Monday, August 27, 2012

One Year

August 26, 2012

I think but I don't know for sure, that some people/patients celebrate the date they found out they had cancer. They say, "Well today is my fifth year surviving cancer".

Today is the one-year anniversary of finding the cancer in me. So am I suppose to remember this day and all of the horrible memories associated with the next 365 days, or am I suppose to say, I have survived one year as of today?


Fittingly, I spent this afternoon on a photography trip with my best friend, Peggy. We drove to Cumberland Point and just had a great time. It was a much better day today and one year ago today.

Your prayers and concerns have kept me alive one year. How about a few more?

Thursday, August 23, 2012


Probably one of the worst days I've ever had. I can remember only one or two that even come close. For some reason, after I had been up for an hour or so, what ever it is inside of us that supports our moods simply collapsed, and my emotions went into freefall. It was very cyclic - not so bad one minute, extremely bad the next. Sights and sounds - any stimulation what so ever seemed painful to me. I thought I can't sustain this level of hopelessness indefinitely.

Fortunately, I had a doctor's appointment with my new internist this morning at 11 AM. On the way over there, I was chilling one minute then burning up the next. Sitting in the lobby, I was freezing, then I was boiling - and I knew I had to be running a fever. I have not been feeling well for several days now, and I have been positive that the cancer is back and this is what is running me down. After this horrible fight to continue living - to see my Grandson grow up, even just a little bit - to continue being here for my Son - the entire Pittsburgh experience all for not, "now that the cancer is back; and in just two or three months", I thought.

Sitting, shivering in the waiting room, I thought, what are they suppose to do with me now? They've given me chemotherapy that almost killed me, they've given me four surgeries, one of which almost killed me - Oncologists have a philosophy; they can keep most cancer patients alive pretty much indefinitely using chemo, but they know that it would be a life not worth living; so they reach a point where they let you go. Surely I am near that point. In my weakened condition, I doubt they'd even do anything else to try to save me.

This is how horrible my thinking had become.

So I went in to see the doctor and after briefly discussing my recent weakness, chills and hot flashes and state of mind, he went over the results of the last visits blood tests. He said that my testosterone level was virtually non-existent and that could lead to many problems, including deep and serious depression. He said that he could treat the condition, but he required me to get clearance from my surgical oncologist, Dr. Bartlett back in Pittsburgh. He said that he did not want to feed the cancer.

My new doctor doesn't mind spending a lot of time with me, and it allows me to ask all of the questions I want to ask. I told him that I was virtually certain the cancer had returned, and even if it hadn't, it certainly would in the near future. I told him that I felt doomed. While my thinking on this is not entirely reasonable, it showed how hopeless I had become. Out of the many words exchanged between this young doctor, and I, he said one of the wisest things I've ever heard.

Without arguing with me about my paranoia regarding the return or eventual return of the cancer, he said that if we lived forever, life would become meaningless. He made the statement that death is what gave life meaning. And he is correct. I instantly felt better - the depression and anxiety lifted somewhat and we began to discuss my REAL symptoms.

He said that I was up against a lot of things that could be making me feel miserable. First of all, it's only been a short while since my surgeries and my bleeding experience. He showed me evidence in my lab report that my system was making large quantities of new red blood cells. A very good thing. He said this was in response to my serious blood loss and transfusions just a few weeks ago. He further said that I had not finished healing from the surgery itself - nowhere near finished. My entire large intestine was completely closed off (on purpose) and it was virtually impossible to stay adequately hydrated without a large intestine. Then, he added, you have no testosterone in your body; and you need that in order to feel good. Now add a possible virus or stomach bug - even the flu and your body and attitude will crash into a thousand pieces. He reminded me that even though I had been recovering from major surgery, I was still a living, breathing human being - certainly capable of catching something other than cancer that could be making me feel so bad.

So then he examined me, listened to my breathing, and he said that he wanted to get more blood work done and also get a chest x-ray. I suppose he didn't exactly like what he heard coming out of my chest. Even though I was in a much better mood after his speech, my first thought was "great, now it's in my lungs".

Extremely pleased with my visit, I proceeded with the lab work. The doctor told me that he'd call me at the end of the day with the results of the radiology. I left and continued chilling and boiling and my mood slipped back down, but not as low as before. I occupied myself with sewing and getting photos ready for the art show (SEPTEMBER 8 @ CEADAR CREEK VINEYARDS - SEE YOU THERE).

At five-o-clock I drove back over to his office to get the news in person. Even though it was after hours, the doctor brought me back into an examination room and told me that I had pneumonia in my left lung. "This, combined with everything else, is why you are feeling so badly". I was relieved. Have you ever heard of anybody, ever, being relieved that they had pneumonia? He said that it was a relatively mild case, and it was a borderline issue whether to put me in the hospital or not. He said that he'd rather keep me out of the hospital for fear of catching other germs. He opted to treat me with high-powered antibiotics on an outpatient basis for now. He arranged for a shot and also wrote a prescription. Oddly enough, even after all of the pain that I've been through, that dang shot hurt like hell. It hurt as badly as anything else, and that seemed strange to me.

During my initial Pittsburgh surgery, Dr. Bartlett found cancer in a portion of my diaphragm and he had to remove %25 of it. Since then I have been unable to breath very deeply and this is probably the principal cause of the pneumonia.

When I got home from my various activities and errands, I got on Facebook and I read all of the comments and messages from all of you… and I felt overwhelmed. I had so many private messages; it will take me quite some time to respond to them all. They ALL seemed so eloquently written - and spot-on in terms of what you were sharing with me and telling me. Your messages and comments lifted me up so very much - it is hard for me to imagine being cared for so much by so many people I hardly even know, or know not at all except for Facebook.

But there is a symbiosis with Facebook, and sharing things like I did with my Pittsburgh story. So many of you wrote to me and told me how inspiring my story was. And that I had helped you in some way, I am still unsure how. I am not sure why I wrote all of that and put it up for you all to see… But now I believe it is Devine. I was lead by God to write it - I inspired you (I still don't know how) and now, when I've reached a bottom; a state of hopelessness and despair, YOU LIFT ME UP. YOU INSPIRE ME. YOU PRAY FOR ME. You administer Goodwill to me as if it was CPR and you turn me around as if I were a cardiac patient just revived from a heart-stopping episode.

Symbiotic. Quid Pro Quo (one hand washes the other).

Of course, tonight I still have low testosterone. I still have pneumonia. I am still not fully recovered from the cancer treatments and I am still very weak. But at least I feel a great deal more hope than I have in the past few days. And for that I thank you so very much.

God Bless You All!!


Monday, August 20, 2012

Pittsburgh - PART EIGHT


July 12, 2012

By the time it came to leave for the airport, I was exhausted. Mother and I had taken a cab to see Dr. Bartlett that morning, and then another one back to the Family House. Of course, I had to pack up my things, which weren't extensive in volume, but over a months worth of original stuff and then some buildup while in Pittsburgh as well, it amounted to a seeming mountain of stuff. We caught another cab to the small, regional airport, Allegany County, that we'd been using; a little larger than our own airport in Pulaski County, KY.

Large city cab drivers are breed apart from the rest of humanity. Even though we had called Yellow Cab, The White Cab Company soon showed up and asked if we waned to go to the airport. Mother and I were confused. We didn't know if this was the cab we summonsed, or if another cab company was stealing clients, or if the cab driver simply saw our luggage on the porch and assumed we needed a ride to the airport. When we tried to extract more information from the cabby, he simply repeated himself. "Do you need a ride to the airport"? - becoming visibly upset with us. What a rude and odd fellow, we thought. Being anxious to get going, and not at all sure this was truly our cab or not, we agreed to go with the idiot, resigning ourselves to the fact that we were not going to get any clarity from him. During our stay in Pittsburgh, the strangest, least civilized group of people (by far) we had met were the cab drivers.

By the time we arrived at the airport, I was truly exhausted. I was still getting around using the "walker" the hospital had gotten for me, and I had done far more on this day than on any other since before the first surgery. Once we'd gotten all of our stuff into the lobby, the lady at the counter was a big help to us in that she was able to tell us where Phillip (Cross) was, our pilot in his flight. She said that he had just left the Somerset/Pulaski County airport and would be arriving at Allegany (the place we were) in a little more than an hour.

