An Anniversary

 

This winter has been a time of housekeeping. My first follow up of 2013 was very successful– an A+ in wellness! Everyone is pleased with my progress and vaccination records made in Kingston (thanks to awesome nurse Rhonda!) and my general compliance with protocol. I was reluctant to follow through with dental and eye exams, but took care of that eventually. My teeth were remarkably good, said the hygienist, considering I hadn’t been to the dentist in five years… how did that happen? I assume I hadn’t gone because I was worried about infection and low platelets.  Now I have plenty and it was just fine. I suppose it is an automatic reflex for the hygienist to say: So we’ll just take a couple of X rays…. to which I said no immediately. I feel I have had more than my lifetime’s share of radiation, than you. My bone marrow density test was completed and I will meet with my family doctor about how to proceed with bone maintenance, since I am at higher risk for bone issues due to steroids and other chemical onslaughts. I’ve been reading up on this and am not keen on the standard treatment, Fosamax, for a few reasons, so I will discuss alternatives with my MD. At the 6 month post transplant mark, July, I will have a follow up lung test, and a few more booster shots for general upkeep.  I was told at some point that I must now have flu shots for the rest of my life, but I need to investigate this. At what point can I say that my immune system is up to par?  I am now able to reduce meds and am down to half the Acyclovir and one last round of Septra. I have not had anything remotely like a cold; must I have to continue to baby my immune system?  How can I find out if it is working properly if it is continually being supported? My supplements at this time are vitamin C, digestive enzymes, a multi, a calcium/magnesium blend with trace minerals and as I wean off the antibiotics, some probiotics to get the intestinal bacterial balance back. Should I welcome a cold to see how things go? I do still need to check in if I ever get a fever, so I guess that independence is still some time away. Considering all this, however, I am free to travel, so next month we are all going to San Francisco where Pete will be conducting a workshop and the family will spend a week exploring the bay area. My only caution is to be sensible during travel, especially on the airplane which we all know is a cauldron of germs. I have missed traveling, so this is a very special opportunity for me.

One odd thing I thought I’d mention was a sensation I had last week writing on my iPad, something I rarely do because I get frustrated with the keyboard. As I was typing, I had a familiar and very unwelcome sensation come over me, a slight nausea that was a throwback to how I felt a year ago when I was starting my blog. It passed when I put the iPad away and turned to the laptop. But that muscle memory response was curious. I have a similar reaction to eggs, and have only just recently been able to stomach the scrambled version.

Physically, my weight has fluctuated a few pounds up and down from what I was before transplant, but has positioned itself in different places, meaning the jeans I had to buy before are already way too small! Meanwhile, my hair is coming in nicely, I suppose, really dark with lots of gray, that I had trimmed last week so that it looked the way a pixie cut should look, instead of an unruly combination of stiff and downy strands. Still not comfortable with the color, but others compliment me on it, so I can live with that until I can do something about it. Maybe eventually I will try an Ellen hairdo!

My other BMT colleagues carry on with much success: Robin Roberts will be re-joining GMA next week and she looks fabulous. I am so pleased she has done so well. Reading her account in People Magazine brought back some unpleasant memories, but there’s nothing like making that instant connection with someone who has been through the same as you. Amit Gupta continues to be an advocate for bone marrow registration.  He spent some quality time driving across American by motorbike (which totally rocks!), traveled to Japan and is back in San Francisco working again at his ever-ingenious business, Photojojo.

In other transplant news, it was interesting to read that there was a record number of transplants in Ontario last year. This included all organs other than bone marrow (yes, it is an organ)– mostly liver, kidney, lung. There are two ways to look at this story– it is good that such transplants are possible and accessible, and successful, though changes in reports from medical centers can influence such numbers. It was reported that there had been a 15% increase in organ donation, but there are still hundreds of patients who do not get the transplant they so desperately need, and many people are still unaware of how to proceed with organ donation wishes.  The other side of this story tells me that more and more people are requiring transplants, which I believe says plenty about issues that affect our health as a culture, something I will not get into now. The simple fact that organ transplants reaches into our radar that is otherwise occupied with a combination of inanities and things of importance is key in recognizing that this is a serious issue that we can actually do something about, even something as simple as completing the organ donation card that comes with your driver’s license or going to the Trillium website in Canada or, if you are in the US, to look up your state and organ donor information. I do not have actual statistics on Canadian bone marrow transplants (I am working on that and will report back) but in the US there is a very comprehensive, state by state list of transplants by disease that is quite fascinating.

