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| | 02-03-2009, 05:10 PM Thread Author #1
The Big C: Survival, Milestones, Memories, and Memorials.
To the readers of this thread, I welcome you to my first major post within the CrackBerry forums, and thank you for any comments in advance.
*****Cancer is a difficult subject for many to face. I have shared my story with many, and knowledge can save lives. Fear is normal, but it can be overcome. This is my story....
This past week marked an important milestone in my life, one that some thought I would never see.
Just over 10 years ago, I was diagnosed with a lovely little friend named Burkitt's, a very rare form of lymphoma. I was told that at the time, there were maybe 100 cases in any given year that are discovered.
I was 4 months past 33, locked in a bitter struggle with my soon to be ex, fighting to get my daughter from her grasp before she could inflict permanent damage, and now, fighting to stay alive.
Six weeks before, I was in perfect health, and now the doc wakes me, and I ask him what the verdict is. Cancer. I laughed, shocking him. My new friend was, at this point, little more than a golfball sized mass, comfortably growing itself in my large intestine.
So they packed me up, and I called for help, someone to drive my new truck home, with me in the sleeper. It took several days getting back to Missouri. It was a. miserable 3 days.
Seven days after initial diagnoses, my friends were preparing to take me to the hospital the following morning. But I collapsed, and had it not been for a passing survey taker, I might not have made it.
My friends came home and rushed me to the hospital. Some rapid tests were taken, and several medical types surrounded me in short order, hooking me up to everything under the sun. They didn't know how I was still alive, I'd lost so much blood.
After a CAT scan, they told me I was going in for surgery in the morning. Meanwhile, tHey pumped me full of whole blood and prepped me for the morning to come, and it was a long night.
After surgery, they informed me that they'd removed a softball-sized tumor, and they had it in lab for analysis. So far
I was lucky, because it had not spread from the intestine.
Two days later, the bad news. I was being shipped to St. Louis so that they could figure out what to do with me. I was a case study for a number of oncologists, and they worked up a plan for my upcoming course of treatment.
I was now facing at least 4 months in the hospital, and 4 rounds of chemo. I started this near the end of January, and I was looking at June before I would be finished.
WhiLe I was in St. Louis, my mother, Grandma, and Aunt came up to visit. They remarked that I'd already dropped so much weight, and asked how I was faring. At this point, it wasn't too bad.
Later, as events unfolded, I realized that this was the last time I saw my grandmother before the Alzheimer's disease had become apparent, when she still had her faculties. I was glad for this time, as reflection warrants.
My friends came up on their anniversary, Feb. 14, to take me back down to my hospital in Joplin to start the second round of chemo. it was a miserable ride, as I couldn't get comfortable, and I-44 was a rough road . We didn't get home until very late, and no one was interested in dealing with the hospital that night.
The following day, my Doc started chewing my backside for not coming in the previous night, and I forcefully, yet politely told him to back off. He pumped me up with more blood, and the real torture began
They brought in this plastic bag full of methotrexate. iIt looked to contain about 3 gallons of liquid, and they hooked it into my infusaport, a device planted under the skin of my left chest. it would take 24 hours to pump this into my body. And I can emphatically tell you, this was far from the worst part of it!
Now, the waiting game began. Seconds became minutes, minutes hours, and then days. I watched the seasons slowly begin to change outside, and being an outdoor person, it was hard to watch. Sleep was a welcome diversion, but the body doesn't want to do it all day. Fortunately, they had a pretty good cable selection on the tube, so I did OK with the Discovery Channel and syndicated shows. The thing that really confounded my nurses and docs was that I watched a lot of the medical shows, like ER.
I lost my hair, every one! Eyebrows, eye lashes, body hair. I would trip my friends out by reaching up and pulling a handful out, and going, Whee! And dropping it on the floor. I began the painful part, the methotrexate caused the inside of my mouth to break down, and I could no longer eat. I have an extraordinary pain tolerance, but this was ridiculous. It was mind-numbing and all-encompassing.
I could not go out of the room unless I wore a mask, and the constant misery of my mouth was so bad, I pretty much just stayed in my room.
