My first personal experience with cancer began in the mid-1970s. My father, after mis-diagnosis for a bleeding ulcer, was diagnosed with colon cancer. After several touch-and-go surgeries and treatments, he survived his ordeals. It was during this time that we found out that this type of cancer could be hereditary, so sigmoidoscopies were scheduled for my sister and me.
The first scopes were clear for us both. We would go in every year or so for scopes. In the beginning, the scopes remained clear. My first polyp was found when I was about 10 years old. It was removed and biopsied; it was benign. The following years we continued to have routine scopes. My sister’s scopes were clear, but polyps here and there kept turning up for me.
By the time I was 12, a full colonoscopy was performed; more polyps were discovered. (Back then, there wasn’t much sedation for these procedures as there is today.) As the years progressed, more and more polyps. By the time I was 18, the scope revealed that the upper and right side of my colon were lined with polyps. I was then given the diagnosis of Familial Adenomatous Polyposis (FAP). Options were soon to be discussed and decided.
In October 1985, I underwent a partial bowel resection. A little over half of my colon, a few inches of my small bowel, and my appendix were removed. The surgery went well. I was in the hospital for about a week; recovery and adjustment took about month. Life progressed pretty much normally after this procedure.
In 1991, I married; we recently celebrated our 22nd wedding anniversary. We had a son in 1993 and a daughter in 1997. Life was good. Scopes were relatively clean; a few polyps removed here and there, but no major health issues.
In 1999, my dad was re-diagnosed with colon cancer. This time they removed his remaining colon and installed an ileostomy. The surgery went well. He completed a 6 month course of chemo and all the issues that go along with treatment. He used to take my daughter with him to his treatments; she was about 2. I believe this was good for both of them. It gave her time with her grandfather and gave my Dad something to focus on other than the cancer. Currently, he’s doing well; age is starting to creep in, but he’s still relatively fat and sassy as ever.
The years progressed as they do. In February 2005, my wife and I took a trip to New York; it was the first time I’d been there. I loved it; lots of energy and excitement. In June, I started getting little heart palpitations. At first it was believed they weren’t anything to worry about; they only lasted about a minute or so and were gone. In July, we all went to California to visit my in-laws and visit Disneyland for it’s 50th anniversary; it was the first time my wife and kids had gone to Disneyland. We had a lot of fun, but there was an unknown cloud hovering.
I was getting bone tired and had to stop to catch my breath frequently. I was also visiting the restroom more frequently than usual. At first, I blamed it on the traveling, excitement, eating differently, etc. As my wife says, “…typical man, not admitting he’s ill…” By the time that trip was done, I probably visited every public (and non-public) restroom in the that park. (My kids took me back to Disneyland on my 45th birthday; I still knew where the restrooms were.) After a week or so from returning from California, I made a doctor’s appointment. I never made it to that appointment.
The heart palpitations were coming more frequently and I started to notice sporadic blood in the stool. The stool blood didn’t scare me at first, because that would happen every now again since the surgery in 1985, either from a blood blister or other irritation. It was the heart palpitations that scared me. I was fairly sure I was leading up to a heart attack.
A few days before my scheduled doctor’s appointment I was at work, returning from lunch, when something went really wrong. I had walked into the building, got into the elevator, and walked to my office. By the time I got to my office, I was having trouble breathing and had turned very gray. My wife called about that time; she decided it was time to go the emergency room (ER). On my way to meet her, she was hit by another driver. Both drivers were physically unharmed, but her car was totaled. So we had to alter our trip to the ER. After the necessary reports, etc., were complete, she drove me to the ER in my car.
Once at the ER, I told them I was having sporadic heart palpitations and trouble catching my breath. I was escorted to a room quickly and hooked up to some machines. A doctor came in and asked the usual questions. They proceeded taking blood, etc., and he said they would be back in 30 minutes or so. They, and then some, were back in about 5 minutes with more needles, IVs, and blood packs.
It was then that the doctor asked me how I arrived at the ER. Being the smartass I am, I laughed, and said I came through the front door. He was shocked; he was surprised that I was even conscious and hadn’t come by ambulance.
He then started to explain that the reason I was having palpitations was because I had no measurable red blood cells and was dehydrated. My heart wasn’t in distress, but it was trying to generate what I was missing. They proceeded hooking up IVs and blood packs and monitoring my heart. I started feeling a bit better after the first bag or two.