Despite the appearance of brazen disregard for other travelers, and assumed extended rights regarding the use of airport furniture, I found a very soft couch, laid down and promptly feel into a deep sleep. Soon, Mother woke me up, telling me that Phillip was currently landing. I sat up and marveled at the depth at which I had slept.

Of course, I was in a great deal of pain - I had the wound vac attached to my stomach, and I also had my colostomy bag. I was worried about the flight being too bumpy - as that produced extreme, antagonistic pain in my abdomen.

Phillip soon entered the small lobby and greeted us warmly. Since Phillip and I had spent the entire flight coming up to Pittsburgh talking, and since he was a member of our cycling club, he felt more like a good friend to me rather than a new acquaintance. I was happy to see him. He politely got our belongings onto the small, twin engine Cessna. He then got Mom and I on board and fixed us up with headsets. Mom and I were seated such that we were facing each other across a rather large open space for such a small plane. Because the plane was so small, and the engines made so much noise, the only way to communicate with each other was by using the headsets, which blocked out almost all of the noise.

Soon we were up in the air and flying southwest. I was relived that the takeoff portion of the flight had not generated any accelerations that caused pain in my abdomen. We listened as Phillip got his flight assignments from various flight controllers on the ground. It must have been a shock to Phillip to see me again, after five weeks. I was vastly diminished, physically and I weighed a full fifty pounds less than when he had brought me to Pittsburgh, five weeks earlier. Whatever the cause, once Phillip got his official instructions from the ground controllers; he requested modifications regarding altitude in order to generate the smoothest ride possible for my sake. And he was successful. There was not a single bump on the entire ride - and for a small plane, that is amazing aviationship on Phillip's part. If he saw a bank of clouds ahead, he requested a different altitude, to go either above or below the possible turbulence. Ground controllers granted his every request.

Indeed, what I had feared be a terrible experience, the flight home was totally serene and absolutely spiritual. WE WERE GOING HOME!!! Once I realized that there would be nothing to hurt my wound, Mother and I enjoyed flying through the dusky Ohio River Corridor. As the sun went down, the sky turned various shades of pink, yellow, orange and red all backed by a fantastically deep blue sky behind. Mother later confessed, it was all so beautiful and surreal, she momentarily wondered if we had died and were now on our way to Heaven.

As the sky turned completely red in the days last gasps of light before full night came on, we landed in Somerset/Pulaski County, Kentucky - our home. Beany/Bubba, my stepfather was waiting for us and we unloaded our things. We promptly headed to Mothers house where I was to stay for an unknown period of time. I certainly was unable to care for myself at my own home, as I live alone. So even though I was "home", in Somerset I was not quite in my home yet.

I was so glad for Mother who had been away from home longer than she ever had been in her life. As for me, had it not been for the extreme discomfort I had experienced in Pittsburgh, I would have been miserable, toting around the wound vac, and having to adjust to the colostomy bag, and taking care of that on my own. I was still in a great deal of pain, of course, and I could not walk very far in any given attempt. UPMC (University of Pittsburgh Medical Center) had arranged Lifeline to provide an in-home nurse for me three days a week to assist with my wound care and my colostomy maintenance. As the days went by, some of my strength came back, and I was able to move around a great deal more. My friend Peggy Sherry came by to pick me up on many days, and she'd take me out for a drive or take me to Hobby Lobby. I had to use the walker in the large stores, but I had ceased using it around the house. I didn't need it unless I was to be up on my feet for more than about ten minutes. Eventually, I didn't even need the walker at Hobby Lobby.

Not long after returning home, I went to see my general practitioner (doctor). He had not received medical records from UPMC who had claimed they sent them. He examined my wound and listened to my heart and breathing. Since I had not been cleared to drive, Mother was with me. I felt anxious to explain to the doctor about my procedure and how hopeful I was about its possible success. In the absence of the UPMC medical records, I was going to explain the procedures I had undergone to him, but he interrupted me and said it wasn't necessary for him to know. My Mother then exclaimed that I was CANCER FREE as Dr. Bartlett has explained to us in Pittsburgh. My doctor then proceeded to explain to us how the cancer WOULD eventually come back and cautioned us not to extend ourselves too far in to areas of false hope.

I found my doctor's comments to be objectionable, especially since he had no interest in learning anything about the procedure I had undergone - a new procedure that is seeing some remarkable success in other patients. Of course, my doctor could very well be correct and the cancer has a good chance of returning - we all know that, but I felt as if the doctor was purposefully killing any faith and hope we may have acquired.

His comment basically invalidated my entire trial at Pittsburgh. And that I could not tolerate. I have chosen not to see this doctor any more, and I have replaced him. I hated to do this because he always acted as though he truly cared about me. He treated me with respect, and he provided good medical services for several years. I consider him a friend. But I simply cannot survive this illness without complete and total optimism not only within myself (which is a enormous struggle anyway), but especially in my doctors. If they have opinions that limit the time I have left, I simply do not want to discuss it. I can't. This one conversation I had with my doctor sent me into a tailspin that I still have not totally recovered from.

I stayed at Mom's for nearly four weeks, and came home to my wonderful cat, Max and my garden (which had been cared for by my house co-inhabitance, the Crabtree's.) They live in the downstairs portion of the house. They also checked on Max every day, and my sister Carrie and Peggy stopped by occasionally as well. Even though I spent many afternoons here at my house over the four weeks I was staying with Mom, Max was glad to have me home for nights - and every day. Max and I soon got back into our normal patterns. Things were in good order.

It is now August 20, 2012, and I have procedures (ordered by UPMC) all this week at LCRH. I am very nervous about my CT scan this week. It will show if the cancer is all gone still. Down deep inside, I try to feel if it is - my senses are strong at times. Yet, I don't know. Part of me believes that they will find the cancer again. I still have a lot of pain, and some of the pain is well away from my wound. I suppose, once you've had cancer and cancer treatments, you worry about every little ache and pain. This is common among my fellow "survivors".

It is shocking how physically diminished I am still. I used to be (just a short time ago) one of the most agile persons I knew and now I have great difficulty with even minor obstacles. Because I am unable to resume my normal pre-cancer activities, cycling training, fishing, ginsenging, teaching and other things, I have been sewing a lot and working with leather. I have also been able to continue my project of photographing the year's wildflower blooming as they occur.

As I heal and seek further procedures and treatments for the cancer, I am preparing a collection of my photos to show at the Cedar Creek Vineyards "Art in the Vineyard" event on September 8th. So, I have not been without enjoyable things to do. I feel depressed sometimes, and other times I feel very tired and extremely emotional. I simply do not know what the final outcome will be in this whole ordeal. At times, even though it has been very nearly a year (August 26, 2011) since I learned of the cancer, it is still hard to believe this has happened to me. I don't believe I have had even a single moment of self-pity, and through all of this, I have learned that I am not necessarily afraid to die. I just really don't want to.

I am still in a great deal of pain. In fact, I have not been completely pain free since June 12. When all of this started back in June, I weighed 174 pounds. I got down to 128 pounds and I am now holding at 132. When my friends see me for the first time since the surgeries, some of them are visibly shocked. When I see myself in the mirror, I feel as if I am looking at a mere fraction of what and who I once was. Yet I know my full essence is still very much intact, and unimpacted.

This week, I dread. I dread any medical procedures what so ever. My experiences in Pittsburgh have caused me to fear doctors and procedures. I suppose that is normal.

Days will go on; things regarding this cancer will change. I will get better, or I will get worse. I am alive today, and I will probably survive this week, and this month. In all likelihood, I will survive this year. Beyond that, I simply do not know at this point. I have to live day to day and I have to do the things that are right in front of me.

This is the last installment of my story. I hope you have enjoyed it. In terms of cancer, my friends, please please do not delay to have prevention visits to your doctor. Get those mammograms. Do those colonoscopys. Check out odd and especially long lasting symptoms, no matter how mild. Had I gotten a colonoscopy just one year before I did, when I was having a lot of constipation, I would not facing what I am facing now.

So if I have reasons to have sat and composed such anguishing text and told my horror story, first and foremost is to help people decide to do everything reasonable for early detection of any cancers. Most cancers are now a very curable disease. But it must be caught reasonably early.

I also wanted to write the story in order to process it emotionally for my own mental health. I appreciate very much your interest, your commentary, your prayers and your support. It has lifted me up so much.

Please consider coming to the "Art in The Vineyard" event at Cedar Creek on September 8. I will be there with much of my artwork, most of which has been completed in my recovery. Here is the information on the art show.

