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.

A Turn Of Events

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...

Operation Day

I think I was not quite over the pneumonia but here it was March 1st. We set the alarm to wake us up at 5AM and in the shower I went to give myself a good wash for the second time with this sponge that had I guess this special soap to disinfect the area of my spleen that was going to be cut.

Fasting for 12 hours now I couldn't eat which was pretty standard before submitting to an operation. Arriving to register at 7AM they led us to a room where the stretcher was situated and a chair for the wife. I took a seat on the stretcher after changing into the gown and they took my blood work as usual. I recognized the nurse and we chatted a bit and laughed because usually he is doing my blood work to match for the transfusions I often took.

We were hoping that the removal of the spleen would solve my blood issues because I honestly felt that the enlarged spleen was the reason my hemoglobin, white blood cells and platelets were so low.

At 9Am a nurse came in and led us to the operating table. My wife Soley was given a number to watch a television monitor in the waiting area updating her as to when the operation was over. She wished me luck and I was sped off to the operating room. I didn't know what to expect but I did not expect a big room with many operations going on at the same time.

I transferred myself to the operating table. There were a couple of assistants around me then I saw the surgeon arrive all dressed up looking at the blood work. I saw his face and he sort of had a funny look when he turned to one of his assistants and murmured something about the platelet count. They were making sure that there were some spare pints in the blood bank if I needed them. He came over and said hello with a grin. I asked about the platelets and he turned serious right away so I decided this was not a time to crack a joke. I kept my mouth shut after that.

The anesthesiologist  arrived as they were strapping me down to restrict any movement so as not to interfere with the operation. I felt all secure like I was an astronaut before take off.

I was told that she would be putting me under very quickly timed to last for the time needed but if there was something wrong  I would need to go to ICU and be put under for 24 hours. Not sure why that was but I thought it would have to be pretty serious for that to occur.

All this was new for me having a major operation. Just another life experience I thought to myself. This is interesting to read for those who have never had an operation so I will detail for you now what happened afterwards.

The operation lasted longer than expected and fortunately did not need to use to extra blood that was put aside in case it was needed. I was wheeled out and Soley was last left in the waiting room getting kind of worried as time crept on. It was a big incision closed up by 26 staples right up the center of my stomach.

I waited for a room to be available when the surgeon came over and said that no one could tell me that they had a bigger spleen than I did. He also added that no matter what happens from then on the spleen had to come out.

Soley had to head back to work and after she left shortly thereafter I was sent to a room shared by three others. Water was the only beverage I was allowed to drink. No food even though I was getting hungry. Took it easy the rest of the day. I had a catheter up you know what and another tube stuck on the far  left side of my belly for drainage I guess. I was able to walk around but with that catheter it was kind of funny when I felt like to pee it would come through this hose.

The next day the surgeon came to check on how I was doing. I complained I needed some food. He looked back at me with shock. He asked if I was really hungry and I quickly replied that I was. Usually people suffer nausea a lot after this type of operation so with some trepidation he gave permission for a liquid diet. So that consisted of some soup, jello, and a juice really.

When the nurse pulled that catheter out of my you know what before she did she asked me to take a bit of a deep breath while she did it. Well I did and was amazed how long this hose was inserted in me. I gasped a bit and blurted out, "Holy cow." Then she said be glad you are under when they put this in. Yes no kidding! The other hose on my left side was pulled out but that was a bit weird because all that was left was a flap of skin that didn't look like it was attached to my body.

Now my oxygen showed it was low probably because of the pneumonia I had that was hanging around from before. On the 5th day I was discharged and happy to be home where I could eat to my hearts content.

So that was the operation. Was it over now? I thought so when the surgeon came in one day and relayed to me that my blood work had improved too. Awesome I thought. I have to be home free now.

New Year's Day Emergency

Where we left off yesterday I was heading to the emergency at the hospital with a very sore throat wanting it just checked out and maybe get a prescription to get it fixed. 

As usual, there was a bunch of others thinking the same thing as we were in the midst of flu season as well so the wait was long. Finally I got a doctor who looked at my throat and actually recommended an x-ray which was sort of unusual I thought but I figured he was being thorough. I also figure too while I was there I may as well get some bloodwork done remembering the scare I had in late Spring I detailed a few posts ago.

So the x-ray comes back good but when this guy gets my bloodwork he is sitting me down scaring the life out of me saying my bloodwork is really bad and that he wants to set me up with a doctor there to set me up for a bone marrow biopsy as soon as possible. He starts talking that he is scared I may have leukemia or something similar like he is baffled by these poor results. Soley said to me I better get this seen to now and not put this off any longer because this health issue is not going away no matter what it turns out to be. I had to agree because words like leukemia started being mentioned. Nothing really up to then was that scary but when someone mentions cancer it gets your attention.

He sent me home with Amoxycillin and a phone number to contact this doctor. We already had a family doctor an hour away but I called this guy because he was local and I thought if I needed to do more visits I would prefer to do them locally. After calling the doctor he mentioned he was expecting my call and to come in for an appointment set up for a couple of days later.

Meanwhile, I took a couple of days off work then returned but still had this sore throat. It took a second visit to emergency where I got another doctor who recommended a stronger dose of antibiotic called Clindamycin. Now I realized that my body needed more help in fighting off disease so I guess my white blood cell count was way low.

The bone marrow biopsy was scheduled to take place about two weeks later. At the same time I got Thrush from the clindamycin. Thrush is awful because your tongue is coated white and looks awful with no taste and it kills your appetite. I couldn't work with that so I ended up taking more time off to get better.

I started to mend and headed back to work still wondering what the heck was going on. It took almost a month to get the results from the biopsy during which time the stress of waiting was palpable. Many things you begin to think about and most of them not very good. Even though my throat got better it was back to the blood issue again and I was not even sure if it was only the white blood cells again or the enlarged spleen.

The local doctor referred to me was looking at my blood results and he could not figure it out at all. Just like me he was waiting for the results.

The good thing in all this was at work even though I missed a bunch of shifts I was more than half the second place waiter in sales when I returned to work in the wine sales contest. The contest ended toward the end of January and I won overnight accommodation for 2 , a dinner voucher , and a wine tasting for a weekend in April.

I had a real good six month job evaluation from the manager but got the message to concentrate more on cheque average the coming month so I had to forego the selling of the feature wine as it was not the most expensive wine they figured I should be selling. I decided right there and then not to bother selling it at all. Instead I was going to concentrate on the cheque average.

Finally I got the call from the local doctor but only it was not him but the receptionist who gave me the news. The news was that I had an appointment with a Dr. Maceachern on this day at Grand River Regional Hospital in Kitchener. No news of the results. Nothing. I had to wait till I saw her the following week. I asked if it was cancer and she said that she did not know and that she was passing along this message. This Dr. Maceachern would have the details. I said well I guess this is goodbye because I will not be coming back I imagined. This new doctor I would be dealing with in this regard. Thank you I said and gently hung up the phone quizzical as ever. I did have a family doctor already and did not need another one.

So now I had to wait for this appointment to find out what I had. How frustrating it was but I had been waiting for these results for a month already so why not another week.

The only thing when I looked up the doctor she was at the Grand River Regional Hospital alright but I noticed she worked in the Cancer Center so it didn't look good.

This continues tomorrow...