| Last Modified: November 1, 2001
The author has now incorporated his story into a book which should be available shortly.
Title: "Life is Good, except for this Cancer."
Alternatively, you may call the author at (919)361-2607 or email him at firstname.lastname@example.org
I've told this story so many times that I figured it was worth the effort to put it down on paper. This story was written with the intention of putting some personality and humor into an often dark and impersonal event- living and coping with cancer. It's not meant to scare or provoke sympathy, but rather to educate and entertain.
I hope you like it.
"There are two ways of meeting difficulties. You alter the difficulties or you alter yourself to meet them."
I guess the first time I found out that I had cancer was in the procedure room at Beth Israel Hospital where my gastroenterologist, Dr. R was set to perform an endoscopy on me. I had just come down from ultrasound, where another doctor studied my liver with the help of an eager new resident. He called Dr. R, who told me.
"We've received the results of your ultrasound, and you have tumors on your liver", Dr. R stated in a concerned tone. "It's Cancer."
"Well, can you treat it?", I asked as calmly as if I were asking for seconds at the dinner table.
"We're going to treat it", he replied. "But I'd still like to go ahead with this procedure."
The nurse then asked me to open wide, and generously coated my throat with tasty Novocain. Then Dr. R followed by asking me to clamp down on this plastic device as he swiftly and artfully stuck the endoscope down my throat.
Compared with the previous set of procedures, the endoscopy was not as bad as I feared, and was over before I knew it. But Dr. R wanted to send me back up to ultrasound so that they could mark a good area for the liver biopsy he would perform the next day. So I finished the day and returned home with my new trophy: A black "X" on my right hand side ribcage marked in magic marker - the symbol of the beginning of my year-long education in life.
The liver biopsy also looked more threatening than it actually was. The procedure was simple. I would hold my breath while Dr. R quickly and efficiently shot a foot long needle through the magic marker target and into my liver, extracting a tiny sample. It was rather painless, but I still had to lay in the recovery room on my right side for an hour or two to ensure there was no internal bleeding.
The diagnosis of cancer, surprisingly enough, hardly phased me. Maybe, because of the regimen of gastrointestinal tests I had been put through the previous week, I was happy to finally have an answer. I didn't deny it, for I already knew I was pretty sick, and cancer seemed as logical an answer as anything else. What I wanted more than anything else was to begin treatment of any kind so that I could put an end to the 6+ bathrooms trips a day, the mysterious back and side pains, and these horrid tests! Looking back on it all now, it's hard to believe I wasn't more scared or depressed than I was. Hell knows my wife and mother were scared to death, but I seemed oblivious to the fact of what was actually ahead of me.
It was during my first visit to the chemotherapy unit that I finally came to the self-realization that I had cancer. First of all, right off the bat I thought that I stuck out like a sore thumb. Gathered around me was a roomful of mostly older folks, in various stages of poor health, receiving various forms of treatment. Here I was, a healthy 28 year old who had always kept himself in perfect health. Then it hit me. That's how I always thought of myself. But here I was, weighing in at a hefty 130 pounds, skinny as a rail, freshly diagnosed with cancer. I finally saw myself and the predicament I was in, and went home and cried.
A Trail of CluesIt's interesting to follow the trail of clues back to when I first started feeling the vague symptoms which would eventually lead to the cancer diagnosis. It all started with the weird side pains I first experienced while visiting our friends Greg & Karyn in New Jersey in Late October 1993. The pains felt like lingering cramps you usually get while jogging, but these were more persistent, and didn't go away.
After returning to Boston, the side pains would come and go, but I started to develop lower back aches as well. Since I worked out often, I figured it was something I was doing at the gym, so I tried cutting back on my workouts. When the pain persisted, I finally succumbed to seeing the doctor. He also agreed that it probably was due to working out, and suggested that I continue to take Advil if it helped with the pain.
It was now December, and both the side and back pains continued to confound me. The side pains now grew stronger in both duration and frequency, often causing restless and sleepless nights. Even Paul Jr. was short on answers as to possible causes, but as of yet, the pains were just that: Pains and annoyances, and not cause for great alarm.