God Bless all of you and I will see you on September 8th!

Friday, August 17, 2012

Surgery Two - Part Seven of the Pittsburgh Story


Later that afternoon, they began to prepare me for my second surgery. This one seemed so much different than the first one - I mean the preparations. Man, I did not want to have to endure another surgery, and it seemed as if I would have to start all over in my recover/hospitalization. It seemed that everything I had gone through for the past eighteen days was going to be reset - I'd pretty much be starting over. I mean, with a full-blown surgery, and this one in a vastly weakened state, how could it not be a total reset?

I wanted to be better. I wanted to be able to walk around (that was the goal right in front of me). I desperately wanted to go home, and that was nowhere in sight. Mother was getting visibly exhausted by the day, and you could see it. In fact, I called home - my sister, Carrie and I told her that I thought Mother ought to come home. Carrie politely reminded me what I already knew. Mother would not leave Pittsburgh without me. She would stay the duration, and nobody on Earth could talk her into anything else. Still, I worried about her.

As I wrote before, when we had first arrived in the ICU just after my first surgery on June 12 (It was now June 30), one of the ICU nurses told us that some, if not the majority of patients have psychotic episodes due to all of the IV alarms, lake of sleep, the pain and pain medications and not being able to eat… patients simply "wig out" after a period of time. I had experienced some hallucinations already, and had been caught talking to people who were not there. In my case, I believe this was due mainly to the morphine. I had been in Pittsburgh eighteen days, had undergone one massive surgery, had almost bleed to death and I had been in ICU about 80% of the time I had been in the hospital. The IV alarms were maddening, but I had gotten used to them pretty well. Regardless, I had had strange mental deformations and symptoms of temporary psychosis already.

As the day progressed and I languished in the proposition that I was to have surgery again, I think something popped in my head, and I entered early full-blown psychosis. Everything seemed strange, and out of place. I felt extremely paranoid. Eventually, they came for me, began the sedation they usually administer just before surgery, and they moved me to an operating room. Even though I am reasonably sure this wasn't true, looking around from my bed as they strolled me to the OR, it seemed as though we were moving down an infrequently used, secret corridor. It was jammed with various, unusable medical equipment ready to be discarded… and when we reached the OR, it didn't look like a regular OR. In stead, it looked and seemed like a secret laboratory. Of course, all of this were distortions in my mind. It has simply been to long, too painful and stressful and I had finally gone slightly bonkers.

I remember two surgeons, one of which was Dr. Chaudhury pacing at the foot of my bed. They were waiting for something or somebody, probably Dr. Bartlett. Having Dr. Chaudhury there made me feel more comfortable, but I was still certain that we were in a secret laboratory instead of a legitimate hospital OR, and that the procedure I was about to undergo was also a secret. It was frightening to me, and I had no doubts that I was correct, but what could I do about it? My delusions seemed absolutely real. But I had to accept my fears, not only the real ones associated with a second major surgery within three weeks, but also my unfounded fears springing from the psychoses I was experiencing.

Eventually, Dr. Bartlett arrived, and the other surgeons appeared relieved and anxious to get started on me. The moved me from the regular hospital bed to something that seemed to me to be a very narrow rail… Like an extra wide train track… It was just another distortion in my head. Somebody, I am assuming the anesthesiologist
said "We're going to put you to sleep now", and they certainly did. He didn't no more than get the words out of his mouth, and I was gone.

Moments later which was actually about five hours, I woke in a darkened and quiet room. I was alone, and I could not breath. At first I panicked. I noticed a large machine to my right front, and I thought to myself, I must be on a ventilator. After a couple of very shallow breaths, (The ventilator was breathing for me) I was concerned that it simply was not sufficient respiration to keep me from suffocating. I immediately went into deep meditation to calm myself down - and I realized that no matter how uncomfortable this was, I could endure it. The doctors and nurses saved my life just a few days before from bleeding to death, so they probably would not let me suffocate. . I was in the room alone (ICU) and I could not move to press the nurse call button. Through my meditation, I had to trust that I'd be okay. Each and every moment was a conscience of deliberate act of the next thing.

I did not know how long I'd have to remain in this state - five minutes, five hours or five days, but it was excruciating. Within just a few minutes, two nurses came into the room and I was hoping they were going to remove the ventilator and that is what they intended to do. Apparently, I had awoken to early from the anesthesia and was not suppose to experience the horribly uncomfortable operations of being ventilated.

One of the nurses told me that they were going to remove the tube down my throat and I needed to try to cough as it came up. Slowly it came up, and I did as I was told, and the tube was finally out, and I could breath on my own. RELIEF of this sort was nothing short of a gift from God. I immediately felt total relief. I must have fallen back to sleep because I do not remember anything else of this day. In fact, I remember almost nothing of the next few days in ICU. Four days later, I left ICU and returned to the same room I had had before.

Dr. Chaudhury and Dr. Bartlett came for the postoperative report and I am not sure when that was… probably the same day as the surgery. I don't remember much about it, but I do remember them telling me that it was a good thing that they had opted for the second surgery. Not only were they able to remove the large blood clot and drain the loose blood from my abdomen, but they had discovered that the wound from the first surgery had not been healing properly on the inside. Instead of using staples as before, this time they had used what they called retention sutures. Even though my wound was all the way from my chest bone to my pelvic bone, there were only four, very large sutures. Each one spanned well across my wound and the string material went through a small plastic tube over the top of the incision. Swelling in my belly caused the ends of the sutures (were the strings re-entered my skin) to pull really hard, and they were extremely painful. These four sutures were all that was holding my abdomen closed. The dressing for the wound was very different as well. Twice a day, dampened gauze was basically stuffed into the incision. This was covered with sheets of dry gauze and the procedure was called "wet to dry" dressing. No antiseptic was used. Something about the evaporation of the interior gauze and the pulling of the dampness from the wound by the dry gauze covering kept everything sterile. Mom and I were taught how to redress the wound so we could do it on our own, when we went home. As of this writing, August 17, 2012, I still have the sutures in and I am still redressing parts of the wound, but it is now mainly closed and healed. I will get the sutures out by my Somerset surgeon, Dr. Ritchie next week.

My last week in the hospital was graced by a visit of one of my best friends, Peggy Sherry. She was able to hitch a ride with Phillip Cross during one of his flights on other business. Although I don't remember much about this period of time, I remember Peggy being there and it was very nice. She was also able to give my Mother a much-needed break from caring for me.

The last few days of my hospital stay, and for ten days after being discharged, they changed the "Wet to Dry" dressing to a wound vac. This was an interesting process but a pain in the butt too. It basically worked by stuffing the wound with thick, black foam, then attaching a small diameter plastic tube to the foam. They then covered my entire abdomen with sheets of very sticky clear plastic. On the other end of the tube, they attached a vacuum or "vac" which was about the size of a dictionary. Once turned on, the plastic on my abdomen instantly shriveled up and a vacuum was created under the plastic. Any fluids generated in the wound were removed in this manner.

I had to lug this machine around with me for at least ten days before the wound had healed enough to go back to the "Wet to Dry" method of dressing. Because my abdomen is covered with hair, the daily changing of the foam and plastic was almost pure hell and was so painful. The first time they changed it, I cried. I cried from the pain mind you… Something I had not done even after two surgeries and that painful bleeding episode. The day I no longer had to use the vac was a blessed day.

I was discharged from the hospital a few days later (July 7) and Mother and I went back to our room at the Family House. While I was in considerable pain from the surgeries, at least I was not in the same kind of pain I had during the first stint at the Family House. Before leaving the hospital, they had arranged for me to take a "walker" with me. This helped me get around a great deal. Despite my better condition, life at the Family House was still very challenging. Mom and I shared a small room and we were tripping over each other for nearly a week. But this time I was able to spend more time on the porch and in the basement, which was designed as sort of a living room or den for the patients and their families. . Mom and I were also able to walk 100 or so yards down the street from the Family House every day.

Five days later, on July 12, Mother and I met with Dr. Bartlett and he cleared us to return to Kentucky!! We had already been in contact with our friends pilot, Phillip Cross, the man who had flown me to Pittsburgh a month earlier. Mother and I had been so certain that Dr. Bartlett would allow us to return to Kentucky, we had arranged Phillip to pick us up at Allegany airport that evening. So we happily spent the afternoon packing up our things and preparing to GO HOME!!

