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Wednesday, August 29, 2012

Sunday, God's day and rest.

So far in the story, I have to say that what I am about to share was probably part of the hardest.  I have only shared it with a few loved ones, and even now, I struggled with how much to share, and how to tell the story.  I hope you will bear with me.

On Sunday, it was now the 23rd of August.  I had several friends pop in to visit before they returned to college.  Each time one of them left I longed to be able to get up to go with them.  My best friend Lisa had already been up to visit and had given me a beautiful gold chain, which I had always given to only my closest loved ones as a gift.  At the time, I had seen it as something they could have close to their heart that would remind them of me when they wore it.  Lisa knew my thinking, and I can remember opening the slender brown box and being overwhelmed with emotion.  So many of my friends were on this journey with me. 

But I also felt that I had a few other people in my corner that were no longer with us.  My aunt Mary, my mother's sister was also my godmother.  When I was growing up, she was the type of aunt who always had suckers for the nieces and nephews, and gum in her purse, a habit that I continued as I got older.  She was one of those genuine people that you come across rarely in your lifetime that seems to touch everyone.  She was kind, compassionate, and always giving to others.  When I was 12 she passed away after fighting cancer for a few years.  She had just gotten married the year before, and I can remember her having a great sadness that she would never have children.  I always felt that she was with me at various times in my life, but I also remembered how close she was with my mother, and how devestated my mother was when she passed away.  It was another reason I was not sharing all my information with my mother, I thought at the time the less she knew the better. 

And just a few months previous to me landing in the hospital, my cousin, Shelly had passed away, and her close friends were now visiting me and telling me they were sure she was helping me out from above.  We had all been so distraught when she died, and I am sure it was hard for some of them to come see me in the same hospital where Shelly had passed away. 

On my rest Sunday, Lisa had come to see me before heading back home, and being one of my best friends at the time, she let me know how upsetting it was to my mother that I would often be telling her to go for a walk, or to go back to the hotel.  Funny eh?  I thought I was protecting her by not making her sit there all the time looking at my failing body, and she had thought that I just did not want her around.  Everyone's perception of things can be so different. 

During this "great" day of rest, I really didn't rest much.  How could I?  Tomorrow I would be doing yet another procedure that could both save or end my life.  As the day wore on, I almost did not want it to end.  What if the transplant did not work?  What if my heart stopped during the transplant, something that the doctor had said could happen?  What if this was my last night here among the living?  I was in an agitated state as "bedtime" approached and I knew that my parents would be leaving for the night.  I was still falling asleep and waking up, not knowing what day it was, and always at first wondering if I had just had the worst nightmare ever.  My body, by this time, was in great discomfort.  Not many minutes went by where I wasn't throwing up, my eyebrows had now fallen out as well, and some of my fingernails were as well.  My skin felt like it was on fire in certain places, and my hips and back were still sore from the biopsies.  To say that I was a mess was a great understatement.  The other problem that I was having already was that my hickman line was not flowing so greatly all the time, and I would often lay on my right side just to take the pressure of the lines off my body.  I now had about 14 bags of various medications and nutrients hanging on poles beside the bed.  I now know that many who came to see me at this point left wondering if and when I would die. 

It was in this confused, kind of dazed state that the priest came to see me to do my last rites and confession.  Mom and Dad sat there during the rites, saying some parts that they knew from memory, and sitting in silence as the priest anoited me.  As a parent now I understand what that must have been like for them, and I am sure that they probably went to the hallway during my last confession and held each other while they cried. 

I really did not have much to give the priest, as a last confession goes, mine was probably kind of weak.  I had regrets more than actual sins.  I regretted not being a better daughter and sister at times, I think I confessed that I probably cursed more than God would like, and that I sometimes talked about people in a mean way.  The priest told me to say a few Our Fathers and Hail Marys, and then he asked me if I was scared.  It was then that I confessed that I was terrified, and that I was scared everytime I fell asleep that I would never wake up.  He told me to pray to God for comfort and that he would be with me during the procedures, I just had to remember that.

