A friend of mine wrote and sent this to me to get this off of his chest. It's hard-hitting, raw and very well written. Understandably, he wants to be "Anonymous". Enjoy.
It's hard to fathom that it's been 22 months since we first noticed something was majorly wrong (even with the misdiagnoses, we saw what turned out to be colon cancer the week leading up to the 4th of July). Since then, after the 'official diagnosis' that I was stage IV and had non-operable metastases to my liver, everything I read and saw told me the same scary thing... I had somewhere between a 5-15% chance of even making it this far.
I joined the support groups on facebook and online... read about every medication I may be on a hundred times... studied up enough that I felt I could say what the doctors would before they could go into their spiel before each procedure.
I saw people left and right in the support groups dropping like flies... so and so's loved one died within weeks or months, often not even in stage 4, but in 2 or 3. I saw internet trolls invading to peddle bad science, homeopathic cures, or push marijuana legislation promising all of us undergoing 'traditional' medicine that we were only killing ourselves to make 'the man' rich, or that it was our diet/sedentary lifestyle/sinful lifestyle/alcoholism/government/GMO/Vaccines that caused it. I saw people seemingly getting better and feeling good only to be struck down a few weeks later. I saw people giving up after one round of chemo because they couldn't deal with side effects, as well as people moving ahead with their 5th different type of medication because nothing seemed to work for them... Yet here I was, going through cycle after cycle of chemo, radiation, surgery, lather, rinse, and repeat.
I've been called everything from an 'inspiration' to 'another leech off the system'. I've met doctors who genuinely care for and want to do everything they can for their patients, and I've had doctors who I'd push in front of traffic for the way they've talked down to me and my wife. I've been scolded by doctors for not noticing or being as concerned about every little pinch or pain that may signal potential problems. I've seen the best and worst of military medicine (some great docs, some really bad ones, which led to my Army oncologist signing off any and everything he could to get me into the Johns Hopkins system so I wouldn't have to ever see any of the really bad docs ever again) as well as what is supposedly among the best possible medicine available in the civilian world. My current oncologist was shocked, but elated to hear me constantly asking about lowering my pain med dosages (which came in handy when I wound up in the ER and a doc tried to write me off as a 'frequent flyer' looking for pain meds... I genuinely avoid everything and have a pretty high tolerance for pain. He gave her a courtesy call when I showed up and she made him admit me immediately, because she knew if I was acknowledging it was bad enough to come in, she knew it was serious).
Every time I figured life was as tough as it could get, fate laughed and said "Hold my beer..." What started as one cancerous sigmoid mass within two months of diagnosis progressed to invade my bladder and prostate and start to squeeze up against my spine. My liver tumors grew to the sizes of golf balls and baseballs. The tumor invading my bladder opened a fistula, leading to blood, bacteria and feces invading my bladder, leading to a never-ending UTI and peeing out chunks of blood and solid crap; which feels like passing a three foot long kidney stone/removing a catheter as slowly as possible. During my radiation therapy, I literally pooped out a fist sized tumor; which is as gross and painful as it sounds, especially since it came with lots of clotted blood. It was also very strange, because I thought it was going to be a 'phantom poop' (I had a colostomy, and frequently felt urges to sit on a toilet the old fashioned way, even though it was very rare for anything to come out save a tiny bit of mucous).
Surgically? having a port put in is child's play. I got to start with a temporary (9 months) colostomy. Learned about different bag styles, changing my diet and meds based on how my poop came out. My boys thought it was awesome, hilarious, grossly fascinating, and unfair of me to be able to loudly pass gas and have a 'poop bag' hanging off of my stomach randomly start bulging. If I got sick, or worse had to do a 'bowel cleanse' for scans, diarrhea could take the bag from empty to a dangerously explosive water balloon of the foulest kind and ready to burst and send it EVERYWHERE in a matter of seconds. When they reversed it, they also removed half of my large intestine, my bladder, my prostate, and most of the seminal vesicles as one fully tumored-up and inseparable, useless mass. I now had a permanent Urostomy... and got to learn about THAT baggage system, noticing much more frequent leaks and need to empty the bags (or risk being soaked with and reeking of urine).
Not to be dismayed, when my colostomy had been reversed, a small nick had opened up in the intestine where it had been reattached and was unnoticed. This led to a new 'pocket of poo' that began to grow and fill the new void where the organs and tumors had been. I thought the pain and pressure I felt were a normal part of the healing process, considering I hadn't gone 'number two' the old fashioned way for nine months and the muscles were justifiably atrophied. Two months later, I had a stomachache. Thinking a hot shower might help, I screamed in pain as a searing river of liqui-poo inexplicably began gushing out of my no-longer peeing penis.
After another week and a half in the hospital, I left with a new 'temporary' ileostomy opposite the urostomy. (double the baggage, emotional or otherwise!) Again, I relearned all about ostomies (please don't tell me there's a fourth kind of 'ostomy'... or I'm sure I'll wind up with one of those too, just out of spite) and the worst one of all to have leak, different care and much much more attention to detail required than the prior colostomy.
In January of this year, the scans looked good enough that I had the best news I could've hoped for... my liver looked operable! Fate smiled, the angels/valkyries sang, and everything was peachy keen as the world appeared to be righting itself and in my favor again, finally.