(Next up, the flight home, and being home- stay tuned)

Tuesday, August 14, 2012


Having been flat on my back, or slightly elevated in the bed for nearly week, one day I looked up and a young man and a young woman were standing beside my bed. They were from he physical thearipy department. They asked me if I wanted to try to get up and get into the comfortable chair over in the corner of the room. I was hesitant because it figured to be a painful exercise, and when I was leaning toward declination, the therapists indicated how important it would be for me to give it a try, even if I only stayed in the chair for a few minutes. They SAID they'd move me back whenever I wanted. They further pointed out that the doctors had ordered it because they were worried about my lungs filling up with fluid and me coming down with pneumonia. My breathing was already vastly compromised due to the removal of part of my diaphragm and also because of the pain (I could take only shallow drinks of air because it hurt to breath deeply).

I agreed, and the duo got me sat up, spun around with legs hanging over the bed and I was ready to move to the chair. None of this was easy at all and it took a few minutes. Finally, I was ready to go the three feet from the bed to the chair - and through clinched teeth, much pain, but a lot of determination, I made it. It also helped having one physical therapist on each side of me. The chair was comfortable - it reclined but not much, and it had a leg, or foot elevator (or what ever those things are called). In a few minutes, the pain from the exercise subsided and I was, in fact, quite comfortable.

As the day passed, I noticed that the therapists didn't come back for some several hours. When they did, three hours later, I playfully complained to them regarding the abandonment. I told them I was ready to return to the bed, and they said no (also playfully). They said that I was to remain in the chair for five hours!! I exclaimed!!!! "What? Oh no. You told me just a few minutes was all I had to do. It's already been three hours". They said that they had lied in order to get me out of the bed and into the chair… Still in a playful mood, I mumbled "of all the tricks and lies… you two should be ashamed". I smiled.

"My Thompson, do you think you can stay in the chair another couple of hours? It is so much better for your breathing to be upright for as long as you can stand it", the man said kindly. I actually didn't mind especially if it was for my benefit. I certainly didn't want to acquire pneumonia, and I knew that everything I could do now would only shorten the time I had to be in the hospital.


A day or two later, I was so excited when my ex-wife, Katie and my Son, Jonathon (Jonny) arrived. They were a little shocked to see my condition and my weight (I had lost about 20 of the nearly 50 pounds that I would go on to lose). So I still didn't look as sick as they thought I should after such a traumatic procedure. Katie and I, over the years of jointly raising Jonny, had become good friends - more like brother and sister than anything else. We had been divorced sixteen year and while we had our interpersonal difficulties, for the past several years, our relationship had matured into a healthily one, centered on Jonny and his care and well being.

It was so good to see them both. Jonny looked so good. There was a couch in my room, just below that large window overlooking Pittsburgh. I don't know how they did it, but for several days, they gleefully stayed with me for hours upon hours with no visible boredom what so ever.

It was very good that they arrived when they did, because my Mother was wearing out and needed a couple of days off. She took them, and explored at least a few blocks of Pittsburgh.

Over a few days, the three of us talked about many things. Jonny regaled us with interesting stories about his Son, Carter and also funny stories from his job. I have never seen a person more capable of sitting and talking for more hours than Katie - God Bless her. She just does not tire of being with the people she cares about. Occasionally, Jonny would take off and explore the vast expanses of the hospital system, and he'd also wonder the immediate area of Pittsburgh (several blocks). He delighted in seeing the UP campus and all of the neat stores.

By the time they arrived in Pittsburgh, not only was I getting into the chair on a regular basis, but I was beginning to walk a little bit too, and Jonny would sweetly assist me on a 50 to 100 foot walk down the hallway. Katie got photos of it, and I would love to have them. One day, Jonny announced that he had found a place that I would love! He said that it was a beautiful flower garden - and if we could secure a wheelchair, he'd take me there. A little while later, we did exactly that, and it was wonderful being out and away from my room and unit. Katie, Jonny and I sat in the flower garden for some time before returning to my room. I found it so thoughtful that Jonny had wanted to take me to this place. Over his visit, he had never ever shown me so much concern and compassion. I loved it.

Late one quiet evening, Jonny, Katie and I were talking in my dimly lit room. Dr. Bartlett had told us that he would not make rounds but that his surgical assistant, Dr. Chaudray would. I was sitting in the chair; Katie was on the couch and Jonny as lounged on the hospital bed, teenager style - in walked Dr. Bartlett. I had not seen him since the surgery more than a week earlier. It was perfect, because Katie had wanted to meet and talk with him. He stayed with us for at least 45 minutes detailing everything that he had done, and how happy he was with the results. It was very uplifting and very positive. The perfect ending to the day.

Everything seemed to be going okay with my recovery, but I was shocked at how long it was taking for me to bounce back. I was frustrated that I was not getting very strong very fast. For days, every morning I fully expected to just jump out of bed and walk all the way to the nurse's station, but that was not happening and I didn't understand it. I suppose it had to do with the severity of the procedure I had undergone. (Duh). The doctors and nurses were somewhat pleased with my progress, but not entirely. They were concerned about the strength of my lungs and other things. They wanted me to begin to eat more and they wanted me to move around (walk) as much as possible (more than I was). Moving around was just too darn painful still.

On June 19, I received three visitors from Somerset who had private flown with Phillip up to Pittsburgh for the day, just to see me. Peggy Sherry, Jack Evans and Roger Todd Hunter were my visitors. I woke up that morning so excited. They were to arrive at about 11 AM so I wasted no time getting up on my feet and making an attempt to bathe. The experience was a disaster, as I was in almost intolerable pain. I also had an IV pole with had enough stuff hanging from it to medicate every patient on entire floor (or so it seemed). I badly needed to shave and the nurse brought me one cheap, single bladed razor, and I knew that would not get through my weeks beard. Katie happened to have some of her razors with her, but the whiskers were stubborn as hell. My Son, Jonny, in response to my displays of frustration, took the razor from me, had me sit on he toilet, and he shaved my beard. A few minuets later, when I needed to bathe, I experienced the same frustration and again, Jonny came in to help me bathe. He sponged me from head to toe. This is not even something I would be comfortable doing for somebody else. I don't think I have ever felt more loved by my Son! His personality is not typically one of care giving, but his sweet voice and level of concern and compassion touched me deeply. Eventually I was ready for my visitors and it was getting late.

Several years ago, I had a bicycle crash and knocked out several teeth, so know I have a full upper denture. My mother would brush and care for the denture, so she did that morning. With me fully bathed and shaved and back into bed, Mom kept asking if we knew where the tooth past was. Katie, nor me, nor Jonny knew… but she found a tube of something called "paste". She handed it to Jonny (who was deeply engaged in texting at the moment) and asked him if the tube was in fact, toothpaste. Jonny also saw the word paste and nodded his head - affirmative - it says paste. So Mom commenced to wash my denture with vast amounts of the paste. Next, she brought me the toothbrush to have me brush the teeth that were still in my mouth. Upon handing me the brush, and me taking a swipe at my teeth, I gagged and spit and exclaimed "What the hell did you put on that tooth brush?!). Upon closer examination, it was paste that was used to fasten my colostomy bag to my side!! Everybody laughed hysterically except for me. The morning had been just too difficult for me to make fun out of it - besides, I felt as if I would never get all of that thick, foul tasting crap out of my mouth or off my denture. I see it as very funny now. It just was a very difficult morning, and except for the level of care springing from my Son, it had been a horribly difficult morning (or so was my attitude about it).

The last snafu happened when I asked mom for a bottle of air freshener. She tossed me a small can and I aimed it in the air, pulled the trigger and covered myself and my bed with shaving cream.

The visit with my friends was more than delightful. Jack is my cycling teammate and presently one of the strongest men on the team. He and I talked about racing a lot. Peggy is one of my best friends and she and I share a love for art and crafts and nature. Not only is she a good friend, but she is also a great art teacher to me. Roger, the cycling club president is also the pasture of the Word of Faith Church, and he had recently become somewhat of a spiritual advisor to me.

The threesome stayed about an hour and when the wound care nurse came in the room, they left for their flight back to Somerset. I felt so loved.

In a couple more days, Katie and Jonathon had left and with no major complications, the doctors determined that I could be discharged soon, but not to go home to Kentucky but Home, to the Family House. I would remain there for a week or so, until I could see Dr. Bartlett.