Last night (the 16th) Wolfe Island rocked! To celebrate my first anniversary post transplant, only two days ahead of my other birthday, I chose to have a dance party at our home. My thinking was, next year is a “zero” birthday, and not one I am particularly looking forward to, and since the transplant anniversary was to me more more important, I decided to combine the two and have a full on blast. People came from near and far to dance, drink and be merry. I had spent a few weeks creating a party set list– fortunately, it was a hit, and everyone had a fabulous time! I just wanted an excuse to dance , which I did for four or five hours, I am not sure because I wasn’t paying attention to the time. All I know is I was active most of the night and when I went to bed my feet and knee were aching and my body was buzzing. I have to say, my new marrow got quite a workout!  I tried to stay hydrated with water and drank only a little at the beginning, because I wanted to not get sleepy. Once I caught my second wind it was hard to stop! The kids put up streamers and later created an impromptu and quite lovely birthday sign that they had hanging from the staircase all night and towards the end of the night the music stopped and everyone sang Happy Birthday to me with a single candle on a piece of left over cake!  By 1:30am everyone was gone and we were in bed and I could not sleep for at least another hour because now my mind was busy and full of thoughts.  To be able to have the opportunity to be this active, to have all my friends in one place to celebrate with was a treat.  Everyone there had in some way contributed to my wellbeing, and for this I will always be grateful– this party was not just a chance for release and celebration, it was also an opportunity to show my gratitude to my community.

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As the last few weeks led to this special day, I found myself typically reflective. Moments where I would catch myself remembering where I was a year ago, how unsure everything seemed. I couldn’t picture what it would be like, I just focused on getting by one day at a time, sometimes one hour or even minutes at a time. Each of those accomplishments like taking a bite to eat, getting dressed, taking a bath, walking, pale compared to where I am and have been for some time. Now I have moments where I recognise the ease with which I do something– here I am cross country skiing, here I am taking a shower and not worrying about holes or tubes in my chest, here I am enjoying a little Canadian whiskey, my latest occasional indulgence I am just appreciating for I am not a liquor person, here I am enjoying a real hamburger or Thai curry chicken, here I am dancing my face off. I consider myself incredibly lucky to have recovered as well as I have. I see myself in the middle of the BMT triad, with Amit Gupta a month ahead of me and Robin Roberts a few months behind. All of us are success stories that more people need to hear about.

A New Year

Greetings all, and Happy Holidays!

By now you will have realized we have survived all those apocalyptic predictions. What I do believe is that life goes on, as it always will, that there are and continue to be changes, some subtle, some less so, as we move forward in time. The planet is changing, for whatever reasons one might want to debate, and I will not do so here, but the fact is that it’s happening and we need to take some responsibility. One thing I’ve finally done is build an emergency preparedness kit that Canada and the US have posted online. Mine happens to be a mix of various other sources. When things like hurricanes happen too far away to really have an impact, or predictions of dire situations come and go, we tend to get complacent and chalk it up to living in a bubble of non-consequence. Around the world, even right next door, people have been suffering in one way or another, and though we here are aware of it and mourn or empathise and perhaps act in some selfless way or another to counter this pain and destruction, we quietly chalk up another moment of being blessed by good fortune. So it wouldn’t hurt to be prepared, just in case. Our families, our lifestyles, are still basically untouched by the crises around us, and it would be prudent to acknowledge our good fortune with gratitude to whatever force you care to believe in.

But I do digress! Today I sit in a lovely common room at a B&B in the Quebec Gatineau, just north of Ottawa. Snow has been slow to come to the home front, but just an hour or so north there is storybook-like snow, the kind that is heavy and rounded and piled up on branches of evergreens and surrounding hillsides. This is Wakefield, a little village on the water, at the foot of the Laurentians, surrounded by covered bridges and peopled with friendly and artsy folk. It is picture postcard perfect whatever season.

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When Pete and I were situated in Ottawa earlier this year (another lifetime ago), we took the warmest day of that late March to drive to Wakefield. It was my first real outing, and I loved the fresh air and beautiful landscape. You may remember a picture at the red covered bridge, where I am wearing my floppy Waldo hat. Here we are at the same bridge, 9 months later.

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We had been here before, a couple of years ago, and loved it. Some people from the island have since moved here and I can see why. It has the same familiarity and quaintness as Wolfe Island, but is  much more trendy and is close enough to Ottawa which has more opportunities and conveniences than Kingston.  We were lucky to find availability in The Grange, even to book all four rooms, so we have it all to ourselves. Everyone else is off skiing, and I have time to write a few thoughts I’ve been nudging over the past several weeks.

In terms of health, I am progressing nicely. Perhaps progressing is a poor word choice, since I have felt completely fine, “cured” as it were, for months. But now, even the small rashes I had around my ankles, attributed to GVH, are gone. That leaves nothing, symptomatically speaking. My hair is coming in and is at the point where it looks like a perfectly normal “pixie” style haircut. Not crazy about the gray, but when I get a chance, if I don’t really get used to it, I will do something about that. I am curious about how it will fill out, as I am noticing a definite body building at the top and back.  My weight has stabilized; remember when I was told my body was going to “re-set” to its original weight, which I took to mean pre-pregnancy since that had been my weight most of my life? Well, it turns out it “re-set” to post pregnancy, which is not that much more but enough that all the jeans I re-bought because my others were too big are now way too small. It certainly wouldn’t hurt to do some muscle toning, now that I have some stamina. One in a while I run up the sloped road to our house just to see how my lungs will handle it, and though I am out of breath, I am not exhausted like I would have been, and my oxygen recovery is quite rapid. This winter I plan to do some outdoor things like snowshoeing and cross country skiing and really get to enjoy winter for a change.

