Tuesday, December 1, 2009

Chad Clark Warren
February 11, 1975 - November 28, 2009

After 9 years of an intense and determined battle, Chad has quietly succumbed to Multiple Myeloma.

Chad was a rare individual who touched so many people in a meaningful and lasting way. He leaves an immense void for his family and friends.

Chad is survived by the love of his life, Megan Williams, his parents, Clark and Sandy, his sister Jennifer (Bill), niece Lauren and nephew Ben. His memories and life will be cherished by his numerous aunts, uncles, cousins and friends from around the world.

Special thanks to Dr. Stephen Nantel, his associates and all the nurses and specialists who have collectively provided Chad with extraordinary care while being a patient of the VGH Bone Marrow Transplant Program. The nurses and staff at The Krall Centre Outpatient Clinic, where Chad spent countless hours, deserve special mention.

Also thanks to the anonymous donor who selflessly donated marrow for Chad’s two bone marrow transplants, giving him an extended chance at life; and to Katharine Sedgwick who was the rock for Chad throughout his diagnosis and first transplant.

A Celebration of Life will be held at Hollyburn Country Club (950 Cross Creek Rd, West Vancouver), on Saturday December 5, 2009 from 12:00pm-2:00pm.

In lieu of flowers, please consider a donation to the Blood Disorders/Hematology Clinical Trials Unit at VGH in Chad’s memory.

Cheques can be made out to the VGH & UBC Hospital Foundation. (Comment line: HCTU - Chad Warren). VGH/UBC Hospital Foundation, 855 West 12th Ave, Vancouver BC, V5Z 1M9

Online donations can be made at: www.tinyurl.com/chads1million. (‘In Memory’: Chad Warren)

His family and friends encourage everyone to save a life by taking the time to register as a bone marrow/organ donor and donating blood on a regular basis.

Monday, November 30, 2009

Our Warrior Sleeps


(Its Megan writing)

Chad Clark Warren passed away peacefully on Saturday night (November 28th, 2009) at 7:30pm.

He was comfortable, sleeping and most importantly surrounded with people who love him.

Details for the service will follow.

Friday, November 27, 2009

This is Megan writing


Good morning Team Chad.

I just wanted to post a note and say, that Chad is resting nicely.

While our warrior sleeps and re-gains his strength, I wont write for him, but I will keep writing - I will try to keep my postings as up to date as I can...so feel free to check in.

(www.megansfairy-tale.blogspot.com)

Go Chad go.

Wednesday, November 25, 2009

The Aftershock



After a 12 hour day, including 4 hours of dialysis I got home only for my heart to bounce out of control once again. Just like halloween night. We made the decision, amublance was called. 3 of them arrived.

Next thing I know it they were yelling 'code 3 obitan!' with sirens screaming, on the way to VGH where I just was.
Heart racing. No time this time, out came the shock pads. Everyone was confident. Megan and JJ were asked to leave. The last thing I said to myself was "do or die". And BOOM. They said I wouldnt remember, but I remember. I remember saying "holy shit". I dont remember the next 15 minutes, but my heart was stable.

Spent the last 24 hours in emergency, and have just been moved back up to the transplant ward....

Thursday, November 19, 2009

Numb

I lay there emotionless and exhausted while they stick me, sit me up, sit me down, replace bandages, shoot saline up my nose, fill me full of fluids while trying to take some out. Almost everyday I will be going in to the hospital - one day for hemodialysis the next for a multiple myeloma drug called Velcaid. I will begin taking high dose steroids every few days in conjuction with another mm drug called Thalidomide which I will take daily. This is not going to be easy with a bad heart and failing kidneys. I'm grateful something is happening but frightened to be at this stage. Things happpen so quickly and right now there isn't the time or energy to be worried about much of anything. I am not myself and may not be for a little while to come. Having a shower and making it down to the car where my dad waits for me each day takes it all out of me. I'm having trouble holding a conversation but deep down I know what I'm doing. I'm preserving myself, storing up my energy so I can continue to fight another day.