I fell asleep as the priest left, I guess he did his job well.  When I woke up I was again laying on my right side, facing towards the door, with my back to the large reclining chair that was by the window behind me.  As I woke up I knew that there was someone there with me, and I thought it was Mom or Dad who had come back in when I had been asleep.  I asked who was there, but no one answered....maybe they had fallen asleep too.  The room was now dark except for the glow of the lights from the bathroom and the hallway.  I didn't care who was there, or if they were asleep, everything all at once came pouring out of me.  I told them how scared I was to die, and that I had so many things I wanted to do with my life, I told them how I wanted to go home to see my Nanny in her kitchen, and how I thought it was even a crying shame that I had never loved someone enough to even lose my virginity.  I wanted to live, I wanted to fall in love, and I wanted to not be sick any more. 

The best way I can describe what happened next is to tell you that I have never had anything happen like that before, and I have never experienced it again since.  At that moment, laying in the bed, and feeling totally helpless I felt totally surrounded by love.  It felt like the whole room was glowing, and I was so overwhelmed with love that I started crying.  And I knew it was love from God, but I also felt like it was love from people I knew, like Mary, and Shelly, and others, like my Grandfathers, who had passed away before I was even born.  And I knew in that instant, that even if I died, everything would be okay.  I knew for sure there was a heaven, that is filled with love and compassion, and it was all I needed to know.  I could feel a calm totally descend on me, and that calm stayed with me in the coming days, well, lol, most of the days.  Even now, I know without a doubt in my mind that miracles happen, and that there is a heaven.  I am blessed with that knowledge, and with the knowledge that life can be very short.  That has been a wonderful gift, and has made me live my life with more appreciation. 

As I lay there, still talking Dad came in the door, and asked who I was talking to?  I said I thought it was him or mom.  No, Mom was talking to one of the nurses outside.  Well, I said, someone had been there, so he went out to ask the nurse.  No one could come in my room without being buzzed in the main doors of the unit.  No one had come in or out since the priest left they said.  But I knew otherwise, someone or something had been there for me in my time of need. 

Tomorrow would be transplant day, and I was ready. 

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.

Thursday, August 23, 2012

The big news.

By the time I had finished up my bone marrow test biopsy again on Friday, my uncle Eddie was on his way to Halifax with my siblings.  A.D., my brother was 17 at the time, my sister, Virginia was next at 12, and Vanessa, the baby was ten years younger than me at 9.  I remember them saying that they huddled in the backseat all the way to Halifax as the air conditioning made them chilly, funny the things that you remember.  My uncle Eddie is only a few years older than me, and I thought he was the coolest guy growing up.  He always had a cool car, played loud music, but paid attention to his young nieces and nephews when he didn't have to.  And not only was he fun, he was the guy that you knew if you needed a hand he was there, and often did not even have to be asked.  When Mom called home, word spread that that my siblings would have to go to Halifax, I am sure before anyone else tried to make the arrangements he was on his way to pick them up.

Doctor Neville said I could leave the hospital, but had to come back for the nights.  I did not want to tell my aunts and uncle, and friend how much pain I was in from the two biopsies, so when they said they wanted to take me out for Chinese, I did not want to make the situation more boring for them all, so off we went to the China King Buffet on Quinpool.  I could tell Dad was either not interested in the food, or had too much going through his mind, as all he did was push the food around on his plate.  I was the same, the thought of eating anything kind of turned my stomach, and it almost felt bizarre that life seemed to be just as busy as when I had gone into the hospital on Wednesday.  I looked around at the other tables and wondered when I would go to another restaurant and enjoy the meal and not be thinking about such things as chemo and bone marrow biopsies.  I wondered if I would ever get to do it again. 

Then it was back to the hospital, and it seems almost comical now when I think of everyone gathered around my bed saying good night.  Everyone was reluctant to leave me there, and they did not know what to say.  The nurse came in and said that the kids would all undergo blood tests in the morning to see if anyone was a possible match.  Needless to say, I don't think any of us got much sleep that night.

After the tests Saturday I was sprung again for the day, and felt like doing absolutely nothing.  I was just thinking too much, and was so distracted that I was not good company at all.  But by the afternoon I was climbing the hotel walls, many were calling my mother at the hotel, and she kept repeating all that she knew over and over again.  Suddenly I did not want to hear about being sick, I wanted to run away and never go back to the hospital.  As it was, I was counting the hours and minutes until I had to go back to my "new reality".  And that was when the phone rang for me.  School friends Suzanne and Deanne were in Halifax, and had gotten together to see if they could do anything for us.  And since I was out for the day, they asked if they could entertain me for a while.  The Buskers were in Halifax for the annual big festival, and they came to pick me up to walk down along the waterfront.  It was so good to see them, and talk about normal things, I could tell they did not know how to bring the "illness" up, and I did not want to talk about it.  We watched some of the performers, and looked at the boats just like everyone else was doing.  I gulped the air like I would never be outside again, I know that sounds bizarre, but my senses were in overdrive, and I can still remember every smell, and even the things around me seemed like they were in techno-colour.