As much pain and weakness as I was experiencing, I was vastly unsure how I would manage on my own with Mom in our small room at the Family House. But Home we went - the cab ride was excruciating… every foot of the mile.

(The medical aspect of this story is not even half over. Stay tunned)

TROUBLE!! Part Six

Throughout my hospital stay, I was certain that when I got out, and got to the Family House where Mom and I could care for me, things in terms of my recovery would improve quickly. I figured in a more free, more pleasant environment, I'd start to heal faster. But I was also apprehensive about being able to care for myself until I had gained some strength back.

Several weeks prior to my procedure, I called a life-long friend, a person I call LB and I asked her if she could come visit me while in Pittsburgh. Since she lives in Providence, Rhode Island anyway, I didn't figure it would be a lot of traveling for her. It turned out to be just about as much as mine. But she agreed to come visit over the weekend of June 22. As it turned out, that was perfect - because I got out of the hospital the same day that she arrived, and even though she wasn't expecting it, she gladly jumped in and helped Mom help me get around the House.

I had been in the hospital ten days, and I still was not eating any solid food. I just couldn't get it to go down and nothing tasted good at all. Mom and LB lovingly attempted to get me to eat. Mom had been watching my weight literally crash down all the way to 128 pounds (I weighted 174 twelve days earlier), She had become frightened all over again, this time not about the cancer; not about the surgery but about my weight and the idea that I may starve to death or become so weak that my body would shut down or get ill. She became aggressive regarding my eating, but it didn't do any good. I simply could not eat.

Life at the House for me was nearly hell. It was extremely hard for me to get around. I had so much pain, that I could barely walk a few feet without having to squat or sit in a chair. After walking about ten steps, I noticed my heart rate would jump to about 160 beats per minute - and I felt woozy. Before leaving the hospital, I had imagined walking about the closer blocks of the city, and being able to move around a great deal easier than I had at the hospital. As it turned out, the only entertaining function I could even partly muster was walking down to the front porch and I couldn't always do even that. When I was able to get down to the porch, I had to rob pillows from other chairs in order to sit comfortably. Again, Mother was worried about me and wanted me to walk more than I was. I simply could not always do it.

I had also looked forward to driving around in the bus system visiting local attractions, but that was simply not possible. Most of what I could do is sleep and surf the Internet on my Iphone or laptop computer.

Another complication was the fact that I had severe "night sweats" every time I fell asleep for more than ten minutes. I sweated profusely, totally soaking my sheets, covers and mattress. Getting through the night was a matter of having about five sets of sheets and blankets in reserve. When I could no longer stand the cold, wet bed that I was sleeping in, I would get up in the cold, air conditioned night air, shivering and change my sheets and covers. I'd have to do this about five times. (This continued all the way into the first week back at Somerset (home). Then suddenly, one night, the night sweats simply did not come, and they've stayed away every since.)

Back at the Family House, Mom and LB were great. They did a good job caring for me. LB did a lot of the work, since my Mother had already been doing it for a month. It was a good break for Mom. While I mostly stayed in the room, Mom and LB spent a lot of time together, talking and simply "catching" up. LB is virtually my cousin and Mom's niece. She and I have the same Aunt, Uncle and cousins on one side of the family, but since the relation was by marriage, LB and I are not related. We had been very good friends since high school. She was such a unique girl, hanging out with my buddies and I instead of her own. My friends and I spent our entire time rock climbing, repelling, cave exploring, hiking and backpacking or canoeing. LB fit right in and was accepted as one of the fellows (even though she was and is a very attractive woman). Being so closely related to our family, Mom and LB also had a lifelong relationship. So they had a lot to talk about. They spent a lot of time on that fabulous front porch.

On two different occasions, I had episodes of extreme and debilitating pain, one of which actually caused me to pass out. On that episode, LB was with me in the room, and when I passed out (I wasn't even aware of passing out), LB ran down to the porch to get Mother. I can't explain those pain episodes. At the time, we considered them normal. But looking back, we understand that they were not normal and would eventually lead to great trouble.

Sunday came at the Family House, and LB had to return to Providence that afternoon. It had been so good having her with us, and I think she valued being with us, helping out. I hated to see her go.

The next day, Monday (I had been discharged the previous Friday) we were supposed to see Dr. Bartlett. He could potentially let us go home to Kentucky, but I knew that would not happen, no matter how badly I wanted it to happen. I was too weak and in too much pain. There was no way I could fly home. Early that morning, I told Mom that we needed to call Dr. Bartlett's office and tell them about all of the pain, and get them to take an X-ray prior to our meeting with him. Bartlett's nurse asked us to come in as soon as possible and so we did. My memory of this morning is a little foggy, but I think as we tried to get down stairs to catch the cab, I couldn't make it. So we ended up calling an ambulance I think at the recommendations of the Family House Staff.

Once at the hospital, the X-Ray was taken and then we meet with Dr. Chaudhury. I was shocked when he told me that they were going to re-admit me to the hospital. I was truly shocked and I started crying. I asked him how long I would have to stay, and he said at least a week. The news was so extremely undesired; it instantly forced me back into a meditative mood. Specifically, as described in an earlier installment of this story, I began to accept my condition, and look at only what was directly in front of me and nothing more. At that point, I simply had to get through the day - my first day of my second hospitalization. (Unfortunately, instead of being told we could go home, I was put back in the hospital).

My room this time was on the same floor (post-surgical), and while it was only a couple of doors down from my previous room, it was on the other side of the hall. Instead of that wonderful window and view of Pittsburgh, I simply had a view of a brick building about one hundred feet across a grassy area. The room was also smaller, and I half wondered if the nursing staff was punishing me for something I did during my first stay, or something else. Of course this was not the case and only a symptom of my paranoia. Mother didn't care for the room. It was much smaller and so it's size would affect her more than me. She also did not like the view, nor did I. But I was in an acceptance mood, so I just moved forward minute by minute.

The rest of that day and the next day was medical observation time and IV therapy. I had a few X-rays and a few CT Scans. It was interesting how they conducted the various testings the patients needed. The nurse's station would get an order from my doctor for whatever test, then the station would call a hospital organization called "patient transportation". The medical facility was absolutely enormous, and the various testing centers were usually located some distance from a patients unit. The nurses would prepare a transportation bed just outside my room, get me into it, and I would lie there and wait for a member of the transportation staff to come and get me. Some of the people were wonderful, chatty and pleasant. Others were not. Upon arriving at our destination, in my case, an imaging center where I would have a CT scan, the transporter would hand the staff my medical file and then leave me there. Sometimes I had to lay there in the waiting room for some time. Other patients would be there, most of whom were also inpatients and also in beds like me. An odd feature of being in the hospital - patients rarely talked to each other. Not sure why, but when I'd try to start a conversation with a fellow, it simply wouldn't go anywhere.

After the scans, the imaging center staff would call Patient Transportation, just like my own nursing unit had done for the inbound trip. They'd do this of course, to take me back to my unit. I normally had to wait some time for the transporter to arrive.


During the middle of the night on the second night back in the hospital, I was asleep, and I began to have pain in the left side of my abdomen. As I slowly awoke, I dreamily thought to myself, surely that is not me hurting so terribly. When I became fully awake, I was in excruciating pain. I pushed the nurse call button and all I could muster was "PAIN, PAIN, PAIN". Thankfully, two nurses quickly arrived - two of my favorites. Jason and Lakisha. Jason, on my right side was preparing a syringe while Lakisha was talking to me, attempting to calm me down from the terrible pain.

Suddenly I felt hot wetness on my abdomen and then I heard Lakisha tell Jason that I was bleeding profusely. Obviously, something inside my abdomen had failed and blood started to flow out of my surgical wound. (Now we knew the source of my bouts of pain at the Family House). Not seconds later, this time in a panicky tone of voice, Lakisha said "Oh my gosh, he's bleeding badly!". Jason took a look and saw that within just seconds, my bed had nearly filled with blood. Nervously and shaking, Jason laid the syringe down, picked up the phone and called in an emergency using various codes. I heard the emergency almost instantly come across the hospital intercom. I was frightened and still in horrible, unspeakable pain and Jason had been unable to administer the pain medication.

