used for the long-term administration of substances such as antibiotics, blood transfusions, nutrition, or chemo. The Hickman is attached to me permanently and it spares me the bruising pinpricks of numerous blood draws.
I have a cocktail of things regularly pumped into me. And they draw out blood for testing on the same line. My IV pole is now my tether and my constant companion. I have named him Herman and I try not to mind his little beeps and sounds. I drag him around for a walk twice a day, 10 rounds around the hall equals a mile. Two miles a day is my goal for now. I don’t always make it. It is a love hate relationship, but through Herman, I receive not only all the chemo (well some is oral too) but also life saving fluids, anti-nausea, anti-fungal, antibiotics, etc etc. So far, I have also received several blood transfusions through Herman. Blood clotting agents, Vitamin K, whole red platelets. All those times you have given blood…I am the one getting the benefits now. Thanks for that, by the way.
The steroids they give me cause an insulin resistance that spikes the blood sugar. So for the first time in my life, I submit to blood sugar tests and then get an insulin shot before I eat. I am humbled by this, knowing home many people walk around with full blown diabetes everyday. We all have our battles.
I can’t say enough good things about WHERE I am. If I had to come down with this, it is the best place to be. A friend of mine emailed Brian Drucker, who is one of the highest authorities in the field of Leukemia. Here is what he said: “The treatment for acute lymphoblastic leukemia can be pretty brutal, but the disease has a reasonably high cure rate. A bone marrow transplant might also be considered if she has a good match. Since she has the Philadelphia chromosome, Gleevec or one of its relatives would be used. UW is a great place for her to be.”
Strange comforting words, in their own way. I just have try and survive the treat. I am on a Gleevec relative called Cyclophoshamide and the newest and best medicine, so the big deal now is to keep me tolerating the chemo while it is killing the leukemia. I hope onto the doctor’s comment that “the leukemia cells are literally dying by the hundreds of thousands right now.” Along with the rest of me.
We have a new definition of Home. Home to the doctors here is a place they can send me which is within 20 minutes of the Seattle Cancer Care Alliance (Fred Hutchinson Center). This treatment for Acute Lymphoblastic Leukemia is interspersed with hospital intensive chemo and blood transfusions for 5 days, followed by me being able to go “home”. Then for 2-3 weeks, we watched the blood counts and hope they come up. When they do, and I feel better, they will hit it again, back in the hospital.
So part of the new normal is a small cottage that has been made available to us. The island community, has helped us create a place we will call the Cottage; And that will be home for awhile. By summer, I may be ready –hopefully–for a stem cell transplant. That will require a good 2 weeks of hospitalization and then more time at the cottage. My goal is simple: If I can fight back all the things that are trying to kill me, and my body can recover, I may granted a leukemia-free life again.
Jack the dog has gone to live on the island with Josh and Julie, our house sitters. I want you all to know how deeply I feel the connections that I have been showered with. Thank you. My nights have been so difficult with nausea that the days also pass in a blur. Thus, I hope you might understand that I am not up to entertaining visitors at this point. The best for me really is email or snail contact right now, rather than phone calls. Steve and the daughters have been utterly amazing, so tender and connected. I am indeed a blessed woman. And I am most grateful for the love and support of my friends and community. So many of you have written some of the most wonderful things I have ever read. My own responses will be slow and will fight with fatigue and nausea. But keep them coming. They mean so much.