They ran some additional tests and decided an endoscopy and colonoscopy should be performed. I spent the night in the ER and started the scope preparations. I was moved to a telemetry room on August 18th where they continued to monitor my heart and I continued the scope preparations. (Now that I knew it wasn’t my heart that was the issue, I had some pretty good suspicions of what the scopes would reveal.)
The next morning the scopes were performed. I remember waking up once to put the mouthguard in and one other time looking at the screen and saying, “…well, that doesn’t look good…”; it wasn’t. After I woke up, the GI doctor came in with the results. First the endoscopy. My stomach was lined with polyps, but it was believed these were benign. The colonoscopy results were the immediate problem. They found three sizable tumors. He said there could be other issues, but they couldn’t get past the third tumor to scope the remaining bowel. They were 98% sure, even without the biopsy results, that the tumors were malignant. The CANCER word had been spoken.
Later that afternoon a “team” came into my room. The pathology results were back; as believed, the tumors were malignant. Obviously, surgery was the next step.
The head surgeon discussed the surgery options. They could perform the surgery as early as the next morning or wait the weekend until Monday morning. I opted for the next morning; the sooner the better. The surgeon stopped and looked at me for a few minutes and asked if I was “okay” and fully understood the diagnosis. I laughed a little and asked her why she asked. She said she had never told someone that they had cancer and had them take it so well. I told her that I had lived with this “cloud” for quite a while and that in a way it was sort of a relief (morbid, but a relief none-the-less). The other shoe finally fell. It was here; no more ifs or could-bes. Now let’s get the sneaky bastard!
We then discussed the possibilities. The best scenario would be to only remove the bad portion of the bowel and reconnect the remainder; the worst would be to remove it all and install an ileostomy. Truthfully, I didn’t like the ostomy scenario. They took measurements, decided on the best side to for ostomy (if necessary), and marked the spot with a Sharpie pen. Even with “assistance,” I didn’t sleep much that night.
The morning came and off I went to pre-op. The surgery was estimated to be about 4 to 6 hours. It’s was more like 12. I had extensive scar tissue that had to be dealt with and they found a fourth tumor. Needless-to-say, this wasn’t the best scenario. It was said that the surgery went well all considered. They removed all but the anus and about an inch of the rectum along with 13 lymph nodes; only a couple of the lymph nodes showed signs of malignancy. They “ran” the liver by hand and hadn’t felt anything they believed to be of significance; however, they wanted to perform a CT scan later.
When I woke up in Recovery, I felt my right-side and there it was…an ileostomy. I remember saying, “Dammit” and looking over at the nurse and saying, “…I’m hot and I hurt…I know who I am, I know where I am, and I know what they did…I’m going back to sleep now….” I woke up off and on while being moved to a room. I wasn’t happy by any means. The only words I said for the remainder of the day were, “hot and hurt.”
On Sunday, they let me sit in a chair and walk around a little. On Monday, they let me sit in a chair while they took my vitals; my counts were too low so back into bed I went with another transfusion.
Then Tuesday came. The day started out well enough. A CT scan was scheduled for later that morning. I was finally allowed to eat real food since the day this all began. It was so good! I drank the contrast and completed the CT. I felt well enough afterwards to take a few laps around the floor. Everything was quiet until later that afternoon.
Late that afternoon, I started getting cramps. Understandable since this was the first time I had eaten solid food since my system was altered; however, it kept getting worse. It was initially believed that more activity would help my system wakeup and process. The pain kept getting worse. I was rounding the corner to my room when the pain almost cut me in half. I stumbled; one of my doctors had just come around the other corner and was able to catch me before I hit the floor. He got me into my room, put me in a chair, grabbed some pillows from bed, told me to hold them against my incisions as tight as I could, and let it all go. I vomited for what seemed like hours. My system was rejecting everything I had taken in that day.
The doctor stayed with me through the whole mess. After the convulsions had eased and I was able to focus again, he helped me clean up. He didn’t call a nurse or orderly to help me; he helped me. It gave me a greater respect for him. However, the bad wasn’t over yet. The results of my CT had come back; this is why he was on his way to see me.
