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.

Tuesday, August 11, 2015


I don't seem to express it any other way, but I seem very fearful and have a hard time with depression. My scan on 7/22 revealed three small nodules in my lung and another in the other lung. There is not appearance of anything in the liver or even where I had surgery appears to be cancer free accept the soft tissue growth, scar tissue, cannot be ruled out, but the doctors all agree it is simply the results of the surgeries.

In the meantime the lungs are new and have me absolutely on the run. I spend most days feeling blue because it escaped the confines of my pelvic region.

I do chores around the house and try to disguise my depression from my wife. But it seems like my mind has a "mind" of its own that I have little influence over. It has always been that way. I made my living with my mind, and as a result it is very strong and active. Now I wish it weren't so.

What's to fear, really not much at this point. The only point of potential cancer is my lungs, it is very slow growing and I've even been told by my oncologist that I could wait several months have another scan to see if they've grown. However I believe his diagnosis for not that the nodules are malignant and are part of my colon cancer development.

I do have an appointment for Mayo's on Oct 5, this is now August 11. So it is sometime off. But I worry so much. It makes day to day living kind of a challenge. So far I've been up to it, but I still find myself dwelling on my troubles instead of my blessings. I will try to do better.

Thursday, July 23, 2015

Not What I'd Hoped For.

Yesterday I had a CT Scan W & W/O Contrast. The results of the scan show two areas of concern. My lower left lung has 3 nodules showing about 7mm in size. There is still an inflamed mass in my pelvic area, but while tumor recurrence could not be discounted it is more than likely scar tissue from the numerous surgeries.

I was upset, to say the least. I sure was hoping for a clean bill. However the nodules are about 1/4 inch in size and hopefully can be removed easily. The mass in my pelvic region is not worrying me too much. After all a surgeon was in that area twice, January and March of 2015 and found no evidence of cancer.

I have been off chemo for 8 months and hopefully an alternative can be found that would keep me off the chemo I was on because it sure had it effect on me.

Terry and I will see the Dr. tomorrow morning and find out what plan of action can be developed. No lymph nodes are involved and other than the three small nodes in my lower left lung and the unknown in the Pelvic region I'm clean.

I feel pretty good, but my mind is playing its games and from time to time I find myself clenching up pretty good as I realize that Cancer is back.

Monday, July 20, 2015

Some time has passed

It is now four months since my last surgery and my start of recovery. When I first came home I had to crawl up the stairs to my bed and I couldn't take ten steps without being breathless. The oncologist I see said he did not think I realized just how sick I was, I think I did.

I still recall lying in bed, so exhausted, in pain and spiritual pain that I kept praying for time to pass. I know with time the pain moderates or goes away and your mind will begin to develop protection from your bad thoughts. You have to go through that exercise though and this recovery was the toughest yet.

Things make you feel good though. My daughters kept telling me about their friends asking about their Dad. That made me feel good. My wife, God bless her, never gave up, was by my side when I needed her, which was a lot at first. I recall one time she got in my face when I made a statement about whether or not I was going to make it. "You'll make it all right, you are a tough person and besides I'm not going to let you die. I need you and it is too soon."

At age 62 when I began this trip with cancer I still thought of time on my side. Now after 2 recurrences and age 70 I ended up with doubts that I have to fight off. Fortunately I still have a wife that is relentless, I have daughters that love me very much, and I have a fellow colon cancer survivor who has become a friend and encourages me. I am thankful for these people.

After four months my mind is more settled although I do get tired at times which leads to some bad thinking. Vince Lombardi said it so well years ago, "Fatigue makes cowards of us all." Our will gets sapped and our strength seems to fade but a good rest or some uplifting success in home projects can reverse the bad thoughts and helps life be more enjoyable.

From a physical standpoint I am still relatively weak but I go up and down stairs quite well. My feet are numb on the bottom and for some reason my fingers tips are numb. My PCP ventured that some of that may be due to the chemo after effects. That is about the only physical side effects I notice at this time. My stoma is working well. I do have drainage from my rectal stump, but according to others in my condition that isn't unusual. It is no longer red, so the insides appear to have healed and it is just a mucous that is draining. I often wear a pad to keep my brief from becoming moist, but I can feel a wet bottom quite often.

All in all, I hope we got it this time. I am recovering nicely and don't have many restrictions on what I eat or do. Fatigue perhaps has the greatest impact at this time, but hopefully as I continue that will improve. A big thanks to all who have helped me with their prayers, thoughts and encouragement.

Saturday, May 16, 2015

Begining of 7 weeks of home recovery

I am getting stronger and feeling better. However still after 9 weeks from surgery my abdomen is awfully stiff when bending over. I guess it has to work its self out but perhaps with the stoma just above and left of my belly button it'll always be a presence. Recovery, while going well still has some complications.

Last weekend I was standing in my briefs and happened to look down at my legs. The left leg seemed noticeably larger than my right. I had never noticed that before and could it be new or just gone unnoticed for years.

My feet still feel swollen because the skin feels taught but the nerve compression seems to have decreased and they are not as tender as they were the first few weeks of recovery.

I did make the Home Health care Nurse aware of my leg swelling. She became quite concerned because I had not shown that symptom the week before when she was here. However, I don't recall having my pants down so it would not have been noticeable to her.