Within about two minutes, my room filled with about four or five members of an emergency response team. They reformed my room in about ten seconds to a temporary "operating room". As they began to work on me, they took my vital signs in a continual fashion, and my blood pressure was extremely low and falling fast. The emergency team were flashing out overlapping orders just like on TV. I thought to myself, boy JT; you're in trouble now. The pain was like nothing I had ever experienced, and I was fully awake, and without pain relief. I could hear every word the team was saying, I went into my meditation mode. Once in a meditative state, I knew that I might bleed to death, because they kept calling out my blood pressure and it was crashing fast. But even though I was frightened earlier, that had faded to a mere concern. Through my meditation, I was able to realize that this would end. I would not or could not last forever. I took comfort in that. I listened as the lead surgeon called for four units of blood "stat" (I think it was four units) and he also ordered a crash cart. Within just a few minutes, my blood pressure stopped falling, so they prepared me and moved me to the nearest ICU, which happened to be a transplant unit. The staff there joined the hospital emergency staff that had attended to me back in my own room. Ten to fifteen minutes went by as the surgeons worked on me. I have no idea what they were doing. Every since I first started bleeding, I refused to look down at my abdomen.

As the surgeons worked on me, I asked one of them if I could have something for pain relief. He said no, that would be quite impossible. He said, "Mr. Thompson, it is important for you to fight as hard as you can. This will keep your blood pressure from falling faster, and if I give your pain meds, you'd stop resisting, and you'd probably die."

Eventually, some time later, my vital signs stabilized (blood pressure returned to normal) and the emergency staff dusted off and went on their way. I was out of danger. The ICU nurses were now free to administer pain relief, and I settled in for a long stay in ICU.

The hospital called my mother at the Family House at 2:30 AM and even went to pick her up. They let her see me only briefly and then sent her to the waiting room where she stayed for several hours. Mom's role in all of this was very hard on her, and there is no way for me to ever express what her presence meant to my recovery, and even survival.

I languished in the ICU for three days, while the doctors observed me. Then I got a visit from Dr. Chaudhury. He said that they had decided to perform a second surgery. He further said that CT scans indicated that there was a large blood clot in the left side of my abdomen and a pocket of blood. I asked him if it would be in the same wound as the first and he said yes, it would. It was hard for me to imagine what that would be like…. But I'd be asleep, so it would not matter.

I did not want to have to have a second surgery! But like everything else, I had to accept it as my current situation, and move forward with what was directly in front of me.

Tuesday, August 7, 2012

Recovery Begins

Part Four

Over the next few days, things continued pretty much uninterrupted. I lay on my back in a quiet room for several days, and several days had passed before I realized why I was having so much trouble moving my head and looking around. I had a tube going into the side of my neck and I simply had been unaware of it.

I was still in ICU, and the nurses were on 12 hours shifts. I learned quickly, that if a request remained unfilled by 30 minutes before shift change, then it would be hours before it would actually get filled. Even with important things. Some of the ICU nurses were very good and compassionate while others were genuinely frightening. I remember one night my IV alarm starting to go off, and those things are loud…. Sequence of three beeps. Nobody came. Nobody came. Nobody came… and when I used the call button, all I got, which became the normal, was "I'll tell your nurse". I well understood that my nurse had another patient to work with, but in the middle of the night, it just seemed like nurses were nowhere to be found. With the sound of the IV pounding on my head, I thought I was going to go crazy, until finally, after about an hour, a really hateful nurse came in to attend to it.

A few days later, and I am unsure how many days, something must have gone wrong with the tube going down my nose to my stomach. An ICU doctor came in as well as some nurses, and started messing the tube. They told me that it was to drain off acids and other fluids from my stomach because I was not eating anything (I was on a no-food diet so they were feeding me intravenously.) When the doctor touched the tube, it was very uncomfortable, and I could feel it move all the from the interior of my nose down my esophagus to my stomach. The doctor said, "No, this is not good". I also began to taste something acidy. The doctor said, "We are going to have to replace this". I didn't really know what that meant to me, in terms of comfort, but I was certain it wasn't going to be pleasant. Preparing myself in my usual way - looking at only what is in front of me, I said ok. The doctor said that this was going to be somewhat uncomfortable, but I had already assumed that.

I looked down at the end of my bed, and saw my Dad sitting there in a chair.

With the doctor on one side and a nurse on the other, the doctor said, ok, here we go, and he started pulling on the tube. The motion of the tube made me gag which was a big problem since I had a gapping wound from the top to the bottom of my abdomen and the gagging reflex I was sure was going to kill me with pain. Tears welled up in my eyes, not from crying but from the pain.

"Now we are going to replace the tube', the doctor said, and through watery eyes, I nodded, mentally holding myself steady, firmly fastened to only what was in front of me. He said that I was going to need to down try to swallow down on the tube as it went in and on its way to my stomach. As he inserted it into my nostril, I felt it go down the back of my through and then into my esophagus. I tried to swallow, but the gagging response was so strong and the pain in my abdominal wound so great, I ended up raising my hand to grab and hold the doctor's hand back. But then I knew, holding him back, or interfering with him would only delay the torture. Finally the tube reached my stomach, and it took a moment for my system to settle down. Then came the horrible words from the doctor, "We didn't get it into the correct place, so we are going to have to remove it and do it again". As the doctor prepared another tube, I looked at my Father as I was crying, and I pleaded with him to take me out of there… "Please Dad, take me somewhere else", I pleaded, even with the nurse and doctor still hovering directly over me. It was a crazy idea for me to ask Dad to move me out, but I just didn't think I could do that again. Dad sat still and didn't respond to my very stupid request.

The procedure started again, and again I gagged and experienced tortuous pain. But this time it worked. By now I was sobbing - and I remained skeptical that it had worked. This was a fear response that we'd have to do it again. We did not have to do it again.

Right about then, I heard my Mothers voice from behind a curtain asking if anybody knew where Jonathan Thompson was. Dad got up and went to bring her in. Mom later told me, that as Dad walked up to Mom, he started crying, telling her that he had just had to watch the most horrendous thing imaginable. It was all so dramatic, it even affected my Dad. Of course, when Dad walked up to Mom crying, it frightened Mom badly, but Dad quickly told her that I was ok.

As things settled down, my attention returned to my extreme thirst. I had never been so thirsty in my life, and they would not let me drink at all. I was certain that I was going to thirst to death, but when I asked the nurse, she said that I would not - they were giving me IV fluids. It only felt like I was going to thirst to death. All I had to do was convince myself that I was not going to desiccate and die - not an easy task, but with the proper meditation (which I had only off and on), it was feasible. I began to fantasize about large cups of ice water, Gatorade, soft drinks or anything else to drink. I made my Dad promise to have some drinks ready for me when they cleared me to drink in a few days. I just didn’t want them to say, ok you can have liquids now, and there be none available, or that I would have to rely upon the nurses schedule to get it for me.

On the third night, and I will never forget this for as long as I live, in one of my many prayers, I asked God to fill my room with his presence. I asked for the Holy Spirit to fill every empty space, and stay with me throughout the night. Of course, I knew already that he was with me, but saying it - requesting it made me feel better. It was that night that I had many revelations regarding my life.

After a few days, the nurses announced that it was time to move me to a regular room, and I was happy about that. It took several hours for a room to become available on the post-surgical floor. But eventually that luxury came. They prepared me and moved me out of my ICU Room and I got my first look in nearly a week, what was just outside my door. UPMC is a vast complex occupying many city blocks of Pittsburgh. Several hospitals were stung together, and even though I had been in ICU at UPMC Presbyterian Hospital, I was being moved to UPMC Montefiore Hospital. I didn't have to actually leave the facility. There were a series of glass-covered viaducts that lead from one facility to the other. I so much enjoyed the motion, scenery and all the new people coming and going that I did not want the ride to end. It did take a few minutes to get me to my new home. I was moved to the eighth floor, and I had a wonderful few out a large window. I could see much of the city although I had no idea what part of the city I was looking at as my since of orientation had never been established, and I had a great view of one of the many rivers in Pittsburgh. When I asked nurses and staff if they had any idea what compass direction that was out the window, nobody knew. I never did figure it out.

In right down town Pittsburgh, the Allegany and the Monongahela Rivers joined to form the head of the Ohio. I believe that the river I could see out of my window was the Monongahela.

The tube from my neck had been removed as well as the tube down my nose. I was still hosed and wired up like a non-human contraption, but at least I could move my head and I could even sit up a little bit (raise the elevation of the bed).

