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Monday, August 20, 2012

The "Talk", and the beginning of another challenge.

As I felt the heaviness descending, I chose a spot to sit as far away from the doctor and my parents as I could.  It was almost as if I wanted to remove myself from what they were going to talk about.  And now that I look back all these years later, I realize that was the moment I started to put up some walls.  I figured it was bad enough I was going through all this, but I did not want to be all emotional and making it harder for my parents, my family, and even my friends.  If I could make any of this easier for them, I was going to try to do just that.

Doctor Neville seemed awfully young to me, and one of the nurses had said that he was a specialist of some sort that only dealt with special cases.  So why was he the one sitting down to have this official feeling "chat" with me?

His first words were that they had received some of the tests back, but that a few further tests would still have to be done.  Great, more tests, frig, why couldn't they figure this out so I could go home?  But then he leaned forward, towards Mom and Dad and folded his hands.  "We believe Verna has something called severe aplastic anemia.  It is a blood disorder where her blood cells are just not making new blood products."  I am not sure about what Mom and Dad were thinking, but my brain was already racing with 100 questions.  My first one was did this mean that I just had to keep getting blood transfusions?  No, that would work for a short while, but probably for only three months or so.  My next question was what would happen after the three months?  I remember Doctor Neville looking at me like he hated his job, as he answered.

"We can keep you alive for about three months just doing transfusions, and you would also having to be doing a strong drug regime.  But I can't promise you three months, you are already in an advanced stage, and our options are more limited."  If I had been standing I am sure I would have staggered.  Was this man really sitting here telling me I was going to die?  Part of my brain still thought they had me confused with another patient.  I am sure we sat in silence for three minutes.  My next question was if I had any other options.  Yes, maybe, he said, a bone marrow transplant might be another option.  But they would have to do tests to see if my body could go throught it, and more importantly, we had to find a match, and we had to find a match very quickly. 

So what the hell was a gone marrow transplant?  I had never heard of it before, I had never met anyone who had such a thing before, and my parents were just in the dark as I was.  I don't think Doctor Neville wanted to share too much just yet about what a transplant consisted off, he said  it was an option that we could explore.  If we did find a match, and if the tests said I was physically able, then I would have to do chemotherapy and radiation in order to do the transplant, and then we would do the transplant and wait to see if it worked. 

This all sounded complicated to me, and I hung on every word that Doctor Neville said.  We could go through all that, and it might not work?  "No, it might not work.  I can't promise you that you will be here seven weeks from now, but you may be here five years from now, I really can't say either way, I'm sorry." said the now sad looking doctor.  And I suddenly felt sorry for him.  As we were sitting there in total chaos, I just remember how sad he looked, and genuine, and suddenly I knew that he actually cared and would not do anything on purpose to harm me any further.

But then another thought struck me, and I was terrified to ask...but I did. 

"You said I had to have chemo and radiation, and then the transplant, right?  Does that mean I will never have children?"

At this point I am really sure Doctor Neville did not realize that his answer would impact me any further in a negative way then anything he had already said.  I am sure he thought that at 19 I just wanted to live and that children were something that could be thought about at a later date.

"Given your condition right now, and what I know from other patients who have had this done, no, you will never have children," was his simple answer.  It was then that I could feel the tears starting to well up in the corners of my eyes.  Even as I write this 20 years later, I am struggling to see the screen from the tears.  To me, my life would never be the same again.  I had pictured having a family already for years.  Not necessarily with anyone in particular, but I knew I wanted lots of kids.  I wanted a house full of children, running me ragged and sharing their lives with me.  My friends had kind of a running joke that they never saw me much without one of my siblings or cousins.  When i got my license, the car always had kids in it if I was going anywhere, and unlike other teenagers who might have complained, I loved having them with me.  And now this man was telling me I would never have a family of my own.  I was never going to give birth and be able to hold a baby created in love by me and another human being.  I was never going to sing them to sleep every night or hear an, "I love you mom."  To say I was devestated would be an understatement.  I honestly thought if I couldn't have kids, what was the point of all the rest?

Doctor Neville had continued talking and then realized I was crying.  He wrongly thought it was because I was upset about the transplant, and I could see the surprise on his face when I asked again if he was sure I would never have children.  This time he didn't answer.

"The first thing we have to do is see if any of your siblings are a match."  No way, I thought, I did not want these doctors any where near my siblings!  I looked to Mom and Dad, and they were already saying they would make the arrangements for the kids to come to Halifax.  Obviously we had some talking to do.

Just as I felt the doctor was not going to share any more information, I stood to go back to my room.  Of course, he had some more to add.  I would be going into the bone marrow unit in the next day or so, and unfortunately the bone marrow biopsy did not get enough of a sample, so they were going to have to do another one.  Oh god, I was still hobbling from yesterday, how long did I have to mentally prepare for the next one?  Doctor Neville informed me it would have to be done that afternoon. They would do the opposite hip, just to spread out the agony I thought.  But the good news was that over the weekend, I was going to have some pass time to actually leave the hospital, but had to stay close, and be back each night. 

Mom, Dad and I must have been the three saddest looking people ever walking back to that room, but I was determined not to break down in front of them.  When I got back in bed I begged them for a half hour to go eat lunch, and I would nap before getting the horrid biopsy done again.  Once they left, I pullled the curtain around and was getting ready to have a big old cry when another thought came to my mind.  I gathered up all the change I could from my room mates, and headed down the hall to the pay phones.  Doctor Bernie would know what to say and would spring me out of this god foresaken place.  It was early Friday afternoon, and I am sure his office was full to the rafters, but I simply told the secretary my name, and within seconds Doctor Bernie was on the phone, listening to me repeat everything the "other" doctor had just told me.  And god bless that man, because what he said that day has stayed with me, and gave me the kick I needed right at that moment.

"Now you listen Verna, you know I wouldn't lie to you.   I don't know too much about aplastic anemia, or bone marrow transplants, but I know you...and whatever they do to you in the next few weeks will probably not be very nice, but you can handle it all.  I know you can, and when you get better, they can't tell you that you can't have children, they don't know that, we will deal with that on the other end.  And Verna, remember, you are a MacLean, we are the toughest of the tough."  At the time we still shared the same MacLean name, and I was always so proud of being a MacLean, and he knew that would strike a chord with me.  We chatted a bit more about what was happening, and then the elevator doors opened and my parents stood there with my Aunt Ruby, my Aunt Lilly, my Aunt Marion, and a close family friend, Gayle.  I had no change left anyway, so I hung up feeling stronger than I had before, and I shuffled back to my room with my new visitors to await my next news.

3 comments:

  1. Verna, we have never met, I am a friend of your Mom's and I say you are one brave wonderful daughter. I am looking forward to reading your blog.

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  2. Wow Verna. Love your blog. I just found it through Tracey MacDonnell. I remember when you were sick but had no idea at the time what it was all about. Thank you for sharing. It is eye opening for sure and I can't help but appreciate the blessings in my life even more after reading. The things we take for granted...

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  3. you are such a strong person. you shiuld really write a book. for yourself and to help and inspire others. you're a great writer and such a brave person. :)

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