Day +141 Money, Drugs and Power

I just came back from my last appointment at the hospital and it seems that I've been pushing myself too hard as of late. My workout program might be the cause of my increased morning sickness. I'm up to level 15 on the elliptical machine for 30 minutes, but I pay for it over the next two days as my body tries to repair itself. I'm finding this rather frustrating since it feels easy while I'm working out, but the recovery time is slow and I hurt more than I should afterwards. I keep thinking that July 1st is a little early for a return to work date, since I have yet to live through one whole day without feeling like shit somewhere along the line. I try not to go out when I feel like hell, so most people don't even realize that I'm sick anymore. Nobody but my wife and some close family see the real me, and I think I need to stop hiding how I feel to myself and to others if I'm going to make this recovery work.

I was up until 5 last night. It seems we're still fighting with the insomnia, but I've discovered that Shaw's video on demand service has freebees during the week. I saw a cool show on sea snakes last night. Hey, it's free I'm not going to argue with that. Besides it was narrated by David Suzuki, the sexiest Canadian alive today so how could I say no?

So, getting back to this go back to work plan, I need to give some of you an explanation as to why I wanted to go back so soon. I was able to purchase stock from my company last year before we started operations. The stock has a one year holding period which means that I can't sell it until July 1st of this year. The stock currently is about 3 times its value, and I bought about 50,000 dollars worth of stock. If all goes well, Caity and I are looking at a sizeable reduction in our mortgage in a little under three months. I wanted to be back at work so that I didn't feel guilty about taking a huge payday while not contributing to the success of my company. It looks as if that was too big of a goal for me to accomplish. It seems that I've completely underestimated the recovery time I would need to beat this thing. So I'm looking at September 1st as a new starting point. It gives me two more months, and allows me more time to really recover, and not just put on a good show for a couple hours during the day. My doctor says it's up to me when I want to return to work, but she did caution me on the dangers of returning to work too quickly. I can really set myself back if I push too hard, so I'm slowing things down.

As of today, I'm no longer pushing myself at exercise. The elliptical will be at a moderate pace and moderate difficulty, and the weight program will be changed to rebuild specific areas of my body like my hips and rotator cuff. Those two areas cause me a lot of pain since the muscles that hold the joints together are weak and loose. I'm going to stick to lifting babies instead of iron. They actually get a laugh out of being hoisted overhead.

I'm trying not to see this as a setback. I'm trying not to be disappointed with my body because of what I see as slow progress, but there are some days when I just want to look up to the sky and scream "Haven't I been through enough?" I'm tired of being tired and pukey all day. I'm tired of feeling like a drain on the resources of society and I want to be productive again. This current state of affairs is killing my soul, and I don't want to do it anymore. The sad thing is that I already made the choice to do this last July and it's too late to go back. I never thought I would look fondly back at the days when I had my own bone marrow. I can't complain about the new stuff since it hasn't killed me yet, but it's really taking a lot more energy to sustain then the old stuff. If it weren't for that pesky bout of CANCER, my old bone marrow would be perfectly good. Oh, well at least I'm not dealing with Gleevec anymore.

Speaking of medications, my levels keep going down. I've been off the Prednesone for two weeks now and I'm slowly getting used to the lower energy levels. I'm down to 50mg 2x daily for the Cyclosporin and I get to drop 25mg per week until I'm off it. I've got to stay on two other medications for a full year post transplant, but I'm really hoping that most of my side effects are from the Cyclosporin. It would really suck to have nausea for a full year so I'm hoping that I'll feel more human as the Cyclosporin tapers off.

That's it for today. I'll write again soon.

Day +131

I felt like a human being today. I woke up and felt pretty good so I cleaned the kitchen and bathed to girls. After that I made an appointment with the bank to nail down some short term financing for the summer until our stock can be sold. In other words, I had a normal person day. I was productive, I was out in public and I was downtown. It was great. I would have stopped off at work, but it was past 4 when I was done at the bank, and Caity was picking me up with kids in tow. It's amazing what you miss when you're gone for a while.