My immune system was zeroed out. And I got a cold that almost killed me. 105 is where I spiked, and eventually, the fever went down with treatment, but it was a near thing. 37 days of this, and they told me I would get a break near the end of March, prior to starting my next rounds. And, as fate would have it, just prior to my first divorce hearing.
I had to learn to give myself injections of neupogen, to help get my immune system back up to speed. When I got out for my break, I was as weak as a newborn kitten. I was staying with my friends, for now, the State was giving me a monthly income of $80. I had no place of my own to stay, and no family nearby.
I went to my 1st hearing on April the first, cue irony, someone. My soon to be ex was there, but she left my daughter hidden. See, her first reaction was to call Social Security and my Insurance company to find out how much money she was gonna get when I kicked the bucket. She had little idea what I was engineering, and I was working to make sure she could never pull off another stunt like she had, ever again.
I walked in, bald and haggard looking. She got this disgusted look on her face, and went back to powwow with her latest fling. And it ended up that nothing got done that day, a case had overrun, and a postponement came down. This worked out for me, as I really didn't want to go before the judge in that condition.
I am normally a fairly pleasant man, and so it was hard to deal with the fact that I wasn't as nice as usual with the combinations of things I was dealing with, especially the side effects of some of the meds. My temper surfaced more easily, and I was a quite snappy with folks, but, thankfully, they accepted my apologies when I found out what caused this.
I went back in on April 6th, and I wouldn't be out again until June.
Part 3As I entered the hospital to begin round three, one of the associate oncologists scared the living crap outa me. He came in and told me that they were gonna have to do some more tests, that some abnormalities were found, and not to jump the gun, but prepare for the worst.
But my worries were tempered later when my Doc came in and told me his younger partner had jumped the gun, had misunderstood what he was seeing, and that any concerns were honestly minuscule.
Suddenly, I could breathe again.
The third round went quickly. By now, I was totally hairless. My nights were nearly dreamless, if I could get to sleep at all. The clock on the wall marking off minutes that would fall behind a crippled snail. The 2 to 4 a day blood draws, endless packs of blood and plasma. The last of the snows fell, and watching outside the trees were beginning to green up.
Many times, I awoke swimming in pools of sweat, my sheets drenched, as the chemo worked and my body fought to recover. And let's not forget the wonderful joy of intrathecals.
For those that have never heard of these, in those days, because of the nature of the central nervous system, intrathecals were used to inject chemo into the spinal region. A hefty needle would be inserted into the lumbar spinal region, and the would ease the chemo in, making it possible to treat the nervous system and brain.
During one of these procedures, the attending physician missed, causing a reaction wherein I kicked a table completely across the room. The pain was brief, thankfully, but fiery hot.
As April waned, my second round of methotrexate began. This time I made a plan with my Doc. I explained that my belief was that part of my extended recovery from the first round of metho was my constant battle to suppress pain. I asked for something to take my focus away from the pain.
He agreed, prescribing Demoral, and we found out the first dosage only lasted me th first 90 minutes out of 6 hours. I told him on his next visit at the end of the day, and he doubled the dose,halved the dosing schedule, and now we were cooking with gas!
For the first time in months I wasn't fighting the brutal agony of this experience. But the cost was the pain washing in every 2 and a half hours, until I could get a nurse to bring in the next shot, pushing the tide out for the next cycle.
The best part was that they would use one of my infusaport lines, and the meds would dump right into my heart, which pushed through my system in seconds. I didn't so much as enjoy it for a rush, I rejoiced at not having my entire body ache like an infected tooth.
Now the ravages of the chemo were apparent. I looked like I was 60. My arms and legs withered. I slept randomly, wandering in and out of the halls of my consciousness. Once again, I was unable to eat, so my IV was my source of nourishment. My mouth felt as if I'd run a disk sander through it a couple of times. I couldn't even sip a soda, they burned horribly.
And then, ever so slowly, I began to climb out of that ghastly pit.
As I began to return to the land of the living, I was told that my physical condition was pretty deteriorated(as if I couldn't figure THIS out), and I was looking at several months of physical therapy before I would be able to work again. Right.
They began easing me off the pain meds. I told them it wasn't necessary anymore, anyway.
I was determined to get out of their clutches as soon as possible.
