A couple days later I was sitting on my sofa with the TV on and felt a slight tightness in my chest. 10 minutes later it was a pain and an hour later mom was racing me to the hospital and I almost threw up from the severe pain in my chest that was even worse as I tried to breathe. 3 hours later I was seen in emergency -many tests later it was determined I had pericarditis...which is inflammation of the pericardial sac around the heart. A couple of days later they determined I had a virus that may have triggered the pericarditis and I was out of hospital with antibiotics, anti-inflammatory medication, much less pain, and a lot of fatigue.
The next week I started by having dinner with Tasha on her birthday (and watching Twilight). I was back at work and even made an overnight trip to Saskatoon to speak at the Light the Night Corporate kick off breakfast - an event to help increase corporate involvement with the September event. Met a lot of very interesting and good people. It's always amazing to see how many of these people there are in the world...:) When I got back to Calgary I went to work and then to a charity function. My ankles were quite swollen by the end of the night, and in the morning they were no better. By 4 PM my calves were incredibly swollen and my feet were almost deformed looking. It hurt to walk. So, I called in and the doctors put me on a medication to reduce fluid, but were also cautious as I have had a blood clot in the past. My plan to fly to Winnipeg the next morning to hang with my friend Val and see Tom Petty in concert was out the window. While the swelling improved by the end of the weekend, they had me go in for a echo test to check my heart. All seemed okay and again the week went forward until Wednesday, when I as at the clinic for regular follow up. It seemed my kidney functions were now abnormal. But the worse news was that my hemaglobin was below normal for the 2nd week in a row. Consistently in my first diagnosis and both relapses, low hemaglobin was how the disease presented. It's "MY" number. I would have to wait for bloodwork the following Monday to see if it was continuing to fall. And all you can do in the meantime is live.
Friday night Tasha continued exposing me to her new found passion for the Twilight series and her and I watched New Moon. Saturday I saw How to Train Your Dragon with Jack, Davis and "Nana and Papa". Sunday Tasha and I had tickets (good ones) to Lilith Fair. In the morning I started feeling a familiar pain in my chest when I breathed in - this continued through the day and while eventually it calmed down after I took anti-inflammatory meds, Lilith was a no go. Concerts just didn't seem to be working for me.
I had bloodwork the following morning before work and later that evening Dr. Brown called - the hemaglobin was even lower. The familiar taste of relapse filled my mouth, the world "swirled" and everything changed. The fear of not seeing the little boys grow up became vivid and confusion as to why I must again repeat this path when I try to give back engulfed me. A bone marrow biopsy was the best next step - earliest was Wednesday morning. Unlike when I had relapsed in 2002 and 2006, the knowledge that I had already used up the "Wild Card" third transplant and maxed out the induction chemo options made me very tired. I slept most of Tuesday.
Tuesday afternoon I felt some chills and while Tasha was over for a visit, I checked my temp to find it was high-grade fever 39.1. Called the clinic and was in emergency an hour later. Dr. Al-Hashmi, a newer addition to the Calgary bone marrow team saw me and blood cultures, xrays, and a few other tests later I was in Unit 57 again, getting antibiotics and fluids. Dr. A did the bone marrow biopsy the next morning and I slept several hours afterward. In the afternoon, Dr. Brown and Dr. A came in to see me as they had just been with the pathologists reviewing my marrow - there was no evidence of leukemia. What? No evidence of leukemia. I could hardly process the good news as the past days seemed to be a series of dreams and it was difficult to det ermine what was real.
So as Dr. B says, the factory is functioning just fine but either not enough red cells are being produced, or something is happening to the red cells once they are produced, as my hemaglobin Wednesday had plummeted further to 80 from Monday's 97. I received 2 pints of blood (special thanks to all those who donate blood) that day which brought my hemaglobin up to 102 and by evening I was feeling pretty well. Thursday the docs let me go home on a pass (always revoked should a fever arise) and stay out overnight. Marvelous. Quite marvelous.
I made it to today Friday without a fever and went back to the Unit to find my clothes and things had been moved to 57B - this was a sign that I was too healthy to use up a bed on 57. Excellent. The nurse came by for vitals and the lab came for bloodwork while I finished this post. Dr. A just came by now to check how I was feeling (which is actually better than I have in weeks) and that none of the blood tests they would run for anemia was giving them further clues to what was causing it. They will likely want to do another BM biopsy in a month or two just to keep checking the factory. My albumin was also low suggesting I needed to eat a bit better (and rest more) but that unless I had a fever I could go home again until Monday, pending the results of the bloodwork today. I'd come in for bloodwork Monday and then likely get discharged to be seen in clinic Wednesday. Sounds good to me.
While I finished typing the paragraph above, the nurse just came in - hemaglobin 115. What? Woah. What can happen in a matter of days..the bloodwork and emotional freefall and jumps. Although I have to see what the blood says Monday, there's still a chance I will get to Europe in 2 weeks afterall.
Oh yeah I forgot to mention - In May I planned a trip to Europe to meet Oliver Bosch, the donor of my bone marrow for transplant #2, and thank him in person. A tour through Italy, France and back through Scotland. Haven't been to Europe. With all the drama this past few weeks, Mom booked to join me. She's never been to Europe either. Clearly this week's events made Europe seem impossible. Of course, you never know what can happen in a matter of days. So enjoy your weekend, at home, in the mountains wherever. It's quite incredible whatever you are doing. And eat well ;)