Another way I know my health is doing well is because I saw it for myself. By this I mean that I had a recent session of live blood cell microscopy. These I had done in the past to see how I could improve my diet and lifestyle with aplastic anemia. Like other alternative healing modalities, it is NOT a diagnostic tool, and should be used in tandem with other procedures. Also note that an assessment is only as good as the practitioner’s expertise in interpretation, so do your research. If you look this up, you will come across some knee jerk reactions that it is bunk, with reasonable sounding explanations. However I have also done my own research, have studied cellular biology and have seen changes in my blood over time and I trust my practitioner, so I can say that for me, it made a difference. The thing that makes live blood cell analysis great is that it is a qualitative assessment. When blood is taken in a medical lab, it is usually “dead” by the time the technician gets to the sample. The purpose there is to read the number of cells, so it is a completely quantitative measure. With live cells, you can see the condition of the plasma, the plumpness and shape of red blood cells, white blood cells, platelets and other inclusions. Their condition can indicate a mineral deficiency, lack of oxygen, lack of hydration, quality of motility and other things. Plus it looks cool! The practitioner simply takes a drop of blood from a pin prick (kind of like the sort used by people with diabetes) and puts a bit of it on a glass slide. Then, just like in high school science class, a cover slide is put on top and the whole thing placed under a special microscope that transmits images to a monitor. I saw my cells slide around, glide, saw a few clumps break up and swim on their merry way; a few white blood cells were glomming onto pathogens or cellular garbage to break it down, and the plasma looked good. It was not great, however, and showed a few deficiencies that a bit of exercise,  greens, vitamins and more water wouldn’t fix. Mostly I was curious to see how my body has been doing with no help at all. Now I have seen that I do need to take better ownership of my health. I believe I have lost faith in my body and need to build that up again.

In other areas, I have grown creatively in leaps and bounds (my, that sounds like something I would have put on a student’s report card!). Having so much time to contemplate my navel, a few things have happened. As I flow with time going by, I have noticed a subtle shift in my belief system. It is too tenuous to put into words at this point, but I suppose the simplest way to put it is that things I used to believe as I grew up and matured have shifted. Sadly, they are less magical and esoteric and much more pragmatic. However, I hope to regain some of that “pragmagic” as Marilyn Ferguson puts it. I’ve spent a lot of years not trusting my body, even when I thought or said I wasn’t, and it is taking some time to get that back. This is part of the growth or rebirth. I can filter out the bits I don’t care for and nurture the bits I do. And the best way to do this is to see what creative bits I have worth nurturing.

One of them is going back to my creative “roots”, so to speak, digging down into my childhood likes and skills. Drawing, painting, and looking for a style or niche that satisfies me. I think I have found it, and here is an example.

Butter Chicken

It was inspired by a quilting artist called Susan Shie who does stunning work with special paints and fabric. I did not realize at the time I saw her stuff that it was fabric! Really gorgeous. What I love are the colors, the playfulness, the mood, and the use of words to enhance the piece. This one I made is based on the butter chicken recipe from a famous Kingston restaurant. If you look closely, you’ll see words related to the recipe, along with matching Hindu elements. It is so much fun for me to research a piece like this, to find images and words that would match the theme. The media I used are colored pencil, watercolor and ink on watercolor paper. This is something I want to pursue and have a few themes in the works.

In the meantime, here are other ideas I have explored with various media. Here is an ink drawing from this summer (Madonna):

Madonna, ink

And playing with water color pencils:

watercolor pencil

and more recently, colored pencil (Fantine from Les Mis):

Fantine colored pencil

and also a Buddha series which is made of chalk pastel. The one on the far right has real gold leaf and just became the property of a friend of mine who wanted it for her house! This photo does not do it justice at all.

Buddha series

Eventually I will upload all my art to my favourite art site. In the meantime, I am re-learning some old things and learning plenty of new ones, just by spending time at online art lessons and exploring other artists’ blogs.

