Halfway!

Hello all! This marks the 6 months since my bone marrow transplant! Wait, was that me? It seems so long ago. Last night Jessie said it was hard to remember what it was like before I went to Ottawa. She remembers I was weak, not necessarily sick, but not like I am now, the only “tell” being my hair.

Lately I’ve noticed my eyebrows are coming back. The hair on my head is fuzzy and soft. I have done some online research, but was disappointed to not find anything about the benefits (or not) of shaving to encourage stronger hair growth. Even the docs had nothing to say on the matter, commenting that it is something no one had ever asked before. (?) So I decided to do it, and in the competent and loving hands of my daughter, I had my first buzz cut. Now I will just let it grow out, and it will be a mystery to all how it eventually comes in.

To celebrate my half year, the kids and I went to see The Dark Knight Rises.  We did a bit of (school) shoe shopping afterwards and I was inspired to buy myself a pair of Catwoman boots! It reminded me of a time when I felt it “wasteful” to even think about buying anything for myself. Fortunately, that was another time, and, really, another life ago. Besides, these boots rock!

My last clinic visit in Ottawa was very positive and I seemed to have gained almost 5 pounds! I don’t need any more, thanks, as I am finally finding clothes that fit me just fine, albeit smaller than I am used to. We’ll see how far my metabolism takes me. In the meantime, I have energy to be on my feet pretty much all day, as we witnessed during our weekend in Niagara Falls, our first road trip in over 6 months. Yoga has fallen by the way-side, as have my weights, which is prone to happen during holidays when schedules are scattered. We spent lots of family time at the cottage this summer, and slowly things are winding down as September, and school, approaches.

I wanted to go back to a topic that continues to astonish me and frustrate me a little as well as to its lack of public knowledge. Imagine how much one body is worth to others. The miraculous difference between a BMT and another organ donor is that the donor is alive and will continue to go on living once their marrow or peripheral stem cells are harvested. Donation of any organ, be it a physical organ or blood or bone marrow, to be implanted in some fashion into another human to heal a disease or physical trauma is a miracle of science.  I can’t say “modern” science, because it isn’t really. Organ transplantation has a surprisingly long history, so it is shameful to see how far behind some countries are in this area. But progress can sometimes be slow, often because it is bogged down by red tape. One has to wonder where the science of transplants will progress to next!

Last month a couple of similar stories burned through the web about some men who had conquered AIDS by having a bone marrow transplant. One of them is the so called “Berlin patient” who is claimed to be the first person cured of AIDS.  Timothy Ray Brown is interviewed on Democracy Now where, as well as detailing his experience, he also reveals the incredibly underwhelming response to his case and how top medical journals chose at first not to publish the story as it seemed to incredulous. Brown has recently announced the formation of a new AIDS foundation in his name.

News networks also followed the story of two more patients cured of HIV after a bone marrow transplant. In each of these cases it is important to note that this was not an easy decision to make, and it is not something recommended for anyone with an autoimmune disease as the risks are too great. These patients qualified because they had leukemia or some other fatal blood disease, so they had few options at hand.

From what I have learned so far, using stem cells from umbilical cords is excellent insurance for potential donors if the need should occur in a family member. Only within the last few years has Ontario begun to store such cells from childbirth. It is up to the parents to decide how to go about this, and they must do some ground work through their caregivers to pass on their request to the appropriate company. Patients need to sign up for this and it is their responsibility to set up collection and storage. More information can be found at the Cord Use Foundation, Lifebank USA .  In 2010, a Canadian version of Lifebank  became the only accredited Canadian cord bank. When my son was born in Kingston over 9 years ago, stem cell collection was not an option. More than once I wondered if it might have been useful to me, but I was told that baby stem cells do not hold the capacity to help an adult marrow transplant. But with the technology growing as it is, it might have been possible to have multiplied those cells to help me. If you or someone you know is about to have a baby, I strongly recommend you look into cord stem cell storage. It is good health insurance for you and your family.

I am at the point now where there will be little more to report, so unless something newsworthy or personally worthwhile comes along, I won’t be blogging as regularly. No news is, in this case, good news! Thank you for reading, learning, commenting and letting me know this was the right thing to do so others can learn as well. I am lucky to have the time and capacity to spend time on information gathering and dissemination, and have been pleased to create this blog for readers. You’ll probably see me again around Christmas time or mid February, my first anniversary!

Thanks for your support!

In health,

Sus

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