Mom had not wanted me to stay out too long, like I was suddenly going to break if I was out of her sight for too long.  But I remember pushing the visit a bit longer, and we headed to Wendy's for a late lunch.  It was then that I told them some of what the doctors had said.  I was pretty detached, and unemotional, but did not realize it until I looked up and saw the tears sliding down their faces.  It must have been bizarre for them too, we had all grown up together, played hockey, ringette, and ball together, and had countless sleepovers during the years.  We had all been so sheltered while growing up, so it was hard to know what to say when you had never even heard of this stuff before.  I remember them both telling me that I would be okay, and while I wanted to believe them, and I wanted to reassure them, I just did not know any more.

Sunday would be my last day of "freedom", and it was raining.  We did not really do anything, just hung out for the day.  I think at that point, none of us really knew what to talk about any more.  My aunts had gone back home, there was not much to do except sit and wait.  The nurse had said if there was a match we should know by the end of the day Saturday, or early Sunday.  As we sat in the later hours of the afternoon, none of us said it, but we all were so sad that we never got the call.  Every time the phone rang, we all stopped talking and waited for the first few words to let us know who was on the phone.  Around supper time there was a knock on the door, and it was another school friend, Geoffrey, who wanted to take me for supper.  I wasn't up for anything to eat, but I wanted to go for one last little walk before going back to the hospital.  We were staying the Lord Nelson hotel, and I convinced Mom that we would go walk around the inside of the Spring Garden Road mall.  Geoffrey had talked to Deanne, and I could tell from his quietness how worried he was.  We walked for a bit, and then when I said that I better go back to Mom he simply stopped and gave me a gigantic hug and said he would pray for me. I tried so hard not to cry, we were all kind of brought up like that in Mabou.  You didn't go on about how sad something was, or how you were praying for someone.  You knew that someone loved you, but you didn't hear it all the time.  The mall was kind of dark, and empty, and as we made our way up the escalator I quickly asked Geoffrey if he had any change.  I flung the quarter over my shoulder and into the water fountain below.  I squeezed my eyes shut tight and wished with all my might.  I didn't wish to be better, or to wake up from a dream.  I didn't wish that chemo would be easy, or to even find a match.  At 19, with an hour to go before I was back to the hospital for what I thought could be the last time, I wished with all my might for a family.  I wanted to live and fall in love, and have babies and experience so much.  I didn't want to die without those things, it just seemed too sad.

Before going in the hospital I had been working at Mabou Gardens, with such a fantastic wonderful group of girls, many who are still my absolutely best girls.  You know the ones...you can not talk for months, and just pick up where you left off.  You can belly laugh with them until it hurts, and you share stories that no one else "gets", you just have that history.  When we were young and working there at one point we had put pots on our heads in a silly moment, and of course, our boss walked in at that moment.  We were forever after known as the "Potheads".  I loved Shelly and Tracey like my own sisters, and missed them already.  When I arrived at the hospital there was a teddy bear with a balloon tied to his arm, the card said, "Love from Potheads 1 and 3.  I was 2.  Only Mom and Dad had brought me back that night, and the rain just matched our blue moods.  The nurse came in behind us as I sat on the bed and read my card. 

"Is that a congratulations card?" she asked.  I raised my head and looked at her, was she taking some of the good drugs on the sly?  Why would someone send me a congratulations card?  She looked at me, and then Mom and finally turned back towards the door where Dad was staying.  As she took in our long faces, she almost started crying as she asked if we had gotten the call.  No, we had not gotten any call. 
 I will never forget how warm her arm felt around me as she lowered herself on the bed beside me and put her arm around my shoulder. 

"Oh, Verna, they found a match.  You are going to have a bone marrow transplant. We start tomorrow."  And that was it, another beginning.  I had another chance, and my 12 year old sister, Virginia was the lucky winner.

