7-9-11

[wilomn]

So, Saturday morning has come and gone. Today was the first time I've seen some of my snakes in a bit over 3 weeks. I've got some really cool stuff. Perhaps a bit too much cool stuff still.

My energy levels are simply not what they used to be, even before I went in for the transplant. I suppose this is to be expected, but it's still sort of hard to deal with. I know I'll improve with time, I've seen it in the few days I've been out, but I'm an impatient man with important things to do. Heh.

For 3 weeks, 21 days, I did not sleep for more than 2 hours in a row. Partly it's the drugs I was on for treatment, partly it was the constant checking of vital signs and administration of those drugs. Most of them, the drugs, were intravenously administered. I had this wheeled device, much resembling Squidward for you Spongebob Fans, that had as many as 8 monitors and 10 bags of antibiotics, antivirals, liquid nutritional supplements and lipids hanging from it with between 2 and 5 tubes attached to the catheter in my neck. I gained almost 20 lbs in there from the liquid diet even though I went 8 or 9 days eating nothing at all. My vitals were taken by very nice Certified Nursing Assistants every 4 hours round the clock, some drugs were administered orally by very nice nurses every 4 to 6 hours. At least one Doctor with the occasional student or students came by every morning. The cleaning staff slammed the outer door, seemed there was no other way to do it, at least 4 or 5 times a day while taking away the protective garb warn by my caregivers, gloves, masks, gowns. Oh, and did I mention that somehow I had a room next to the water pipes for the building and that those pipes were not anchored properly? Every flush, every shower, I suspect every use of the kitchen sink 6 floors below, set those things rattling. A veritable symphony of steel assuring that if I did have a couple of hours between proddings, swallowings, arm cuffings and temperature takings, no real sleep would invade with success more than a few minutes duration.

Still, I am lucky. 3 weeks to the day, in and out. It could easily have been much longer.

My blood work as of yesterday looks good. I'm only taking a couple drugs now, one to prevent pneumonia and one to guard against fungal infections. This will go on for the next 6 to 12 months. I get both CAT and PET scans next month which will give us an indication of how well all this has worked. Hopefully they will show nothing. If that is the case, I have 2 or 5 or maybe as many as 10 years before this comes back. That it will come back is not in doubt by my doctors. While a miracle is possible, its likelihood is slim. This does weigh upon my mind.

Long range plans can only reasonably be made for 2 to 5 years and even then should be hedged on the short side. I'm not amazed by how this tapers my thinking, but I am ...... in new territory with my own feelings of mortality. I've known for about 8 months now that all this was possible. Now that I've survived the transplant, and there never really was much doubt that I would, I have the luxury of .... what, exactly? I have given this much thought these last few days. I'm sort of like a carton of milk. I should be good past the expiration date, but just how long is unknown.

Just what does one such as I do to not only support myself and small family, but with my life? It's almost guaranteed that before I'm 60, maybe even my mid 50s, that I'll have to do this chemo crap again and that next time it won't be ontogenitic (my own guys being given back to me, the safest least lethal method of stem cell transplant), but those of a "match" meaning that the 25% to 35% mortality rate is right there, meaning that 1 out of 4, or 1 out of 3 simply die.

Medical technology will no doubt be leaps and bounds then from where it is now, but I can't count on what isn't when I know, without a shadow of doubt, as of now, what is. I don't dwell on it, but it's there nonetheless. Kinda makes me go hmmmmmm, about just about everything.

However, faithful readers, don't read more into it than is there. Part of writing this is to help me order my own thoughts and feelings, but part of it is to also let you know what others going through this might not be able to say or convey or be willing to burden family and friends with. It's not like they show it on TV where you're put on chemo one day and smiling as you go home the next. There's a bit of hell along the way, then ambiguity about the future and whether there is one not to mention its possible duration, and I had the easiest chemo of them all. My spirit is as strong as ever, I still deny that I will die before I'm ready, which is not for a loooooong time, and I am in no way having a pity party. I'm trying to be as honest as possible for the above mentioned reasons, not to make any one feel sorry for me. I feel the need to be clear about that because to be misunderstood would bother me quite a bit. My body may have been weakened, may even have betrayed me, but this fight is one I will face squarely whether on my feet or flat on my back should it come to that, as I would whether I was writing this or not.