The CT had revealed spots on my liver and a shadow on my lung. I could see the pain/hurt/pity in his eyes as he told me what this meant. In all likelihood, the cancer had metastasized to my liver and possibly my lung. This was the first time I had felt like I could actually die. My mortality had just slapped me square in the face. All the barriers and supposed bravado that I had built up over years was dissolving and fast. I lost it! I had never felt so raw and vulnerable in my life.
I called my wife and mother and choked out the words. As expected, they came to the hospital.
My Dad coming to hospital was the surprise. With all he had been through over the years, he hates hospitals. He does about anything he can not to have to step foot in one. We had an unspoken understanding; unless things got really bad, he wouldn’t come to the hospital. He called me everyday to checkup on me and make sure I was doing okay; this worked for us.
I woke up with only my Dad in the room with me. I had absolutely no doubt now that things were really bad. After talking with him, I decided I wasn’t done just yet.
Since it was feared that I may have damaged something during my earlier vomiting episode and the fact that I still couldn’t hold down solid food, I had to stay in the hospital for about another week.
During this week (six days with an ostomy now), a supposed wound-care specialist came in to talk to me about the use and care of an ostomy. After talking to this woman and if I hadn’t already known better, I would have believed that if the cancer didn’t kill me, the ostomy would. The horror stories she spun about having an ostomy, in my opinion, were unconscionable. For the record, she no longer consults at that hospital.
I was allowed to go home the next week. My “team” wanted to have a PET scan performed before we decided on the next steps to take; however, my current unhealed wounds would produce a false positive. I had to heal some before the PET could be performed.
So I spent about a month at home waiting, healing, and obsessing. During this time, we were consulting with our pediatrician to have our kids evaluated for possible FAP, etc. To date, their tests and scopes have come back clear.
The day finally arrived for my first PET scan. The results were as suspected. An area of my liver and a spot on my right lung lit up along with a sizable blood clot in the portal vein of my liver. It was originally believed that I was Stage III; however, with these new results I was launched into Stage IV and beyond. My case was sent to the tumor boards. There were numerous discussions concerning what path to take.
It was decided that the metastatic portion (about a third) of the liver should be removed and an internal port installed for future chemotherapy and other treatments. The lung spot was further reviewed and determined to be a less significant issue, unrelated to the current metastasis, but would continue to be monitored. Lovenox shots were administered for the blood-clot issue everyday until a week before the liver surgery.
The liver surgery was scheduled for October 7th. During the surgery, it was discovered that there was one tumor deeply buried; supposedly, this is why the tumor was not detected when they ran the liver by hand during the first surgery. I woke up in Recovery and the lead surgeon was there. He said that he had some good news. He said that the surgery went well and that they had also removed my gallbladder so now I would never suffer for gallstones. I smiled a bit at his attempted humor.
Pain control was an issue after this surgery; nothing seemed to dull the pain at first. At this point, I just wanted to be unconscious. A combination of pain killers was finally instituted and I started feeling much better.
By Sunday, I was allowed to sit in a chair and move around a bit. We started the blood thinners again. All seemed well for bit, but not for long.
On Monday, when my family came to visit, my wife noticed my pallor was off. I was gray and lethargic; I was bleeding out. She hollered for the nurse. The next thing I knew a group of people emerged with all kinds of machines, etc., and I was being wheeled down the hallway. I must have blacked out during the move, because the next thing I remember was waking up in the CT lab during a scan. Everything went black after that; I had slipped into a coma.
I woke up four days later. I noticed I was in a different room. There was nurse there checking my vitals. When I asked her where I was, she jumped; I had startled her. I found out later that they hadn’t expected me to wake up.
I was now in ICU. After they had taken my vitals, etc., I called my wife to find out where my glasses were. Evidently, no one had called her yet to tell her I was awake. When she answered the phone and I asked where the glasses were, she screamed and dropped phone. I was again reminded that they hadn’t expected me to wake up. I can understand how a call from your comatose husband could be a shock.
After waking up and getting my bearings, I got the full scoop of what happened while I was comatose. I had been bleeding internally, losing blood faster than they could pump it in. I’m still not sure exactly how many transfusions transpired during this time. They had told my wife that my chances of waking up were slim to none; if she hadn’t already started planning my final arrangements, she should probably start.