Mom and Dad headed back to the hotel to share the great news, and I pulled my curtain and got ready for bed.  I am sure I was not laying there 10 minutes when the tears started.  I was terrified, almost in a panic.  I still did not know what was a head of me, but I did know that I had heard many horror stories of chemo and treatments in Halifax.  Suddenly the curtain parted a bit, and it was Brian standing there helping Paula to come to my bed.  He helped her lay down beside me, and then left us.  I had never had a total stranger lay next to me in bed before, never mind that I was crying and feeling so overwhelmed, but it felt like the most natural thing in the world for her to do.  As we lay there over the next hour, she cried with me, and held my hand, and told me everything that she could about what I should expect.  She told me how everyone reacted differently to the drugs, but that everyone lost their hair, and everyone got sick to their stomach.  And then she told me some of the side effects she had, and what seemed like the normal things for the others in the room.  I told her everything the doctor had said, and asked her what different things meant.  In that hour, I fell in love with that woman, she was in so much pain, and was suffering terribly, and she reached out to me to help me. I don't think I have met many that can do that so unselfishly.  It is funny, I don't really remember what she looks like physically, but I can say without a doubt she was one of the most beautiful people I ever met.

When she felt like she couldn't talk any more, she softly called for Brian, and he helped her back to bed, but before she left, she said she would be right there waiting for me when I got out of isolation, and that she would be ready to go for a walk in the sunshine with me as soon as I was ready.

In the morning I was being moved into isolation, which was the "bone marrow unit" at the end of the hall on the 8th floor.  I was starting to realize that I would be physically alone in that room, but I would be surrounded by many in other ways.

Tomorrow would bring more challenges.

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,  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 have 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 through 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 bone 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 devastated 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.

Saturday, August 18, 2012

How bad could the first few days be?

For my first bone marrow test, the doctor was late coming back, and by the time he returned, I had insisted that Mom and Dad go get some lunch.  I remember saying to them that even if the doctor came back, it was just a test. 

If you are queasy, or don't like too many details, this might be a part to skip. 

A nurse came in just before the doctor to "prep" me.  I told her I had never had an IV before, and that it was still hurting my hand, and I asked her if this test was going to be worse than that?  She was a portly, older woman, who smelled of baby powder, and her shoes looked like they were the same as some of the nuns that I had lived with the year before, like they were sturdy and comfortable.  As she rolled me onto my right side to face the door, she pulled the curtain around the bed and said that it was not be the nicest test, but Doctor Hayes was good, and it would be over fairly quick.  My rolling table was holding a wrapped up tray, and once the nurse had me rolled on my side, she put the tray behind me, and a quilted pad under me.


It was a good thing I couldn't see the tray, I think I would have been running for the door.  Now, I would have been googling bone marrow test before I had to have it done, but back then, I had never heard of it, and I had never even heard of google before.  To tell you about this, I tried watching it again on youtube, but I just couldn't, I had to turn it off.  Basically, all the above gadgets are used to get to the middle of your bone, and a sample of your bone marrow is extracted. 

I remember the doctor getting me to pull my knees towards my chest, and me squeezing that poor nurse's hand so tight that I must have left an imprint of my own.  She kept reminding me to take deep breaths and telling me I was doing great.  My body never worked very well for anything they did, and this test was no exception.  I had reacted to getting the blood transfusion, so they said for others I would have to have benadryl before receiving the transfusions.  And now the doctor was having a hard time getting a sample of my bone marrow.  And due to the fact that they wanted my bone marrow to give an accurate result, I could not take any drugs before hand.  I just kept wanting to be knocked out, as the doctor moved the needle around and I tried hard not to yell out.  And then he said we were done, and he wanted me to stay  on my side and the nurse would be back in a minute to get me cleaned up.

They left the room, and even though it was done, it was then, as I laid there alone that I started crying like a baby.  Why was this happening to me?  When were they going to say I could go home?  And at that moment, my father walked around the foot of the bed, and took in the mess behind me and turned as white a sheet.  All he said was, "You okay?"  And when I answered yes, he spun on his heel and went out the door.  I never asked him if the sight of me with my backside hanging out or all the blood and instruments were what sent him to the hall.  I never asked him if he felt sick to his stomach, or if he just didn't know what to say when he say me crying. But the nurse must have saw his leaving because she came bustling in to get me cleaned up, and to tell me that I was going to have a doozy headache and I probably wouldn't want to lay on my backside for a while.  Great, I thought, like the test wasn't enough. 