I'm finally getting over my scare with pneumonia. The lymph nodes in my neck are not as sore, and I actually did a 40 minute workout on the elliptical machine at level 13 last night. I'm going to be starting a very basic workout schedule this week and when I say basic, I mean basic. My last attempt to start a workout program ended up in disaster so I've got to start from square one this time. I feel like one of those old ladies on television that does aerobics sitting in a chair. My shoulders have no strength in them at all, same with my hips and since I'd like to go back to the gym in April, I need to at least get my body warmed up to the feeling of lifting weight again.

Right now, I'm going solo with the kids since Mom is out at a movie. We came to the conclusion that we don't get out enough, but finding a sitter willing to take twins is difficult. We're also having trouble trusting strangers with our kids, but we feel that the Price family sitters have been overworked as of late and need a break. We've found a lady who baby-sits other twins, and has come highly recommended by the twin's mother so that makes me feel a bit better. I can't remember the last time I got out of the house with my wife that wasn't a trip to the hospital. I'm even willing to go out to a girlie movie if it doesn't involve drawing blood or getting x-rayed.

So if I keep getting better, it will be time to think about going back to work soon. I wish I knew what the hell was going on with that. The doctors are not willing to give me a firm date, and they've basically said that with bone marrow transplant patients, 50% are back to work within one year. My long term disability benefits are covered until December so I could theoretically ride this baby until Christmas without breaking any rules. Technically I'm making more money on disability than I was when I was working. I only get 66% of my salary, but I don't pay to commute, and I don't get taxed on my disability income. Problem is that I've never been great with sitting on my butt. My dad raised me too well to pull something like that, so I'm still aiming for July 1st as a start date. I want to make sure that I can handle a full day's work first, so we'll see how my fatigue changes as I drop some more of my medications over the next month. I really am looking forward to getting back to a normal working man's life, I just don't know when that date is yet.

My only regret for wanting to go back to work, is that I'll miss my kids. I've had such a wonderful opportunity staying at home and watching them develop and I know that not many men get this chance. I think that's why dads are more distant with their kids than moms. It's simply a matter of staying home and being with them. If you watch them enough, you start to see and hear the things that only moms seem to notice. Caity is still the master of that ability, but I like to think that I know my kids better than most dads out there. It's been a blessing being well enough to enjoy the twins this last couple of months, and that's the biggest thing I'll miss when I go back.

However, they're both going ape-shit right now so I've got to go feed them. I won't miss the screaming, but I will miss everything else.

Day +128 Slacker

I've been informed that I don't write in my journal enough anymore. In my defense, I live the same day, day in and day out. I'm stuck in the movie Groundhog Day is seems with Caity and I doing the same thing every day. It's not our fault though. Having one baby is a chore, but we've discovered that twins are more than the sum of their parts. Together they form a super baby, requiring at least two and a half times the care of two separate babies.

I'm more than likely exaggerating the work requirement of twins, but some days it seems like they are too much work. I'm having a rather significant bout of fatigue lately and that makes everyday life seem harder than it really is. Right now the best I can manage is to go to the dog park and watch TV all night. The reason Caity and I sit around and do nothing except go to the dog park once a day is twofold.

Reason #1

I'm too tired to do much, and getting out of the house has become more difficult. You try finding places to go with 5 month old twins and an immuno-suppressed husband that can't be around crowds or sick people.

reason #2

We're freaking poor right now. My long term disability gets paid once a month at the end of the month. Since I went on long term disability at the end of February, I don't get paid until the end of March. Combine that with Caity's reduced maternity benefits, and we're effectively working on 1/2 an income until I get my monthly deposit.

Truth be told there is a reason number three. I'm still afraid to go out in public. I'm afraid of getting sick again and ending up in the hospital fighting a nasty virus. Take pneumonia for example. Pneumonia could seriously complicate (and shorten) my life, and it turns out that someone who was in my house not more than a couple of days ago has come down with pneumonia. Right now, the glands in my neck are swollen and sore, but I haven't developed a fever yet so Caity and I are just sitting around waiting to see if I get sick or not. It seems like only the kids in the Price/Bregliano/Cooper family are getting sick, but since my immune system is essentially the youngest in the whole family, I'm almost expecting to get it. I've read how nasty pneumonia can be on a bone marrow transplant patient's body, and I do not want that by any stretch of the imagination.

