Well, I'm feeling a bit down right now because the volunteer information session at the Tom Baker turned out to be a dud. don't get me wrong, I think that what they're doing is a wonderful thing, but my vision of volunteering did not include working in the gift shop, or selling lottery tickets. There were about 100 teenagers at the meeting and I think they'd get more benefit from volunteering in that capacity. I've also never been a great fundraiser so the thought of hosting a fund raising event does not appeal to me at all. There are many other people in this world who are exceptional at that sort of thing. My high school friends Pete and Brad are going to be chopping their lovely hair to raise money for cancer, and a little girl across the street from us in Canmore will be jumping rope for cancer research, but I guess I was hoping for a more intimate way to help other Leukemia and bone marrow transplant survivors, being one myself.
I keep thinking back to the time before I had my bone marrow transplant. Every part of me was tested to get a baseline of my bodily functions so that it would be easier to tell if any part of my body went wonky after the transplant. They even tested my mental state, and here was where I found the most dissatisfaction. I must state for the record that my shrink is fantastic. She is caring, and compassionate, and able to deal with a broad range of topics, but I don't think she is a cancer survivor. She never had a bone marrow transplant, I know that for sure. I remember asking her if there was a Leukemia and/or bone marrow transplant support network and she couldn't think of anything like that in Alberta. I remember walking out of that appointment feeling very alone, and helpless, and despite some of the wonderful emails I've received from many bone marrow transplant survivors, there still seemed to be something missing.
Now, those of you who know me well, know that when I get mad about something I generally say stupid, impulsive nonsense that I usually end up regretting. After the information session tonight, I phoned up Caity and basically stated that all I wanted was a Leukemia/Bone Marrow Transplant support group in Calgary, and if there wasn't one I might as well just go and start one myself. Usually, after I've finished my rant about this or that Caity will say something like "I love you" with a tone that when translated, generally means something like "You're an idiot, but you're my husband and despite the stupid, jackass thing you said, I still want you to sleep in the same bed as me". This time she said only one thing.
Well, then let's start a support group.
Now the drive back to Canmore took about an hour, and the further I drove, the better the idea sounded. So, I'm not sure how I'm going to accomplish this, but I'm going to start a support group in Calgary for Leukemia/Bone Marrow Transplant patients and survivors. I know that Caity and I can't do this on our own so we're going to need some major help. Here's what I believe we need to make this a success.
1. A decent website with a decent name. Members.shaw.ca/caityadam is fine for my own personal website, but this needs to be professional. I have no idea how to get a website name, or anything of the sort. Shaw has been nice enough to do all of that for me up to now. Another problem is that right now, I'm at the leading edge of my website design capabilities, so anything more sophisticated than this is way out of my league. My dream website would have a working forum, where people could publish their own questions, comments, concerns etc. The website would also link to various UP TO DATE medical resources so that a person about to go in for a bone marrow (or stem cell) transplant wouldn't be stuck fishing through 10 year old data like I had to. It would also include survivor journals like I've written here that tell it like it actually is. A person in my shoes does not want to read a generic pamphlet on what to expect when going in for a transplant, and despite their best intentions, I found the Canadian Cancer society's website to be completely lacking in soul and personality. I had to go fishing (once again) for survivor journals and all of them were based in the U.S. which didn't prepare me at all for the experience at the Tom Baker. Every hospital has a different way of doing things, and it would have been nice to know a bit more about how the Tom Baker handled people like me BEFORE I went in.
Another thing the website needs is a section (or sections) dedicated to the friends and family of bone marrow transplant patients. Life isn't all fun and games after you leave the hospital because you're extremely limited to where you can go. If a relative is sick with a cold, I can't go over to that person's house or see any of the people that live there. Anyone who has been around a sick person is also not allowed in our house which makes it very lonely at times. I was not prepared for the isolation I would have to endure both in and out of the hospital, and even 200 days post transplant it still gets in the way of me having a normal life. That's why the forums on the website would need to be very user friendly since it would be next to impossible to get 10-15 immonu-suppressed patients in the same room without causing severe panic. I still get nervous when I have to leave the house and I'm sure that it would stop me from going to any support group meeting that was held in the Calgary area.