Tuesday, November 17, 2009

Still waiting

Last night I finally fell asleep for a few hours only to wake up to a minor blood bath. At about 3am I awoke to a blood soaked shirt and pillow. The line in my neck decided to spring a leak. Meg and I did our best to clog it up till morning where we then hustled over to the clinic for repair. They bandaged me up and the rest of the day has been a write off - for Meg to. I've been trying to sit up as much as possible with my head bobbing to the left, right, front and back....like a little kid in a car seat. So tired! I'm still waiting to hear from my doc if i'm going to start something soon. I'm back in tomorrow for blood transfusion and hopefully I will begin some cocktail of chemo and whatever drug they may or may not come up with. We've offered to pay for the drug which just might happen...it's all good just give it to me. Cancer doensn't feel good and there isn't much to do about that but get rid of it.

Monday, November 16, 2009

Thanks Dad

Today proved to be more challenging than most. I'm carrying too much fluid and it's affecting me greatly. It was a big day with multiple appointments that would take me all over the hospital. My dad has been driving me to and from appointments during the week when Meg is working. He picked me up mid morning and dropped me at the front of the hospital. He always asks if he can stay and help but I hate inconveniencing people and often say no. Over the years I've spent much of my time in hospital alone despite all the support I have just because it's easier that way...sometimes. My first chore was to get a chest x-ray so in I went to take my seat in the waiting room. As I waited I knew I wasn't well and was going to have serious trouble getting through the day. A few moments later I could see the outline of my dad walking toward me...I felt so relieved. First thing he did was get me an iced tea for my cotton mouth...so good. A father knows his son and he ended up spending the whole day with me wheeling me around the hospital from appointment to appointment. He's very patient considering hospitals are the last place either of us want to be. He got me through this day like so many before.

Sunday, November 15, 2009

One long day...

The past few weeks has become one long continuous day. I take it hour by hour constantly shifting looking for the longest amount of relief I can get out of one position. Sometimes I sit up, sometimes even stand but mostly laying propped up on my back. I enjoy it when I'm well enough to walk to the car for an appointment. It's more like a swagger cause I feel like a pimp in my baggy sweat pants and hoody. It never lasts quickly turning into a panicked shuffle as I become short of breath desperate to sit down. The pain meds are masking reality and giving me some comfort. I've been non existent to Megan just a drone who mutters occasional non sense. Bedtime means nothing just a continuation of the day as I slip in and out of a medicated state. I'm up every hour to pee, pace or move into a new resting position. Sometimes I turn on the radio, read or maybe listen to the TV. The background noise dictates some entertaining dreamlike scenarios for me...which I enjoy as I know I'm getting some rest. What will it be tonight?...maybe a good eighties movie where Corey Haim and I can battle teenage angst or a cooking show that makes me so hungry I wake up craving an exotic food I've never heard of!?

Speaking of craving my buddy Jesse came by tonight with fresh Cactus Club thai wings something I've been craving all week. He and the family are heading back down south tomorrow after a week long visit. Sad to see them go but looking forward to heading down that way to spend some time someday soon. Jesse and I always have good talks, talks that you only have with a few people in your life. He's always been like a brother to me and I'm so proud of the life he has created for himself...he deserves it.

Friday, November 13, 2009

Meg's blog - The Threesome



Taking a break from the hospital room last night I had coffee with my dear friend Christy. I was telling her about the good, the bad, the ugly of Chad and I's situation. Although I was talking lots I was also having a hard time figuring out how to properly describe how this situation and relationship feels.

Then she said it. Once sentence and it was as though she had taken all the messy medley of my thoughts and put it into one sentence.
"Its as though you are in a threesome - a polygamist threesome".
Exactly. Chad and I have three people in our relationship. Chad. Me. and Myeloma.