Over the week, many get-well cards had come as well as flower and Mother neatly arranged them on the window seal. It looked nice. Things were looking up, and for the first time I turned on the TV and watched a little of the local news. Up till them, I was content with my new smart phone. Just a few days before my surgery, I upgraded to a smart, and exploring its capabilities was a great pass time for me.

My Dad had already left town, so Mother was there still to care for me. She and I worked out our hours of visitation. Some hours were better for me (some parts of the day were more depressing). Other hours were better for her. But she was able to take the shuttle every day from the House to the hospital and back. On her forays out in the hospital, she found places to eat, gift shops and other nice amenities. When she was in my room, she had either her Ipad or her knitting - and she'd quietly sit on a couch under the large window, keeping herself sufficiently occupied. I appreciated the hours and hours she spent with me, although there came a time when she had to take a couple of days off. When my Son and Ex-wife arrived, that was perfect.

Monday, August 6, 2012

The Battle Begins


As requested, Mom and I arrived at UPMC Presbyterian at 5:30 AM and after registration, they took us directly to surgery prep. I only had a few things with me, knowing that Mom could bring anything else I might need from the House whenever I needed it.

I undressed got into a gown and my nurse promptly came in to perform all of her tasks, which were many. All of my nurses and all of my doctors were my army and we were all interlocked and focused upon one task; to find the cancer, cut it out and kill it. HIPEC would be used after the cutting as a total cleansing of the battlefield (which was in my abdomen) - the final procedure sort analogous to a nuclear bomb. Scorched Earth was our battle plan.

After starting an IV (one of many more to come) I think the pre-op nurse gave me a mild sedative because I began to slowly loose my ability to remember the sequence of events. I remember being moved from one bed to another, being moved around in the facility and I remember there being virtually no time lag - no waiting for the next step. Eventually, somewhere along the way, I lost totally consciences.

Some unknown time (to me) later, I woke up in a small room filled with many people. I had no idea how much time had passed, but it seemed as it the nurse had just put in my IV just moments before. In reality, nearly 10 hours had passed.

Dr. Bartlett was standing there in front of my mother and my dad and Beany (my step dad). Obviously, I was just barely conscience, but I can remember my mother saying to me that there had been a lot more cancer than had shown on he May CT Scan. She went on to say through a smiling face that they had gotten it all out, and that the HIPEC procedure had gone well. She seemed happy about the results, but I was concerned regarding the amount of cancer they had found. It had really been on the move.

Since they had to remove a portion of my colon and my rectum, they had to install an ostomy bag on my side (a colon bypass), which is to be reversed in a few months.

Mother recounted they had to remove the top portion of my liver, 25% of my diaphragm, and another portion of my colon. They removed many perennial seeds from throughout my abdomen and they also had to remove a portion of the peritoneal lining itself. They found cancer in my pelvic area and had to remove part of my rectum. They had cut me from the bottom of my rib cage all the way to my pelvic bone. Lying there in front of all of my family, I could not move at all. I didn't know it, but I had tube in my neck, tubes down my throat, down my nose and many other places as well. I had IV's all over and I was in pain that can only be described as indescribable.

I don't recall my family leaving, but they did, probably when I slipped back into sleep. The next thing I remember is pleading with my ICU nurse to put me to sleep, that the pain was too horrendous. He was a matter-of-fact kind of fellow, and he calmly said no. I keep moving my left hand I think because of some kind of pain, and the nurse firmly told me that if I didn't lay still and stop moving my hand, he'd have to tie me down. THE PAIN I WAS IN WAS UNSPEAKABLE, INDESCRIBABL AND BROUGHT FORTH THE IDEA, I'D RATHER BE ASLEEP OR EVEN DEAD.

Of course I was in Intensive Care and there was one nurse for every two patients. The doors and walls of he room were fully glass, and I laid there in full view of anybody who might walk by. There was a TV but I didn't have the heart to turn it on. I just lay there in pain that was going to change my life. I felt a sense of depression that could kill, but I've dealt with severe depresses all my life and I had "tools" for that. Mainly, I kept the room as quiet as possible. No TV, radio, music - no stimulation at all. For some reason, this has always allowed me to sort-of "hibernate" through my depression, and it worked now too. So now all of my friends know why I can be so hard to reach… because the best medicine for my depression is a "sterile" environment - no stimulation, which always makes my depression worse and sometimes even intolerable.

I noticed a clock on the wall. I'd doze a little bit thinking that I had slept several hours, when in fact only 10 minutes had passed. Oh my Gosh, I thought, I may be here four weeks, and with time passing this slowing, I was sure to go nuts. (Which I eventually did - discussed latter). Ever so often, one of the IV bags would empty, crimp or otherwise need attention from the nurse and it sent off this horribly loud alarm. Nurses came in, sometimes quickly, sometimes very slowly to restart the IV. And sometimes, more than one would go off at a time. I did not sleep for more than a few minutes for a couple of weeks, and combine that with the morphine I was taking and then all of he alarms, I was sure to loose my mind. In fact, one of the ICU nurses said that it was quite common for patients to have psychotic breakdowns due to all of these circumstances.

Over the next while, I relearned one of the best lessons I think I have ever learned. It was in response to my condition of helplessness and total incapacitation. I learned to view the interior of my room as my "world". This was it and this was all I had to deal with. My job was to lay still and recover - no matter how slowly and no matter how long it took. This was all I had to do. I used this in bicycle races as well. During time trials, I would look as far down the road as I could see, and I would say, that, and only that, is my current job. Nothing else mattered at this moment. Another thing that helped a lot had everything to do with the oxygen I was on. I was told, that when the pain got so bad, I could breath through my nose and exhale through my mouth. I would then relax my fingers, then hands, arms neck and head, back, abdomen, legs and it seems as if I entered a Zen world and the pain and circumstances became more tolerable.

At about 4 AM the next morning, I declared that it was time to wake up (even though I had ever really gone to sleep. The declaration seemed to give some structure to the infinitesimally slow nature at which time was passing. As would be the case for many days, I would simply lie in the hospital bed and fully accept my situation - extreme pain, and maddeningly slow movement of the clock.

In all of this time, I contemplated the human condition regarding pain. I struggled to understand why human beings had to suffer so much pain. Incidentally, I was told that there was only one or two procedures more painful than mine; lung transplant being one. I thought, how often do people have to endure this kind of pain? And what keeps them in a desire to continue living? I no longer hunt, but I thought about all of the animals I had killed in my lifetime. I even thought about all the fish I had hook in the mouth (ouch!). I decreed right there in my morphine influenced philosophizing that I would no longer fish (one of my favorite pass times).

Speaking of the morphine, I eventually warmed up to the use of it. They had given me a plunger type device and I was to push the button when I felt too much pain. I could push the button indefinitely every eight minutes. Interestingly, it was illegal for anybody else to push the button for me; the idea being that I would pass out before I would overdose, making overdose impossible, so long as nobody was pushing the button while I was passed out I could not overdose. At first, I was hesitant to push the button because I truly didn't like the way it made me feel. But with the pain I had, the button and me became friends. If I pushed it 3 to 4 times every eight minutes (24 to 32 minutes of morphine) I became at least comfortable. Falling asleep was the worst - not able to push the button, if I slept more than 30 minutes I would wake in excruciating pain. And it would take 3 or 4 hits one every eight minutes for the pain to ease.

Since UPMC was a teaching hospital at about 6:30 AM the second morning, an army of about 6 interns filed into my room an took position all the way around my bed. The leader seamed to be this young Chinese lady who was very nice. She would look at my wound, and redress it and check it for infection. The other young doctors mainly watched, but many of them also jumped in to answer any one of my many questions. The intern squad came every day at 6:30 AM, and I began to look quite forward to their visit. One young woman helped change the dressing on my wound, and she was so gentle, I barely felt her work. It's funny, and the young doctors laughed when I accused them of it, but as any one of them was working on my wound, several of the others would talk to me - ask question or what not. Of course this was designed to distract me. No, it is easy to say that my visits from the interns was the highlight of my day. And they also came late at night also- about 10:30 PM.

The interns had a lot of power over my care. I believe that the main physician staff wanted them to take charge of my care, but if anything got complicated, then Chaudhury or Bartlett would redirect them. I liked the arrangement.

Another pleasant and frequent visitor was Dr. Chaudhury; a seemingly young man with the kindest demeanor you could ask for in an attending physician. He was soft spoken, but when he spoke, you had a tendency to cling to his every word. Dr. Chaudhury was and assistantant surgeon to Dr. Bartlett, my main surgeon. Instead of Dr. Bartlett making daily rounds, Dr. Chaudhury did this duty. Dr. Bartlett explained this to us at the onset.

