Okay so where we left off a few days ago we were holidaying out in Western Canada. I had the splenectomy in March and with some transfusions since then to keep the hemoglobin up I felt that I had seen the last of the tough times and things were on the up and up.
I was taking the Methotrexate chemo pill once a week to get rid of this large granular leukemia that from what I understood was not causing any great concern. I didn't really get the whole story as to how long I had to take these pills for but I thought sooner or later it would clear everything up. The real question for me though was my hemoglobin was not moving up higher away from the transfusion zone. Everything else seemed to be getting better except for this nuisance. Before we left, the hematologist had mentioned the stem cell transplant again which I thought was eliminated but was back as a possibility. That came as a shock and it made me think I wasn't out of the woods yet.
It was becoming obvious my hematologist or you could say my oncologist was searching for some final resolution to fixing my blood issue for good but her hope was shot down quickly by the doctor at Juravinski Hospital when instead of the stem cell transplant they settled on the spleen had to come out.
As soon as we returned home I received a phone call from the oncologist. She wanted to see me on short notice. We went over there and she explained that as was protocol the spleen is sent to Toronto for further examination and the results were not good. Apparently what had apparently been overlooked was that I had some T-cell fighters showing up. This all of a sudden changed the scenario. Already before the visit she told me to discontinue the methotrexate because it was not doing what it should. So now the large granular leukemia was put aside without knowing whether that had cleared up or not and the emphasis was now on what this report detailed.
The oncologist wanted a second opinion so she asked Juravinski Hospital to have a look at this report. But meanwhile no treatment was offered and all I was taking was the folic acid. What was obvious though was this was much more serious.
What was now a new concern was the levels of iron in my blood. The normal is 250 or less but my levels were up around 10,000. How did it get so high was because when we have blood transfusions there is iron in the blood. Your body does not lose the iron. Well with all these transfusions my iron levels skyrocketed. The oncologist was going to get in touch with the local health unit to see that I start getting this iron withdrawn from my body. A nurse was going to be knocking on our door shortly thereafter. Too much iron can wear on your organs especially your liver and heart. My liver was not great to begin with so I didn't need anything else to weaken it.
So the nurse made her visit and brought with her a contraption that I had to attach to an area in my lower belly with a needle looking poke that injected very slowly this fluid. It was not inserted through a vein but a fatty part of my skin. I had to run it for 12 hours straight then unhook it and with some plastic covering the area of the insertion point rest for 12 hours then do it all over again. The iron would leave my body via my urine. Wow I had to do this not for a day or a week but what looked like months. It was July so the rest of the summer was pretty well shot but at least we got our holiday in before the real fun began. She also scheduled me for another bone marrow biopsy in September only a couple of months away.
Now it was also time to wait for what the second opinion from the hospital might be on the reports.
Meanwhile we still had no official word on whether I had cancer yet so when people would ask me what I had I held my hands up in the air not knowing what to tell them. This was now July 2018, fifteen months into it.
Frustration was getting higher...
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