I love 'whoever' he comes with.
I came into this relationship almost 5 years ago knowing very well there was another component to it. Chad had already had a pre-existing lifetime partnership with Myeloma. I am ok with that. I know what I signed up for.

As our years together went on and his health improved, I became number one in the relationship. Once in awhile, Myeloma would come back and I'd have to share him with 'her' again.

Sometimes 'she' would take priority and I'd be left there waiting for him to come back. Since his transplant and recovery - I have been the favourite. We had a brilliant summer together and a totally exclusive relationship. I was sooo happy.

Then September came around and 'she' came back. The threesome was on. We embraced it for a few months, him, her, me...trying to find a balance...but Im afraid in the last week, 'she' is full priority and I am left waiting.

'She' is far more powerful than I and I understand why he makes 'her' such a priority. He has to. I would have it no other way. That doesnt mean it doesnt hurt. It hurts knowing that he doesnt have energy to spend with me because he is so busy working on the relationship with 'her'.

Yesterday was the first day (in what has felt like months - but really only a week) that Chad and I spent the day together, and Myeloma took the back seat.

We laughed. He rubbed my back when I sat next to him. He held my hand. We kissed again. I left the hospital feeling so happy. - And even though I know when I left he spent the night alone with 'her' again, I know he loves me. I know that 'she' will leave again and we'll be together soon.

Lucky

I realize I can only control so much in my life. I control how I approach each day and the situations that arise, how I treat people and what I put in to my body. Life can become pretty simple when it seems most complicated. There isn't time to think about the negative, no time to be angry just time to appreciate everything and everyone around me. I can't say enough about how happy it has made me to read the words of so many people I love and respect.

Today I was desperate to get some relief, could no longer think straight...I needed help. I had my scheduled appointment at the BMT day care unit,renamed the Krall Center after Diana Krall's mother who passed of Multiple Myeloma several years ago. Diana and her family have been a huge support putting on extravagant events to raise money for the center. I've been lucky enough to meet her and her family - fantastic people. Anyway my friend Katharine came over this morning to help me out...cause I'm a useless tit. She was great - I wasn't up to talking much but she got me food and to get ready for clinic. I'd been anticipating this appointment for days as I've become more and more uncomfortable. My dad picked me up and stayed with me to help sort things out. I was lucky today to get two of my favorite nurses. It makes such a difference, I've known them a long time and respect them immensely. They listen to me whine about everything and soon enough the doctors came in. Right away they put be on a med to drain fluid from my body which causes serious discomfort to a person with cardiac problems. They wrote me a prescription for hydromorphone which takes the edge off and masks the real issues...fine with me. They set me up with appointments to see everyone following my case, what more can I ask.

My lead doctor came by for a visit and is working hard to find something for me. He's hoping early next week knowing I can't wait much longer. My dad asked lots of questions and I was grateful to have him there. We know they're doing their best but we have to keep pushing them. I will go back in on Sunday for blood and platelet transfusions and Monday I will see the various specialists. As long as something is happening I have a chance...

Thursday, November 12, 2009

Struggling...

Having hard time getting comfortable and hoping tomorrow they'll give me something to take the edge off....something powerful. Still no word on treatment and things aren't getting better. It's unexplainable feeling yourself being destroyed from the inside out. Each day I become weaker but never giving up hope just wondering when something is going to happen. Every little ache or pain I assume the worst always reading in to what's going on. Getting up to the bathroom or kitchen is my workout and once I'm up it feels good to stand. I think if I can get on some pain relief it will put me at ease. It's draining never getting a break, not being able to sleep. I've been sleeping out on the couch cause it's the only way I can stay propped up - the most comfortable position for me right now. Meg has been coming out to sleep on the other couch just to help comfort me...what do I say about that. We are doing our best and seem to have a good system going right now.

I'm overwhelmed by the messages I've been receiving so know that I read them all with a smile. Right now it's game time and all my energy goes to this.