The rest of that day was like an extra long Sunday.  You know those days when you don't really have anything to do, and the time just drags.  I remember falling asleep around 2p.m. and waking up thinking I had been having an unbelievable dream.  But I was still in the narrow hospital bed, and my parents were still sitting staring at me, and it was only 2:45p.m.  We waited all day to hear some word from some doctor, but nothing.  Just after supper I was told that I was being moved up the 8th floor, because the doctors that I would be dealing with mostly worked up there. So then instead of sharing a room with one other woman, I was moved into a room with three other women.

Paula Conrad was in the bed directly across from me, and I soon realized that her husband, Brian would also be spending the night with us.  They taught me about real, true, never settle for anything less kind of love, and I still love them so much for how much they shared with me.  That first night on the 8th floor I felt like I was spying on them as I watched Brian put cool facecloths on Paula's forehead, and brought her cool drinks when she said she was dry.  As the night got worse for her, Brian brought her a wash basin so she could get sick, and when she did not want to use a bed pan he carried her to the bathroom.  Every time she would get  sick, he would get a facecloth and clean her face, and wipe her neck and chest off.  I had never seen such tenderness and I felt like an intruder. 

The other two room mates shared their stories over breakfast the next day, but you know, I never asked Paula what kind of cancer she had, even though she was so sick, she never talked about it.  Instead the next morning she got Brian to get a wheel chair and take her out into the sunshine to start her day.  They landed back with a get well card and a troll doll for me that had rainbow colored hair, and was holding a get well sign.  Troll dolls were kind of "in" at the time, but I had never seen one before, but I liked his chubby cheeks and evil grin.  And how nice of this couple to go buy me something when I had just seen them both put in a night from hell.  They sat on Paula's bed and talked about the nice day, and pulled out some magazines, all with covers of Elvis Presley.  Neither of them knew I was a huge Elvis fan, my friends and family had picked on me about my love of him for years.  I immediately felt even closer to them, and we talked about how they had been able to see him in concert before he died.  I could not help thinking these were maybe some of the coolest people I had ever met, how lucky was I to have such a great room mate!

By the time Mom and Dad arrived I had made some new best friends.  I had arrived Wednesday, and Friday morning I had my first visitors.  Who was it?  And was it a sign of some kind?  I thought nothing of it at the time, but it was Tim's brother, Craig, and his father, Cliff.  Tim is now my husband.  I did not know his father very well, but I loved his brother dearly, so I was both surprised, and happy to see them both.  But we had only just started to chat when a group of doctors came in and asked if they could talk to me.  It was my introduction to Dr. Tom Neville, but he was with a group of about six residents, and they were kind of talking over and around me about what tests had been done, and what would be done next.

Just as they were finishing up was when my parents arrived, and Doctor Neville asked if he could talk to all of us in  a small room at the end of the hallway.  As I shuffled my way down the hall, I turned back to see Craig still standing there with Cliff, and I remember thinking I would rather go and sit and chat with them then listen to what this doctor was going to say. 

Doctor Tom Neville closed the door behind us and asked us to sit down, and you could feel a heaviness descend on the room.

Friday, August 17, 2012

The first night of the "big" hospital.

It is funny the things you remember when you have a huge event in your life.  Just like remembering every detail of the day your children are born, or the day you get engaged, so too do you remember strange details when you are told that you are seriously sick.  At least that was my experience, I have heard some people say that when they were told bad news that they kind of blocked everything out, but I think I went into an almost super sensitive state, where I seem to remember every word that was spoken to me during the months of the later part of 1992, and early '93. 

So when I left you my parents and I were on our way to Halifax to the Victoria General Hospital.  Just at the sign for the small community of Creignish, about forty-five minutes from home, my Dad got stopped for speeding.  It was the first time he was stopped by a female officer, and my Dad, ever the charmer, got off with a warning.  It was the tension breaker we needed, and we had a good laugh, and finally started making small talk to pass the time, whereas before he was stopped we had sat in a stony silence. 

We stopped for gas in Antigonish, and as we stepped out of the car the heat hit us like a solid wall.  We were not long getting back in the air conditioned car to finish the final leg of our journey.  We chatted about where I was going to be living in Antigonish when I returned to college in just a few weeks, as I was making the leap to stay off campus instead of continuing to live with the nuns at a residence on campus.  My parents were a bit nervous, and I was as well if I was honest, but it seemed to be so much more freedom, and I couldn't wait to taste it.  My parents made small talk about friends and family, and talked about little things that had to be done around the house.  When we finally were driving across the bridge into Halifax, we fell silent again, and I know that all I was thinking about was how much the IV was going to hurt, and would I have to get it done tonight? 

