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The journey of a lifetime . . .

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Update pls read Apr. 27th, 2009 @ 11:31 am
Hello my name is Ramon. I am a friend of Kevin's and on behalf of the Hatch Family  I am sending you this message with my deepest sorrow.

Friday April 24th, at 6:30 PM our beloved son and friend passed away. He was surrounded by his family and friends.

His memorial services will be on Saturday May 9,  at 5 PM.
Location:
United Church of Christ of La Mesa
5940 Kelton Ave La Mesa, CA 91942 - (619) 464-1519
http://www.ucclm.org/

If you have any questions you can email me at: wildferret@gmail.com
Ramon

It is terminal. Apr. 16th, 2009 @ 06:39 pm
I've rewritten this post a half-dozen different ways trying to find the best way to relay this message. But I suppose simple has always been the best way to communicate tough thoughts.

The biopsy came back positive for lymphoma. This means that it has spread to my lungs. I have a PET scan sometime next week to determine if it has spread anywhere else. Based on the speed of the progression it looks very aggressive. I'm not healthy enough to do a classic Bone Marrow Transplant (which would likely kill me) and there aren't any other promising medications to try. We've already hit it with the heavyweight stuff (a BMT would simply be a repeat of a previous procedure).

My oncologist and I are going to make one attempt at a medication that was designed for another type of cancer that has, on very, very rare occasions made headway with refractory hodgkin's lymphoma but it's a last ditch plan without much hope for success.

If nothing improves, and the grasping-at-straws plan doesn't pan out I have probably months or a year or two left.

Now I know that cancer treatment is part science and part art. I could live another 20 years. I could die in a few weeks. Nobody knows for sure. But the averages suggest around a year or so.

I also understand that there are thousands, and maybe millions, of alternative treatments for cancer around but I have an aversion to attempting treatment without widespread scientific support. And frankly I'm tired.

For the first time in almost three years I can rest my mind a little. Instead of thinking about cancer all the time I can start thinking about enjoying the rest of my life and actually living. I no longer have to focus on leaping from one treatment to another. It is a blessing, I assure you.

I don't have much else to add really. And while this marks the end of one thing it notes the beginning of another. And I'm OK with both.

Getting worse. Apr. 13th, 2009 @ 02:00 pm
It's been a few days. This is really only because I've been afraid to get off the couch in the living room to do anything other than use the bathroom (and that still makes me afraid, walking to the bathroom, but some things have to be done). Walking all the way out to my old room in the garage is a trial. I now have a way point chair about halfway.

My oxygen requirements have been going up steadily in the past couple of weeks and coupled with the knowledge of how fast those masses had shown up on my last CT scan I'm a little concerned that my worsening condition is a result of whatever they are.

I wish it was just pain in the body. While I'd be incredibly miserable with pain, I know, there's something less immediately threatening to be in intense pain than to be unable to catch your breath. And (primarily due to my own inattention) I've felt nearly unbearable, head to toe pain before.

I just hope that either a medical miracle spares me from having to continue like this or it finally takes over and wins. Either way the fear I live in and the discomfort of not being able to catch my breath even sitting down and sedentary would be over. I prefer the miracle, though.

It bears repeating. Apr. 8th, 2009 @ 09:53 pm
I know I've said it once or twice (maybe even dozens of times) but I have been blessed with some of the best people in the world as my friends.

Friends who've made me quilts (which I love!), friends who've run triathlons or rode in century rides (soon) in my honor, friends who've studiously accustomed themselves to the various apparati (not sure what the proper use is here) of my disabilities to the point where I feel natural wearing them, friends who come over to sit and chat, and friends who come over to sit and watch movies. There are many more things friends have done over the past 2 1/2 years to help me along but these are some of my favorites.

While the outlook is still bleak I feel much more attached to the world around me. And I think there was my primary problem. Not being able to get out without significant discomfort detached me from my world. Going on disability from work detached me from work and routine. Although I intend to go to Rocky this Friday I haven't been there in two weeks detaching from that friend set. I hadn't been to my weekly gaming group with other friends in several weeks. I had just rolled up in the living room of my house (my bed room) and stopped living.

But thanks to all the folks who came over last night: Amy, Anthony, Time, Alicia, Laura, Jess, Phil, Harry, Mandy, Anna, and Lindsay. And thanks to LBJ for providing an excellent selection of movies to choose from. I'm working on figuring a different arrangement to seating so people will be more comfortable, possibly to include a Love Sac. Seems like about 10 is the reasonable maximum for maintaining comfort.

