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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Vidaza: Round 1

Day 1, October 24, 2011

Got the 9am boat to my first injection appointment, and as we are pulling out of the dock I realize I forgot the form I need. Pete and the kids were to take the next ferry over as Jess and Skyler had dentist appointments. The plan was, since he has no phone, Pete would call me on my cell to arrange where to meet after my thing. When I get there I see an enormous line to check in, but there is Lou, who got the message I had messed up with the bloodwork form and showed me the chemo room, which is where I need to go from now on. I checked in, saw the receptionist highlight my name, and sat to wait. I was working on this blog and got so wrapped up I didn’t realize how much time had passed, and suddenly it is 2 hours later. I am now getting a little antsy and check in again and somehow I slipped through the cracks. Suddenly there was a flurry of activity to get me in yet then I wait another hour, after being told 15 minutes. I am now hungry, unable to contact my family, and tired of answering questions. The pharmacist asked if a BMT was off the table and I said no, then he paused. I found out later that if BMT is not an option, then the azacitidine/Vidaza is covered. This is news to me. They are going to sort it out, and they better. I am not feeling terribly confident. I am confirmed for tomorrow and the rest of the week at 9:30 which is the earliest I can get there and which I repeatedly explained to various people. It seemed like everything was new to them. Having a view of the lake and cable tv in the IV section was small comfort, especially since I witnessed the degradation of the day from pleasantly sunny to crappy.

I got 2 shots in the fatty tissue in the arm so it didn’t hurt. I was given a yellow tablet called Ondansetron that I need before the shot. No one had given me one of those either, so I had to wait for that… there is another prescription called ProchlorperazineI was given for nausea that I am to expect, among other possible side effects. I decided NOT to read them all since I was superstitious having read them when I was getting ATG and I ended up experiencing all of them, including anaphylaxis. (Ultimately I had more success with the  rabbit version ALG ). But I read the inserts anyway because they said important things like best not to drive, get up slowly, expect dizziness, etc. Finally I am released into the pouring rain, still no phone or text message. How strange. I go to The Goat and naturally they are gone, but at least I can order a soup to take out. Oh, but they are sold out. Shit. I have time to get a miso soup across the street, and run into Tully at Quarry Pharmacy where I am getting my drugs. I was honest when he asked me how it was going, but not because of how I am feeling now, but because events had seemed to conspire against me from the moment I got up. So sorry about that, Tully!

But now I do feel crappy. I needed something else, and decided a coffee might nip any nausea in the bud, and while I am at Tim’s drive thru, why not get a PLAIN sour cream donut. The rain is coming in the window and she is taking her time repeating the order back to me so when I pull up and negotiate the change in US and Canadian coins, I don’t check but find out in the ferry line that my donut is encrusted with sugar! Precisely what I didn’t want. Stupid! Then I lose it and cry into my miso soup. Apart from everything really sucking, I come to the realization that from this moment on, the old me no longer exists. I am on the track to a new marrow, with luck a new life. I miss the old me already.

Finally the phone rings, and everyone is at Kev and Sal’s. Pete had left so many messages my mailbox was full, but I look again and there is NOTHING. Thanks, Telus, you suck! I just spoke to them last week about getting messages hours later and they said they fixed it. Pete told me something weird had happened to Skyler around the time I was getting the shots– he started to cry and said he missed mommy! Shit! My mom went through a similar empathetic experience when I was birthing Skyler. What an interesting link to explore!

Day 2, October 25, 2011

Went to bed early-ish, around 9:30, and woke up when I heard Skyler fall out of bed and climbed in with us, then I slept through the night till 7:20 feeling pretty good. One side effect that was expected was some tenderness and redness at the injection site which the nurse recommended I treat with EPO (evening primrose oil). However, what was odd was that my teeth seemed to be sore, so I couldn’t eat much of the granola  I softened with yogurt… darn! I was cautious last night about dinner, as I was told to eat like I am seasick– toast, bananas, broth. But I had an appetite and ate a small amount of chicken and had rice soup as well. My stomach was definitely doing strange things. I understand Ondansetron blocks serotonin which is in the gut, and this can ultimately impact my mood as well. Today was a much better day, it was sunny, things got done sooner. Pete, my super advocate, accompanied me to the clinic today to give an earful about how I was (or wasn’t) treated yesterday, and to discuss with the pharmacist the circumstances around whether or not we are covered for the drugs.  The pharmacist remembered us from 7 years ago, when we had a serious problem with a mixed up prescription and providing the Neupogen that I required and was not covered. Apparently the Vidaza treatment for just one round is about $5000, so having it covered is certainly a benefit! The glitch has to do with the fact that I am a bone marrow transplant candidate, meaning I have another option for treatment, whereas those who don’t take azacitizine indefinitely. Very screwed up. The same happened to me with AA, where I did not qualify for Neupogen coverage because I was not diagnosed with cancer, even though this drug was essential to bringing up my white blood cells, and incidentally, my reds as well, something that was unexpected.