My wound seems to be healed. We do not bandage it any longer, but we keep it clean and watch it should the undercut portion not be healed and break out again.

My blood pressure has risen to the 160 to 180 mark and I consulted with my GP over MyChart and we agreed for me to start Verapamil and Losartin about a week ago. My BP has come down but not as far as I'd like. However, it takes some time for the therapeutic level of meds to be reached. At least it is below 160.

After the HHCN saw the edema in my left leg we also added HCTZ, a water pill I took for some time. The concern of the medical folks is possible blood clot. However I have no pain, just a tautness of the skin. There appears to be about an inch plus difference between the two legs. There is a slight discoloration, but I have no idea why.

This morning I looked at the legs and I did notice the difference in appearance was less than before. So perhaps the water pill is working. I measured with a tape and had less than an inch difference in size. I feel encouraged. In the meantime I feel pretty good and my attitude is good.

I have gone back to taking a Xanex and 10mg of Melatonin before I go to bed. It just seems to help. I've been having an increase in urination attempts. In fact for some nights it was every 45 minutes which is frustrating and interrupts my sleep. Since taking the Xanex and Melatonin it appears the frequency has slowed down. I still keep a urinal by the bed because it is irritating to get up in the middle of the night to pee. Even if the bathroom is a few steps away.

So begins Week 7 of home recovery.

Saturday, April 18, 2015

Colonoscopy: The Details

Your Dr. schedules a colonoscopy with a surgeon or GI Guy who does a lot of those procedures. You are prescribed a strong laxative because you need a pretty clean colon so the doctor can examine the surface of the colon for polyps.

Doctors can detect and remove polyps as small as 1 CM.

So, the day before the procedure you take off work or you stay home. The laxative is usually in a gallon jug now, and you have to mix it. Many come with artificial flavoring and I recommend you choose a flavor you don't especially like but can tolerate because it will be some time before you drink that flavor again. Make it the day day before and refrigerate it so it is nice a cold when you begin to drink the laxative.

Drink it a glass at a time. The directions will every 20 minutes. You may have to slow down, I get sick if I drink it that fast. The important thing is to drink it all and you will have a very liquid diarrhea. In fact, some describe it as though they were peeing out of their butt. That means it is working and cleaning that colon.

Keep drinking water and be prepared to stay up a bit because some times the diarrhea continues for sometime after you've finished the laxative. That's OK.

You do have to fast, or just drink liquids, eat jello, or Popsicles the day you prep. However, your mind will be elsewhere.

The day of the procedure you show up, undress, put on a gown and are wheeled into a small colonscopy room. There are usually two attendants and the Dr. and you lay over on you left side to give the Dr. access to your butt. You have an I.V. in and one of the nurses gives you a little shot and it is called an amnesia drug. You don't remember anything but the Dr. can give you directions to move a little one way or another.

All of a sudden you come to as the Dr. is finishing up retracting the scope, you wonder if the test is over and are told yes. You are taken back to a recovery room.

Now one thing, the colon wants to collapse around the scope so they use air to inflate the colon so the Dr. can examine the surfaces thoroughly. So when you start to have these enormous farts, enjoy, man or woman it is the same and it feels so good to feel you tummy go down. Don't hold back. I've had so many colonoscopies I've want to record my recovery but always forget and am too far out of it anyway.

So get a colonoscopy, nothing to be afraid of unless you keep putting it off, then you are just kidding yourself. Better to know than not.

Saturday, April 11, 2015

Start of Week 3

April 11, 2015, the start of week 3 of recovery at home. I am discounting recovery starting in the hospital because I came out of the hospital so low I don't feel other than some healing of the wounds I recovered anything.

So two weeks have passed and I have progressed to having my staples our, I walk pretty good, my energy is still low and I have to rest a lot. I have been outside and helped Terry with some repairs I can't make yet.

My sleep is somewhat agitated. My mind is restless and just wanders and keeps me awake at night till quite late. I am taking some Melatonin and that does seem to help. However I fear the night because my mind just seems to take over reality and I have a hard time distinguishing between my macabre thoughts and easy times.

The swelling seems to have gone down in my abdomen. I tried on a pair of pants when I first got home and couldn't even close the waist I was so swollen. I tried a pair yesterday, they went on well, however I've lost so much weight I sure won't be able to wear them for a while.

The soreness has pretty much dissipated from my abdomen, but around the stoma it feels heavy and awkward. My stoma is working quite well but I'm not sure I've been eating the types of food that helps it work. I had an episode two days ago where I passed stool off/on for about an hour. It felt good, but I don't think I want that type of action. To me it seems that it is having somewhat of a hard time.

We are eating regular diet type foods with some minor adjustments. I don't eat foods with seeds or skins. Other than that I had a couple of pieces of pizza last night that was kind of spicey but so far it has not effected me.

My stomach feels mildly upset quite a bit. I do not get sick, I think it is just in the recovery stage from all the surgery. At this point I have to keep concentrating on the fact that I am stronger and feel better than I did two weeks ago. It is kind of hard when you feel so weak and tired. But I did cook breakfast this morning and that is a help to Terry.

C'mon week 3, let's get past fast!