I should mention one last thing that became a manifestation of sorts of closure for my illness over the years. If you recall, my diagnosis of aplastic anemia was almost 8 years ago. Treatment really only covered the symptoms and then things lay in wait as they developed into MDS, prompting my bone marrow transplant. Which I still have a hard time grasping when I see or say those words. (Small aside: at a recent community turkey dinner, I was sitting beside a local who I knew vaguely. In our conversation which followed a quick interrogation of Pete’s PhD in education, I was asked what I did. What indeed? It was an innocent question, meant to determine my career role. But I could not respond with one, nor did I feel comfortable suggesting I was a “homemaker”. I hemmed and hawed at each probing question, then finally blurted out I was recovering from a BMT. Suddenly saying those words seemed so normal, and I realized they contained plenty of success and self pride, and I felt a little lighter having to admit it. I suppose it is how cancer survivors feel when they are asked such personal questions. Some distance themselves from the ordeal by not discussing it for whatever reason, but I feel since what I have gone through is so rare and quite risky, I don’t feel weird at all about being a “poster person” for BMT after MDS. It makes me wonder how Robin Roberts is handling it.

Back to this “full circle” I mentioned. Eight or so years ago, when I was still quite weak and at my first “outing”, Pete and I went to a concert at Grant Hall, Queen’s University, to see Jane Siberry. Jane is a unique artist, quirky and spiritual and constantly evolving. You might know her for her radiant songs Calling All Angels and Love is Everything; this version is sung by kd lang, just for variety.) The song that I remember clearly at Queen’s was one I had never heard before and took some sleuthing to find, resulting in an actual email from Jane herself! In that moment, just starting to regain mental and physical capacity, I felt transported elsewhere. It was a religious experience for me. So when Jane sang it last week at the private house concert we attended on the island, I was taken there again. I realized how much I had accomplished since that first illness, and that it is all behind me, truly and completely. To have this happen around the time of family gatherings and worldly introspection makes it all the more meaningful.

Christmas this year had a very different flavor for me. Instead of a massive medical procedure looming in the background, I was able to really enjoy it and get into the festivities. It is a strange time of year, with such anticipation that culminates on the 25th of December, after weeks of music, cooking, shopping, getting together with others. There is a residual festiveness as New Year’s approaches, then it all levels back to normal. It’s a bit like having a big holiday dinner– so much prep, stress and excitement, then it is consumed, and suddenly it’s quiet. We are lucky to have had a white Christmas, and to have the snow stay. One of my resolutions is to make winter more fun for me by doing some skiing in the back woods.

Here are some holiday pics, with the kids making a gorgeous gingerbread house WITHOUT my help! They have grown so, and have always been close. I am grateful for their affinity for each other.

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And now the year ends, as it must in order to begin again. That is how life is. I’m glad to have learned that lesson.

May you all live intentionally and mindfully and love it all. Have a fabulous New Year!!

 

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A Quick Update and Issues About Going Public

Greetings friends! This is just a “filler” post because I just noticed a deadline is coming up and maybe it will help someone. This Saturday, September 29, there will be an AA/MDS Patient Education Day at  the  Novotel in North York.  If you are in the Toronto area and are interested in learning more about bone marrow disorders, this is the event for you. It is free and well attended, with speakers ranging from patients to doctors. I highly recommend it.

In other news, I discovered a few things about WordPress (that I now cannot find anymore, but I’ll keep trying) and that is Worpress Stats.  These tell me  that there have been thousands of hits on my little ol’ blog, from just about all over the world! Everywhere from Norway to South Africa, Singapore to Mexico… it is exciting and gratifying that so many people have access to this information! Ain’t the internet awesome?!

This month I have begun my vaccination regimen. Those who know me well know that I have issues with vaccines, but like everything else I’ve had to reconsider in this process, I’ve had to relent because of my situation, which is that I DO NOT have a MATURE immune system! When I was a baby, breastfed, playing in the dirt, catching things from nature, from school, travel, I acquired a natural immunity. With a new bone marrow, I have to re-grow this immunity, and short of the methods I had access to as a child, I need to do this artificially. So far I’ve had two kids’ shots, Prevnar and Pediacel, which cover things like pneumococcal (for meningitis and other nasties) and DPT, respectively. I am also getting Hep B and later will get Menactra for meningococcal meningitis, and soon, a flu shot. Instead of some poor people in the US who are going through the same situation and suffering from terrible side effects because they seem to be getting several shots simultaneously, my protocol has them spread out (sorry, I ran into these sorrowful stories when I was researching several months ago and cannot find any to share, thanks to losing all my bookmarks, but they are out there if you want to look!).  Thanks to a vigilant nurse at my doctor’s clinic who has taken me under her wing, I never wait more than five minutes to see her, there is no rushed service, she informs me of everything, records lot numbers diligently and succeeds in finding ways to reduce cost of these otherwise rather expensive vaccines. How I love nurses! So far, the only after effects I’ve had are soreness in the arms because they go straight into the muscle tissue. Brings back childhood memories– no wonder babies scream!

