Needles and Side Effects

As a bit of a break before continuing on with my 3 year trilogy of how eventually I was informed of what I had let me explain the stuff I was going through.

First of all the needles that have been poked in me countless times. You all remember my first bloodwork with the oncologist and the 16 vials of blood they took out of me. Well at least after that there has been always a minimum of two. Multiply that by 150 and there you have 300 vials of blood extracted for bloodwork. While staying overnight for up to 4 days at the hospital every morning at 6am the nurse would wake you up to take blood. Then if I needed transfusions while in the hospital there was more bloodwork to check the hemoglobin.

Now my temperature use to fluctuate wildly so while getting a transfusion they always check your blood pressure before starting, ten minutes into the transfusion, then at the end. It was the same ritual for every pint. The same time they would check my temperature. I would sometimes go up and down. When it went high they would I call panic on the side of caution and take a blood culture to check for anything amiss. This was blood taken out of each arm to fill two more vials. The three bone marrow biopsies I had is when they stick a big needle right in the hip bone area to extract bone marrow. That hurts like hell! The two liver biopsies I had they  insert this huge needle in the liver area a couple of times to freeze it before extracting what they need for study. When I was staying in the hospital the needle I hated most they would just stick in my abdomen. That unlike any other lingered for at least 5 minutes afterwards. They gave me that to prevent blood clots. Man I hated that one. Then for I think it was a abdominal CT scan a needle was used to inject fluid in my veins while they took pictures. I thought my veins were going to burst. Same for my Liver MRI. Needles, needles, needles. Of course to remove the iron which I will continue Friday I had a needle like pincer inserted in fatty part of my abdomen for 2-3 days continuously until contraption I was wearing was replaced by another.

My temperature use to drop sometimes quite a lot. There were 2-3 occasions when not even a hot shower would even warm me up so I would climb into bed with my teeth chattering and my wife would throw like 5 bedspreads on top and give me a hot flannel to rest on my forehead. Curled up under the covers finally my body temperature would rise and a crisis was averted.

On the other hand I use to get the sweats pretty bad. On most nights I was ready for bed at 9pm so I would just say good night to everyone. Off to bed I went where as soon as my head hit the pillow off to sleep I was gone. Then I would wake up. My pillow was soaked, hair wet, pyjamas drenched, my whole body was prespiring, the duvet was damp, sheets were all wet like they only got half dry after being in a wash. Everything was totally not dry. I’d look around and all the lights were on as they were, checked the time and it was only 9:30! Unbelievable!

Grabbing a towel to dry myself off I went downstairs to tell the wife what just happened. We just shook our heads because that was the way things were while we were waiting on a proper diagnosis and treatment.

Right now I am much better than those days but my chemo as you will learn about after has left my toes with no feeling. Just feel cold all the time. My feet swell a lot too.

I am 50% through my journey of experiences. I will finish retelling them in a couple of weeks.

Thanks for reading.

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.

Such Fucking Positivity!

Picking up where I left off yesterday my hematologist set up an appointment with the surgeon who had lots of experience removing spleens I was told. That is always comforting when you hear that because who wants someone who has performed a few.

So we go to this appointment and the surgeon starts looking at my spleen x-ray and latest bloodwork then he starts talking about my case in sort of a funny way. He is looking at my platelet count and it is really low with a reading of 70. The normal reading should be anywhere from 150 on the low end to 400. Now the platelets are necessary because that is what clots the blood when you start to bleed. His concern was excessive bleeding that would take place during the operation that would cause a big loss of blood. He explained my spleen was very big and that he would have to cut to get it out. Sort of unlucky but no surprise that an arthroscopic removal could not be done just like the hernia.

In fact low platelet counts contribute to mouth sores. They used to drive me crazy in the restaurant because it was hard to speak to the guests when your tongue was hurting from one of these and my face actually looked twisted trying to talk around the pain.

So back to the surgeon. So talking about the operation  he says yes when he sees the hematologist he will ask her in passing what are you doing Janet and she will know exactly what I am talking about.
Like what? Like my splenectomy is going to be difficult or some sort of huge risk that shouldn't be taken?

Then wrapping up he starts telling the story of how he lost a patient that everything seemed to be fine during the operation but complications arose maybe cause of his platelets and this person passed shortly thereafter. Soley and I left shaking our heads. What did this surgeon know and was not telling us?

We saw him in December and before leaving we picked a day in January. Operation days were Wednesdays so we picked the second Wednesday to go in and get it out. The hospital called and set up a pre-op appointment to just do some tests, sign the all important waiver, and just go over a few things. They gave me two sponges. One to clean the area that was going to be operated on the evening before and the other for the morning of the splenectomy.

January came and I could feel worse and worse. Just going for transfusions, battling with frequent cold sores, and always had lots of mucous in my nose and chest.

The day is drawing near and then we get a phone call to say my operation is postponed a week. What! Someone else needed a splenectomy more than I did basically was the reason. Then the following week it was postponed again. We got into February and it was delayed again. Then I had a day at the end of February booked and it was a go but then I got pneumonia again. I went  to Guelph General Hospital here in town and had to cancel my blood transfusion in Kitchener. I said I was home with pneumonia what was I supposed to do infect everyone getting a transfusion? So I got on some antibiotics and because I missed the transfusion the next time around my hemoglobin had dropped just below 60. I remember this time I went alone and it was cold. Walking across the street from the parking lot was like lifting two sledgehammers for feet. When it gets low like that funny things start to happen to your body.

I got a couple of pints of blood. The operation was now for March 1st 2018. I went for two transfusions the week before. One because the hemoglobin was low and the second one was the day before the operation because the hematologist wanted me to be stocked up.

While there the day before I saw the assistant of the hematologist walking through and I know she saw me so I got her attention and asked her if she wished me luck for the next day. She said to me she has seen too many things and never wished anyone luck but the way she said it was bizarre. Finally I got a good luck out of her.

Well that might be half true what she said as I was to find out later on from the hematologist that she thought I wouldn't survive the splenectomy.

Such fucking positivity!