Then it happened. Christmas Eve, 1993. As if announcing its presence to all family members gathered at home, my stomach erupted in pain that even my daily diet of tabasco could not be held responsible for. It started as a lower stomach ache, but quickly grew to a full-grown growl. It got to the point where I could not even sit still because of the pain, and the family medical committee decided it was best to pay a visit to the local Beth Israel Hospital Emergency room. Not exactly what I had listed on my Christmas list!
With Pat at my side for the ride and support, I was put through the normal emergency room inquiry procedures known to all of us who have ever visited such a place. Have I ever had this type of pain before? Yes, about 6 months earlier, but that was caused by the effect of aspirin on an empty stomach after a night of margaritas. Did I eat anything unusual yesterday? No. Did I eat any seafood? No. Have you vomited anything today? Yes, everything, including the Maalox. Have you tried eating anything? Yes, that came up too. Do you have a history of kidney stones? No. Have you had your appendix taken out? No. Scratching their heads in unison, the eager doctors decided to run some tests and take some x-rays to see if they could find anything. Of course they found nothing, and were further perplexed as this young guy continued to gyrate uncontrollably on the hospital gurney.
A number of hours and bags of saline juice later, my gyrations had subsided to a dull roar. The doctors seemed relieved (as they never found out the problem, and hate to admit they have no idea) that I was improving, and sent me home with the motherly advice to take it easy, and try starting with clear liquids in the morning. Thanks for the advice guys!
Needless to say, the holidays were not very joyous for me as I struggled to aquiant myself with solid food once again. By the time New Year?s rolled around, a new symptom had reared (no pun intended) its ugly head: Diarrhea. After almost a week with no relief, I once again contacted my primary care physician (whom I never really thought cared too much about finding out what was wrong, or thought that anything was ever really wrong to begin with) who suggested I come in for some tests. Of course the tests revealed nothing more than the fact I had diarrhea, and was losing weight because of it. He magically suggested that I give it a couple weeks to run its course, for he would hate to put me through the GI tests if they were not necessary. It sounded logical enough at the time, so I went home and back to the bathroom.
One week later, tens pounds lighter.
Two weeks and twenty pounds later, I was back on the phone with the doctor. As I was to leave in a week on a business trip to Mexico City, I was concerned now not about my health, but whether or not I would be able to make the trip. He magically suggested that it was time to consult a gastroentologist, and I quickly made an appointment to see Dr. R later that week.
Let the games begin!
It immediately became apparent that Dr. R was the exact opposite of Dr. D, my primary care physician. First, he genuinely seemed to care about me, and secondly, he seemed determined to get to the bottom of what was troubling me. I could finally see the last two months of agony coming to an end! We scheduled an appointment for an upper GI for the following week.
For those of you who have never been lucky enough to experience an upper GI, don't worry, I will tell you all about it. (The upper GI is actually the most tolerable of the GI tests.) First of all, the day before the exam, you need to purge your system of all solid foods (no problem here), and refrain from eating any solid food for 24 hours. Then, before the exam, you must drink several pints of a tasty, thick, white barium drink. Then you sit and wait while the barium makes its way into your system before they begin taking x-rays.
Finally, the results came in, and of course, they showed nothing out of the ordinary. By this time, my weight had dropped another five pounds.
Time for the colonoscopy. Same setup as before. Purge the system, no eating, lose some more weight. Only this time the procedure was anything but painless, as the doctor insisted it would be. The colonoscopy involves sending an endoscope in through the backside, up through the intestines, to look for any problems. In my case, the doctor encountered a sharp turn in my tubes, and in an effort to round the corner caused shooting pain that is understandable only by those who have survived this procedure. After numerous Tylenol 3, I was finally able to relax enough to go home. When the results came in, I was not surprised to hear they revealed nothing, except the fact that I had dropped a few more pounds.
Because of that funny sharp curve in my intestines, the doctor was unable to see the entire path necessary to complete the full procedure. So onward to the lower GI.
The lower GI is one of the most uncomfortable procedures one can ever go through. Again it involves the same setup, with extra barium juice. Only this time the barium juice is infused via a tube from the backside. Then a balloon is inserted, and you are asked to roll over and lay in many different positions while the doctor inflates the balloon to highlight certain areas on the x-ray. Then he tilts the exam table up and down, back and forth. All the while a nurse and assistant are at your side to comfort and support you--right! Try staying comfortable with a bowel full of barium and a tube up your XXX!