By now most of you have heard about AMC anchor Robin Roberts’ transplant.  This ABC newsvid includes good animation to show how the procedure works.  This has been great exposure for Be the Match and bone marrow disorders, but lately some have criticized the situation as “over the top” coverage and exploitation. I personally do not see how this is exploitive– if it had been anyone else, fewer people would have ever heard of MDS, a disease which takes a back seat to other high profile ones when it comes to support. It is Robin’s choice to publicize her situation, just as it is anyone’s who has a condition they would like to educate others about. True, here is a definite wariness if things don’t work out, but in the meantime, thousands of people have made a difference because of this exposure. To say ABC is exploiting Robin’s illness for ratings is unfair. I wish her well and support her decision whether or not to share what she is going through.
Another woman who is recording her experience with a bone marrow transplant is posting on a blog through the New York Times.  Amit Gupta, who I’ve been following,  continues to post online his progress and life experiences after transplant. He is doing well and living large!  These are all places of encouragement that are helpful to patients and their supporters and I encourage their dissemination. As another example, I just came across this interesting site that has a community seeking “bone marrow warriors” and effective ways to increase awareness about bone marrow transplants, definitely something worth passing on. If I may quote from Michael Guglielmo‘s blog posted here, “…the only strategy that is left to build a sustainable bone marrow movement is one that is built upon an inspirational story that is marketed around the country cultivating a platform that encourages others to join the registry to save a life and exposes this life saving movement to other organizations who then partner with the campaign to encourage its following to join the registry…”
Indeed.
More awareness is achieved through various organizations like AAMAC. The annual event for blood and bone marrow diseases is coming up on the third week of October– you can find info on their site. Support groups are growing across Canada. And if you like Mounties, and who doesn’t?, you can support their foundation for bone marrow awareness at the Bruce Dennison Bone Marrow Society. You remember Bruce, he’s the RCMP officer who died of complications from an unrelated bone marrow match just 25 years ago, and who inspired a partnership between the RCMP and the Canadian bone marrow registry, now One Match.
Next time I will post some picture of the progress of my hair, which is long (short?) enough for me to feel more comfortable going without. Friends have suggested I go for the total look with a safety pin in my ear and dark goth eye makeup. It could happen!
Until then, stay healthy!

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

The Last Straw

Okay, technically it’s the last tube, but it is out!

Two weeks ago I had two appointments in Ottawa, back to back. This was inconvenient as it meant overnighting in the capital, something that drew no sympathy from the receptionist who called to tell me about the date change; the surgery for Hickman removal had been Monday July 9, and here she was telling me that could not be possible, as it was for the 10th and at 7:30am. That was not possible, as we’d never get there in time from here unless we overnighted. So we arranged to spend Monday night at someone’s house and go to the regular clinic appointment and then head out early for the 8:30am surgery (which they told me when I got there was actually 9:30… really, we are in the same time zone!).

First of all, what I learned at my clinic appointment was twofold: one was not surprising, that swimming and sunshine were still verboten, and two, definitely a surprise, was about my weight. I was having some concern that I was not gaining it back speedily enough– no, I am not in a hurry, I was just wondering if it was normal to take so long, despite my unhinged and untempered diet. It turned out I was barely approaching my pre-pregnancy weight, which I had been at all my adult life. As it turns out, something about a bone marrow transplant actually “resets” the metabolism (to factory settings, I imagine). So given my normal lifestyle and no chance of future pregnancy, I should expect to reach no more than 110lbs. Now before you start groaning in mock sympathy, you should know that I have a rather small frame and my metabolism suits it. And no, I do not recommend BMT for weight loss! Consider it one of the perks of the many risks faced. But it is a fascinating concept, that the body would know how to do this. The doctors certainly don’t know why this happens, any more than they can explain how cells know where to go in a transplant. Fake moans I am sure will come from you as well when you learn that I must now replace at least half of my wardrobe!

We left that meeting with our next appointment even further apart, at 5 weeks. I will continue to take Acyclovir twice daily, and Septra twice weekly. It has come to my attention that this particular antibiotic is nationally in short supply  (a topic for another blog). I have arranged to get a few more, but I suspect sometime soon we’ll have to switch from Septra to something else until I am off antibiotics completely.

Tuesday morning we headed to Civic Hospital, a different campus in Ottawa, to be “de-cyborgized”, as Pete called it. My Hickman, once literally my lifeline, is now out of me and all that remains is a tiny hole that will close up soon enough. The procedure was simple enough– a 20 minute preparation by a pleasantly chatty nurse, then a five minute extraction of the tube by a brooding and mumbling surgeon who seemed intent on antagonizing the nurse. It was an interesting dynamic of who had the most power in the room. Before the actual “surgery”, I signed a waiver and was told by the surgeon (who did not ever meet my eye) of a list of possible yet unlikely events that might occur as a result.  One was deterioration of the tube, something more possible if it had been in me for several more months. I pictured a worm being pulled out and breaking apart. Eww, right? If that had happened to the tube, which is made of silicon rubber, it would have to be retrieved from the other end, through the urethra, a rather scary and invasive procedure. “But that probably won’t happen to you,” the surgeon mumbled not convincingly, and then he proceeded to numb the area with several pricks from a needle carrying a very effective anesthetic. Now he was free to hack away with a small scalpel at the area. I was completely conscious the whole time, at one point actually conveying to the masked man that I was in some pain. He pricked me again with a needle and went back to it. Seconds later he continued with what I pictured was cutting away the tube. I assumed this brutal treatment was directed at the Hickman, that he would cut it in half and present me with two halves. Instead he held up for me to see, as if it were a newborn, a fully intact tube which surprised me by its length (I had imagined it longer). The doc sutured the hole with one stitch and left the nurse to bandage it and clean up his workspace, something I could tell irked the nurse as this seemed to have been his job before scurrying off to the next patient.

