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Friday, August 24, 2012

Getting ready for Transplant

A huge gathering of doctors standing around my bed early Morning was how my journey towards my bone marrow transplant began.  They were there to fill me in on some of the nicities that Paula had told me about the night before.  The first thing to be done was that I would be taken to surgery to have a hickman line put into my chest.  It was a main line that is inserted into the "superior vena cava"...or big vein in your chest, and it is tucked up near your heart on the inside. Right at the skin a little stopper is put in place to hold it there, and then they stitch it in place.  The doctors explained that they would then be able to give me medications and blood, and do blood work without always poking at me with needles.  I am sure this was suppose to sound good to me, but all I heard was surgery.  When was this going to happen, oh, shortly they said very casually.  And for them, it probably wasn't a big deal, but I was still new to this strange medical world, so when you did not understand really what they were talking about, it was scary.

This is what it looked like on me, but on the left side.  But nothing went very smoothly in surgery, I had a scare.  They were having a hard time getting the line in because I have very small veins, this was going to continue to be a problem during the rest of my life.  But that day they actually were trying to "spread" part of the vein to get this tube inside.  My body was not cooperating, and my heart stopped.  It really was like in a movie, I could hear the voices of everyone around me, and I could see them charging the paddles to give me a shock, but it was like I was floating above it all, looking down.  And then it was over.  As soon as I woke up, I looked around and there was not a soul, and there was a toe tag on my big toe.  Oh my god I thought, I died.  Was I suppose to get up and go look for the angels, or someone I knew?  I know it sounds almost ridiculous now, but at the time I was a bit disappointed that heaven looked the way it did, and wouldn't the angels have taken the toe tag?  A nurse eventually came along to set me right, but the whole experience made me more anxious about the days to come.  When I was brought back downstairs they brought me straight to isolation, but the nurse had told Brian and Paula, so as they were wheeling me in the big double doors with the glass in them, they were there to say good luck and to tell me that they would be thinking of me, and they would be there when I got out. That was the last time I saw Paula. 

I will not kill you with details, with names of drugs and procedures, but on Monday and Tuesday of that week I had every test you can possible imagine, to every organ in my body.  It was like NASA, getting ready for the countdown.  Except my countdown was to chemotherapy starting on Wednesday, and the bone marrow transplant would be on the 24th...just 12 days after I had been admitted. 

Usually people know months, and even a year in advance of having to get a bone marrow transplant.  But I had something so rapid and rare, that was in an advanced stage, and that meant that the doctors had to work fast. The chances of me getting this disease were about one in a million back then.  Now there are about 2 cases per million people in Canada  diagnosed a year, so we are still a pretty rare bunch.

So the plan was with chemo and radiation that they would destroy all the bone marrow in my bones, and then Virginia's healthy marrow would replace it.  Virginia was nothing short of excited that she was the match, and I think my other two siblings always felt like they had somehow let me down because they did not match.  Funny eh, I would have rathered it not be any of them, so they would not have to go through anything either, but the doctor kept assuring me that it was easy for the donor, I thought I would wait and see.

Because everything was happening so fast, I started receiving five months worth of chemo on Wednesday.  I would receive that five months worth in four days, and be finished on Saturday.  If you ever have to have that experience, it is probably better for you not to read the rest of this because I do not want to scare you.

In the days leading up to the chemo I kept asking the nurses what it was going to be like, and most said it was different for everyone.  But "Little Paula", who was one of my favourite nurses almost right away in isolation sat down on my bed the day I was to start and told me that whatever happened, that they were all there to help me through it, and that they had seen it all before, so not to hesitate to ask questions or call for help if I was worried about something. 

It was another nurse named Threasa who brought that first bag of chemo in to hook me up.  She was wearing special gloves, a mask and a gown just to hold the bag.  But this is what was going to be injected into my chest?  She hung the dark yellow, almost brown bag up with the growing number of bags hanging over my head, and then sat to wait to see if I would have any immediate reactions.  I didn't.

But a few hours after that first dose, I began my long, long road of being sick.  I can remember asking the nurse if it was normal that I really did not feel that bad until they had all gotten a hold of me?  I definitely wasn't sick to my stomach until they injected me with poison.  And then I started moving my head on the pillow, and huge chunks of my red hair would stay behind.  On Thursday afternoon, I did not feel too bad, so I asked Paula to come in and wash my hair for me before Mom and Dad came back from a walk.  It was bothering Dad seeing me lose my hair, and he kept swiping it away thinking he was hiding it from me.  Another nurse came in when we were setting up and asked if I knew that by doing this that I would probably lose the rest of my hair?  Really?  No, I had not known that, I had only started chemo yesterday!!!  But then I thought, well, why drag it out, let's just get rid of it now instead of being sad everytime another chunk came loose.  So when poor Mom and Dad walked back in, I was completely bald, with one lone hair that stayed attached almost right at the top of my head.

By this time I had also developed something they were calling "raccoon eyes".  By Thursday, I was in and out and did not have much concept of time, I was so sick that I would wake up and be violently ill, and then fall asleep from the exhaustion of it all.  Sorry, but this was the closest picture I could find to what my eyes looked like at the time...but I did not know because at this point I was too weak to get up, so I had not seen a mirror.

During the chemo and the radiation that week, I continued to have tests to get ready for the transplant.  Friends and family continued to pop in that week, and some I remember, and some I don't remember seeing, but I could hear everyone even when they thought I was asleep.  Saturday was the last day of my chemo, and at some point along the way I had stopped bleeding, and I asked the doctor that was in that morning what that meant.  He replied that it was a good indication that the chemo had shut down the ovaries, which was a good thing, he thought, because it was one less thing my body had to deal with.  Again, I asked this new weekend doctor if I would have children some day.  No, he did not think so, and my body seemed to be telling me that already.  He walked out while I curled up in a fetal position and began to cry again.  I heard the door open and just thought it was Mom, but when I looked up, it was one of my best friends from school, Tim.  He stood there in his brown leather jacket and blue jeans for a second before he rushed over to my bedside and started to rub my back.  All I could get out was that the doctor had been in and said I would have no children.  And do you know what that man said to me?  As I lay there with no hair, smelling I am sure like rotting potatoes and looking like someone had beat me up?  He said, "Don't worry, I will be able to get you pregnant, I have the best sperm ever."  Seriously, that's what he said, just as my Dad entered the room, and I broke into a fit of laughter.  I laughed so hard I started throwing up, again, and usually I would make whoever was there leave the room, but I let Tim stay.  And he didn't run for the door.  I eventually married that man, but that could be a whole other book. 

Later that afternoon another friend who had listened to me boo-hoo over boys in high school, and swaped clothes with me for dances named Shannon came to visit.  And now, I can't remember where she was going, but I think it was Ontario.  For some reason, when she left I became convinced I would never see her again, and I could not be consoled for hours after she left.  Some things that you would not think would be upsetting, would have a terrible impact on me.  I was always worried about whoever came in to visit.  In isolation they had to come in and ask the nurse if I was having visitors, and they would have to put a gown and everything on to come in because my immune system was so surpressed, I could not be exposed to anything.  I was not allowed to have flowers or fruit in the room.  So when the visitor would tell the nurse who they were she would come in to tell me, and I would ask the nurse to tell them how I looked and if it bothered them too much, I would understand if they did not want to come in.  Of course, when the nurse said some names, I would try to sit up and not look so dead in the bed, but there was only so much I could do, lol.

Sunday would be my "rest" day.  No tests, no treatment, and hopefully no pain.  But it would be another day that would change everything for me, this time in a very huge way.

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