It was fun and I felt much better today overall. I look forward to the next time we can do this. Also, I'll have a DVD player more up to the task.

I wish I had something else to say. Apr. 4th, 2009 @ 10:43 pm
I think I should have died in the hospital back in November.

Ever since then I've been getting steadily worse. Slowly but steadily. Making the 20 foot journey from where my bed is in the living room of my parent's house to the bathroom is now something I have to think ahead about to get my nerve up enough to risk the journey. Sometimes I have to go one way and just sit down for a while to recover before attempting the return trip.

While they were away on vacation for a week I went outside to get the mail (so it wouldn't pile up indicating that no one was home). That's about 25 feet. I have to think twice before going out to my room (30 feet) and all bet's are off if I have to leave the house for some reason.

That joy of looking forward to the new day has been gone for a few weeks now. Time isn't measured by the clock on the wall that is placed conveniently so that in my most comfortable sleeping position I can see it clearly all day and night. It's measured by the cycle of light and dark that comes through that skylight in the middle of the living room (which has been my bedroom since I came home from the hospital).

I fear going out because of the stress and physical toll. I hate being trapped in the house but even that hate is slowly disappearing. Most days recently I feel like I'm just waiting to die. I've become so accustomed to this infirmity that I can't recall what it felt like to walk around casually with the heaviest thought in my head being about nothing at all.

I know there are others, many others, who suffer more greatly than I do. And my friends do their best by humoring me and coming over to sit and chat.

And I know my parents are being the bravest of all watching their son die slowly in front of them with nothing to do about it except help me be more comfortable (which is a godly mercy I assure you). I really wish there was some way I could spare them this event. But I'm not suicidal (an even more cruel fate for them) and short of medical miracles this will be the course of my life until it has run its course.

I just don't see that light at the end of the tunnel anymore. And I'm pretty sure my eyes are still open.
Other entries
» Medical update.
Well, the bronchoscopy went off without a hitch. Always a pleasant feeling when that first shot of Versed hits the blood flow. I pretty much slept through the whole thing. In the future I'm definitely opting for sedation for this one.

The results from the biopsy were only able to confirm that I had influenza (probably mild case). No other results were conclusive. And since the tissue sample sizes were small it was a distinct possibility that no concrete results would be gained. However, this was the least invasive procedure of the three available.

So we're moving to step two - CT guided biopsy using needle aspiration. Basically doctors will use a CAT scanner to target a needle into one (maybe two) of the masses to collect samples. This I believe will be sedation also and not general anesthetic. However, this test is notoriously inconclusive as well due to smallish sample sizes. To make a comparison it's a little like finding a needle in a haystack using another needle.

This will be the second CT guided biopsy I've had and the other one didn't produce any results. However, this is a relatively non-invasive option and fairly safe and quickly executed process.

The third option is an excisional biopsy under general anesthesia and they would have to go in through the rib cage. While far more likely to give conclusive results this procedure of course has some additional risks involved in addition to a hospital stay for recovery. For these reasons it's being saved til last even though it's the most likely to render a conclusive result.

The CT guided biopsy will be this Friday, April 3rd. I'll be in the hospital all day but should be home by early evening.

Otherwise not much has changed. I still get very, very winded walking to the bathroom. There has been no improvement in my condition for many weeks now. This may be due to whatever these lumps are that we're trying to identify but we don't even know that for certain. At this point, though, I'm not too worried about the results. There is something there and given my present health problems it's not likely to be good news.

No, this isn't an April Fools prank. I figure most of you wouldn't think that but I just realized what day it is and figured I'd mention it anyway. =)
» I have the bestest friends.
On Saturday I made the trek up to North Hollywood to attend the fundraising benefit and silent auction being held to help raise money to make sure I can go to England in a few months.

I don't know the numbers involved but I know that we did very well and are very close to our goal (if we haven't passed it already).

I was extremely exhausted going into the event partially because I hadn't eaten anything in about 24 hours (nor did I have any appetite at all) and had just driven up through traffic that wasn't too bad but was still a long drive.

But the event was easily worth two days of exhaustion (all day Sunday after getting home I was wiped out and passed out asleep).

I have a new musical interest - the Doxie Chx. They play pirate/Irish themed music and had just the perfect sound for tossing a few back at a pub. That and they're all really cool folks.

I believe we have a couple more sponsors but I was pleased to see that the LAPD, North Hollywood division, had stepped up to really help us out. I spoke to a couple of them and they really made me feel important.

I also have a new, autographed picture from John Travolta with a nice message to me. Just one of the many things that made the night amazing.