So I'm afraid that I'm going to get sick and die, but more than that, I'm angry at myself for letting the rules slide when it comes to my recovery. I've been living a little wild (well, for a recovering transplant patient) and that needs to stop. I've come too far to be stopped by a little nasty piece of viral RNA.

That's it for tonight. If I remember, I'll complain a bit more about being tired all the time in my next entry. It really sucks and it's a constant hurdle in my quest to regain a normal existence. At least my hands aren't cracked and bleeding anymore. It makes for easier cleanup when I can actually touch cleaning products without wincing in pain.

Day +124 Regrets

I'm not exactly sure how to go about writing this since it's totally off topic from what this journal is supposed to be about. I've most likely been reading too much of Pete Rainford's blog since he has such an eloquent way of talking about life as it happens, and I publish the first draft of whatever garbage pops into my head. In fact, I blame Pete's magical wit for my latest dissatisfaction with my journal. I've caught myself reading his stuff and thinking "Wow, that's some good writing. how can I top that? But I keep reminding myself that, well, Peter Rainford is Peter Rainford and there's no sense in trying to out-write him. Pete, I love you man, but I just can't compete with your rapist wit (see Carrey, Jim - Dumb and Dumber).

I'm off the Prednesone now so my insomnia is not drug related. It happens to be baby related. Now, I've made no attempt to hide the fact that babies aren't my most favorite thing. I've been successful at avoiding them for most of my life up until recently, and I thought that I had my feelings in order when I went into this whole baby thing with Caity. I would tolerate the babies until they were old enough to walk and talk, and then the fun would begin. I've always considered myself a "toddler man" and Caity and I agreed that she would take the first 2 years of their lives and I would handle them from 2-13. When the twins were born, something happened inside me (see Carrey, Jim - The Grinch who Stole Christmas) and I knew I was forever changed. I didn't really understand what had happened until a couple of nights ago.

I was walking the dogs at about 11:00pm at night. I think it was the same night that I threw up 6 times, but it could have easily been yesterday. Anyway, I'm walking all alone, in the dark, in the middle of a huge field, and I'm staring at the night sky looking for planets, familiar constellations etc. like I usually do at night in the dog park, when I have a "moment". You know, those times when you just stop what you're doing and think "I'm the luckiest man in the world!!!". I'm alive, I've got the perfect little family (a beautiful wife, two gorgeous kids, two affectionate dogs, and two even more affectionate cats). I've got a brand new house, a mostly new car, and a great job with a great company. How could life get any better?

I know. We could have another kid...

and that's when I realized what I had done. I didn't save any sperm before my chemotherapy sessions.

I'm not sure why, but I feel a great sense of loss over not saving sperm. I know that other parents know what I'm talking about when I say that your own kids have a special look they give you every once and a while that makes everything ok. One look, and all the crying, all the diaper changing, all the baby puke is all worth it. And here's the kicker. They flash you "the look" more and more as they develop. I would say that right now, almost 80% of my time with them I get "the look". If I could listen to the thought process inside my daughter's heads, this is what I imagine "the look" sounds like.

"Hey, this is a neat toy. I wonder if I can fit it all in my.....OH MY GOD!!!! YOU'RE MY DAD!!!!! I KNOW YOU!!!!! THIS IS THE GREATEST MOMENT OF MY LIFE THIS IS....hmmm I wonder if I can fit this toy in my mouth...."

I never said it was a long moment but to me it's pretty powerful. I imagine it's nothing compared to walking in the door to your own house and being greeted to squeals of joy and loud yells of "DADDY", but right now I can barely handle "the look" without getting emotional. Every look, every smile, every giggle I get from my kids is one more thing that I might not have been around for if things had gone badly with the transplant. Yes, I still hate the crying, and the fussiness, but it's all worth it when I pick up one of my daughters and they look at me like I'm the greatest thing in the world. That's why I was feeling regret for not saving sperm. I now understand why everyone was telling me to store some away before the transplant. Creating a life is the greatest thing I've ever been a part of, and I no longer have the option of making more. Well, there's a slim chance that some of my production capabilities are still intact, but from what I've been told, chemotherapy is very effective at destroying any desires one may be entertaining about having more children.