Again I waited for the results, and again the game continued - nothing abnormal. Dr. R said he had one more test up his sleeve - the endoscopy - where the endoscope is stuck down your throat to take a good look at things. By this time that sounded like a walk in the park, so I prepped myself for yet another appointment at the hospital. Say goodbye to a few more pounds in the process.
This brings us up to the moment of truth. Before the endoscopy, Dr. R also wanted an ultrasound of my liver. No prep involved in this procedure, so weight loss was held to a minimum. Little did I know that the next day would change my life forever.
The DiagnosisDr. R called later that afternoon after the liver biopsy to tell us the results of the tests. Initially, the cancer was thought to be adenocarcinoma, the worst form of carcinoid cancer. But with another doctor in the family, a second test was requested by Paul, who doubted the results of the first test. Lucky for us all, the second test showed the cancer to be ordinary carcinoid, not the adenocarcinoid previously suspected. While the adenocarcinoid cancer is not only rare, but often untreatable, the carcinoid is somewhat treatable. It was finally out on the table what we were dealing with, and the next step was to seek treatment as soon as possible.
Dr. R recommended Dr. L of the Oncology department at Beth Israel. An appointment was made, and we all prepared ourselves for the fateful meeting. Surprisingly, the full impact of what we were dealing with had still not registered with me. In my mind I was still treating the illness as a short term problem that would be over with soon.
ChemotherapyMy first contact with the chemotherapy unit was during our initial visit with Dr. L. Melissa, Mom and I came to the meeting with the same questions and fears. How do we treat this disease? How does this disease respond to treatment? What will happen to me physically? How long will it take? Will I be admitted to the hospital? How many other people like me have you dealt with, and how have they done? The main concern on all of our minds was how successful this treatment was going to be.
I have to admit, the initial answers to our questions painted a fuzzy picture of what to expect going forward. First off, we were told the success rate for patients with carcinoid cancer receiving chemotherapy was around 50%. It was impossible to guess how I was going to respond to the treatment without going ahead and trying it out. The fact that I was young and in good health before this affair weighed positively in my favor.
The chemotherapy treatment took place at the chemotherapy clinic, where I spent 2-3 hours a day, for five straight days, once every month. The treatment room is U-shaped, and has chairs for 12 or so people at a time. You have two main nurses assigned to you, which allows you to get to know them and feel comfortable with them. Nancy and Eileen immediately put me at ease and made me feel as comfortable and relaxed as one could be under the circumstances.
The actual procedure involved is rather painless. First, you learn to enjoy needles! You are hooked up to an I.V. tube, which drips an anti-nausea medicine first, then the chemicals. To help pass the time, I brought my CD-Player, or a book, or simply took a nap. The entire procedure takes less than three hours, but while you were in the clinic it felt like eternity. You could not escape the reality at hand. People were sick here, some more so than others, and some of these people were not going to win this battle. Some had breast cancer, some prostate cancer, some with AIDS, some with cancer I did not even want to know about. It was difficult to avoid thinking about where you stood in relation to everybody else. As I would later learn, the mental drains of chemotherapy were just as taxing as the physical aspects.
Here's what I wrote in my diary on April 18th, 1994, regarding the chemo treatments:
"Just finished 3rd round of chemo, and this one was a douzy. They up'd the dose 10%, and I felt it when I got home. The whole week was just laying around, feeling very tired. The weekend was just as bad, but now, Monday morning, I feel things slowly returning to normal. I must say it is a bit of a bummer with chemo, you think you are making all of this progress, and bang!"
I was diagnosed on February 1st, 1994, and began treatment on February 10th. Weight 135 lbs.
The Road to Recovery is long, uphill, curvy, and filled with potholes
First, the physical pain
"Release me from this body
Taking a shower now required a bit more concentration than it used to. Not only was my balance not too good, my legs were weakened to the point of informing me to hurry up so that they could get a rest. Bending down to wash the toes was out of the question!
Getting dressed also became an interesting chore. The muscle atrophy meant that the muscles did not want to be as limber as they used to. To put on a pair of pants, I had to step one leg inside, hold onto something so as to not fall over, and manually lift the other leg up and into the other pant leg. Then I could slowly make my way into them. More than once I lost my balance and fell to the floor, tackled by a pair of jeans!
Next, the trip downstairs for breakfast. Stairs had never seemed so long and steep before! Now, I went down one at a time with a firm grasp on the handrail. This is what it must be like when your are 75, I thought. The trip back upstairs was formidable enough to make you want to stay in bed.