In addition to everything else, I now had a good-sized hematoma floating around near my liver. Due to everything that had transpired earlier and my current weaken state, the doctors didn’t want to risk another surgery. It was believed that my body would naturally absorb the hematoma; it would be a slow process, but with proper monitoring it didn’t pose any significant risk.
I was moved out of ICU after a few more days of consciousness, but I was still watched very closing. I wasn’t allowed to get out of bed or walk around without an escort. It was nice having the port during this time, because pretty much everything could be administered or drawn from there; no new punctures for everything as before.
After spending a couple more weeks in the hospital, I was finally allowed to go home again, heal, and start life with an ostomy that hated me. To be honest, I hated it in return. Going out in public was not something I was interested in doing at all. I felt like anytime I went out, I was being evaluated and judged. I didn’t want anyone to know what had happened; what I had endured. Even though I knew deep down it wasn’t true, I felt like I was the only one to have suffered through colon cancer, life with a ostomy, and now impending chemo. I was content to stay home in my shell and as alone as possible. I had a fairly good pity party for one going on. I wish I had known then what I know now
My chemo started on November 16th (our wedding anniversary); one hell of a gift, huh? My chosen poison was Fulfox5/Avastin for at least 6 months, every other week (one day in the clinic, 3 days connected to an external pump), with Neulasta chasers.
I had read the literature about the possible side effects, but I didn’t think they would start on the first day. About half way through the first treatment, my wife brought me lunch. I wasn’t really hungry, but was thirsty. She handed me a bottle of water; I took a sip and almost spit it out. It was like drinking cold liquid metal; it was disgusting. So she gave me some lemonade; this tasted like a burnt rubber tire smells. In my lifetime, I have tasted some bad stuff, but this was beyond bad. Any food was about the same, just bad tasting. Ginger ale was about the only thing a could drink without gagging.
At my second treatment, there was an older lady there having the same kind of treatment I was having and this happened to be her second one also. We were sitting across from each other. The nurses hooked her up first. Once her treatment was flowing, they started mine. A few minutes after my flow started, the poor lady started shaking, then convulsing, and passed out. The nurses were there on the spot. They had to call an ambulance for her and rush her to an ER. This freaked me out! During the commotion I shut off my pump, kinked the tube, and was ready to pull the needle out of the port in my chest. I was determined that wasn’t going to happen to me. It turned out that the lady had had some type of drug interaction between the chemo and some other medications she was taking. It still took some convincing from the nurses before I let them start mine up again; it completed without incident.
By the fourth treatment, the nausea and sensitivity to cold set in.
For me, the nausea was the worst of the whole chemo experience. Nothing seemed to work. I couldn’t keep anything down. I was losing weight at an alarming rate. At 6’ 2”, I was down to 134 pounds and still highly anemic. We finally found a combination of medicines that helped; however, we had to get special permission from the insurance company, I was only allowed 5 pills per treatment week. There was only one pharmacy in the state that was allowed to dispense the pills. The pharmacy was next to a veterinarian’s office, so the on-going joke was that I was getting horse medicine for my nausea.
Due to the sensitivity to cold, soon everything I ate or drank had to be at least room temperature. If a tried to drink anything colder than that, my throat would swell shut. Even if the air was too cool, my throat would react. There was one morning the air had evidently gotten too cool in the room and I woke up choking because my throat was closing. It took warm compresses and hot tea to ease and stop the constriction.
There was a steroid in my mix that we finally had to drop. I couldn’t sit still, even my eyes would shake. Try reading or watching TV with your eyes shaking and being nauseous, not a good combination. It took a while after the removal of the steroid for this to go away.
Then came the neuropathy, tingling and numbness in my hands and feet. Some days this got so bad I couldn’t walk. I had to stop driving for a while once my feet were affected. I couldn’t trust myself to hold onto anything, so my days were mostly spent listening to books and day dreaming.
One day, a new older lady joined our chemo ranks. She had noticed, after a couple sessions, that I didn’t do much during my sessions other than stare into space. One day she asked me why. I told her that there wasn’t much I could do anymore that didn’t make me feel worse. She told me it was time for me to learn something new.
She was a crocheter. She said it helped her tremendously with the neuropathy in her hands. Now I had seen my grandmother and aunts crochet, even tried it a few times, but never really accomplished anything. She taught me a few stitches and it actually helped. It wasn’t long before most of the feeling in my hands was back and the tingling was manageable.