I have to share this observation, because I am a health advocate, and it is this. The volunteers at the hospital are terrific, they scurry back and forth between patients hooked up to IVs in reclining chairs and ask if we need blankets or anything to drink. Available options are water, juice and pop.  More than once I saw the ladies walk by with a Brisk or a diet soft drink, neither of which are doing patients any favours. In the lobby downstairs there is a makeshift vendor’s station, where one can buy any kind of junk food, or bananas. Naturally, the junk food is cheaper than the real food.  Until this gets turned around properly, we cannot really consider a hospital a healing institution. There is a bigger picture involved here which I won’t get into, unless you want to read about it on my business blog.

So overall, today was a breeze compared to yesterday. Keeping fingers crossed!

Day 3, October 26, 2011

Now that everyone knows who I am I seem to be doted upon much more. This visit was just under an hour, compared to 4 the first day and 90 minutes the second. So streamlining is evident. Although I have gotten a few conflicting appointment times that required confirmation. One wonders how far reaching the chaos that is the Cancer Clinic, still undergoing renovation, is. The tooth pain has diminished noticeably, though what I hadn’t noticed was my lack of BMs (and this does not refer to marrow, BTW). I understood that constipation would be a side effect and no amount of oatmeal is doing the trick, so I will be going to the flaxseeds and water remedy now. I don’t feel bloated, and my appetite is super– having soups everyday is no hardship when the weather is miserable outside. One symptom that may or may not be related to the shots, one in each arm, is soreness is the upper back and shoulders, as if I had been carrying a heavy backpack, which I have not. The good thing about this was two lovely massages from Pete, thanks! Oddly, the pain seemed to gravitate from the left to the right side as I was getting the shots first in the left, then the right arm. There is a small amount of redness like a splotchy rash on each arm which I have treated with evening primrose oil. Today the shot went into the belly and we’ll rotate wherever there is fatty tissue. So you guessed it, the butt is next!

Day 4, October 27, 2011

Now things are running so smoothly. Book, water in hand, shots come within the hour, and off I go. Very uneventful the rest of the day, thinking this isn’t so bad after all. Except that I am still rather seriously constipated (I suppose of all the side effects, this may be the most benign) which is something I very rarely am, and even then it passes quickly. Here there is no passing whatsoever. I have tried everything I have at home but clearly need more in my arsenal. I was even so desperate to ask the nurse if she could give me something in case I don’t make it through the weekend and she said, oh no, you should try natural things like prune juice and lots of water, etc etc. I was most impressed by this attitude. There is hope yet!

Day 5, October 28, 2011

Another pretty good day, thanks to the sun. I went to a very interesting energy healing session with RS and a few incidents came up that are perhaps a little too private for this forum, but a few releases and a sudden realization that I can overcome this on my own were defining moments. I went off all over town to complete my toolbox which included Bentonite clay, prune juice and psyllium.  I was greeted immediately and warmly by Jodi who I have not seen in a age– she is so sweet and kind and offered to help with anything. My only recommendation, being pregnant and not a candidate for blood donation, is to have the cord cells saved after birth as insurance. I hope I convinced her to come to our monthly nutritionists’ brunch next Sunday. If I am up to it– after the weekend I get 2 more sets of shots, and then we hang tight while my CBC drops, then rises triumphantly. Right? I was doing well today, which I attribute to the sun, but my energy level only lasts so long, and after missing the 3pm boat, I was getting tired and cranky and stressed over the dessert I was supposed to be baking for the pot luck/movie night tonight. Instead I had a short nap, and just as the gang were opening the door to leave, my spirits came back in time and we went together to Judith and Paul’s for The Tree of Life. Interesting and beautiful and a challenge to our plot driven psyches. It was later than I had been up in a while and it showed– I get this singlemindedness that involves being in my bed NOW! Fortunately, I love my bed, even though the ergonomic pillow I struggled to get has been waylaid at the cottage since last month. But it is comfy, cozy, I have awesome dreams, and sleep well, 95% of the time. The other 5% has to do with interruptions like snoring and kids sneaking into bed.