Next stop, the couch. Usually comfortable and inviting, my old friend had become as comfortable as an airplane seat. If I spent too much time laying on one side, my pelvis would remind me that I no longer had any muscle there. So it was a constant rotation - left side, right side.
If the day required me to be outside of the house, a new set of challenges arose. I could no longer stand in line for very long, for the bones would ache and remind me I was now 75 years old, not 28. I remember going out for coffee in Coolidge Corner with Melissa, and complaining about the half block walk from the car to the store. And the pace could now be classified as a slow crawl. Never before did I have to tell Melissa to slow down.
Did I forget to mention the Sandostatin injections? Well, what a daily treat! It turns out that this medicine helps stop the diarrhea while at the same time seems to help shrink the tumors! All I had to do was get an injection 3 times a day. At first, nurse Mom administered the shots, usually in the upper arm, where there was not much muscle mass. She would greet me in the morning, in the afternoon, and in the evening with my special treat. As I grew stronger, I would administer the shots myself, this time in the stomach, where there was soft tissue to ease the blow. The whole process was not that bad, but it was another small pain in the xxx. How long would I have to keep doing this?
Then there was the most dreaded time of all - bedtime. Usually cherished, bedtime was now a contest pitting me against Mr. Sandman, with me usually on the losing end. Not only was getting comfortable and falling asleep a chore, but staying that way for long a complete impossibility. The dreadful sidepains of the previous months had been replaced by the lower back pains and their friends the headaches, arm aches, leg aches, pelvis aches, and a very unusual one, the arch of the foot ache. You know when you are lying on your back, the covers weigh down on your upward-turned feet? That weight now caused painful cramps in my size 13's, adding to the bedtime misery.
I tried a variety of painkillers and sleep enhancers with varied success. Night-time Tylenol worked for a couple of hours. Tylenol 3 would last a bit longer. A prescription sleeping pill prescribed by Dr. L did about the same - offer a couple hours of escape from the bedtime devils. But it came to the point where I was almost going to lose my mind. I knew now how insomniacs felt. The constant lingering pain could not be suppressed enough to allow for relaxation. It was time for drastic measures.
The next visit to Dr. L promised relief. A new candy guaranteed to take me on a trip to never never land.
MethadoneUsed by doctors to help heroin addicts ween themselves from the drug, Methadone is the big daddy of painkillers. It's long lasting duration was what we were after, but I got more than I bargained for.
The relaxation of both mind and body became evident immediately. For the first time in months I could sleep over four hours at a time. I could lay on the couch and enjoy it. I could handle a walk for a block or two. I felt as relaxed and comfortable as I could hope for considering all things I was going through. But my mind was also playing sneaky little tricks on me.
While I felt totally cognisant, coherent, and together in speech and thought inside, my appearance was anything but that to the outsider. This is all coming from what others have told me, because, again, I thought I was totally with it. Speech became slow and wandering, often switching subjects without reason. Physical actions were slowed and delayed. I could never figure out why my chemo nurse always asked if I was driving home today. Now I realize it was so that she could remember to stay off the road! I was told on one outing at a parking garage, I stopped quite a few feet past the ticket booth. Luckily, a dented fender is the only scare left by the methadone bandit!
And the dreams!! More like hallucinations, I would have what I called "mini-dreams" throughout the day. Watching TV, your mind would go on a quick, minute or two excursion to never never land and back, without your realizing what had happened, or that you were even dreaming at all. The dreams became a part of reality, which was actually curious and scary at the same time. It wasn't until Mom was recovering from her rotator cuff surgery, and taking a similar drug with similar effects, that I received confirmation that indeed I was not going mad.
One look at my diary will highlight how I came across while under the influence of Methadone. Here are a few examples, unedited:
February 27, 1994"Why do the Olympics have so many commercials! and Greg Gumbel should be shot on the spot!"
"I did it! I stayed awake for Saturday night Live! But it was not very exciting, so I fell asleep anyways."
"One side effect of this new medicine I'm taking which is supposed to stop diarrhea is to cause it. So ever since I have been taking it, I have been receiving nasty little surprises....out of nowhere, with no warning! You think it is funny, but we have to wash the sheets often, and wash the underwear everyday! Help! I fell like I need diapers!"
