"There is nothing new to be discovered in physics now. All that remains is more and more precise measurement"  - Lord Kelvin, ~1900

Ok, I could be mistaken about proton therapy.

Even Lord Kelvin missed a few future possiblities that physicists discovered in the last century, including the very existence of protons (the term was coined by Rutherford, and it first appeared in print in 1920).

Still, I believe that universal proton therapy is premature. The road side of medical technology is littered with "advances" that should have marked progress but didn't. For each type of cancer there may be some (likely small) subset of patients for whom the astonishingly precise measurement of radiation dose and volume can result in incrementally improved cure rates through local control, while still minimizing morbidity. I prefer a  few proton facilities equipped with the latest IMPT where carefully selected patients could only be treated as part of clinical trials designed by experts from all disciplines. I would prefer studies designed to objectively measure quality and quantity of life, not surrogates like psa's and imaging shadows. I also prefer world peace.

The technological imperative has once gain prevailed, and the age of proton therapy is upon us. Unintended consequences will occur, though not easily predicted. 

The first unintended consequence of proton prolifertion will be an expansion in the total number of patients treated. Because protons are perceived to result in few side effects, a belief among caregivers and patients will be fostered that there is nothing to lose by treatment. If significant morbidity is cut in half but double the number of patients are treated, the total morbidity will be unchanged. Currently proton therapy costs twice as much as photons (at least). Under this set of assumptions costs will quadruple at a time when health care costs in general are exploding.

Quadrupling costs would be justified if survival and quality of life were incrementaly improved. How likely is this to be the case for prostate cancer? About 15% of patients who are diagnosed with prostate cancer die from the disease, and autopsy studies suggest the actual number of prostate cancers is much higher than the 190,000 diagnosed. Natural history studies indicate that a diagnosis of early stage prostate cancer has very little effect on survival ("natural history" means "untreated"), yet these are the cancers most amenable to "cure". But try telling a patient he has "mild" cancer and then advocate watchful waiting. His first question will be: then why did you look for it? His second is likely to be: how can I find a new doctor?

Anatomic stage provides a measure of disease progression. SEER data (crude as it is) based on historic stage shows that 91% of prostate cancer cases are diagnosed while the cancer is still confined to the primary site or after the cancer has spread to regional lymphnodes (localized or regional stage); 5% are diagnosed after the cancer has already metastasized (distant stage) and for the remaining 4% the staging information was unknown. The corresponding 5-year relative survival rates were: 100.0% for localized/regional; 31.9% for distant; and 79.1% for unstaged. Not much room for improvement exists for stage I cancer, at least in terms of survival, and no local treatment will improve survival for those who present with distant spread.

The trick is to find the small subset of intermediate risk prostate cancer patients (perhaps about 15% of the total) who still have local disease at diagnosis but who have a relatively poor prognosis, and then to treat them without vastly expanding the total number of people treated. Since risk stratification has a large element of subjectivity built in, I suspect the latter condition will not prevail.

A second unintended yet inevitible consequence of creating capacity to treat 1600 plus more patients per year (as in the case of th NIU faciltiy) in a market that already has ample radiation treatment capacity will be another escalation in the medical marketing wars. Loma Linda has advertised nationally for years, making claims for protons that push the evidence based envelope.

A roughly fifty year cycle seems to exist for medical hucksterism. In 1850 when the famous gastrophysiologist Wlliam Beaumont recruited a new physician to his private practice in St. Louis he placed a small ad in local newspapers announcing that his new partner had special expertise in diseases of the eye. Beaumont was immediately viciously attacked by colleagues and nearly drummed from the corps of the local medical society.

The then newly created (1849) American Medical Association had borrowed heavily from Thomas Percival's treatise (A Scheme of Professional Conduct Relative to Hospitals and other Medical Charities 1772) on medical "ethics" when it drafted its code of conduct. Advertising was eschewed. By 1900 US newspapers were full of boiler plate ads for patent medicine, medical devices and doctors claiming superior skills or unique services. By 1950 the rules of 1850 had regained the ascendency and physicians were "allowed" only a briefly run "toombstone" in newspapers to simply announce their presence in a community.