Day 6, October 29, 2011

No shots today so I got to sleep in. Wondrous! I took a bath in the clay, drank some with psyllium husk capsules and loads of water, came down to breakfast, and I swear the moment the sun went behind heavy clouds (OK, so it’s not snowing like in NY right now…), my energy drained and I was feeling a little nauseous. Time for a lie down, then– yay!– a bathroom break, just enough to ease the pressure. I have noticed that with increased constipation I feel more and more irritable. There has to be some connection between that and violence/crime. Anyone want to take on that study? I already know diet has an impact on mood, so this is no stretch.  I am wondering if the nausea is my body’s way of saying– wait, where is the Dansetron (anti=nausea) that I take before the shots? So I am having some ginger tea, grating the ginger (not from China, thank you) on the ceramic garlic grater that Pete got in California, made in Gilroy, one of the major garlic hubs of the world.

Today is just a lazy Saturday kind of day– Pete and Skyler are at the village pumpkin fest and later tonight we may order some turkey dinner for take out. Pat will be spending the weekend with us, and I have invited Leann and Mark to dinner tomorrow to thank her for house-sitting when I was away earlier this month, and to honour El Dia De Los Muertos. So I see a Mexican themed dinner and a great big Hallowe’en cake!

Should mention that I am scheduled for some standard testing in the next couple of weeks, a cardio one called ECHO and a pulmonary one called PFT. I managed to get an appointment with another doctor at our family clinic because my regular GP was booked till the end of the month– all I want is some therapeutic massage. Getting that request was a bit of a fight with a less than sympathetic receptionist, but after next week I can get a few at least. Also have a chiropractic app’t set up for Monday after the treatment– Dr M is also an osteopath and I get all that, plus a nice shoulder massage, in each visit. Can’t wait!

Day 7, November 1

But wait, isn’t this Day 9? No, because the treatment runs 7 days, not counting weekends. How this affects the sequence of shots is a mystery, and when I asked last week I got a friendly unconcerned response like: that’s how we do it with all the patients! OK, but there seems to be something strange about  just breaking a series of 7 days’ worth of a chemo drug just because of the weekend… So no one gets chemo on the weekends? This seems odd to me. Anyhoo, that is “how it goes”!

Technically, then, today is my last day of Round 1. The weekend was a nice break from getting up early and having Pete put the car in line for me so I can get on the 9am ferry. I used the time to baby my bowels. Yes, it was bothering me how backed up they were, something that is so foreign to me. Since the Bentonite clay, psyllium husk caps and extra extra EXTRA water, I have managed to relieve the pressure, so to speak, but things are by no means normal. After today I will make another attempt as the clay won’t be interfering with the drugs. I am this close to seriously considering the coffee enema…Other than that “congestion”, the weekend felt kind of blah, low energy most of the time, except for the flurry of activity in the kitchen to prepare for the dinner I had invited Leann and her fam to. I went all Martha Stewart, new tablecloth, cored mini pumpkins in which to serve pumpkin soup, beef enchiladas to acknowledge the Day of the Dead since I didn’t have any skull molds handy… and a big ol’ chocolate Hallowe’en cake for dessert!

I celebrated my last day of Round 1 with a medium Tim’s and a sourcream donut PLAIN! This time I checked to make sure they got it right. I was feeling pretty good, the sun was out, Glenn Gould was playing Bach on CBC radio, and as I contemplated the fate of the poor fellow who was curtained across from me at the clinic getting chemo while under police watch, I had to wonder which was worse– having cancer or going back to Kingston Pen. In my little world at least, life is good.

From this point, unless I have something profound to add, I won’t be blogging again until Round 2. By then I will have had a few weeks to feel my numbers drop then climb.  My increasing breathlessness is a testament to the former. I will also have gone to an evening with icon William Shatner in Montreal and a chakra workshop (root, base, Muladhara, All is One, red, adrenals, blood, marrow… see, I remember from nutrition class! At least where to find the chart I made…).  I anticipate both events to be exhilarating!


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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

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