March 1, 1994"Holy cow! Where has time gone! Went into work today because I took no Methadone this morning, which tends to make you drive kind of weird."
"I have been napping all afternoon, and whenever I nap when taking Methadone I seem to dream endlessly, constantly. They change by the second, and their content varies by the minute. Just thought I'd mention that."
Then there was the infamous poker game, under the influence. My close friends wanted to cheer me up, and decided to have a poker night, just like we'd used to. The only problem was, while under the influence, you make up your own rules! I would have absolutely nothing in my hand, but claimed to win, and before anyone could object, I'd taken the entire pot! I thought they were all out of their minds! Listen to my side of the story:
March 2, 1994"The boys came by what we hope will be a series of memories, or weekly games. Included in the festivities was "long shot" Klaussen, "Rick, I forgot the beer Loudenburg", "objecting Abramowitz" (sorry Adam), and myself. We were hoping Sammy would be our fifth, for what's a real game without a fifth, but we'll rectify that by next round.
It was evident from the start that the boys were mighty rusty, forgetting rules, mis- dealing and the such. Consequently, I don't think we could draw a clear winner or loser. Tempers did flare on a couple of occasions as well, but no all out fist-ti- cuffs, which would have been bad for the china."
And there's more:
"All last night anything anyone talked about was the Grammys and this record breaking snow storm that would be on the ground this morning. I thought the Grammys were more exciting, but we did get a shitload of snow."
March 7, 1994"Went to work for 2 hours, but felt groggy, you know, trouble getting up the stairs. So I came home. Also, appetite ain't so good, so I'm trying to find something to poke on. 7 more days till chemo starts again. I'm kinda looking forward to it because it's all the waiting and sitting around that kills ya."
The day I stopped needing methadone was the day I knew I would be okay.
March 22, 1994"2nd week of chemo is over. Ran a lot faster than the first week- I guess because I knew what to expect, and was better prepared. I no longer use the Methadone, which is great because it really put you in a daze day & night, and it really wasn't needed. Tylenol 3 does the same without the side effects."
Another physical limitation now imposed on me by this dreaded disease was the inability to exercise. Physical activity was probably one of the most important aspects in my life, for both physical and mental well being. Having this ability taken away from you is like losing a part of you.
Because of my new weight and muscular skeleton, my only physical activities were walking (yards) and climbing stairs, which proved to be treacherous enough! But the inability to perform these once basic routines only added spark to the flame of desire to gain it all back.
"It has begun to occur to me that life is a stage I'm going through."
Being sick and admitting you are sick are two different things entirely. As I mentioned earlier, I was sick for a few months before I came to the realization that I was really sick. It wasn't until I admitted I was sick that I was able to come to grips with what was necessary for recovery and piece of mind. Chemotherapy was the dose of reality needed to drive this point home.
"Well, the silence in this house
The time away from the hospital was mainly spent at home, on the couch or in bed. Anyone who has ever stayed home sick from school by themselves knows the feeling of being home alone. This was probably the toughest mental test for me, for it was during these times that my thoughts would turn to the grim reality at hand. Would this chemotherapy work? How long am I going to be in constant pain? How far will these chemicals drag me down? Will I even make it through this ordeal? What will happen if I don't? How will I know if I don't? Why me? The list goes on, but you get the gist. The more you think about these things, the more depressed you get. Being alone was the true test of being able to come to grips with your own thoughts and fears, and whether or not you were going to move on. I decided to wipe the tears away and hit the demons head on, with some help, of course.
Melissa was the strongest supporter and non-medical nurse one could possibly ask for. Not only did she have to live with the fact that her spouse was gravely ill, but she had to put on a happy face everyday in spite of it all. But not once did she doubt my ability to overcome it, and her strength is what allowed me to get out of bed every morning. Sure, we both had our times when together we would break down under the pressure of it all. But those times grew further and further apart as we learned to help each other move on.
Diary, February 19, 1994"Throughout this first week my biggest hope and inspiration bar-none has been Melissa. I know she was shocked and scared at the beginning, like everyone else, but she has really learned to see what I need, when I need it, and in just the right quantities. She pushes me when I need to be pushed, and makes me slow down when I am trying to hard. To she I am forever grateful and when this is over with, I promise that we will go away together.