A rain had blown off some of the heat in Halifax, and small puddles were gathered in the parking lot as we made our way across to the main doors of the VG.  Dad took a few long drags on his cigarette, and as we entered the building, I remember the cigarette arching from his hand, and hearing the sizzle as it hit one of the puddles.  And then we were inside.  And I felt like I could not breath.

To buy myself some time, I said I had to go to the washroom before going to admitting.  As I sat in the stalled bathroom, my mother knocked on my door, and asked me if I was okay, and I can remember how she sounded as if it were yesterday.  She sounded as absolutely terrified as I was, and I started to cry.  I wanted to go back to yesterday when she was telling me I had to clean my room, and that I had to organize some of my college stuff that was spread out over the basement.  I didn't want her to be scared, and I remember thinking that I needed to pull myself together and maybe they would just send me back home. 

Off we went to admitting, and it all seemed to take only a few minutes.  And then a nurse came to gather me, and I was off to a bed to change into a gown, and lay in a bed in a long room in emergency, separated from a bunch of other patients by a curtain.  At first I thought my parents were just out in a waiting room, and it was only after a half hour or so, when they were already coming to start an IV that I wanted my parents!  A nurse said they were talking to some people but that she would see if they could come in with me.  Apparently, due to the fact I had such extensive bruising, my parents were being questioned about abuse.  But mom came in while they tried, and tried, and tried again to start an IV.  Of course it would not be easy the first time I would have to do it.

A blood transfusion was being started right away, and mom was led back out to where Dad was waiting.  Another nurse came in around the curtain to hang the blood, and asked me how long I had been diagnosed with leukemia.  I almost sprang out of the bed, as I thought she had information that I needed to know, and I must have looked full of panic, as she immediately said maybe she was wrong, but that she thought that was what was on my chart. 

No doctors came to see me that first night, just residents, and nurses.  Finally around 4:30a.m., and two blood transfusions, I was taken upstairs to a room on the fourth floor.  I told Mom and Dad to go get some sleep, as I would as well.  But of course, I laid there looking at a water stain on the ceiling, and listening the poor old woman in the bed next to me snore loudly.  She had dementia, the first time she woke up she started crying, asking to to help her find her teeth.  After not finding them anywhere I started making my way out to the nurses station which was only a few feet away.  The shift change was happening, and two of the nurses were talking about the new poor young girl who had just been brought up to the floor.  I stopped dead in my tracks, holding my breath to see what they were going to say. 

"She doesn't know yet.  The poor thing, she is stage four already, she will not have long," I hoped they were talking about someone else, anyone but me, but then the nurse who had helped me get settled in the room said, "Her parents went to get a few hours sleep, they are up from Cape Breton."  I made my way back to my room, and found the teeth, sitting in a blue cup on the side of the bed and I helped that old lady put her teeth in, while I wondered how these doctors had gotten my test results so very wrong.

Sure, I had some bruising in the weeks before we made that terrible trip, but I was working at a garden center, and we were always lifting and reaching, and banging our knees on the benches.  And yes, I guess I was tired, but at 19, I was out with my friends after working all day, and didn't all teenagers want to sleep on their days off?  But looking back now, I know that the periods I was having in the months before I was admitted to the hospital were not normal.  But again, I was on iron pills, as my mother and all her sister's had one "women's issue" over the years, so I thought at the time that I had long terrible "times of the month".  It was normal, wasn't it? 

Around 8a.m. the first of many doctors arrived, and promptly informed me that they had no idea what was wrong with me for sure, so further tests would have to be done, starting with such basic things as bloodwork, and that later that morning I would have a more definitive test done, called a bone marrow aspiration.  It immediately did not sound like something that was easier than an IV, and I felt that panic close in on my chest again.  The doctor said that he had heard that they had a hard time getting my IV, so he was going to come back and do the bone marrow test himself.  Oh, I thought, this test can be done in my room?  Maybe it would not be too bad afterall.

Mom and Dad returned to still not having any answers, and like me, had no idea about some of the tests they were saying they were going to do.  It was all sounding serious, and none of us had any medical knowledge or experience.  The most time any of us had been in the hospital was when we were born, and when Mom was giving birth.  What did we know?