But ultimately the night would have been a regular Saturday night with nothing much going on if it hadn't been for the intense level of effort put in by my friends (sisters) Rene, KittyKat, and Tiff. They pulled off the planning, organizing, gathering of donations, and the myriad of other tiny but important details such an event requires. More than anyone else they made the night special, and one I will never forget. Thanks, ladies.
» Mental Darwinism.
I'd like to think that the ideas/thoughts/emotions that are most fit to continue to survive in my head are the ones that contribute to a longer life and greater degree of happiness. And I believe I am correct in this.

The previous post was an expression of feelings that had been festering for weeks and months now. I still have to exist with them but fortunately for me I have a knack for making friends with the best people in the whole world.

All my Rocky friends and family, my regular family, my rennies and faire friends and family, and people in my life who cross all of those categories did what they usually do for me on the (thankfully fairly rare) occassion that being down in the dumps gets away from me.

I'm coming to terms with this oxygen tank as a constant companion when not at home. I'm getting used to ways to mitigate the coughing quickly enough so that it doesn't progress to wretching. For example I brought the tank along with me to Friday the 13th Lingirie Night at Rocky. That really was the last bastion of any out-dated image my ego had of my physical appearance/capability. Being able to accept the obvious handicap without feeling like I was under a microscope (though I noticed more than a few folks staring when they thought I wasn't looking) was a nice evolution of experience. Like Lizetta suggested and I knew would be true once I could make that first step - the thing simply becomes another part of who I am. Sadly it doesn't increase my appeal any but I suppose it does lend itself to magnifying one of my favorite personal traits - being non-threatening.

I don't have much to say but I wanted to make sure that I took a minute to thank all the folks who offered support, either in person, electronically, or silently. It's just another reminder that no matter how bad it may get there's something powerful and positive in my life that will never change.
» I think I'm missing the point.
I've lost the will to live and I can't remember where I put it.

Maybe I've just lost the joy of living but the end result is the same. I'm not looking to end it all or anything like that. I haven't suddenly developed a desire to kill myself (so put away the straight jacket).

It's just that when even physical task has a high probability of develoving into a coughing fit lasting several minutes which *always* ends with me wretching for another several minutes the things I used to look forward to (like hot showers) just don't seem that great anymore. It's so physically draining to have coughing fits last that long, never mind the faux-barfing that always accompanies it. And it happens at least once *every* *single* *day* now. Typically first thing in the morning when I have to whiz but can't take enough to time to let my body wake up.

And if I do have to take a shower for some reason it's all over.

I rarely get out of bed now unless I have to just so I can avoid any activity that may result  in such coughing fits. I don't eat much any more because of this near completely sedentary lifestyle.

For the first time in almost 20 years I'm considering not volunteering for Comic-Con simply because I don't think I'll have the physical capacity to make it.

What do you do when it gets to this?
» A Dinner and a Show plus auction update.
Hey everybody,

So far we're having a rough time selling tickets for this fundraising event. Proceeds will help pay the cost of my friend participating in the Dragon Ride in England (a 100 mile ride) and possibly help pay for me to attend as well (I'd love to see the Old World before I 'go'). Everything above the cost of participation will go to the Association for Internation Cancer Research.

Below is a report of the information with a more accurate link for purchasing tickets.

Hello everyone,

Get your tickets now for "Dinner & A Show" (plus silent auction!)

Dragon Rider Fundraiser to help support the Association for International Cancer Research.
Saturday, March 28, 2009 6-10pm
Buchanan Arms 2013 W. Burbank Blvd, Burbank, CA

Tickets available here.

Tickets are $25 and include your choice of dinner (fish & chips, chicken
marsala or roast beef) w/ soup or salad, tax and tip. Ticket price does
not include alcohol.

Musical performances by The Doxie Chx and The Praties!
Special performance by comedian Roberto Rodriguez

Below are the confirmed silent auction items as well as some names of item donators we're still expecting.
 
Acoustic Guitar
LOTR Wraith sword
LOTR Axe
Viggo stand up
one pearl/gold necklance
one full suit of chainmail
Jersey from England Soccer team Arsenal
tickets to taping of Dr Phil
tickets to taping of The Doctors
autographed pics from: Julie Andrews, Quincy Jones, Famous Amos (with cookies)

Items confirmed on the way from:
 Hugh Jackman, David Tennant, John Barrowman, James May, Richard Hammond, John Travolta - Samuel L Jackson - Harvey Keitel (all three signed same pic from Pulp Fiction)

So if you see anything there that you'd like to bid on please consider buying a ticket for the event. I'll be there and you know it'll be a great time.

Kevin =)
 

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