Just kidding... when they opened me up to resect my liver, they saw small new masses and again declared it inoperable. It was like a bad cartoon where the main character is wrongfully imprisoned, and tunnels their way to freedom, only to find that the tunnel opened up into another prison cell.
Now, just for laughs, we found out today I've also got blood clots in my lungs that need to be addressed. It's not another knife in the back, but it definitely feels like a little bit of salt on the already opened wounds.
I'm not a complainer. You'd never know talking face to face with me how much literal 'shit' I've been through because of cancer. I feel that I'm lucky my side effects haven't been 'THAT bad'.
Yeah, I've got peripheral neuropathy in my hands and feet that leave them constantly numb and tingling. I get inexplicably angry and frustrated from time to time and have occasional insomnia because of the steroids. Some days, I have no control over my inability to keep myself awake, and can get winded from even having a simple conversation before I suddenly wake up and am told I fell asleep mid-sentence twenty minutes prior. Thankfully, I rarely ever get nauseous. I can count on one hand the number of times I've actually thrown up in the past two years. I can still (usually) stomach all the same foods I loved before (even though I've definitely noticed massive changes in my taste buds, and definitely have to wait until the 'day of' to know if I'll want to eat something specific).
Again, though... I see people dropping left and right from this shitty shitty disease, often with far fewer 'speed bumps'. Am I lucky? Am I cursed? Am I somehow predestined to survive all of this to die in some comedic fashion, or am I living the dreamed, slow, painful death of a nihilistic goth teen's deranged fantasy?
I think my family suffers from it worse than I do... or maybe it just seems that way because I'm not the kind of person who suffers, but instead finds a new angle to attack and charge ahead.
My kids went from seeing super-dad who never ran out of energy with them, coached their sports teams, played any and everything with them, threw them around in the air and wrestled them to the point of exhaustion every day to seeing him become yoda; a slow moving old guy who just knows everything, sleeps a lot, and tells them to be good and not give in to the dark side.
My wife lost her husband. I used to be the 24-hour, solid and reliable everything. I was the 'first out of bed, run 5 miles, do PT, come home, get everyone up, make everyone breakfast, get kids ready for school, kiss her, go do awesome Army things all day, come home, make dinner, clean up, play with/coach/homework/boy scout with the kids, get them ready for bed, read to them, and still have time to play ultimate househusband/best friend/binge-watch netflix or hulu shows while I'd rub her feet, shoulders, or just run my fingers through her hair until we were both ready to go to bed, and then get up and do it all again the next day guy.' Now, I still get up first, but barely have the energy to get the kids up, fed, and on their buses before I'm ready for a nap. I still do most of the cooking and cleaning, but at a muuuuuuch slower pace; often (again) with interspersed naps. By the time the kids are out cold in bed, I'm counting down the minutes before I'm probably ready to join them in peaceful slumber. Every bit of news leads to a growing list of concerns for her, as she tries desperately to plan for the day when suddenly she not only can't rely on me to even help. She needs to do it all on her own. Additionally, she needs to stay just as up to date with all of my meds, appointments, issues, and concerns as my brain frequently enters the fog of chemo residue and seems to no longer function; often in the presence of doctors or family members trying to offer their support or find out more information. I'm the guy who wakes up three minutes before his alarm ever goes off and turns it off, while she needs 4 or 5 hits of the 'snooze' button and can't remember to take her own meds if I don't have them already organized and pieced out in the container next to her bed when she wakes up in the morning.
When I was diagnosed, we had been trying for a third kid for nearly 4 years. Suddenly, we realized that there would be no more trying.
I lost myself. I did awesome and amazing (mostly classified, unfortunately) Army things. I was in the best shape of my life. I was the picture of the ideal Soldier. I literally did the work of 8 people/job titles and had a 'hall of fame' worthy resume less than five years here. I essentially ran a marathon for fun with a full combat load just to see if I could do it. I taught combatives (think MMA) and combat lifesaving classes for my joes as well as developed and taught courses (and literally wrote the book on how to develop training courses) for the entire US Intelligence Community. I served on committees as the subject matter expert on things nobody with as little rank or pay as I had should have ever gotten away with, and I did it with passion... loving every minute of it. The government civilians I worked with already refer to the time I worked there as the 'glory days'. I had enough "street cred" with my unit that from the initial diagnosis to even today, they've supported any and every request I've made, have shielded me from virtually all responsibility (my literal duty is to stay home and recover and call them if I need anything or have to go to the hospital for anything), the leadership have half-joked about creating a black ops mission and 'harvesting' anyone I choose for transplant organs at any time before I decide I'm ready to let the Army medically retire me. Now, I get winded after walking up a small flight of stairs, walking my dog halfway around the block, or standing for more than 5 minutes. I feel like a shell of myself.
That two year mark is fast approaching. I'm apparently one of the 5-15%. I don't know if I should be happy, grateful, scared shitless, or some combination of all three. I don't know if tomorrow holds anything better. I don't know if things will get worse. I don't know when my time will finally come and I'll join the countless others I see dropping left and right in this un-winnable battle. I don't know anything more than this... Cancer sucks.
**Important note: This was written last year. He's finally been retired, the ileostomy has been reversed, and he's still kicking and with us