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