By 2000, the advertising cycle was in full upswing again. The "ethical" prescription drug industry (the adjective had been applied to distinguish what has become "big pharma" from the snake oil salesman) went from no ad's aimed at the general public in 1950 to near the top of the spending list by 2000. Last year, Glaxo was the 7th largest spender on ads, spending $2.4 billion, and Johnson & Johnson came in 9th with $2.3 billion in spending, placing the health care giant ahead of Unilever, Toyota and Sony.

Percival's code had been drafted at the behest of a London hospital in an attempt to regulate the relationships between physicians and hospitals and among the physicians themselves. In 2008 individual physicians were largely out of the ad wars. Rather, health care "systems" now "market" themselves with claims that they are either more caring or more skillful (and usually both) than their competitiors.

And so the proton facilities with their $100+ million in bonded indebtedness will advertise for patients. They will compete with each other on a local, regional and national level. It is not accidental that NIU's new facility is across the street from DuPage Airport and its 8000 foot runway, and in the shadow of Fermi Lab's Wilson Hall. (Ironically, Fermi Lab is in a state of decline, having been eclipsed by the more powerful accelerator in Cern.)

NIU has announced that it will enter into an agreement with the Northwestern University Faculty to provide the clinical expertise at its new center. A search of the Northwestern cancer center web site (http://pubs.cancer.northwestern.edu/abstracts/search?do_pagination=1&page=1) for faculty publications containing the word "proton" yielded 59 hits. But none of the 59 papers seem to have anything at all to do with treating patiients with protons. Basically, NIU, which lacks a medical school, will credential and privilege physicians to use its clinical facility. How will NIU judge the compentency of these physicians and what experience with proton therapy will be required? Who at NIU has the clinical experience and expertise to make these decisions? How will prospective patients be informed about these issues? Advertisements?

Check this site to see how the M.D. Anderson Proton Center (for-profit) is to be marketed by M.D. Anderson Cancer Center, which "leased" its name to the center. http://hcrenewal.blogspot.com/2005/10/m-d-anderson-cancer-center-leases-its.html First the marketing agreement to promote the center, then the science to see if it is actually better.

The protonless health care systems will tout their competing services, such as their daVinci robots, brachytherapy, imrt guided photons and expertise in medical oncology. The have-nots will not so gently point out that "to a man who only has a hammer, the whole world looks like a nail" and that proton-only facilities are dominated by mad physicists and unidimensional clinicians. They will do this until they install their own $15 million proton machines. Then they will advertise protons. All this collateral spending will cost many millions.

A third unintended consquence will be to ensure the continued immortality of Will Rogers, who said:  "When the Okies left Oklahoma and moved to Califormia, they raised the average intelligence level in both states."

The Will Rogers Phenomenon will occur when both of these conditions are met: The element being moved is below average for its current set. Removing it will, by definition, raise the average of the remaining elements. The element being moved is above the current average of the set it is entering. Adding it to the new set will, by definition, raise the average.

Proton therapy will be declared superior by it's proponents. These proponents will obtain transrectal ultrasounds, transrectal MRI's, CT's, psa's, psa velocity, free psa and other tests to "stage" patients. Historically many of these tests were unavailable or not done in the photon era. More staging most often results in up-staging, which meets the conditions of the Will Rogers Phenomenon.

For example, prostate biopsies from a population-based cohort of 1,858 men diagnosed with prostate cancer from 1990 through 1992 were re-read in 2002 to 2004.The "new" Gleason score readings (high scores indicate poor prognosis) were an average of 0.85 points higher (95% confidence interval [CI], 0.79–0.91; P < .001) than the same slides read in 1990 to 1992. As a result (thanks to Will Rogers), Gleason score-standardized prostate cancer mortality for these men was artifactually improved from 2.08 to 1.50 deaths per 100 person years—a 28% decrease even though overall outcomes were unchanged.

Given the right pathologists and a little staging leeway, most any new treatment will look great. Perhaps surgery looks better than radiation for younger men with prostate cancer (at least according to one widely quoted paper) simply because surgery results in very accurate staging.