Tune in again for the next part of my story, and bring your hankies for the next parts! 

Tuesday, August 14, 2012

A great challenge remembered.

Well, I have said it before, and I will say it again, life is never boring at the Murphy household.  At a later date, I will write about the last few weeks in great detail, but for now, I am just trying to distract myself with a different project to take my mind off the stress of my husband, Tim, being in a very serious car accident.

For the last few days I have been doing some writing challenges, and thought I would take on one subject in great detail over the next week as much as I can.  At first I could not decide on a subject, but then I decided, what better time to take on an old story that has been sitting on the shelf, since it is actually 20 years old this week!

So I hope you will join me on this journey into the past, and see where it will take me over the next week, and I hope that even though you may have never experienced anything like it, I hope that you will take something away about life, and how our experiences shape our lives.

I always think of this story starting on the 12th of August, 1992, but the 11th was more of the starting day.  For a few weeks my mother had been mentioning that I should go get a check up before going back to college, and to see  what our family doctor, Dr. Bernie MacLean thought of some bad bruises I had mostly on my legs.  But I had just turned 19, and I really could not be bothered to take the time to go to the doctor, as I did not think that anything could possibly be wrong with me.  But on 11th my mother was determined I was keeping my appointment, so she told Dad to drive me there while she was at work so I would not try to skip out on it.  I can even remember telling Dad we should go do anything else but sit in the doctor's office on a hot summer afternoon.  But off we went, and it was a very mundane.  Doctor Bernie, simply put, is one of the most intelligent, respected doctors you will ever meet, and he is also greatly loved by the people who have gone to see him for years.  He had in fact been the doctor who brought me into this world, and I love him, and always took his word as if it came from the bible itself.  He took a look at my bruises, and since he has such a busy practice, it was too late in the day to catch the lab at the hospital, so he wanted me to come back in the morning for a few simple blood tests. 

So the morning of the 12th I thought if I had to go back for blood work, I would at least have a bit of a girls day, so I brought my sister, Virginia, who was 12 at the time.  After the blah half hour at the lab, where I got to catch up with a few staff that I knew, we were off to do a bit of jean shopping for back to school.  Our first hint that something was up was when we walked in the door of my parents house later that afternoon.  I first thought Mom and Dad were maybe upset that we had taken a bit longer to come home than we had planned, because the looks on their faces were so serious, that I actually stopped just inside the kitchen door where they were standing together.  Mom said Doctor Bernie had called, and that he wanted me to call him.  I thought this was so odd, because I could never remember anyone ever saying that Doctor Bernie had called them before.  I sat on the steps leading down to my bedroom as I called him back, and nervously wrapped the phone cord around my fingers over and over again. Apparently my blood work had come back a bit odd, and Doctor Bernie said that I had to not just go back to Inverness for more tests at the local hospital, no, I had to go to Halifax, the capital of the province, with the biggest and scariest hospitals that you could find.  I remember just being totally confused, why did I have to go to Halifax?  What was wrong with me?  Only people in terrible accidents, and those who were in the last stages of dying were "sent" to Halifax from our rural areas of the province.  Doctor Bernie did his best to assure me that everything was going to be okay, but when I asked how long I was going to have to be there, and he said maybe a week, I actually felt sick to my stomach.  A week!  How could I have to go to a hospital for a week?  Don't forget the fact that I was 19 at the time.  He was not sure of what was wrong, but that my counts were very low and I would need a transfusion.  Well, I begged Doctor Bernie that afternoon not to send me away, to do the transfusion himself, and didn't it mean I would have to get an IV to get a transfusion?  I had never had an IV, but imagined it must be one of the worse things a person would have to experience in their lifetime.  But he said I would be in good hands, and that I had to go.

So after a flying trip to the next town over to see my best friend in Port Hood, and pick up some new underwear at the Co-op, I was standing in my parents yard beside the car, trying not to cry as I looked at my three younger siblings standing on the doorstep with their arms around each other.  I wanted to just go back in the house with them and go in my own bed, but instead, I got in the backseat and we began our three and a half hour car trip to Halifax and my unsure future.  Little did we all know what was to happen to our family in the coming weeks.

I hope you will stay tuned this week, as I take you through some horrid, some beautiful, and all very real memories.