I left feeling, being, freer than I have been in over 5 months.  Home care is now over. My energy level seems to be back to normal. I am able to be out and about for hours without any fatigue, I have not thrown up in 2 weeks, the other night I went out to a gig and had a glass of wine with friends, all on my own! It was fabulous. It’s still unclear if and when I will still experience any GVH symptoms, so we’re not completely out of the woods. But given my progress, we confirmed that it is a good sign that things will continue smoothly. In a few weeks I will be celebrating my half year. Time has been hard to navigate, from my weeks in Ottawa, the summer starting so early it feels like it should be ending when it’s not even half way. Our bodies have a natural rhythm, systems that know how to work to keep us alive and prospering. And an incredible self healing mechanism that will engage as surely as a dandelion will grown in the middle of your sidewalk, no matter what you do to stop it. That is the power of nature.

One last thing I wanted to mention was a meeting that convenes monthly in Kingston of local survivors of transplants or donors. My friend Leann turned me onto this group from a newspaper ad she happened upon. The Transplant Advocate Association is an organization developed to bring together people whose lives have been touched by organ transplant and to develop an awareness of this procedure so that more people sign up to donate. At this, my first meeting, there were no fellow BMTers, but there were at least three double lung transplants! One was a little younger than me and shared her story of surviving cystic fibrosis through a donor’s gift of two matching lungs.  Several things fascinate me about this. There are people in the world, and you may be among them, who selflessly declare, usually through signing a card that comes with a driver’s license, that in the event of their death, their organs may be donated to someone in need.  Some people choose specific organs, but most offer whatever is needed. A deceased relatively undamaged individual is capable of supplying several organs (eyes, liver, kidneys, lungs, stem cells, skin, etc) and the US Department of Health site says that as many as fifty people’s lives can be improved (or, I dare say, saved) from the organs and tissue donated by one single person. Different countries, and regions within them, have different protocols for donation. Surprisingly, and rather embarrassingly, Canada has been rather behind in national donor registries. It wasn’t until 2000 when the need for a national registry was acted upon! The government created the Trillium Registry, now called the Trillium Gift of Life Network, which is an organization designed to plan, promote, coordinate and manage the organ donation system in Ontario. Other provinces have similar set ups but even within a province the system is fractured.  And only last year, the first online registry was created in Manitoba! It is reported that over 4000 people in Canada are on an organ transplant waiting list. How, in this day and age of technology, can such a thing be possible? In 2008, the organization needed to fix this mess was passed on to the efficient and extremely active Canadian Blood Services. Yet the Canadian government offers them less than four million over five years to promote awareness and develop a strategic plan? This is an insult. Did I mention the thousands of people right now waiting for an organ in order to survive? According to the governmental report from 2009, it is mediocre indeed. Why?

Looking globally, and through a religious eye, I discovered that most religions support organ donation as it is considered a donation of life. The one country that stood out is Japan, which in 1968 instituted a 30 year ban on organ donation due to religious reasons and mistrust of Western medical practice. Fortunately, this is starting to change.  Then there is the controversy about organ “harvesting”, most notably in China. David Kilgour is a Canadian former MP (who coincidentally happens to share my birthday!) and advocate for human rights who is spearheading a campaign to draw national attention to the persecution of the Falun Gong in China. Kilgour, and his partner David Matas, won a human rights award for their work with Chinese organ harvesting. Occasionally an article about human organ harvesting becomes newsworthy, but they seem to be outdated so it is unclear, other than the work of Kilgour, how prevalent this horrific practice is internationally.

Now for some good stuff: Helene Campbell is a double lung transplant survivor who recently was made famous on Ellen and the Canadian media for broadcasting information about cystic fibrosis and transplant survivors. Yay, Helene!

So what can I do, I hear you saying! Well, if you’re in Ontario, you can make sure you sign your organ donor card that comes with your Ontario drivers license renewal. Or you can go to the Be a Donor site.  British Columbians can go here or here. This is also the site for other provinces to go to find information about registries.  It seems at first glance that the US system is also scattered across the States, but the US Department of Health site seems to be a good starting point. Countries such as Spain, France, Belgium and Italy are at the top of donor registry lists. If you want to learn more about global trends in this topic you can check out the UK organ donation site.