Your family is also one of the most important elements in the positive mental equation. Knowing you have people there who care about you and are there for you is vitally important in terms of mental well-being. Mom was always there, checking on me as soon as she got home, deciphering the medical potions and problems, and administering the love that only a mother can provide.
Dad was also a vital force, but his support came more in actions than in words. He gave me the room to recover, and reassured me that missing work was par for the course. When I felt the need to be productive again, he furnished me with the necessary requirements to start an office at home. Although I did very little work at home anyways, just feeling you are being productive is a tremendous self-confidence booster.
Paul, the resident Doctor, was also a catalyst in my mental well-being and recovery. Although in the beginning he and my doctor had major disagreements on many issues, Paul was a second source of information and verification that helped bring peace of mind to an often troublesome and confusing ordeal. So regardless of what my doctor thinks, I still believe you are a good doctor Paul!
My siblings were a constant source of encouragement that I could turn to when I needed someone to shoot the breeze with. Some were better than others in masking their fear and concern for my well-being when speaking with me, but that is understandable considering it all. I can't imagine life without anyone of them, and their simple presence reinforced the family bond that holds us all together.
My friends provided the day to day contact I needed to reassure myself I was still one of them. Most all of my good friendships go back to high school days, when memories seemed timeless. It seemed everyday I would be in contact with one of them. John Charney would come by with his newest novelty-the wine corkboard. John Lockwood brought a wood carving lithograph of the Charles River. Adam brought by his good wit and humor. Rick and Carrie brought the reminders of mountain biking and a cold Ipswich ale. And Kirko brought by the most cherished gift of them all- an autographed Nike hat from the major participants at the 1994 French Open! All of them brought the reassurance that before to long I would be back on par with them, sharing laughs and good times together.
Then there were the relatives who sent their best wishes and words of encouragement from near and far. It's amazing the warmth that can be projected from opening a simple card, and the translating effect it has on your mental health!
Hunger PainsAh yes, the hunger pains. Not the hunger pains in the traditional sense, mind you, but the pains of not being able to force any food down your throat. One of the side effects of Chemotherapy is the loss of appetite, and the ability of the taste buds to proper function. Not only was I not hungry most of the time, but when I was, the food often tasted different than it used to, in a not so appealing way.
This was a problem, for the only way to gain the weight back was through proper nutrition. To help complicate matters, any food that went in had the tendency to go right back out again-not through regurgitation, but- you know what I mean. Hence the dilemma.
The key was to try to eat small amounts of high calorie food constantly, not just when you were hungry. Dr. L said to forget about everything you had learned about good nutrition, and start eating whatever you wanted. He recommended a daily diet high in pizza, ice cream, peanut butter, milk shakes and the like. I thought I had died and gone to food heaven!
But the reality of this problem is a lot more serious than I make it out to be. Eating now turned into the most dreaded part of the day, besides sleeping. I would sit at the kitchen table and stare at the food, nibbling on bites no larger than Peter Zak dared to eat. It was so hard. I wanted dearly to eat it all down, but my mind and stomach said no way. In an effort to help the cause, Mom and Melissa must have tried every recipe in the book. Nothing seemed to work, and frustration ran high all around. Here's what the diary had to say about it:
March 7, 1994"Appetite ain't so good, so I'm trying to find things to poke on. Melissa, that's her sore point. If I don't eat, she goes crazy, and gives a "you're going to die" lecture. So I try my best-sometimes she helps, sometimes she only adds to the frustration. But I know she means well."
Weight at this time was down to an all time low of about 130 lbs.
Finally, it seemed relief was in sight. Dr. L prescribed a drug called Megase, which small children with AIDS take to help with their appetite. I tried it for a while, and it seemed to work. That, and the combination of drugs finally pulling together to start working, gave me the relief I needed to start eating something. This brings us to the shopping trips from heaven.
When I went to the supermarket, I felt like a kid in the candy store. I loaded the cart up with the bare essentials: Cap't Crunch (Peanut Butter & Crunchberries), ring dings, HO HOs, cookies (Keeblers, of course), Ice Cream (Ben & Jerrys), candy bars, Carnation Instant Breakfast drinks, etc. I think you get the picture. The check out clerk would always ask me if I were having a party. "Yes, I am", I would reply with glee!