For those who prefer more formal cost-effectiveness methodology (like insurance companies), analysis indicates that proton therapy for prostate cancer does not appear to be cost-effective when measured by commonly acceptable parameters, according to a study by researchers from  Fox Chase Cancer Center (JCO 2007; 25: 3603-3608). Quality-adjusted survival was similar for both modalities in each age group as measured by QALY: The incremental cost effectiveness ratio was calculated to be $63,578/ QALY for a 70-year-old-man and $55,726/QALY for a 60-year-old man.Quality-adjusted survival was similar for both modalities in each age group as measured by QALY: The incremental cost effectiveness ratio was calculated to be $63,578/QALY for a 70-year-old-man and $55,726/QALY for a 60- year-old man.

 "When even the brightest mind in our world has been trained up from childhood in a superstition of any kind, it will never be possible for that mind, in its maturity, to examine sincerely, dispassionately, and conscientiously any evidence or any circumstance which shall seem to cast a doubt upon the validity of that superstition.  I doubt if I could do it myself." - Mark Twain

I am a skeptic, in spite of Mark's good advice. The problem is, time will not tell. Prospective randomized trials comparing survival for surgery, brachytherapy, photons and protons for intermediate prognosis prostate cancer patients will not be done. Carbon ion radiation may replace protons, and might be the next half-way technology to usurp the technological imperative. Neither Lewis Thomas nor Thomas Hardy would have been surprised if it happens. 

Some of us believe in Guardian Angels or some form of spiritual guide who watches over us to protect us and keep us safe in difficult times. Some of us do not. I guess I have always believed I have had someone watching over me, helping me in many ways. Life has not always been perfect and in the many hardships I have endured in my life I have always made it through. I have always survived. I had become more aware of the existence of my Guardian Angels in my recent journey. From the time in the beginning when I was told to give up as my life would be short and painful until now when I realize I have survived I had to make decisions. Many life changing and risky decisions that I could not have possibly made on my own. It is entirely possible that I could be a Guardian Angel to someone else. But I do not believe I could be a Guardian Angel to myself. Wouldn't there be a sort of conflict of interests. Kind of like me being a referee on the side of my own team. I gained faith, hope and the will and determination to live because I had my Guardian Angels to guide me through it all. I had listened to their advice from my inner soul that allowed me to make the rights decisions. I have been on my own for the most part of my adult life but I have never been alone. There has always been someone or something there to guide me, to watch over me. The truth of the matter is that none of us is ever alone. There is and always has been someone there to guide us through life. Some of us accept and heed the guidance and some of us choose to ignore it or simply don't realize or understand the signs given to us to guide our path.

There is a story that some of you may have heard before about a man caught in a flood. As the waters rose, he knew in his heart and with his faith that the Lord would save him. As the water continued to rise, eventually a boat came along to rescue the man. He refused the offer saying "I have faith, my Lord will save me". The water continued to rise until he finally had to climb to the top of his roof to avoid drowning. Soon a helicopter came by and again he refused the offer saying "I have faith, my Lord will save me". Eventually the water rose over the roof and the man drowned and ended up in Heaven in front of St Peter. He then asked St Peter "Why did my faith not save me". St Peter then said to him "What happened to the boat and helicopter we sent for you"? The man did have faith but did not realize that his guidance or Guardian Angels may come to him in different ways or in a different form.

A friend recently asked me if I knew who my Guardian Angel was. If she was thinking in certain terms as to a specific person or being I can honestly say I don't know. I do believe that Guardian Angels can be of at least two different types. Those of a more spiritual nature who guide us in making difficult decisions and the right choices in life. Then there are those who we encounter in our every day lives who guide us with supportive thoughts and prayers. They could be family, friends, someone we may encounter through our travels or work or even someone who suddenly appears in our life that offers us sincere and caring support or thoughtful wisdom. Sometimes these people enter our lives for a reason that is in most cases unknown to us. In today's on line world that can happen quite often. Granted everyone you encounter in that way may not be truly sincere but with a little faith and wisdom you will be able to tell who is and who is not sincere, caring and understanding. Life can bring us many forms of guidance. If we have faith and wisdom and choose to listen our path will be an easier one to travel and we will survive. If we ignore it we may end up struggling with hardships and live a very unhappy life.