Meanwhile, the organ lists grow.

Give the gift of life. Donate.

Huh?

My apologies to my readers, for some reason I must have accidentally posted a blog from months ago that I guess never got properly posted? It will take time and patience I am just now out of to figure out where it belongs, which seems to be at the end of my chemo round early in the preparation period in Ottawa, so I will leave it for now. I also have to figure out how to move it to the proper place, as blogs are posted in order. Very strange. I don’t remember doing this… can I still use chemo brain as an excuse?

A Few More Things

Pete arrived today; that meant he said goodbye to the kids, which makes me sad, thinking of them going through that again. Since then I’ve been learning how to text words and images with Jess on her iPod! I am still a novice (read: e-idiot who can’t figure out where transmtitted photos taken on my iPad go) and need more time to master the Apple family. But here is one fellow who lives IT and says it saved his life. I have been following Amit Gupta since I came across his Facebook page. He is about 10 days ahead of me with his bone marrow transplant, so I am closely following his progress.  So far so good. Go, Gupta!

I realize I posted yesterday’s blog a little prematurely (waiting on those photos that never came) and neglected to proofread. I meant to add the link to the energy book I mentioned. The author has written a few of these types of books, and there are plenty out there, but something about this one drew me in. This is where I liked the idea of directing love and energy to your cells and organs.

I’ve noticed feeling a little on the edge of nausea yesterday and today. This considering I am already downing plenty of meds to avoid this. I have been provided with “extra” in case the ones I’m taking aren’t working. I am so loathe to bombard my body with anything else, but someone explained it this way: it is short term, and OK if it makes you feel better, ’cause soon you’re gonna feel pretty bad.

Today we were able to attend the monthly AA/MDS support group here on the BMT floor. At the meeting was a variety of people at various ends of the blood marrow disorder scale. It was great to meet and share with others like me, though I felt more seasoned than the first time I attended one of these at Wellspring in Toronto, several years ago.

Tomorrow is my last chemo day, so I feel progress is being made, even if my WBC are not as low as I’d expected– they seem low normal where I’ve already been for ages. My RBC transfusion certainly made a difference in energy but I am worried about my platelets, dropped now to 32. I suspect a bag of those babies is in my near future. I’ve been asked to start doing the saline washes for my mouth as brushing like normal can lead to bleeding and that leads to bacterial infection. Not much has been said about oral hygiene, other than that.  With that in mind, I hope whatever is being contained next door at CHEO stays out! I got lost today on the BMT ward during a bathroom break and found myself walking the halls past rooms and halls full of so many sick sick sick people. I realize it takes a very special person to take on this kind of career, someone extremely caring and patient. The demands on nurses and volunteers is enormous. I found out that Ottawa Hospital has an almost 1:1 ratio of volunteers to patients. It is one of the few institutions I’ve seen that matches its vision statement, and the people we’ve met so far are clearly proud of their association with it.

The Disease of the Year?

Greetings, Happy Canada Day and Happy Summer to all!  I see that other parts of the continent are suffering from extreme weather, but in our little neck of the woods it has been absolutely perfect. Something about this part of Ontario, even though we are surrounded by heavy rains, tornadoes and heat waves, protects us from such elemental calamities. This weekend was a good test of how I can manage in full sun– the gazebo is screened and offers great protection and cool breezes from the lake, there are shades on the patio that one needs to follow as the sun moves, and if it is not too wavy, I love the comfort and shade of the docked motor boat so I can supervise the kids dive bombing off the dock. I long to jump in with them, but alas such antics remain taboo for me this year as there are bacteria lurking in lake water that can find any number of entry points into my body.

I was saving this blog for the following week, after my Hickman was to be removed. But recent news events have prompted me again to post this now.  As you may have heard, we lost a prolific female Hollywood director/writer, Nora Ephron. Who didn’t love When Harry Met Sally? She is known for other works as well, and wore many other hats in that entertainment field. You may have also heard about Ms Ephron’s cause of death, attributed to leukemia. What is not as commonly known is that her leukemia was preceded by MDS, as reported by AAMDS.  The New York Times added some more detail but didn’t really put much emphasis on the blood disorder that she suffered from, which is unfortunate as it doesn’t draw as much attention to it as it could have. However, the report was fortunate to have the executive director of AAMDS explain the difference between Nora Ephron’s MDS and that of Robin Roberts (reported in previous blog). In Roberts’ case, it was determined that her MDS was caused by chemo treatments for breast cancer five years ago. In Ephron’s, it was a development that was so complicated it restricted certain treatments, namely a bone marrow transplant, and that in fact it was her damaged immune system that made her vulnerable to pneumonia that ultimately led to her death. This is indicative of how complex bone marrow diseases can be, and how important it is to learn more about them and draw attention to them for funding and research.  What I was hoping might result from Robin Roberts’ case has in fact happened, and that is that since she announced her predicament, additions to the bone marrow registry at Be the Match spiked significantly!  And while I have your attention, I should mention that the Canadian marrow registry One Match is asking for specific donations to support their pool for “ethnic males 17-35”. If you or someone you know fits this category, I strongly encourage you to go to the website to find out how to help.

