At the end of a spectacular and full summer, I was revisited by the specter of bone marrow deficiency when I was asked to come in for another biopsy, a request from my new hematologist, Dr Dudebout. Two weeks later Pete and I were in her office to find out the results, which indicated an “evolution” to MDS or myelodysplasia syndrome. To say the news was discouraging is a serious understatement. As she talked about options, of which there are only two, drug therapy and transplant, the latter of which is a high risk cure, I found myself shifting focus over her shoulder to the view beyond, the lake I never, in the entire time interred as a patient at KGH, had a view of. It would have been nice. Hadn’t I deserved that? Well shit. Now what?
The one advantage of this new diagnosis is that we know what to expect. And I know I don’t want to go through that again. In the 7 years since my first diagnosis, patient support and education about bone marrow disease has increased and improved dramatically, as things like AA and MDS become more known. These diseases have always hung on the coattails of cancer research and development, and as such have been also overshadowed by them. Now there is incredible online support through AAMAC and the AAMDS Association, the latter of which this year offered free informational seminars across the US with talks that are eventually archived online for easy access. This year for the second time, One Match (LINK) is running a bone marrow drive across the country, making a competition for universities to recruit the highest number of donors to go in the registry which, I was relieved to hear, has over 15 million registered donors around the world.
The drug of choice that I will be taking is azacitidine, aka Vidaza. Its primary purpose is to increase all three blood lines and destroy and remove deficient cells, allowing blasts (immature cells) room and opportunity to grow properly in the marrow. Did I mention there is one catch in my diagnosis? That would be a chromosome abnormality (monosomy 7). Like aplastic anemia, it is not inherited but acquired. Culprits are the same as for AA: benzene, chloramphenicol and excessive radiation. I was aware in Balikpapan that the compounds were being sprayed by pesticides (malaria was one of the risks of living there) so I was vigilant about closing the air vents and washing down the patio furniture. But in an example of extreme synapse lapse, the risk of exposure somehow never occurred to me in the community pool, which I would frequently use, before, during and after pregnancy, thereby exposing Jessie as well. The more I learned, the more I cringed. We now happen to live in the presence of wind turbines which rose two years after settling on the island, a solar panel that we thought would be a good investment that happens to sit above our bedroom, and last year Hydro One installed “smart meters”. We cannot exist without WiFi. Unless one lives in a bubble or a remote Himalayan village, it is impossible to avoid electromagnetic frequencies (EMFs).
Now Vidaza can indefinitely maintain my blood counts, but at the cost of possible long term side effects which are too numerous to mention. It is a bridge to a cure, which is bone marrow or stem cell transplant. It would mean “rebooting” my marrow and immune system from scratch. It is hard not to look at the statistics of survival, numbers that I happen to know are low because of the compromising conditions most patients who with MDS have like diabetes, heart disease, liver problems. To my advantage are age, disposition and general health.
But shit, it all still feels like it is happening to someone else, something my new best friend Dr Huebsch, BMT specialist in Ottawa, mentioned was normal. After the new diagnosis this summer, I was sent to Toronto to meet MDS specialist Dr Buckstein at Sunnybrook. We were very impressed with the facility and staff. But it is Toronto– farther away, horrible traffic for what will become regular commutes for Pete. In early October we met Dr Huebsch in Ottawa Hospital, just a few kilometers up the road from the great vegetarian restaurant The Green Door, beside a couple of esoteric stores that I love. Our experience at Ottawa Hospital was very positive– super fast, efficient, knowledgeable staff and a doctor whose main goal is to help create the optimum healing team for me, from socio/spiritual to physical and emotional. He and his team want to get to know me well so that they can develop the best way to do this. We have two more visits to help determine this, and the procedure will likely take place in the new year. Not rushing means taking some time to read up, ask questions, make preparations and get organized. Much of which I have left to the end or not done at all, as a true procrastinator will do.
In the meantime, I revisited my trusty naturopath Susanna. My regimen now includes:
- Parathyroid (calcium absorption, 2 per day)
- D3 (8000IU)
- B12 and folic acid (1 per day)
- Cyruta Plus (vitamin C, 6 per day)
- Vasculin (muscle support and circulation, 4 per day)
- DGL (platelets and intestinal health, 1 per day)
- Dessicated Spleen (blood vitality, 2 per day)
- Concentrace (trace minerals, a few drops in water per day)
- Digestive Enzymes
- Krill Oil/Omega 3
- Shark Liver Oil (platelets)
- Homeopathics– Sanguinare Canadensis (3 pellets a day) and Hypothalamus (2 pellets/day)
- Bio XII (one a day)
- energy work
- zapping, daily walking
- yoga when possible
- liver detox
- herbal teas
Last week I added two other practitioners back into my team, Laurie who does live cell microscopy and RitaSue who is a Nikken wellness professional. Live cell microscopy is different from what goes on in a hospital lab where blood cells are measured quantitatively and tend to be dead when this happens. With live cell, you can actually see the blood cells in a monitor, monitor their vitality as they move from place to place. In the past, I was pleased to see an improvement after taking certain supplements; for instance, Omega 3s definitely helped with the integrity of cell membranes and they looked healthy. Last week they didn’t look so good. Even though I have been taking supplements, I had also just been flying so there was obvious free radical damage present, and I also saw what dysplasia looks like in a cell. We found very few white blood cells and virtually no platelets, not unexpected but alarming just the same. I went away with 2 helpful supplements, Osteodenx which is designed for bone health but is also for marrow, and something I found helpful last time, and lactoferrin, which helps with iron absorption and complements the Osteodenx.