As far as the spiritual side of my life and existence goes my Guardian Angels could be of many forms or entities. They could be Angels from God sent to guide me and provide me with solutions to my problems and renew my faith and hope. It could be my father who died many years ago or my aunts and uncles or one of my friends from the past. It could even be all of them combined working together to provide me with the guidance I need to survive and to ensure my journey is an easier one. Your Guardian Angels in the spiritual sense are the ones who guide you and provide you with making the right choices and decisions to help you survive all the earthly hardships and make your journey an easier one to travel. They may guide you in some cases without you even knowing it with their wisdom and knowledge gathered from eternity. You may be the one who chooses the final path you take but not without their guidance. They are your final thought and conscious decision guides.

On the more earthly side of my existence I could say I have had many Guardian Angels. Starting with my mother who was diagnosed with stage 4 rapidly spreading lung cancer around the time I was diagnosed with my cancer. She has had to go through many tests and treatments and a lot of pain and uncertainty. However through it all she has had more concern about my health and well being that she has had for herself. There are also some of the doctors who have helped me to live life again in a normal way. Some of them I could have done without as anyone who has followed my story would know. One in particular gave me hope and life again when he listened to me and allowed the testing and pathology results to dictate the surgical outcome. He did the best he could and gave me the most I could hope for so I could be normal again when my journey ends. Of course if it were not for the treatments shrinking the tumor by 99% I would not have had the best possible results that I had. But that was a miracle in itself. There were the many wonderful, caring and supportive nurses who took care of me in my hospital stays which have numbered 3 so far. Although they all had a tremendous workload and many patients in much more critical condition than I they never stopped caring or helping me when I needed it. Then there was my extended family and network of friends who provided me with caring thoughts and daily prayers. There was also a very special friend (PM) who took it upon herself to write a blog post dedicated to me asking for prayers for my critical day of surgery. Many people responded and sent their wishes and prayers. Many who I did not know and whom I may never meet. Like I mentioned previously your Guardian Angel could be someone who all of a sudden enters your life for no specific reason other than the fact it was meant to be. Those people or even one person you may never meet face to face but they show up when you need them the most to make your journey easier to bear.

All of these people showed me that they cared and provided me with the support and prayers I needed to get me through this journey so far. Some of them may not be with me when my journey is completed in a few months. Some new Guardian Angels may take their place. In any event, I know I am not alone nor have I been alone and I will soon complete my journey and be happy, healthy and whole again and completely cancer free. Every one of us has our Guardian Angels, our family, our friends, someone who watches over us. You must have faith, You must have hope, You have to believe and you will see that you are not alone. There is always someone who watches over you, who guides you, who cares about you, to help you through difficult times. I know if I didn't have the support I had, if I didn't accept and believe it would have been a much more difficult journey for me and possibly a much different outcome. No one ever promised us that life on this planet would be an easy one. For some of us it may be more difficult than for others. If you accept the fact and know in your heart you are not alone you will make it through any obstacle or difficult situation that comes your way.

In answer to my friend who wanted to know who I thought my Guardian Angel was, I would have to say everyone. The inner guidance of faith, hope and determination that helped me make the right decisions that freed me from a possible death sentence and gave me hope to fight to live. My family and friends who supported me and prayed for me. All the nurses who watched over me and made my aches and pains more bearable. The Surgeon who listened to me and made me whole again. Everyone who supported me, prayed for me, watched over me and helped me in every way. They were all my Guardian Angels.

For all of you who have helped me through this long journey I wanted to leave you with this short poem. It started out as something I found while browsing one evening but I ended up re-writing it to fit my thoughts, feelings and situation.

My Guardian Angel

I have a Guardian Angel
sent from heavens gates up in the sky
who watches over and protects me
and wipes the teardrops from my eye.

I feel the warmness from her smile
her gentle and caring ways
protecting me from all of life's sorrows,
guiding my journey through life each day.

A hand that guides me on life's path
A heart that showers me with love
One who gives of herself so freely
guided only from the heavens above.

They say some people are truly angels
who walk beside us each and every day
Watching, caring and loving us,
giving us strength to guide our way.