So that brings us back to the dog park in the middle of the night. I stopped, and thought about being sterile, and I almost wanted to cry right then and there. As a man, we rarely feel comfortable crying in public. Other men tend to point at us and laugh so we have to cry in private. I was so sure that I only wanted two children before the transplant that I never seriously entertained the idea of banking sperm. Now, I might not have the option of creating more. If I had been given chemotherapy when I was diagnosed, I most likely would not be writing about my perfect little twins today. Caity and I are very lucky that we got to be parents at all, so I shouldn't be so down about the whole sperm issue, but if you could feel how happy my kids make me when they smile at me, you'd understand why I'm sad at stopping at two. I really wish I could go back to pre-transplant Adam and tell him to bank sperm, but it's too late for that.

You know what? I've got some pretty nice kids, and I actually enjoy spending time with them. I never thought I'd say that about a baby, let alone two of them. I still reserve the right to be ambivalent towards other people's babies, but as far as my babies are concerned, they will always be the apples of my eyes. They are my sun, my moon and my stars. They are two of my three favorite women of all time, and I don't know what I would do without them.

By the way, is it too early to get emotional when I see a commercial about a young bride and her father on her wedding day? It is?

Oh, shit, I'm in trouble.

Day +123 Leukemia as a Plot Device?

Caity told me I had to write about this, and I guess it's no more embarrassing than anything else I've admitted to in this journal. We're watching Extreme Makeover - Home Edition right now. It's the one with the 8 year old cancer patient that just wanted the design team to makeover the hospital wing she stayed in. So the design team decided to completely redo her house as well without telling the family. So, it seems like every time the subject of cancer comes up I get a little emotional. I get all sappy anyway with this show, but when they deal with cancer, it really affects me. I was sitting here crying away at a particular moment and Caity offered me a paper towel to dry my tears. This was my reply.

"No thanks, I like the texture of a receiving blanket better"

God, I suck.

On the other hand, you really notice how much the subject of cancer comes up in the plot lines of a lot of prime time shows. Every CSI incarnation has had a murderer who had Leukemia, I've seen the same thing with every Law and Order out there (except for the new one with the actress who played Lillith on Cheers). Even M.A.S.H. had an episode where a young private (played by a strapping young buck named Patrick Swayse) finds out he has Leukemia When you find yourself crying after watching an episode of Law and Order you know you've got some unresolved issues.

That's about it. Gotta go cry some more.

Day +122 Pukie Returns

I've got to tell you about the fun day my family had yesterday. From the moment I woke up I knew that something was off. I think if I had been any other person I wouldn't have thought twice about how I was feeling, but because of what I've been through I knew that it was not to be a good day. Well, I was right about it being a bad day since I broke my old post-hospital puking record of five vomiting sessions in 12 hours. I threw up six times in 12 hours yesterday. Fun huh? Caity had a problem with the other end of the plumbing and between the two of us, we were running to the bathroom every half hour. I actually had to specify which toilets in the house were to be used for vomiting, and which toilets were to be used for diarrhea. The simple reasoning behind that was so that I didn't have to spend large amounts of time with my head in a smelly toilet bowl. When you feel as nauseous as I felt yesterday, you don't need any more help getting things out of your system and sticking your head in a smelly toilet is not something you need when you're puking your guts out. The upstairs guest bathroom is officially the puking bathroom if anyone is coming to visit in the next little while. That means no number 2's are allowed in there until I feel better.

That being said, I have other news for my fellow Graft vs Host sufferers. I think I've solved the problem of itchy hands. For those of you who don't know, I've been dealing with a rash on my hands for about a month now. It was really itchy at first, and then the lines on my hands and the joints of my fingers dried up and cracked open. I've literally been drenching my hands in Gold Bond Medicated Skin Lotion (in a green bottle) and it seems to be helping. That stuff smells quite a bit so I've been using Caity's Oil of Olay face cream to keep the skin on my face from doing the same as the hands.

