Hemoglobin Blues

So it is July 2018 and after having my spleen out on March 1st then having a two week vacation out West here I was now in limbo again. A disturbing report had arrived at my oncologist to inform her that what I was taking, being the methotrexate, was a waste of time. So I was told just to stop taking them and to continue with the folic acid which was beneficial anyway.

Meanwhile she was sending this report off to the hospital in Hamilton for a second opinion. Intermittently, I was still getting blood transfusions. Also beginning at this time I was on this this sort of pump to inject sporadically doses of this liquid into a fatty tissue part of my abdomen so I get rid of some very high levels of iron I had accumulated because of all the transfusions.

Initially everything seemed to be working then all of a sudden my hemoglobin began dropping to dangerously low levels.

The first time I was actually sitting at home. My wife was working so at the time it was just my younger son and I at home. Every effort I made was difficult. My heart rate was racing and I found myself really just unable to function. In fact I was sitting on the couch and I needed to go to the bathroom and I couldn't get there fast enough. To my amazement I just pooped my shorts. I hobbled to the bathroom finally and called out to my son to get a plastic bag. I took off my shorts and underwear and just put them in the bag and said to him just take this out to the garbage. The wife came home and off to the hospital I went to emergency. My hemoglobin was in the 30's. After about 6 pints of blood over a few days it was back up to 90. I came home and reattached myself to this contraption that was supposed to be taking the iron out. Well after getting six pints of blood the iron it did get out probably was replaced by the new iron my body just ingested.

The second time happened shortly thereafter when on that Sunday we had people over and as the day wore on my hemoglobin I could feel dropping. Just lifting a piece of apple crumble onto my plate was a gargantuan effort. I called 911 for the ambulance and once again my hemoglobin had dropped down into the 30's and once again had numerous pints of blood transfused in me. Now in both cases I was admitted into the local Guelph General Hospital while they kept my oncologist informed in Kitchener at Grand River Valley Hospital.

The stupid thing was she never called or asked me what was going on. It was like oh well as long as I was getting blood transfusions that was the main thing. Never mind it was all counterproductive to what I was doing which was getting the iron out. I believe I called and asked maybe a slower dose and give my body a break and give me the weekends off. Maybe doing this slower would help keep my hemoglobin at a safer level because almost being dead twice was not a trivial thing.

It is hard to explain when your hemoglobin gets that low. Your brain even begins to malfunction. One time I was being helped to the van to go to the hospital with my oldest son holding me up on one side and my wife the other. When we came to a short step in our entrance way she asked me to step forward to which I replied I was and then I looked down and I was not moving forward at all.

So the oncologist agreed with a lower dosage with weekends off and so I began again this iron chelation method. I had a bone marrow biopsy scheduled for early September. On this occasion my liver was now acting up. I had jaundice all over the place. I glowed when the sunlight shone on me. I would check my eyes in the mirror and they were yellow. My skin was yellow.

I didn't go to emergency this time as with this appointment in Kitchener coming up I wanted the oncologist to see me this time. She wasn't I thought going to brush me off and let Guelph handle it.
I went into the bone marrow biopsy yellow as a banana. My bilirubin was over 400. Bilirubin  is what they measure your liver among other things like enzymes.

She said we got to get you a room and run some tests. I said yes I think so then she is asking my wife in front of me if anything happens has she agreed to resuscitate me. I interjected immediately I am going nowhere let's fix the damn thing. Soley said on two other occasions she was asked the same. I said no more iron chelation.

I spent a week in the hospital doing CT scans, ultrasounds, and MRIs and they couldn't find anything. No blockages, nothing. I was discharged once my bilirubin got to a reasonable level. I was what you call an enigma to everyone.

Meanwhile the second opinion my oncologist was waiting for was not coming. They even sent my report to the States to Boston and they all said they thought it was what it originally was which was the Large Granular Leukemia. I was already taking the methotrexate for that but was taken off it.

I said to the oncologist can you not do something? I asked her about taking pills for the iron and she shot that down saying they are not really effective. I had another episode then she decided she had to do something so that next appointment in the office she told us I was going on the chemotherapy. A treatment every three weeks six times. This was starting the next day and finishing mid - winter.

As bad as it sounded she told us finally it was cancer and I had these T-cells from my white blood cells killing my good red blood cells as well as the bad ones. It was a rogue cell and hopefully the chemo would kill it. I thought finally something is being done after all these near death experiences.