The one side effect that I was expecting didn’t really happen. I didn’t lose my hair. My body hair thinned out and my facial hair got softer, but I retained my vanity, no noticeable hair loss.
…and, thus, my treatments continued. Due to my blood counts, some treatments had to be delayed a few times; however, for the most part, we stayed close to schedule.
One day, I received a letter from the company I worked for at the time. The corporate office had decided that since I had been on medical leave for over 12 weeks and even though my benefits covered long-term disability, my employment was being terminated. They would still pay my insurance and long-term disability, but they didn’t feel the need to hold a position for me any longer. I couldn’t believe the audacity of this company. Like we didn’t have enough going on in our lives. Luckily, I was fortunate enough to know and work with the right kind of people locally. Once my people found out, the issue was rectified.
In late December, I started having some lower back pain. At first, I thought I had strained a muscle; however, the pain started feeling more like a kidney or bladder infection. The doctors ran some preliminary tests, but no infection was found. The pain kept getting worse. Eventually, the pain got so bad that I ended up in the ER. My urinary tract wasn’t functioning properly; the reason was unknown. A catheter was inserted and the fluid/pressure drained. The catheter stayed until the issue could be diagnosed.
As time passed, the pain had become so excruciating that the current pain medication wasn’t helping at all. I couldn’t sleep or eat; the slightest movement was excruciating. The doctors put together an opium concoction that finally masked the pain and kept me in a euphoric state. Later on some people would ask me if the doctors ever prescribed me medical marijuana; I’d laugh and say, “…no, just opium…”
An exploratory surgery was scheduled to see what was going on inside. The surgeons discovered that some of the organs had fallen and had become tangled. My bladder was folded in half and was resting against the rectum stub. The surrounding area was swollen and was obstructing the regular flow of things. The surgeons straighten out the mess and pinned the fallen organs back where they belonged.
In late January, we (me, my ostomy, and my chemo pump) went back to work. I admit I still had days when I hurt like hell and felt sorry myself, but those days were getting fewer and fewer. My ostomy and I still had a hate/hate relationship. It taught me that embarrassment won’t kill a person. On more than one occasion it decided to burst during a meeting. Nothing like holding your head high and walking out of a meeting drenched in your own bodily fluids. After a couple episodes like that and not much can rattle you.
As time went by, we learned to live with each other. We never really liked each other, but we got to a point where we could tolerate each other. As most things do with time, it all became routine. I learned what to eat and what not to eat. Which barriers, pouches, etc., worked for me and which ones didn’t. As time went by, I was on a first name basis with some of the representatives from Edgepark (the ostomy supply company).
In June, I had my last chemo treatment. I had no trouble leaving that damn pump behind.
In July, the port was removed. Oddly enough, the four injections into my chest for preparation of the removal were the most painful of any of the other injections I had received during all that had transpired. Luckily, the pain didn’t last long; the “twilight” meds took effect quickly. The port was removed without incident. This was the last of the surgeries related to the cancer ordeal (or so I thought then).
Now, the objective was to let everything heal and maintain. I had asked my oncologist team about remission; I wasn’t overly thrilled with the response. They said that there was a good chance that I would never truly obtain remission no matter how long a survived and it was better not the dwell on the title.
I was now going in every couple of weeks to the see the oncologist and surgeons for well-care visits. Blood draws, CT scans, and PET scans became routine during the following months; all was actually going well.
During this time, I still wasn’t overly social or willingly to talk about my ordeal at any great lengths. It happened, it was over, and it was nobody’s business. Until one day, a work colleague of mine called me at home. His wife had been diagnosed with Stage II colon cancer. She was very scared and upset. He didn’t know what else to do to help ease her distress, so he thought having her talk directly to someone that had gone through the same type of cancer would help. It actually helped both of us.
Talking with her and helping her come to terms with her fears was somewhat of an awakening for me. I started thinking that if my experience could help someone else not to have to go through the hell I did, so be it.
Her story; however, had a bitter-sweet ending. Her surgery went well and she completed her treatments. She was a real trooper. She and her husband had always wanted to travel; after her recovery, they traveled. They had finally taken their dream trips. However, their joy wasn’t to last. She started having some pains in her right side, so they returned home. The cancer was back and had started to attack her liver. Within about 2 months, she was gone. Cancer sucks!