Wednesday, November 11, 2009

The lighter side

As I've mentioned before my first admisssion to hospital was August of 2001 for transplant #1. Back then you'd be allocated a head nurse who would tend to you throughout most of your stay - not so anymore. I had the best one, her name was Tamira. She'd make me smoothies, sit and talk with me for hours and played a large role in getting me through that process with my mind in tact. I was such a rookie to the medical world never having been hospitalized before. I remember after the first two weeks of being bed ridden and quarantined to my room I became very depressed. Tamira came in took one look at me, asked me a few questions then said she'd be back in a minute. She pounced back in the room a few minutes later with a grey and white capsule for me to take. She said it might help me get through the days and I was all for that. Maybe an hour later something began to come over me. Over the next few hours i bet every nurse working the ward that day came in my room to see the giggling idiot. It was just like I'd smoked some of the sweet sweet herb. I was blasted but it brought me out of my funk. Later that day several friends and my parents happened to show up at the same time. I can still see their faces standing at the edge of my bed staring at me not really knowing what to say... probably cause I wouldn't shut up.

(Slighlty Graphic)During my hospital stay for the second transplant after all the drama had subsided I was moved back up to the BMT ward for my final week. I'd been through alot and was on plenty of narcotics. My days were going ok but the evenings would bring some ridiculous events. Due to an earlier catheter accident I was peeing heavy blood and clots that the nurses would call "merlot with giant leaches". Anyway I slept with a pee bottle attached to my bed. One night I must have been really out of it and had managed to fall asleep with a full bottle of this "merlot and leaches" resting on my chest. I woke up in the middle of the night with the entire thing spilled all over me. I buzz the nurse who comes in to see this horror movie and even worse she has to clean it up. The very next night I managed to get myself to the bathroom to do my business but became disoriented and confused about where I should be peeing- in the bottle or the toilet!? I started spinning around pissing merlot all over the bathroom . I buzz the nurse and she opens the bathroom door to see me standing in the middle of the bathroom with another blood bath surrounding me. Of course it was the same nurse as the previous night and to this day she does not like me. The next night one of my favorite nurses was sitting at the nursing station as I was walking the ward. Just as I was passing in front of her she says to me, without looking up and in this sarcastic voice .."So what are you going to do for us tonight..." Too funny. Last week she was my nurse one night and I couldn't help but laugh when she walked in for the first time.

Tuesday, November 10, 2009

Bitter Sweet

After another long day and many visits from the various doctors who are following my case it was decided I could go home. I was so happy to take in the fresh air as my dad pulled the car around to the front of the hospital. For that moment I forgot about everything, took in a few deep breaths, a short walk to the car...best I've felt in weeks. Even the car ride home was fun, I felt like a little kid seeing the city for the first time. I arrived home to a clean apartment and Meg looking for a kiss. Our new couch had arrived last week so I hadn't seen it yet and was so excited that it fit. It makes things so much cozier in this little apartment. My friend Jesse and his wife Nicole arrived from Louisiana today and came by for a visit tonight...so good to hang with them. They're here all week staying with family so we should see lots of them.

It's nice to be home but I'm not feeling great, my kidneys aren't improving and my disease is running wild. They still don't have a plan for me although my doc is working hard to find something. The cancer agency rejected a bid for a therapy that has helped me in the past and now he's trying to get in touch with the company that makes it to see if they'll release some to me. My cancer is very aggressive and everyday counts so I'm feeling like someone is kicking me in the stomach over and over...could also be constipation but either way. Anyway I will take it hour by hour, day by day and enjoy my time away from prison. Meg has the day off tomorrow and I'm expecting some visitors in the afternoon so I'm excited for that. If I wasn't so uncomfortable things would be easier but cancer has no conscience and feels no remorse for what it does to its victims. It's taking all my focus to keep it together and all I really look forward to is those moments when I feel the symptoms ease and I can be myself.