Did I leave out the Gatorade? Another effect of the chemo and diarrhea combination was to leave me in a constant state of dehydration. The one drink that seemed easy to go down and tasted good was Gatorade. So included in the shopping cart were gallons upon gallons of my new drink. Cherry, grape, lemon, ice lemon, ice tea, and my favorite flavor, orange.
The regimen seemed to be working. My diary on April 13th tells the story:
"I met with Dr. L a week ago and he says things look great!-eat-eat-eat! Put on weight and do anything you want this summer. How's that for inspiration! Appetite is excellent, eating all meals, and BM's are becoming solid!"
Light at the end of the tunnel
"Discipline can stop my hunger
Then I started a list of all the activities I wanted to be able to do by the end of the summer. The list included: Mountain Biking, walking, running, tennis, golf, stickball, swimming, hiking, and kayaking. Then I drew out a plan to get me there.
Diary, April 26, 1994
"I will walk again.
May 7th, 1994"Well, round 1 is complete. Took a CAT scan on Monday, and the results are in: on the road to a nice recovery. All lymph nodes are normal again, fluid is gone from abdomen, and cancer is moving out from the liver. "Best news I could have heard", says Dr. L. Just keep doing what works until it's gone! ....Looking forward to having a great summer anyways-just let me walk and jog and ride a bike and I will be the happiest person in the world!"
Each day I documented on the board how much time I spent on exercising. First I started walking on the treadmill for 15 minutes at a very slow pace. Then I worked in hand weights. Then I tried the bike. At the end of each week I documented my weight. Slowly but surely, progress could be seen-both in terms of stamina and weight gain. Here's what the chart read:
May 23rd: 140 lbs
After August 1st I stopped keeping track because I was too busy enjoying being busy to wonder how much I weighed!
The hardest part of the physical routine was building your muscles up from scratch. As the weight was gained, I had to teach my muscles how to work properly again, which was both frustrating and time consuming. Where pushups were formerly done it sets of 25, I could not do one. The muscles in my wrists would not bend to the angle necessary to hold my weight. And progress seemed so slow. Walking could be done, but not as fluently as before. The hips did not seemed to want to cooperate, and the legs moved awkwardly, as if weighed down. Patience was tested to the max, as I tried to come to grips with the fact that this was going to take a long time to get back to normal again.
But as spring turned into summer, life was slowly becoming enjoyable again, which allowed me to clear out the mental demons from winter, and gain my dignity back.
June 10th, 1994"Welcome to summer! Fine weather has finally arrived, and with it, a turnaround in health for the better. Since our last talk, it seems my body is really getting itself back to normal....and exercise seems almost natural. I've taken the bike out, hit the driving range, and even hit some tennis balls with Kirko yesterday. My stroke is fine, but the legs don't seem to want to move as fast as my mind does!"
A Formula for Success?
"This is a message to all thoseMany people have asked me how I did it-recovered from cancer. First of all, I tell them I haven't, because the battle is far from over. I've recently passed my year aniversary (what an anniversary), and continue to undergo chemotherapy. Although my physical health is probably better than it was before I got sick, the cancer remains. Carcinoid cancer, because it is so slow growing, has a tendency to return later in life. And it is also has no known cure to date. So it is probably there for good. The goal is to keep it dormant for as long as possible, and hope for the best. So in the meantime, the procedure is to space the chemo sessions farther apart, and take periodic catscans to monitor the tumors. Hopefully we can get to a point where the tumors are growing so slowly that we can stop chemo for a long period of time. In the meantime, life must go on.
During the whole ordeal, I learned a lot from a variety of sources that aided me and provided encouragement and enthusiasm in my recovery, both mentally and physically. There are a number of self-healing books which were rather good, for the patient and family alike, in describing the disease's characteristics, tendencies, and treatments. Knowledgeable professionals also provided education and guidance about the disease, including Paul, Mom, my doctors, nurses, and family friends. My own personal quest for knowledge about the disease led me to a number of information sources that aided in my better understanding.
But I think there existed a few general principles that I followed or believed in that served as my mental and physical foundation for success. Not all of these ideas are new, and several are borrowed from others. Here they are:
1. Trust in your doctorsIt all starts and ends here. If you cannot trust the person or persons responsible for your health care and treatment, you will never receive peace of mind, and will be in constant battle with yourself. You have enough to worry about already. Having a doctor you feel comfortable with is a giant step towards mental good health, and a successful recovery. Thanks Paul, Dr. L, Nancy, Eileen, and Mom.