I’m no longer quiet and talk quite openly about the hell known as colon cancer and the steps for prevention. A few uncomfortable moments during a colonoscopy is a small price to pay for not having to deal with any of the things I went through. Be proactive, not reactive. Get screened!
During the next months, life returned to “normal.” Routine well-care visits and no issues.
In February 2007, I received a call from one of my surgeons. They requested an earlier appointment than my next well-care visit; they assured me that nothing was wrong and they would explain when I came in.
It turns out that I was now a candidate for reconstruction. Evidently, they had left the anus and that small piece of rectum for this purpose; however, the plan had been sidelined when things had gotten bad. They explained the process. The reconstruction would be done in a two-part series.
The first surgery would be to construct an internal pouch (j-pouch), convert the ileostomy from a permanent ostomy to a reversible one, and re-connect it all. After some healing, tests and scans would be conducted to make sure everything held with no leaks or issues. The second surgery would consist of reversing the ostomy and turning on the new system. I agreed immediately; I wanted to be rid of the ostomy.
The day came for the first surgery. This surgery went well; the recovery was another issue. At first everything progressed on schedule. After a couple of days, I was allowed to eat. This is when things went south. The bowel didn’t want to wake up and process. This caused a lot of cramping and heaving.
It was finally decided to insert an NG tube to drain my stomach. This was the first time I’d been conscious for an NG insertion; I found out quickly that, personally, I prefer to be unconscious when these are inserted.
I was put back on a liquid diet for a few more days and they started some medicine to help wakeup the system. We started slowly introducing solid food again. Finally my system started accepting and processing. A few more days and I was allowed to return home and heal.
After several weeks, I went in for a barium study. The barium was administered from both ends to observe the path and integrity of the new system. It all worked accordingly, no leaks. Now for the second surgery.
Again the actual surgery went well; and again recovery didn’t go so well. As expected, I had a good three-inch hole in my lower-right abdomen area where the ostomy was removed. Everything was progressing as expected for the first day or two. Then, out of the blue, my blood pressure dropped alarmingly for some unknown reason and my bladder stopped functioning.
I was immediately put back in bed with a blood transfusion, meds to help elevate my blood pressure, and a catheter (another thing better administered when unconscious). After a few days of treatment, everything started the level out and I was allowed to go home.
During this time, my hair and turned white and slowly started falling out. There was no true explanation for this happening. I got through chemo, etc., and kept my hair, but no longer. I looked like I had mange. I finally just accepted the loss and shaved the remainder off. It never returned; some fuzz here and there now, but nothing much. (Not having hair saves a lot of time in the mornings, no prep needed.)
The next days were spent with the doctors for dilation and control therapy. This all went well.
After all this, things began to settle down; I returned to work and routine. I was meeting with my oncologist team every two weeks or so.
In June 2007, my sister was diagnosed with Stage III colon cancer. She was able to have a partial resection with no type of ostomy needed. She completed six months of chemo therapy; the same regimen I completed. Her recovery was successful. She is doing well today.
In 2008, my oncologist’s genetic counselor requested that we do some genetic testing to obtain further understanding of my case. It turns out that I don’t carry the usual known gene mutation; however, there is a gene abnormality that is now believed to be related to FAP and colon cancer. Studies are still on-going as to the nature of this abnormality.
One day my blood results came back with some irregular results. More intense tests were performed, because it was believed these irregularities could be the beginning of a type of leukemia. This caused a roller coaster of emotions.
Thankfully, it wasn’t leukemia. It turns out that my heart has trouble adjusting the red-cell production; it either produces too much or not enough. From the time of this diagnosis, we continue to monitor my red-cell count and adjust it as needed. As time has passed, I have gone from every couple weeks to every couple of months. It’s getting better, but is slow going.
With the exception of the red-cell production issues and bouts of continued neuropathy, I’m going strong. I have been cancer free since 2006. I have learned to be more open-minded and less judgmental. I don’t worry as much. Within reason, I try to live for the day, because you just never know when it will be the last one.
If anyone is interested in the my advice concerning cancer…
Remember to breath.
Be your own advocate (or find someone you trust to do so).
Take it one day at time.
Thanks for reading!