Chemotherapy

So to continue on with my experiences, which I promise will be wrapping up very shortly, the oncologist decided that something had to be done after nearly dying a couple of times due to my low hemoglobin. My excessively high bilirubin levels in my liver was scary as well. With my spleen gone there was a load on my liver more than before. The hope was that whatever was killing my good blood cells could be extinguished by some chemotherapy.

Every third week starting off first in Kitchener for about 3 hours I would get 4 different IVs injecting the chemo. Intermittently  I would still have the blood transfusions while all this was going on. The doctors gave me pills to take if I was beginning to feel sick. The first night I took one but I realized I just needed to go to the bathroom. I never took one after that night. In fact I would be going to the local hospital after the first treatment. Then just drive home myself and continue on with my day.

One of the doses did cause me to have awful constipation so after that one time I made sure to take the suggested tablet so that I could do my business in comfort. Once I did that it was no problem. The other side effect was I lost my hair but it soon grew back once it was over.

The chemotherapy sessions ended and I can remember the day I stopped getting blood transfusions. It was March 7th of 2019. Each week I went for bloodwork the hemoglobin was holding steady. My white blood cells were low but other than that having no transfusions was great.

Another reason they were low was I was taking an immunosuppressant called cyclosporine which suppresses your immune system which was giving out these rogue Killer T-cells that was attacking my good cells as well as bad cells. So even though it may have been helping hemoglobin I was prone to getting sick. Lo and behold that September I caught pneumonia. My hemoglobin dropped shortly thereafter and I was back to getting blood transfusions again. So rather than continue on the cyclosporine I backed off and just concentrated on taking the iron chelation dissolvable tablets to try to get my iron down.

After the pneumonia bout I stayed away from blood transfusions. My hemoglobin high water mark was 110. My family doctor gave me some optimism by saying sometimes it takes a while for everything to work properly but give it some time. It appears whatever you had the chemo got it all.

My oncologist was less optimistic as she stated that she would not be surprised if there was still some T-cells that were still hanging around. Naturally I felt pretty optimistic as things seemed to be heading in the right direction.

I  passed an incident free winter but noticed my hemoglobin started slipping slowly as the months turned into Spring. Then the end of April arrived and the transfusions started again. I check my blood weekly but when I get the transfusion I check it again the following week. Well here we go again I thought. My family doctor now was less optimistic saying instead of heading in the right direction now she was just hoping that my hemoglobin would just hold steady in the 70's. That would mean transfusions all the time.

Tomorrow I will finish up this saga and then we can talk about something else. Enjoy the heat and Happy 4th of July to our neighbours down South.

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.