Monday, November 9, 2009

To the followers of this blog

Thank you for caring and thank you for sharing your thoughts and words of support to Meg and I. I never thought anyone would be interested in this and that was never the point but this has turned out to be a very positive outlet for me. Most importantly I've heard from so many people I haven't spoken to in years. I have so many memories with each of you. Everyone faces adversity, everyone has their story - I just chose to share mine.

I want to say a special thank you to everyone involved with the fundraiser that's being organized a few weeks from now at the Mosquito Creek Grill in North Vancouver. A young lady named Danielle Jenvey put this together - all I can say is her mother Sharon raised a special lady. The money raised will be going towards my campaign to raise $1 million for Multiple Myeloma research. I want to thank all our friends who continually show us support, bring cookies and muffins, books and DVD's...we are stocked for the year now.

I've been isolated in this room for a week now and I'm truly praying that the docs come up with something. I don't want this blog to be about my final days. I want to be writing about better days a few months from now. I'm a positive person and hate that I have no good news to report. Bureaucracy is creeping in to the process which seems to happen more and more frequently. My doctor fights tooth and nail with hospital big wigs for approval for me to receive certain treatments. It's scary to think my life is coming down to this. I go through waves of panic but then I become really competitive. I refuse to accept people telling me how sick I am...as long as they don't give up on me I can make it. That's it I'm scared to death they will give up on me. Too much money has been spent on me, too much time and energy...bullshit keep me alive and I'll make a difference. The longer I'm alive the more hope I can give other myeloma patients, the more awareness I can raise. Thanks for not giving up me.

Saturday, November 7, 2009

Motivation

I'm trapped in this body that used to be capable of so much and could take me anywhere. I'm still an adventurous, competitive person underneath - who thrives on physical activity and constant stimulation. That may be the hardest thing I've had to let go of over the years. I want so bad to be able to step out on a court and play hard without worrying about the consequences to my body. I want to make it to Australia come March to see my friends and explore that country. I want to work again and feel the satisfaction of accomplishing something each day. I want to be able to keep up with Megan. I want to reach this fundraising goal and celebrate the victory. I want to see my niece and nephew grow up and maybe even have kids of my own. These are some of the things that motivate me to keep fighting...and this guy who keeps doing laps around the ward every hour - I'm coming for him as soon as they let me leave my room and "there will be some rubbing...cause rubbing is racing."

I sit in this hospital room with only my thoughts. I'm tired of TV, sick of laying down and had enough chillen. All I want to do is get out for some fresh air. Whenever I'd get sick as a kid my dad would always tell me to go out and get some fresh air. There is definitely some short term relief in that but it may not solve all my problems. Today though I'd settle for some short term relief and the rain on my face...

Friday, November 6, 2009

Inspiration

I started this blog one week ago but it's been in development for many years. I tried keeping a journal in the past but my thoughts weren't coming out the way I wanted. So what changed...why now? I suppose it started with my desire to give back. So much has been done for me over the years, hundreds of thousands of tax dollars spent on my treatments. The time and energy of family, friends, nurses and doctors who continue to care for and support me. As much as I appreciate everything it has taken it's toll on me. What is my purpose?...to drain the system and everyone around me!? I'm still alive for a reason and I've spent countless hours thinking how I can make a difference. Slowly I realized that it wasn't going to happen overnight, it was going to happen little by little. I want to be there for people, help people...support people. Last year I promised myself I'd never say no to anything and I'd do my best to be there for my friends no matter how I felt, within reason. I was so excited this past summer that I was able to make it to the wedding of my best friend from university. Brennan lives in Texas stands 6'4, weighs 265Lbs and looks like a defensive back in the NFL -probably could have been. His heart is as big as he and when I first got sick all those years ago, he came to see me three times in a six month period. He would force food into me as I was half the size I was in college and struggling to put weight back on. One visit I gained 8 Lbs thanks to him. Anyway he met a beautiful girl, Amanda, who shares his interests and keeps him in check. I was still feeling pretty rough from the Europe trip but I sucked it up and Meg and I flew down to share the experience with them and their families. I'm very close with his family and was so happy that Meg got to meet them all. It was a beautiful wedding and we had a blast!