So I've been dealing with cracked, bleeding hands for about a week, and now I've got to deal with weak fingernails. During the month of November, my fingernails growth was disrupted by the chemo. As of last week, the weakened nail sections have grown out to the point that the weakest part of my nail is at the tips of my fingers. They catch on everything and just basically hurt all the time. All I can do is wait for my fingernails to grow out, so that I can chew off the weak thin parts.

Yes, I'm a nail-biter. I have been for as long as I can remember. I've tried everything under the sun to stop, but in the end I've just decided to wash my hands before I chew. My doctor at the Tom Baker is a nail-biter as well, so she didn't seem to give me too much flak about it being un-hygienic. I thought about using that clear nail polish that tastes horrible, but given the fact that I can lose my lunch at any given moment, adding another foul tasting substance doesn't sound too appealing.

So that's about it for today. We're staying in tonight to recuperate so it's a full night of TV watching and snacking. That's ok by me since it's almost time for Battlestar Gallactica. So we've got chocolate Snackin Cake, pink lemonade, and lots of leftovers. Let's just hope that I'm hungry.

Day +118 Manly Puff

I got an email today from a girl named Ashley that touched me more than I thought possible. I'm not going to print that email here, but it will be saved in my personal section that I don't publish. With your email Ashley, you have confirmed to me that my diary has indeed helped someone and I thank you for that. Plus, she thinks that I have really cute babies so that's another reason why I like getting emails from her so much. Ashley, if you're reading this, I'm always here if you want to chat, and I'm glad that you're finally becoming as happy as you deserve to be.

As far as any medical updates go, my rash has changed and moved to my back and legs in the form of pins and needles when I sweat. It's like getting hit with hundreds and hundreds of little arrows from a marauding Lilliputian army. Go borrow Gulliver's Travels from the library if you missed that last joke. Seriously though, it hurts like a M.F. if I let the sweat stay on my skin for more than five minutes, and has actually made me cry out in pain at times. My remedy for the sweat problem is to super-exfoliate with my Oil of Olay bodywash and puff.

Ok, done laughing? Yes, I am a puff user. I don't think it makes me any less manly. In fact, I think that forcibly scraping layers of skin of my body twice a day sounds more manly than simply using soap. The only unfortunate thing about the puff is that it does not come in manly colours. I think mine is a mauvy-purple which is about as non-manly as I'll go in the palette of possible puff colours. I'm still looking for a camouflage patterned puff, but until that day comes, I shall use mauve and be happy about it. It's all about the skin scraping power of the puff anyway, and my mauvey-purpley puff is still pretty rough on the skin. We've got a pumice stone brush as well, but that's a place I'm just not prepared to go to at this stage of my life.

Let's move away from the discussion of beauty products and talk about something more dear to my heart. What's with all the mucus? I'm serious here, are there other bone marrow transplant survivors that have uncontrollable post-nasal drip? I've been told not to worry about it unless it increases or changes colour, but I'm almost considering skipping lunch permanently due to the sheer quantity of snot that I snort back every day. I'm not sure what the nutritional elements of snot are, but I'm most likely getting 100% of my daily recommended intake. It's obviously not helping with my energy levels since all I want to do is sleep these days. I don't think it's a cold since I've had it for too long, so it's most likely GVH. The only thing to do now is to hope that it goes away with time or buy shares in Kleenex.

I promised Caity I'd make this one short, since I disrupt her sleep when I come to bed late. Tomorrow morning I'm off to get my monthly IV of immuno-globulin which means I've got to go in early and be pre-medicated with Benidril (sp?) to avoid the total body rash I get when I receive blood products. This is also the first time I've needed anything IV since my line came out, so that means that they've got to go and poke around for a vein in my arm. I've got big "easy to hit" veins, but what I wouldn't give to have my central line magically re-inserted just for tomorrow. Oh well, if I can withstand the manly pain of exfoliation I can deal with a little needle, right? Anyway, off I go stealthily to bed. I'll most likely step on a cat or two on the way up the stairs, and run into the crib in the bedroom on the way to bed like every night, but that's the life I live.

P.S. I love my puff, so don't give me any sh*t about it alright? :-)

Day +113 Energy Levels and my hatred of Commuting

It looks like I didn't explain my remission status very well. I've had a few questions on it so here's what the makers of Gleevec have to say about it.