2. Positive Mental AttitudeI think my attitude towards life was gained in early childhood, but later reinforced through team sports, and the sales profession. Successful team sports require an attitude that thinks about winning all the time, not losing. Believe you will win, and you will. Expect to lose, and you probably will. In order to win, you must be better than the rest, mentally and physically. You must train the way you want to win (inspiration borrowed while playing the Air Force Academy in rugby- this motto is posted in their training facilities), which requires dedication and commitment. If you are not ready for that kind of commitment, step out of the way, because the guy right behind you is.
Sales is much the same way, but continued building where team sports left off. Sales is a numbers game, with high highs, and lower lows. You must be able to weather both highs and lows if you want to be successful. You must want it in a way that feeds upon itself for energy and drive. If you want the easy way out, sales is not your profession, as many learn the hard way. But if you have a positive attitude, trust in your abilities, and the ability to see the light at the end of the tunnel, you can conquer any goal you set your mind to.
There was also the fact that I really didn't have a choice. I had the disease, whether I liked it or not. I could sit around and cry about it until the cows came home, but where would it get me? I decided it was better to hit it head on, and accept it, and move on. Once you understand that, you are well on your way to recovery.
3. HumorHumor also is formed somewhere in childhood, and I consider myself a pretty humorous kind of guy. My jokes may be bad, and sometimes in bad taste, but humor seems to permeate my life. Humor helps bring fun and laughs to a terrible, frightful situation. It eases tension and stress like nothing else I know of (beer comes close). Without humor, life is way too serious, and so is cancer. So I used humor to get through the toughest times, and to help comfort and relax those around me. Having to change your underwear 6-8 times a day? How else could you deal with that than laugh?!
4. Support NetworkNever before have I cherished friendships so much as when I was sick. Nothing is more depressing than being sick and having no one there to comfort you, to support you, to help you up. I was lucky enough to be living at home at the time (an omen) and have the support of my parents and in-laws close at hand. Most of my closest friends were in the area, and were always there to turn to. I have a loving wife who was there day and night to reinforce the fact that someone cared. And then there were my siblings, relatives, and people that came out of the woodwork to offer support and encouragement.
But you must be able to reach out and ask for help, and put your dignity in your pocket. Nobody likes to depend on anyone else, so often people suppress the desire to ask and rather hold in the pain. Reach out and let them know how important they are to you, before it's too late. I'll always remember Dad allowing me to set up an office at home so that I felt productive, even though I slept most of the time and did very little work at all. It's the little things that mean a lot, so don't be afraid to depend on others when you need to. There will be plenty of time later to repay the favor!
5. Retail and Mental TherapyMelissa is still taunted by these words: "I'm going to buy that truck." All the time I was sick, I kept telling Melissa that when I got better, I wanted to buy a new truck. I thought of it as a reward for when I got better. At times I was very serious about it, but in reality I knew it was a far fetched idea. But I guess I mentioned it a little too much, and Melissa vowed it would be the death of her.
In the medical profession, I learned they had a name for it: Retail therapy. When people are stricken with a grave illness or disease, they often go out and buy extravagant items to help make themselves feel better. A lady in Boston went out and bought herself a new Saab Convertible, so that she could feel the wind breezing through her chemo-less hair head. Others buy electronics, or artwork. Whatever works. But the point is this. You need to reward yourself and make yourself feel special. It was hard for me to treat myself because I felt guilty-somehow I didn't deserve something nice or decadent because I didn't do anything to deserve it, and in fact was requiring so much from other people. But you need to do the things that made you happy before. Buy that new CD, get an hour-long massage, go away for a nice weekend. When you stop doing the things that make you happy, guess what? You're not happy, and that does nothing to help with your recovery or state of mind.
In closing, I've learned a lot about myself and about others during this past year, and have changed my priorities accordingly. No longer do I get caught up in the little things that frustrate and iritate you on a daily basis. No longer do I put off for another day what can easily be enjoyed today. Take that trip, don't plan for it! Buy that car (I hope Melissa isn't listening), don't dream about it! Quit your job (don't worry Dad), and do something that truly makes you happy! Don't wait for a grave illness or death to come along to force you to enjoy life.
My high school yearbook quote was: "It's better to have it all now than none later."
Wouldn't you agree?