Last year I began working with the VGH foundation to put together a plan to raise $1 million for multiple myeloma research. They have been fantastic in helping me develop a package that discusses my family, our struggle with this disease and why we need funding if a cure is to be found. I'm very determined to reach this goal and know it's possible. I've met many patients over the years, all of which have a story. It's for them that I've set out on this mission. Anytime I feel down I think of all the faces I've seen who at any given time, are worse off than me.

Eva Markvoort - A few weeks back I had the privilege of attending a local movie premier, a documentary titled "65 Red Roses" about a beautiful young woman who's been battling Cystic Fibrosis all her life. If you know anything about this disease you know how horrendous it is. Just a few years back she had a double lung transplant in hopes of giving her a better life. Her spirit and the way she embraces life has impacted me greatly. I can only say you need to watch this documentary and it will be airing on CBC this month. Megan went to high school with Eva and I was able to meet her that night. I wanted to say something to her but nothing came out. I know what she's feeling and maybe nothing can be said - just a hug would suffice. She is now looking to have a second transplant as her body has rejected the first. If anyone can make it through this it's Eva. I think about her often and can't thank her enough for the strength she's given me.

James Mouat Sedgwick (Jay)-It's been ten years since Jay left us, he was only 24 years young when he passed. He fought a truly courageous battle with cancer and I consider it a privilege to have been there to witness it. His strength continues to push me and no matter how bad things get, my fight pails in comparison to his. He went through more horrors in a three month period than any human should experience in a two lifetimes. His aorta blew twice - they cracked him wide open and he came back both times. He was in a coma for weeks and he came back again. The day before he passed it was his birthday and his family and close friends gathered in his room for a party. For the first time in weeks maybe longer he was sitting up in bed, smiling and talking with us while palming a football in one hand. We all thought he'd made it, he had survived 3 months of the most horrific shit the human body could take. It was a day that none of us will forget. The next day I went to see him, he looked tired as his mother was rubbing his feet. I gave him a kiss on the cheek and told him I'd be back later to watch a movie. That was the last time I saw him. A few hours later his aorta blew for a third time and after a scene I couldn't imagine...he was gone. If I accomplish anything in this life it's because he is with me, driving me to be a better person...he's inspiration!

Thursday, November 5, 2009

So here I am

2009 has proved to be the ultimate test. I started the year completely spent with no ability to deal with anything. If it wasn't for my enormous support network; BMT nurses and doctors, my family, Megan's family, friends and especially Megan -I wouldn't have made it this far. Over the year's I've gotten to know most all of the BMT nurses and doctor's. They've been there for me time and time again. They've kept me in line, laughed with me, hugged me, picked me up and carried me at my weakest moments...not sure I could ever thank them all properly but I try.

Meg's parents have played a crucial roll over the past year also. They've already been through enough before I came into the picture. I carry so much guilt that I've brought their daughter into this mess but they continue to accept me and treat me like their own. I really enjoy spending time with them. Meg's mom Brenda always makes fantastic dinners then sends us home with a bag full of groceries...she's the sweetest. Her dad Tony has become a good friend and confidant to me and always has a positive take on the day. Her younger brother Bryn reminds me of myself at the same age and makes me laugh whenever I see him. He's always up to something and I find myself living through him. He had some serious health issues not so long ago and has made a tremendous comeback. He's become a fantastic skier and is living the 22 year old dream...what a guy.