To date, Gleevec treatment has led to hematologic remission (control of WBC levels) in almost all patients. In about half of CML patients, Gleevec treatment is also associated with cytogenetic remission, in which the Philadelphia chromosome becomes undetectable. However, molecular remission (elimination of CML cells as determined using a more sensitive molecular method called PCR) occurs in less than 10 percent of people who receive Gleevec. Overall, it is estimated that about 80 percent of people receiving Gleevec still have the Philadelphia chromosome, either because it was never eliminated or the mutation recurred.

So there you go. I never promised anyone that my ramblings would be acurate or factual. Like the great Obi Wan Kenobi once said "What I told you was true, from a certain point of view".

As far as today goes, I woke up with what felt like a sunburn on my face. It turns out that I just had dry skin, combined with a little swelling which made the skin feel tight. I've never had that side effect before, but I've come to expext weird things from my body for a couple of days after a medication change. I'm down to 5mg of Prednesone as of yesterday and with every decrease comes a coresponding decrease in energy levels as well. I also have chosen to remove the anti-acid pill, as well as the "bowel relaxer" from my drug regimen. It seems that the Tom Baker Cancer doctors consider those medications optional right now, and I'm not taking anymore drugs than I need to.

So other than that, I'm tired, sore, and unmotivated. I'm still going to go work out on the eliptical machine tonight. I've made a promise to myself that I will get on the thing 5 times a week. Now that Caity and I live so far away from downtown, I'm going to have to get in shape if I hope to ride my bike to work in the summer. It's about a 20km ride each way, and if I'm not training my body to lift stupid amounts of weight, I might as well train it to ride stupid distances to and from work every day. The easy solution would be to simply take the bus like all the other commuters to cheap to drive, but I would rather roll in glass than get packed in beside smelly overweight businessmen and women for two hours of each work day. I hate public transportation. I fully support it as a means to reduce polution, but I refuse to use it unless I absolutly have to.

Well, the call of the baby beckons me, so I must attend to the problem. Ara has learned that pushing large volumes of air past her vocal cords makes a loud, obnixious noise, and she can hold the same cheese-grating tone for a good ten seconds if she wants to. It usually ends up morphing into a fit of rage, like right now for example. Ok, Ok, I really gotta go. Duty calls.

P.S. Kayla, if you're reading this in the future, don't think that you behaved any better, you just happened to be sleeping when I wrote this.

Day +112 Remission?

Remission. It's an interesting word. I find myself having trouble saying it without getting a little choked up. There's a lot of emotion behind that one little word that I didn't know existed untill I heard the word used to describe me this morning. I am, as of February 3rd 2005 am in cytogenic remission. That basically means that there is no sign of the Leukemia in my body. According to another, fancier, more expensive test, I still have the genetic material that causes the cancer, but they can't tell how much there is left. The doctors told me that there was a slim chance to be at this stage at the three month mark, and they prepared me rather well for the test results to be Leukemia positive for the next 6 to 9 months. Now that I'm here, I find myself at a loss for how and what to feel. I mean, it's not like I can go back to my normal life yet. I'm still recovering from the whole bone marrow transplant deal which seems to be the only thing I'm fighting right now. I still can't go back to work, and I still can't go out and enjoy a movie, or a trip to the mall. Nothing has changed, yet in the same breath, everything has changed.

Speaking of change, I am as we speak regrowing my shimmering golden locks of hair. Last week in Canmore my hair just decided to come in so I'm letting it go to see what it does. As of today, it feels like a really close buzz cut, with only a few small thinner patches on the back of my head. I find myself rubbing my head constantly, simply because the feeling of hair is still a new sensation. Oh, and yes for those of you wondering, there is new hair everywhere else as well. And when I say everywhere else, I mean everywhere else. My shoulders and back are covered in a soft fine baby hair. I have a full chest of hair and it goes ALL the way down to my toes if you know what I mean. It's really itchy at times, but luckily the rash on my hands itches worse so I don't notice the back hair itch as much. I'm hoping that all this extra hair will fall out as I come off the drugs, and I promise that I will never EVER joke about my chest hair as "looking like a chemotherapy patient" ever again.