Tuesday, December 22, 2015

It has been a long time.

Quite a while has passed since my last post. Things have taken a turn for the worse. A year ago in August 2014 we discovered a third recurrence of my colo-rectal cancer. I started a regime of chemo to reduce the tumor in my pelvic area. This was considered a local recurrence and the cure is very possible although with each recurrence the prognosis for success reduces.

I went through three months or chemo that had some bad side effects One of the worse was from a drug Oxyplatin. It causes you great sensitivity to cold, I could not drink cold drinks, I could not handle cold items and my mouth hurt and felt like it was full of pins and needles if I took a cold drink.

You cannot believe how your body craves something cold in your mouth. Ice water, a cold beer, ice cream, anything. You cannot stand the pain. This lasted till early December 2014, when we ended chemo.

In the mean time I consulted at the University of Arkansas Medical School with their chief oncological surgeon. The surgeon in Jonesboro was reluctant to perform the surgery because of the scar tissue and the high risk of bleeding.

January 15th I underwent surgery in Little Rock to remove the small cancerous mass and install a colostomy in my side. I was adamant I did not want a resection. I had roughly 8 years of having between 15 and 25 bowel movements a day, many accidents, embarrassments pain and bleeding. That was enough. Apparently the chemo had been very effective because the surgeon found no evidence of cancer.

When I came out of surgery I had a bad reaction to the anesthesia that caused some very severe mental and behavioral issues. They also discovered a fistula that was connected between my small intesting and rectal area. They shut down my digestive tract, I went on a protocol where I received my food through PIC lines that connected directly to my blood vessels. I had nothing to eat or drink for over ten weeks.

In addition the fistula allowed drainage from my small intestine to come out my rectal area. It was so acidic that within days I had a severe case of "diaper" rash and it lasted for over six weeks. I ended up back in the ICU at UAMS for over a week, because the stoma was leaking right toward the surgical incision and there was a real worry of sepsis.

I also went to the ER in Jonesboro and was admitted for some reason I cannot recall. That night I wanted a sleep aid and had such a powerful reaction that it brought the emergency teams from the heart wards to see if I was having a heart attack. I was freezing and shaking so hard it hurt. The next day one of the nurses in attendance came to me and said she had never in all her days seen a human body shake as hard as mine. They just kept covering me with blankets until the condition passed, but it was not nice.

Back home the "diaper" rash continue to grow worse until the pain was unbearable. My butt looked like fresh ground hamburger. I could not sit, I could not lay down, I could only stand and then not for long. I tried sitting on all manner of cushions, ordered special cushions, nothing worked.

One evening I decided that if this was going to be the quality of my life I could not stand it. I would end my life. That was the closest I ever came to wanting to harm myself. I told my wife I simply could not take it anymore. She called UAMS and they had me come down Monday March 14. When the surgeon saw the condition I was in, that I sat crouched in a chair on my legs instead of my butt and understood the extreme pain I was in he admitted me and scheduled emergency surgery for the next morning March 15.

They fixed the fistula. However the damage was done. My body was so run down I could not walk, I had trouble breathing, and was just exhausted from the fight. Because I had not had anything to eat for 10 weeks the fecal matter in my upper colon had hardened. I was subjected to enemas, and finally an NG tube to try and work the material loose so my colostomy would work. That little dude had no action for the same period. Finally one night my colostomy bag puffed up like a little bag of bread, I mean INFLATED. I called the nurse thus began one of the darnedest episodes I'd ever been part of. Two nurses stood next to me with plastic tubs catching the liquid material from the bag and one would rush to dump the output while the other caught the next load. I was so attached to the bed with tubes and stuff all I could do was stand there, I couldn't get to the bathroom.

When the episode finally was over one nurse said that he had counted 7 liters of material and wasn't sure he'd really accounted for everything. I guess that upper colon was now clean.

I still wasn't done with the NG tube as the doctors wanted the bile coming from my stomach to been lighter in color and my was still black indicating the presence of liquid stool. So they didn't believe that the blockage had been completely resolved. However after a day and with the addition of a liquid diet they felt the risk of removal of the tube was OK.

Finally after 11 days the doctors felt I would do better at home as I was just not making good progress in the hospital. I was released, went home and had to crawl up the stairs to my bedroom. I was in so much pain and I could only take six steps before I had to just simply stop and breath. Weak doesn't describe the condition, powerless comes close. During this three month period I had four transfusions because my hemoglobin had gotten so low. It was in the 7's and 14 is considered the low range.

Under the diligent care of home health care, physical therapy and my wife I started making some progress, but it was very slow.

Because of my condition my oncologist schedule no follow up chemo and actually we waited until August before we did a follow up scan to make sure we had gotten everything. The day after the scan the doctor called and wanted to see me right away. I had already read the results of the scan as it is posted to MyChart right away.

The scan revealed some nodes in my lungs that had not been there. The doctor felt the cancer had metastasized even when I had surgery to remove the recurrence and that we were now fighting to extend my life not cure the problem.

I made an appointment at Mayo's and we agreed we would do nothing until I went to Mayo's had a scan there to confirm or deny malignancy. Mayo's confirmed on October 6th, and in fact found a couple of suspicious spots on my liver, a small spot on a vertebrae, a swollen and inflamed lymph node in my chest and a probe of my rectal area found a small local recurrence of the tumor the surgery was supposed to remove back in January.

You can imagine the impact that news had. Thus began the trip down diagnosis Stage IV.

Very quickly I am doing well, my mental attitude is one of positive anger that I will survive. I am responding well to the chemo I am on at this time. Things may change but right now I'm OK. I will write more later, but this is enough.

I am going to stop this blog here, it is too long, but I had not written for so long I wanted to get it out so if I feel like going on it would be such a mind dump.


3 comments:

  1. Thanks for the update. I've been concerned and checking regularly. I find a good dose of anger helps too! Stay strong and do the best you can each day. Many blessings - Christine

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  2. this is my first time commenting. I was looking for info on my condition and still haven't found much of people going through the same (2 months in and still only mucus, several times a day plus a whole bunch of other stuff that doesn't even compare to what you are going through).

    I just wanted to say that i am sorry that things took this turn for you :( best of luck!

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  3. I thought that I had it bad... Tom, you are a very strong person. It's obviously been a while since your post. I DO hope and pray that you are doing well sir and are no longer in pain. Please let us know Tom.

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