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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In the News

A few things have prompted me to add a post here, even though there is not much new to report on what is going on with me (more on that later).

As you may have heard, Robin Roberts, news anchor from ABC’s Good Morning America, recently disclosed her diagnosis of MDS and her ultimate path to a bone marrow transplant, for which her sister is a virtual match. The Aplastic Anemia and MDS Foundation in the US  has responded promptly (as did I on Robin’s Twitter last night) to offer support and information. Robin was clearly quite emotional as she faced the camera, supported by her colleagues. She is lucky to have found a donor so quickly, since this can be a challenge for non-caucasians. As a result of her plight, many people have already responded by pledging to join One Match and Be the Match. This in itself is fabulous, and the fact that Robin is a high profile celebrity will bring more attention to this disease, something that we can, in a twisted irony, be thankful for. In my research, I discovered that other famous names that succumbed to MDS were Carl Sagan, Susan Sontag, Roald Dahl and Michael Brecker, among others.  Since then, there have been leaps and bounds in the fight against this disease, as I am fortunate enough to attest, for only a couple of decades ago I would not have been so lucky. But it is still very uncommon and takes a back seat to other diseases like cancer.

What I found interesting is the almost certainty that Robin’s disease is attributed to her chemotherapy for cancer treatment five years ago.  As far as I know, the only definitive cause of MDS is exposure to benzene. Blaming chemo is quite a leap, though I wouldn’t be surprised, as it does a number on the body and can lay latent until the right trigger comes along. What is also curious to me is that Robin actually made the average “life expectancy” of cancer treatment, only to succumb to something even worse. I hope that Robin is able to document, as much as she comfortably can, her journey to teach others as this disease gains more prominence and ultimately more funding. She has a lot of support and a great attitude, and I wish her all the best in her recovery.

Next I would like to do a “shout out” about a special event tomorrow, June 14, which is World Blood Donor Day! The WHO’s website declares “Every blood donor is a hero”. If you haven’t yet, please consider donating blood and/or  go to OneMatch to see how easy it is to join the bone marrow registry.

Now back to me. On Monday, during an unusual heatwave of up to 40 degrees with humidity, we drove to Ottawa for one of my tri-weekly visits to clinic. Last fall the car’s A/C blew out, so it was a particularly challenging ride for me, especially as I was in the sun both ways and on the last leg home had to climb into the back seat to avoid the blazing sun.  We came away from Ottawa knowing this:

* my numbers are awesome and responding well to the drop in Tacro

* after two more weeks of 0.5mg per day of Tacro, I will stop it altogether! Then we have to watch for symptoms of GVHD which most commonly manifests as skin rashes.

* since the next visit happens to fall on a holiday and it takes some time to organize any medical procedures, it has been decided that we can wait four weeks till my next visit so that I can have my Hickman removed! Apparently it requires minor surgery.

* I can slowly start driving again, short distances first, then later I can drive into town, but not long stretches. This takes enormous pressure off of Pete who has been my chauffeur for months.

* my eyesight seems to be deteriorating of late, making even this blog difficult to read as I type. It is recommended not to get eyes checked until six months, because they could change again, so I have a couple of more months to wait. Concerns are cataracts that commonly occur after treatment.

The changes I don’t notice in me are certainly noticed by others, I suppose just as a new mother notices the rapid growth of her baby after a few days’ absence and not as much on a day to day basis. The kids claim that my hair is coming back and I think they are right, though it is more fuzz than anything else. Others have noticed how I am pretty much back to normal in terms of energy and temperament and that I am looking good, so I appreciate the flattery! I have noticed my energy levels last longer, though too much walking or standing around can still cause exhaustion. I no longer see as many ribs as before yet my weight actually dropped a bit according to the scale at the clinic. I even allowed some flowers that broke off during the gardening weekend to come into the house because they were so beautiful I couldn’t resist. And today my hands made contact with some black earth as I tried to finish topping up a planter. Gasp! I think as time goes by and I am gradually feeling better, we have become a mite complacent. I am still careful to wash hands and use sanitizer when shopping or away from home. But I tend to eat what I want, even if it is not what I would normally eat (aka junk food) because I am more interested in gaining weight and feeling satisfied when I eat. This also means we are eating less organic and are being a little less green in our daily habits. I suppose I attribute it to the fact that I am dealing with more important things right now.  Later, when I can re-channel my energy, I believe I will go back to that more “virtuous” path. But for now we go on a day by day basis. No more occasional morning nausea/vomiting is a cause for celebration, a victory that I believe came from the drop in Tacrolimus. One last thing about that: it was not until a few weeks ago that someone brought up a very relevant and useful suggestion that could have dealt with the nausea and vomiting I had been experiencing earlier, and that was marijuana. It shocked me a little that at no time did anyone make this suggestion at the clinic, nor is it written in any of the official literature or handouts, yet hospitals and doctors are in agreement that this is something that can very definitely help patients. Maybe my symptoms weren’t severe enough. It reminds me of a conversation I had with a woman recently who said she had been battling low blood counts for years, but because they are marginal and not (yet) life threatening, she is not able to get a timely appointment with a hematologist. This is such backward thinking, to not put the focus on preventative medicine.

Next blog will probably be in July. Summer, yeah!