For the duration of my hospital stay, my room was a virtual buzz of activity. Along with the above described caregivers, others would come as well. Social workers, wound care specialists to teach me how to care for myself when I was discharged, ostomy bag experts who came to show me how to change and maintain things, nutritionists, physical therapists, repertory therapists, and of course people from the business offices.

My Mother and Father were in Pittsburgh and they were staying at the "House". They stayed with me virtually all the time, shifting out their efforts. It was nice having them there, and they could take a shuttle from the House to the hospital, which ran every thirty minutes. I loved seeing them united behind me. They've gotten along very well for years, but now they were sharing something only parents of a child can experience…. The same exact emotions and concerns.

The second day was actually the first day of recovery. I spend the day, lying flat on my back in ICU. There would be many many more days.

Friday, August 3, 2012


Back home and with eleven days to transferee my life up to Pittsburgh probably for most of the summer, again I didn't aggressively jump right in and begin to organize for the long displacement and long convalescences period that was to come with the trip. One of my favorite things to do since cancer is to have a family member drive me around the county looking at the county side. My sister Carrie, Mom, and Peggy Sherry all chip in and provide the luxury for me.

One evening, Mom and I drove out and met the bicycling club as they were preparing for a bike ride. It was good to see everybody. Just as we were leaving, my friend and "brother", Jonathan Arnett rode his bike up to my opened car window and matter-of-factly stated that he had access to an airplane. He said that he would be willing to fly my family and me to Pittsburgh whenever needed. Obviously, this would elevate a great deal of aggregation. Upon hearing his offer, I was certain that we would not take him up on it - it just seemed like far much to ask. We thanked him and ended our outing on that gracious offer and at beautiful dusk.

But as the days ticked by, it was hard for me to imagine taking either an airline to Pittsburgh for the reasons I had to go, or drive either, so I thought more about Jonathan's offer to private fly me up there. I wanted to go to Pittsburgh two days before the surgery, which was a Sunday, and I wanted to go alone - at least in advance of the procedure. I ended up taking Jonathan up on his offer and wow, did it ever work out well. The man who flies's for Jonathan's company; Phillip Cross is one heck of a great pilot. He is also a good man and very easy to admire and respect.

As the days counted down, and I got my "necessaries" bundled up, the Sunday Morning finally came for me to leave. My Mother and my Step Father, Beany (Bubba) Sparks picked me up at my house to take me the four or five miles down to the regional airport. In relatively good health, I was able to manage all of my luggage, but Mom and Beany started to jump in to help anyway. I will never forget, as I was coming down my stairs, allow my suitcase to roll down in front of me, kirthunk, kirthunk… at each step, I became overwhelmed regarding the reasons for my current set of activities (I had actually packed my bags, and I was volunteering to board travel to physical Hell). Thumping down my stairs, I began to tear up, then cry/sob and I began to hyperventilate and nearly instantly passed out on my stairs and the suitcase went crashing down about six steps nearly taking my pour Mother out along the way. Thankfully she was facing me at the time. I laid on the stairs, hyperventilating and only about 5% conscience. Mother rushed up to me. Chopped between several short and shallow breaths, I explained to her that I wasn't sure I could go through with it. She began to cry with me and told me that I had too; that without it, I would not live much longer. Eventually, I gathered my composure and we continued moving my things.

The incident upset my mother so badly, she had to go around the back of my house and finish off a good cry and I am sure, say some prayers as well.

Panic attacks and neurotic breakdowns scratched off the list, we drove the short distance to the local airport where Phillip was waiting, literally beside his plane (A large Cessna with two engines and either five or six passenger seats. Phillip quickly took my things, stowed them away on the plane and then invited me to join him in the cockpit for the flight! I was frightened to do so, and normally I would have declined such perfect view of the activities keeping us airborne, but compared to what I was about to go through, my newfound brevity won through and I took the co-pilots chair. And it completely removed the troubles from my mind.

Phillip did a fine job going over the airplane and flight plan with me - just like a regular airline stewardess. When I got into my co-pilots chair, Phillip showed me the things not to touch, peddles, steering, buttons - etc. He then took his position and began his mandatory checklists and review of the flight plan. The flight would take us from Somerset to Pittsburgh, Allegany County Airport in about an hour and a half. Phillip pointed out an interesting fact; the airstrip at Somerset was lined up nearly perfectly upon the Allegany County airport just outside of Pittsburgh. So he laughingly said that all we had to do is fly a straight line.

Phillip gave me a headset to ware during the flight so I could talk to him and also listen to his communications with various controllers on the ground.

In just a few moments, we were ready to torque up the twin engines and we taxied to our take off point. Turning a few more knobs and pushing a few more buttons, I noticed Phillip grab the throttle and began to pull it back. Watching him perform this task gave me anxiety, and the engines began to roar beyond what I was expecting. Releasing the plane to "do its stuff", it accelerated down the runway, until eventually, the craft left the ground. We were on our way - to what, who knew, but I was going to enjoy the flight no matter what.

We climbed fast, and looking out of the side window, I tried to identify ground features. Higher and higher we went until we were about the thin veneer of clouds. The chatter between Phillip and various ground controllers was very interesting. It became apparent that our call sign was Hotel-Whisky.

As we approached Allegany airport, Phillip got his landing assignments, flew around the place, lined up on he runway, and made a prefect landing. I could even tell when the plane touched down. Humorously, Phillip said, "Well, I've successfully landed twice now"! Funny.

From the airport, Phillip had a car arranged to drive me into Pittsburgh were I was to stay again at the Family House - a place for Patients and their caregivers. Phillip helped me unload my luggage and left to return to Somerset in an attempt to beat some incoming weather.


I went into the Family House and got my room, and unpacked. I was a little lonely, but I had desired to arrive two days in advance of the procedure for a couple of reasons. I wanted to have a day, or at least an afternoon to familiarize with Pittsburgh and relax upon the new fighting ground. The next day, the day before the surgery was to be a preparatory day (colon cleanse).

As soon as I had gotten to my room, I laid down and slept for a few hours. Upon waking up, I unpacked my cloths and things, and then went out (on foot) to find some dinner and a beer. That was nice. The architecture on the UP campus is incredible, and there is one stone tower called the Tower of Knowledge. As I wondered the vast lawns surrounded the huge stone tower, and I noticed two elder ladies with binoculars trained intently on the top of the high tower. I casually asked, "is there somebody up there", thinking maybe I was going to get to see my first BASE jumper.
"We are bird watching", of the women, said shortly.
"Oh, I love birds", I injected.
One of the women annoyingly lowered her looking glasses, and said
"We are studying Urban Penguin Falcons", she said, replacing her binoculars over her eyes.
"Are you all from a local birding club?" I asked, effectively killing all hints of my welcome in their presents. No reply came. So I bid them fair well and took up my way.

Back at the Family House (hence forth called "Home") I wrote in my journal.

The Family House had a wonderfully large front porch, fully furnished where residents could sit and read, or just watch people passing by. I had brought some sewing (I like to make blankets) so I sat out there and sewed a little bit. At sundown, I wanted to go sit at a bar, and drink a couple of beers, so the ladies in the reception room of the House told me where to go. It was just down the street. I took my journal and wrote in right at the bar and drank the last couple of beers for an unknown time. I love the inhabitants of such places whom are mostly regulars from the local blocks. Everybody knew everybody, and even though some people would consider the place to be too rough, I've always loved those places and I have never once had any trouble. I have always been accepted and I have always had wonderful conversations with the other patrons.

Upon arriving home, I quickly feel asleep for the evening.

The next day, Monday, Mother and Beany arrived at about 4 PM, having driven 450 miles. By the time they arrived, it was time for me to start my colon prep, and I won't go into the details of that process except to say it involves several hours of remaining in the proximity of a toilet. Along with the prep activity came the anxiety of my purposes of being in Pittsburgh. The process focused my attention back upon the battle to come, which I had been about to totally eliminate from my mind since I boarded the flight with Phillip the day before.

By ten PM it seemed as though the prep was done, so I joined Mother and Beany on the front porch for a while.

The hospital wanted us to arrive at the facility at 5:30 AM to begin the procedures. Despite my trepidations over the things to come the next morning, I slept fairly well.

To be continued

Part 3