Through out the winter and spring I worked hard on rehabbing my body by using strength bands, yoga and lots of walking. Megan or my dad would take me walking whenever I asked and by May I was pumping it up some good size hills. My goal was to be able to make it to Europe for Megan's cousin's wedding in early June. I was really feeling the pressure as I knew it was a critical point in our relationship. If I didn't make that trip Megan would have been devastated and rightly so. I managed to keep it together and got the OK from the doc's. We had the most amazing trip- London, Paris and Amsterdam in 10 days as that's all the time they could safely give me. I started to fade in the last two days of the trip and rested in the hotel but it gave Meg some time to shop in Paris so it all worked out. I got home and became ill spending the next few weeks on the couch-it was worth it. The rest of the summer was great-enjoyed plenty of sunshine, several trips to the Okanagan and lots of time with friends. Come September I could feel something change and soon my doctor gave me the news that I had relapsed. I can't say I'm not devastated at least I was. They started me on a drug that I tried before but only for a short time. It was just a trial drug then but I was quickly taken off due to low blood counts. It has since become a successful treatment for many myeloma patients including my mother but last week I had to stop because of swine flu complications. So here I sit in the BMT ward, in isolation..still got the swine, waiting for the next plan of action to take care of this relentless myeloma. I'm feeling strong and ready for whatever they throw at me...I'm waiting!

Transplant #2

I must admit I'm eager to get through this particular blog and on to some other things. It was a dreadful time in my life from which I'm still currently recovering. I said to Megan a few weeks back that I really hadn't recovered from the first transplant. Anytime I'd start to recover I'd get hit again and that's just the way it's gone. The events leading up to my second transplant and all that followed took every last ounce of physical, mental, and emotional energy I had in me. For the first time in nine years I was broken.

For years I'd managed to putt along...knowing I was getting worse but never really too worried...living in the moment. In the summer of 2008 desperation had entered my life. I'd reached the point that had always haunted the back of my mind...I was running out of options. I'd had every myeloma treatment available to me and now the well was running dry. There had been discussion among the BMT doctors that maybe another transplant would be the best option. From what I understand the team was split- some agreed and some thought it to be too risky. My doc sent me to the Mayo clinic in Rochester, MN for a second opinion. The lady I saw was one of the leading myeloma specialists in the world and was so cool to me. After an hour long consultation she agreed my best chance for a better life would be the transplant. This was a tough decision for my doc because of my poor condition. It was either going to kill me fast or give me hope. The next step was finding my original donor to see if he was available to donate again. They located him and he agreed...the ball was rolling or should i say the dice. Some people never find a donor and I'm lucky enough to get one who's willing to do it twice...I have no words! I continued my last few cycles of another myeloma drug until a few months before the transplant. The date was set for Dec 18, 2008. I left my job in October as I was becoming too unwell and needed to focus on the task at hand.

I entered the hospital Dec 8th for the usual preparations-line insertion, chemo..bla-bla-bla-bla-bla-bla BORING! The transplant itself was as anticlimactic as the first and only took about a half hour for the marrow to drip in. I felt so relieved and was full of emotion and anxiety which soon came pouring out on Meg's shoulder. A few minutes later I began shaking uncontrollably and no matter what they gave me it wouldn't stop. Eventually things calmed down but over the next few days I began retaining fluid gaining 20 lbs in a week. I was extemely uncomfortable with shooting pains in my sides and back. They pumped me so full of morphine I don't remember much anymore. To this day they don't know if I'd had a heart attack, was passing kidney stones or what the hell was going on. On Christmas day my body had enough and I was no longer breathing well. I was taken to intensive care and put on an apparatus that would help me breathe while keeping fluid away from my heart and lungs. It was there they inserted a catheter wrong and I'd be peeing blood and blood clots for the next 6 months. Those first two weeks every time I went pee it was like razor blades were digging down deep in my bladder. I could go on and on about all the shit that went down but it does me no good to speak of it anymore plus and I just don't want to remember. It was touch and go-the ICU doc talked to us about putting me on life support with a stiff reminder that I might never come off it....are you fucking kidding me...hey doc there's a chance I might kick you in the balls so hard you might never get up! Another ICU doc, Meg's dream lover -Dr. Mcgoobygoob a good looking fella and nice as hell- was really positive about getting me through it and from that day forward things improved. I spent 10 days in ICU, another week in cardiac care followed by a couple more days back up on the BMT ward. By no means was it smooth sailing and I was a train wreck but after 6 weeks I stumbled my way out to the fresh air and Megan waiting by the curb..........whewwww!