2. The support of the Tom Baker medical and support staff. This is something that I'm going to have to do the legwork on. I need to get the help and support of the psycho-social department, as well as the backing of the doctors and nurses at the bone marrow transplant clinic if this thing is going to fly. A kick ass website is going to be no good if nobody knows about it. I'm already working on a mission statement to present to both departments, and I hope that I'll get the support that I need to get this up and running. My goal would be to have my website included in the list of resources they give to you a month before the transplant. You could read about the protocols and procedures used at the Tom Baker, then get on the internet and hear the patient's point of view about everything. I read about the procedures, and then went on the websites they provided me, but I still had the same questions unanswered, even after that. I even went so far as to call some of the help numbers they had provided in their "RED BOOK" but the help lines did nothing but ask for my address so they could send me more generic pamphlets.
I'm really trying not to disrespect the hard work of the people at the Tom Baker Cancer Centre, I just needed more than they were able to provide. They couldn't answer the questions that I needed answered. Even my consultation with the Bone Marrow Doctor a month before the procedure didn't help because, like I said before, she had never been through what I was about to go through. She didn't know that I was going to have to deal with five months of nausea, so the best thing she could say was "you might have some nausea, but we don't know how bad or how long it will last." I know they tried to prepare me for everything, but how safe would you feel if you were about to skydive for the first time, and your instructor had never skydived in his life? When I went skydiving a couple of years ago, my instructor had over 5000 recorded jumps, so I felt better knowing that even he had to have jumped for the first time at some point so he knew how I was feeling.
If I was to have everything I could ever want, I would want some of the Tom Baker staff contributing to the website. I can't imagine how valuable a Unit 57 nurse's thoughts and feelings would be to a future bone marrow recipient. That might be going a bit too far and it might break a few rules regarding professional distance between patients and medical staff, but this is just a wish list, so I can ask for anything I want at this stage of the game.
3. Someone willing to go the extra mile for new patients. That would be me. I'm so fired up about this project that I want to do everything I can to make sure that somebody in the future will have the tools that I didn't have to make the whole experience seem a little less overwhelming. I cannot stress enough how alone I felt when I tried to do research on what I was about to endure. You can't even find mortality statistics about Leukemia, because Stats Canada puts Leukemia in a potpourri category called "OTHER BLOOD CANCERS". There are only about 300 bone marrow transplants done at the Tom Baker each year, but that happens to be my area of expertise, so that's where I feel the need to donate my time and energy. If I had breast cancer, I'd be wearing a pink bracelet and putting my energy into that cancer. It's not my fault that I got a cancer with such a low incidence rate, but that doesn't mean that those 300 people a year don't deserve the same amount of help that a breast cancer survivor gets.
I'm in great need of help here, and I don't know how to make my dream a reality. I know I only have a small following of people that read this website on a regular basis, but if you or someone you know can help me get this thing moving I would be in your debt forever. In a couple of days, I'll post a copy of my mission statement on here for all to see. Armchair editors are more than welcome and I will take any advice you may have with an open mind, and an open heart.
On to other matters, my latest blood tests say that the incidence of the Philadelphia chromosome in my blood is 0.002% That basically means that it's completely gone as far as they can tell. I'm not sure, but somehow I knew in my heart that I had beaten Leukemia for the time being. I was throwing the remission word around this afternoon quite liberally to family members, but after some thought it really means nothing. I haven't been fighting Leukemia for a long time, I've been fighting the effects of an organ transplant. Truth be told, Leukemia never really bothered me like some cancers bother other people. It made me a bit tired, and I lost some weight, but I never missed a day of work because of it. All of the problems I'm encountering right now are transplant related, so I can't really say that I'm still fighting Leukemia can I? My head and chest cold are nothing to worry about. My doctor told me I was doing fine, and prescribed 10 days of anti-biotics to clear the whole mess up. I was really starting to worry about it, until Caity got the same cold. I know for a fact that Graft vs. Host is not contagious, so as soon as Caity got sick, I knew that I was out of harms way. It's still really uncomfortable though, so I'm hoping that the Sobey's pharmacy stocks the drug that I need so I don't have to wait another week before getting treated. I actually gained weight from my last appointment, and with no signs of nausea for the last three weeks, my appointments have now been spread out to once a month. Yeah!!!!! My vein in my right arm will finally get a chance to heal properly. I'm surprised I don't have track marks from all the blood testing they've been doing on me.
Well, I've got to spend some time with my lovely wife now, as she hasn't seen me all day. Night everyone.
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