Chad's $1 Million for Multiple Myeloma
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Struggling...

11/12/2009

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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.

Posted by Chad Warren at 2:18 PM
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The lighter side

11/11/2009

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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.

Posted by Chad Warren at 9:19 PM

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Bitter Sweet

11/10/2009

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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.

Posted by Chad Warren at 10:37 PM

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To the followers of this blog

11/9/2009

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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.

Posted by Chad Warren at 12:54 PM


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Motivation

11/7/2009

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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…

Posted by Chad Warren at 5:00 PM


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Inspiration

11/6/2009

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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 pales 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 

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Meg, Myself, Brennan and Amanda at their rehersal dinner in Texas (July 09)
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Meg and I for a VGH photoshoot - raising $1 million for MM research.
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Eva
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Jay and I
 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!

Posted by Chad Warren at 12:58 PM

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So here I am 

11/5/2009

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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 
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6 Months after transplant - Made it to Paris!
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With Tony, Bryn and family at cousins' wedding in London. (June 2009)
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!

Posted by Chad Warren at 10:11 PM

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Transplant #2

11/5/2009

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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!

Posted by Chad Warren at 7:24 PM
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Day before my 2nd transplant. Dec 18, 08
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Boxing Day. In ICU. (7 days after transplant)
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New Years Eve 08/09 - Still in ICU, but on the mend.
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Back at home, Late Jan 09
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5 Months after 2nd tranplant.
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Living two lives

11/4/2009

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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!
Posted by Chad Warren at 5:25 PM

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A Family Affair

11/4/2009

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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 MultipleMyeloma. 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'veheard 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!

Posted by Chad Warren at 1:29 PM


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    Me, Myself and Myeloma

    Chad's blog, Me, Myself and Myeloma, first appeared via Blogger on October 30, 2009. It has been recreated here to make sure it always has a home. 

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