Wednesday, November 4, 2009

Living two lives


So much happened between my first and second transplant. I had some healthier years as I recovered from the first but it wasn't long before the cat came back summer of '04. I began a barrage of treatments including everything available for multiple myeloma - some worked for awhile but sooner or later it would be time to try something else. My quality of life would fluctuate depending on the treatment and its side effects. I'd be in and out of hospital -sometimes daily visits were the norm other times it might be once a month. I've had hundreds of blood transfusions over the years to keep me going and I take this moment to encourage everyone to donate blood regularly as so many people out there are dependant upon it. I've been on and off steroids sometimes ballooning up like I'd been eating fast food for a month. This disease has been a part of my everyday life for almost nine years and I've had to embrace it and have always considered it my job.....except I don't get paid. Despite it I've done my best to maintain a normal life away from it working as much as I felt comfortable, staying in the best shape I could at whatever stage I'm at. I've rehabbed my body countless times and have always measured my health by the quality of my workouts. I watch my diet although tough at times from nausea, steroids, drugs in general-just eating is a good thing.

What's normal anyway- I suppose for me it's going out for beers with friends, playing tennis , travelling, working and enjoying life. I've managed to do these things whenever possible and can't wait to continue with it. I've tied one on here and there although it's been awhile and I suffer ten fold -- worth it. I've made my way back down south to visit friends, been to Mexico several times and New York for the 2008 US Open. My biggest travel accomplishment to date was making it to Europe six months after my last transplant but I'll get to that later. In the summer of 2006 I was off treatment for a few months so my buddy JJ and I played the men's open summer tennis circuit. It felt so good to compete and we managed to do OK reaching a few finals and finishing as the number 3 doubles team in BC for that year. I've enjoyed my nights out playing poker with friends and dinner nights in watching our favorite HBO shows. I have a good life and would never take it for granted...........I just don't want it to end!

A Family Affair


I'm not the only one in my family to have been dealt the cancer blow. Within one year of my diagnosis both my parents were to face their own challenges. My father was hit quick with emergency surgery to remove a tumorous kidney-he was lucky it had been caught before spreading to the other and four weeks later he was hiking a local north shore mountain. He never speaks of it but the memory of seeing him in so much pain has never left me. He has been the rock for all of us and I can't imagine how hard it's been for him to provide care for both me and my mother- and to remain sane. He's now retired living well-minus a kidney-but never stronger.

A few months after my dad my mother was diagnosed with Multiple Myeloma. She had been unwell for a number of years leading up to this so in some strange way I felt relieved that we had some answers. Myeloma can smolder in people for many years before coming active and I'm sure this was the case for my mom and maybe even me. My mother's fight with the disease is the most inspiring I've heard for a myeloma patient. She was sixty and had a bone marrow transplant from herself where they take out some of her marrow clean it up and put it back in. Things started off OK but soon she got sick, then really sick having developed a nasty lung infection. Her treatment for the lung infection alone went on for a year. By Christmas of 2002 she weighed under ninety lbs and had endured a light heart attack. She was days away from leaving us and we were preparing for the worst. I remember my sister and I begging her to start eating more and she just couldn't. Slowly with dad tending to her every need with his amazing strength and patience- she began coming back to life. This was over the course of the next few years- she just kept getting stronger and to this day I swear she's still improving. She looks fantastic and has been taking a myeloma drug that has given her her life back and taken the cancer down to a point it's barely detectable. She plays bridge, she gardens, cooks for the family when everyone comes to town. I couldn't put in to words how big a comeback this was. I never realized how strong and competitive my mother is but I know now....and I bow to the master!