I have heard from some of you that I have been of assistance in dealing with family or friends who are suffering because of various forms of cancer. This encourages me to continue. One of the things I seem to be good at is putting to words thoughts often difficult to capture. I hope this continues to be so. We're all good at something, sometimes more than one something. I'm good at words and have perspective most will never, and be thankful for that to whomever you give thanks, have. I do hope to help those who feel as I do but can't express it as well. They and those who care about them.

One more thing for today. It seem out pal the good ol U.S. government has decided that my friend Medical Marijuana has no medical benifits. Let me just flip a big ol bird and give heart F U salute to anyone who says so that hasn't gone through chemo. I have done it both ways, with and without. I had six courses of chemo as an out patient, able to self medicate for nausea, stomach acid, lack of sleep, appetite, headaches and general malaise before I went to City of Hope. The relief was palpable, most assuredly real.

I had 5 more courses as an in patient at City of Hope in which I was much less comfortable, miserable for the last heavy duty one that contained cytoxin. The nausea, headaches, lack of sleep, aches and pains and just plain feeling like crap were measurable greater with out Pot than with. I don't smoke to get stoned, I rarely drink, I am NOT a pot head, but am SQUARELY behind the use for cancer patients.

This plant, be it in my mind only or because of actual physical properties, was of tremendous help to me. I think it is to others and should be available to them. If you disagree, go through chemo with and without, then and ONLY then will you have an opinion worth more than the spit it takes to wet your tongue to say it doesn't.

I find it odd that the government is ok with tobacco and alcohol, the 2 largest killers of humans in the world, man made that is, I know malaria kills more, yet spends BILLIONS in unsuccessful attempts to keep weed off the streets. Hey you smokers, go to a cancer ward and take a look at what may be in your future. Drinkers, you who do so to excess, pull up livers of alcoholics and deaths of innocents by drunks and see if maybe that doesn't give you pause for thought.

Then again, with a for profit health care system, maybe you're all just being duped to continue to feed the coffers of the money machine that is health care. Ahhhh, I seem to have gained passion at long last. I tell ya though, seeing it first hand can change your life and views. We just never see it first had and when you see it glamorized on TV or in the movies, it's just that, made all shiny and bright and palpable, palatable, acceptable even. When you see what must be gone through to pay for the choices made to take poisons like alcohol an tobacco, when you know first hand the expense, personal pain, heart wrenching pain of families and friends, it hits home. Or it should. I know addicts don't see it, don't want to see it, but that doesn't mean it isn't there, isn't true.

The truth is nasty and ugly and fatal.

[wolfy-hound]

Having had several family members go through chemo/cancer, it's very hard to know what it's like when you've only seen the slick tv commercials and the tv medical shows. Reading about it "from the inside" like you've been writing is invaluable to opening folk's eyes.

Even when someone has a friend or relative with any serious illness, the tendancy to allow your attention and eyes slide to the side, to ignore the reality and pretend that "Oh they're a fighter" or "I'm sure the doctors are doing everything the can" trite phrases are enough in dealing with it. It's not. When that person suddenly is faced with the reality or has to actually speak face-to-face and can't push it off to the far corners of their mind, suddenly it's a shock and they don't know what to do or say.

Being able to read firsthand about your life, your issues and treatments, that's one invaluable resource to help anyone deal with a situation that may very well be in their future or even in their current life.

I'm glad you're a fighter, and that you have been dealing so well with the treatments and hospitalization. I'm even more glad that you choose to share it with us.