As my immune system began working again, I would stagger down the halls and take the elevators down to the gift shop, where I could pick up a couple of quarter boxes of candy. I fell a couple of times, and when staff would try and help me up, I'd growl at them to let me do it!!
The 11th of June rolled around, and this would be my last day on the ward, 4 East. I was wheeled down to my friends' car. And triumphantly I eased myself out of that chair and into the world again.
I'd been told it would be 6 to 9 months before I would be able work again. Not if I could help it!
I also knew that my divorce and custody hearing would be coming up in September, so there was little time to waste.
I started gutting it out through each day. Without transportation, I couldn't go to physical therapy, so it was all on me. I pushed til the sweat ran in rivers, sometimes until I had to be dragged or wheeled on a cart to bed. Some days I raged through fits of anger, raging at my body to do what I wanted.
I took falls, but I'd crawl to something until I could drag myself up again, and just keep going.
And then I experienced one of the most annoying sensations in my life. All of my hair started to grow back out.
I couldn't sit still. The itching, oh, how it irritated, became a nuisance, driving me to total distraction! I itched every minute of they day for the next 2 weeks.
And then I was back. Mid August sweltered in, and I went in for my latest checkup, and informed the Doc I was ready to go back to work. He ROLLED his eyes at me.
He began the strength tests. I stood and he held out his arms for the
push up test, I braced myself and lifted this 210lb man clear off of his feet and braced him against the wall. Different look in his eyes, now!
He asked me how I'd done this without PT. I casually informed him that nobody puts limits on what I can do but me.
At the end of the visit, he gave me clearance to return to work.
I walked into the Joplin courthouse with my daughter in September, my attorney and his assistant wheeling a file cabinet. Arriving at the anteroom, my estranged was shocked to see that I looked normal and healthy. I walked up to her and pointed to the file cabinet, and explained, icily, that she would agree to the terms I was asking for, including child support. As she started a retort, I informed her that if my attorney opened that file cabinet, she was looking at 5 to 10 years in substandard government housing. Her eyes got wide, for she knew what I knew about her illegal activities.
1 hour later, I was a free man and my daughter was no longer endangered by her own mother. My ex had agreed to all my requirements enthusiastically, almost with glee.
I'd spent a number of years playing poker with shipmate during overseas deployments, but never have the stakes been as high.
And it was by far the most rewarding bluff I'd ever made. I had enough, though, that she would have had a really bad time.
I moved forward, and these days, I can look at back at the wondrous turn of events from that point.
I met a wonderful lady in Yahoo Personals. We blended our families, and have just 2 of our 6 kids still living at home. My oldest step daughter has given us 2 grandchildren, and taken on the raising of 3 step kids with her new husband. My daughter is a Certified Nursing Assistant, working in SW Missouri. Another step daughter works at the college she is attending, while the other is just learning the art of driving a car, living with her father, for now.
The two youngest boys are being home schooled right now, and we're looking forward to the day they are out in the world. Time is so fleeting.
I still drive, and recently logged the 2 million mile mark. My company informed me that I was named Driver of the Month for January, the second time for this honor in the last 2 years.
And tonight, this story is done. I have shared a part of the Journey that has brought me here today. For those enduring a battle with the Big C, my heart goes out to you. Fight hard, fight well, and make a lasting impression on those around you.
For the families, lend strength to your loved one, make sure they know they aren't alone.
For everyone else, take in the joys of the day. Live and love well, make every day count, and take nothing for granted.
Thank you for your time. I for one, am glad to be here. And a big thanks to everyone at Crackberry!
Well, here we are 4 years later. 2.6 million miles and so much more as time has passed. Two daughters married, with a cluster of 7 grandkids, yes, some inherited, so far, with daughter #3 getting married in October and adding two more. One daughter is currently serving in Okinawa in the Air Force. The youngest of my biological children has turned 20, but still have two stepsons at home. One of them due to graduate this year. The nest is getting smaller.
The hospital I was in has been torn down, a victim of the Joplin EF5 tornado. A replacement is being built not too far away, and I was there just before the last tower from the old hospital came down. It was a strange experience, but the new one will be bigger and better.
Posted from my CrackBerry at wapforums.crackberry.com