As for me, my greatest success has been the end of Tacrolimus, the anti-rejection drug (second week). Does this mean I can put grapefruit back in my diet? I miss it so much!! Even in reduced strength, Tacro had been creating some kind of havoc on my digestive system, and even now on occasion I have a bout that takes me to the bathroom or omnipresent bucket in a flash. I would say such an event happens every 7-10 days, usually because I have not been paying close enough attention. In fact, I have been a little cavalier about what I put in my body these days, preferring gustatory satisfaction over nutrition. I am still underweight, so I don’t see much harm in this, and I have begun to tone up my body with weekly yoga (I know, it’s not enough, but it’s something!) and three times a week I put on some tunes to motivate me to work with my free weights. So some progress is being made. I continue to take magnesium and potassium and have added vitamin C to my regimen. Next week I will be losing my Hickman at last! Apparently it is not as simple a procedure as I thought, as it took some time to get it organized with surgeons at another clinic on the Ottawa hospital campus. It requires an overnight in Ottawa, however, as it is scheduled for 8:30am, the latest possible time.  My regular clinic appointment is the day before, later in the afternoon, so the scheduling is about as convenient as it could be, otherwise we might have had to make two trips to Ottawa. But it does mean an overnight, and we don’t know enough people in the area to make this easy for us. We have a tip or two but if they don’t pan out, then a hotel it will be.

Yay, the end of Tacro! Grapefruit, anyone? (NB: Not wishing to further patronize the pharmacy that was poisoning me, and to save money, we discovered the advantage of the COSTCO pharmacy in Kingston.)

Just for fun, a fabulous double rainbow over our house last week, reminding us how blessed we are!

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!

A Transformation, or How I Spent My 100th Day

This morning I woke up early with full sun and looked out the window and smiled. My peace/herb garden, which had overgrown to postapocolyptic proportions within a few weeks, was now an orderly, clean and fecund space, with elegantly caged tomato plants amidst large tufts of green lemonbalm and oregano.

I had been lamenting, and I admit stressing a little, over the state of my yard and gardens this year. Pete can mow the yard, but the gardens take more care and time and digging. Contact with dirt, even if it’s airborne, was one of the things verboten to me, as soil carries bacteria that may compromise my immune system. I tell you, these things are lurking everywhere! And normally they are good, plentifully inhabiting all healthy soil to provide nutrients to things that grow. It is a fascinating field, studying things in the soil, and extremely important as without healthy soil we would not survive. Literally. But it is not a sexy topic like global warming or seal hunting, so it gets little attention, as is evidenced when trying to do an online search for it.  I kind of feel sorry for the pedologists of the world, especially when they get confused for pedologists who study the developmental characteristics of children. But soil contains organic and inorganic elements whose job it is to decompose, aerate and regulate mineral uptake and bioavailability of things that plants, and ultimately us, need to grow. Soil, it seems, has its own immune system, just like plants and just like us. Creating the imbalance that is the result of industrial pollution and over farming means upsetting some very important immune systems. But I digress! You can learn more in Thomas Polick’s classic The End of Food.

So, yes, this is why even seemingly benevolent bacteria in the soil might harm me, but the thought of not having a nice garden this year depressed me too. Then my friend Vicki came up with a brilliant idea. Why not have a Garden Party, where people come to clean up the garden and do the planting? I could delegate, surveying the land with my sun clothes and wide brimmed hat and wave my hand in consultation and they would follow my instructions as my minions happy workers.  This was a plan hatched in March, and it took some time to get it going, enough that the early spring rains would indiscriminately kickstart the growth of any living thing in the soil; in no time at all the place was covered in weeds.

So yesterday, Sunday May 27, which also happened to be my 100th day of transplant (YAY!), a group of about 15 friends and their kids from both sides of the lake came over in the afternoon to work on the place. There was raking, weed wacking, trimming, planting, clearing, mulching and within a few hours, the transformation was complete. It was magical, and moving, to have this community pitch in thus.  I had been busy earlier in the day preparing sweet and savory treats, along with various liquid refreshments, to keep the troops happy and refreshed, so by the end we were all pretty exhausted. It was a perfect, perhaps too hot day, but a good way to spend a Sunday afternoon.

Sadly, I did not take any before pictures. It would have been depressing. Imagine a shapeless green and brown mass of stuff. But we did take during pictures. Below are images of the event, and its result! Thank you again to all who came. I hope this is something I can do for someone else in the years to come.