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.

IMG_0612

 

IMG_0621

 

 

 

 

 

 

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.

IMG_0630

IMG_0619

 

 

 

 

 

 

 

 

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.

IMG_0582

IMG_0584

 

 

 

 

 

 

 

 

 

 

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!!

 

Picture 1

 

Advertisements

A Little Background

Seven years ago I was a new mom for the second time with Skyler. He was just 16 months old and I was tired, but not overly so.  That summer my family had just returned from a trip to England where a cold had been going around. When we came back home to Kingston, I assumed the stuffiness and pounding in my head, tiredness and inability to sustain more than 2 shots of Irish Ladies Whiskey were the result of this cold. And yet when friends suggested I join them at the Wolfe Island Music Festival one day, I turned them down because I just didn’t feel up to it. How long can a hangover last, anyway?

By mid August, I had decided the excessive bleeding I was experiencing was due to the IUD I’d had inserted in an attempt to avoid a chemical version of birth control. After its removal, I continued to bleed (not profusely, mind you, just more than I was used to at that time of month) so I went in to have it checked out. I had a CBC, a standard blood test that measures the amount of red blood cells (carry oxygen, remove CO2), white blood cells (immune fighters) and platelets (contribute to clotting). Not long after I was asked to come in for a second test. This had me curious, but not alarmed. Until the doctor asked me how I had gotten to the clinic, and whose eyes widened when I said I had walked. “But you have a blood count of 66!” I stared back blankly. How ignorant are we that we do not understand these things? “The normal count is 120. I can’t understand how you had the energy to walk here!”

This was the beginning of so many revelations and confusions that would colour my life from that point on.

Things started moving quickly after that, and I went into Kingston General Hospital to see my hematologist.  Dr. Swain happened to be the right fellow as he captured immediately what the problem was. From my research I have learned that others aren’t so lucky and are passed from doctor to doctor for years, while the disease marches on, until they are properly diagnosed.  Dr. Swain told me in no uncertain terms that I would not be going camping that weekend and that I would need a blood transfusion right away. Technically these are infusions, but the other term is more commonly used, so this is what I mean when I mention this word.   It will come up a lot.

After the transfusion I felt… well, terrific! It was not until then that I realized how poorly my anemia had become. That night I went dancing with friends at a venue at the Kingston Blues Fest. I had come to realize that I had taken a long time to recover after Skyler’s birth, that over time my body had been adjusting ever so slightly that nothing really seemed abnormal, just something one would expect after pregnancy.  Seeing the difference after this first treatment was a revelation.

I should mention that after the first transfusion I had my first bone marrow biopsy. Let me tell you ladies, if you have ever had an epidural, and I did with Jessie in Singapore, it is worse. The anaesthetic that is supposed to numb the nearby tissue hurts like hell, you can feel the drug spreading and you wonder when you are supposed to not feel anything. Then there is another needle that goes into the hip bone. Yes. I can hear you cringe. Did you know bones have nerves? Then the kicker, a “corkscrew” device that is screwed through the bone and into the marrow. And yes, that has nerves too. Unfortunately, the first mining operation did not produce much of a sample, so a second attempt was made. I did not pass out, but I used all of the mental imagery and breathing I had learned over the years to help me through it without breaking out into a primal scream.

On August 30, 2004, Pete and I had our first appointment together with Dr Swain. His initial pronouncement was something I hear is common for people like me. His words: “It’s not leukemia” offer a false sense of hope. He had diagnosed me with “a rare and serious disease” called Aplastic Anemia. You can look it up here http://www.aamac.com or here http://www.aamds.org.  The tell was that all three lines of blood cells were very low. Not only was I anemic, the cause of the breathlessness and bleeding, I also had few infection fighting white blood cells and few platelets, which was attributed to the plethora of slow healing bruises that I apparently didn’t notice.  No amount of iron or other supplements would fix me. I had two options: 1) IV and oral immunosuppressors in the hopes that they would kick-start my immune system and 2) bone marrow transplant, for which in this case I was apparently not a good candidate due to my age (as in too old).  In 50% of the cases of AA, the cause is idopathic, meaning undetermined, though there are three agreed upon culprits: tobacco smoke, benzene exposure or excessive radiation. Now I am not a smoker, though I will confess I “dabbled” in my late 20’s, I don’t habitually handle gasoline or other toxic chemicals and the only possible excessive exposure to radiation would have been in Romania when I had broken my leg in ’97. That is a whole other horror story…and I should mention that before that incident, I had never been in a hospital.

While trying to understand this diagnosis and get on with life, the inevitable steps of crisis began. Denial. Sadness. Anger. Bargaining. Fear. Guilt. Depression. Acceptance. A whirlwind of thoughts and emotions that wove through normal daily tasks and inevitably affected family dynamics. These phases come about in a constant barrage, in differing orders and intensities. During the acceptance stage, I felt strong enough to investigate things on the internet, contact lots of patients and specialists, gather my wellness team which consisted of, other than my hematologist: two naturopaths, a chiropractor, a massage therapist and even a Reiki practitioner. Later the list would build as my condition became more complicated. Each of these helped tremendously in my healing. I should add that having an advocate present at any doctor meetings is key as so often you as patient are confused and overwhelmed and just don’t know the questions to ask or understand the ones answered.  I kept track of my CBCs for years on a ridiculous Excel graph that is impossible to read properly.  Whatever you can do to empower yourself as a patient, do it. Stay informed. Take notes. Ask for help. Keep records of as much as you can. Journal and let your emotions and thoughts flow. Write down and try to interpret dreams. Recognize that healing is not just of the body but of the mind and spirit as well, and do not shy away from these.

During the period from September on I was even more vigilant about avoiding any junk food, keeping sugar way down, avoiding strenuous activity and automobile emissions, taking liquid iron, vitamin C and Omega 3 fish oils.  I had to be careful with supplements however, as AA is an autoimmune disease– the immune system is attacking the bone marrow. Boosting a malfunctioning immune system would be like adding fuel to the fire. It was a fine line. In the end, I came to learn that supporting, rather than boosting the immune system was the strategy. I can say that I have learned more about immunity and physiology than I ever expected I would need to know!

End of Part 1

Share

Share