I know of a special angel
that walks with me always by my side
she's caring, understanding and loving
with a special heart of gold inside.

In the journey of my life you've been watching
and guiding me carefully through
I know so deep inside my heart
my Guardian Angel was always you.

Each and Every One of You.

As the Journey does continue I will write the final chapter when it is over in a few months. When I have completed the testing, treatments, surgery and recovery. For then I will be Free. I may do a small update from time to time for my family and friends to let them know how things are progressing.

Soon - The final chapter and the completion of a long and difficult journey.

I will be free at last and my journey will end when my ship finally reaches the shore. There my Guardian Angels will be waiting and ready to guide me on my next journey.

It is now mid March 2007 and as I stated in my last post of part 3 I knew my recovery at home would be long and slow. For my first 6 to 8 weeks it was difficult to do much of anything. The aches and pains from the surgery and the diminishing affects of the severe edema I suffered while in the hospital were slowly dissipating. I had to alter many routines that a normal healthy person would not have second thoughts about performing in the usual way. In order to get in bed I had to crawl in on my hands and knees then try to position all my pillows in such a way for support then sort of roll over on my back to a virtual sitting up position and try to sleep. That is when I could sleep. My normal sleep routine had been disrupted since my first hospital stay and original diagnosis. To this day if I get more than a few hours of sleep at a time I am lucky. I have also been trying to sleep in the same position I described since my first hospital stay. Something that has not been normal for me as for most of my life I have generally slept on my side and not in a half sitting up position. Since I could not bend over very easily I had to devise some sort of device to pick things up from the floor or other things slightly out of my reach. That would make me more aware not to drop things too often as it was difficult to pick them up. There was also a clothing issue whenever I was able to get out as I did have to go out to buy groceries and run errands from time to time. As the surgery location and my dear friend ILE (Ileostomy) did not make it easy to wear normal pants with a belt I had bought some loose fitting pants with suspenders and eventually migrated to wearing scrubs that my dear nurse friends had obtained for me as well as some I had ordered online. I bought some cool Dickie's scrubs online with all the pockets and pouches that let me carry all the things I needed to venture out in life including a nice pocket for my cell phone. Then there was also the remnants of the edema. Bending over trying to put shoes on was one thing but then when your feet already a large 11 plus size were swollen it made it even more difficult to put them on. I must have looked like some sort of half dead zombie whenever I went out. The hardest part was in dealing with all the chores and projects that needed to be done around the house. I guess it was a good thing we had such a dry season as the lawn was not growing too fast and did not require that much attention.

As time wore on and I was regaining some of my strength, it was time to run some tests to see how well the surgery site had healed. It was now around the end of May and I had met with my Oncologist and surgeon to plan the testing and post surgery chemo. Again I would have a major conflict with my Oncologist as he wanted me to start the chemo first and hold off on the reversal surgery until after. He also tried to make me feel somewhat at fault for not coming in sooner to start the chemo and tried to tell me the chemo had to be done now or it would not be affective. I tried to explain to him that I am not a fast healer and to rush into chemo after going through what I had and not completely recovering would possibly be a major shock to my system and could result in problems with my surgery site healing. As usual, in his mind he was right and I was wrong. What could I possibly know about my body and whether or not it was ready for the onslaught of the chemo chemicals that would disrupt my bodily functions and cause more problems with my health and healing. In my mind it would be much wiser to perform the reversal surgery, give my body a chance to rest and get back to normal then do the chemo when I was better able to tolerate it with all of my body's systems functioning normally. Throughout my dealings with him and others in my journey it seems like everyone was in a rush to put my body through stresses that could do more harm than good. Wouldn't it be wiser to let my body catch up and recover from one step to the next rather than to subject it to one form of stress after another without time to rest or recover. I told him to let the test results tell the story as I wanted to be able to get my life back to normal before I had to go back to chemo and suffer through whatever affects it may bring.

It was now the beginning of June and my barium contrast x-ray testing was scheduled. Normally for this test it would be a simple yet less than comfortable enema application. However as my lower digestive system was reconstructed it would not be possible to proceed in that way as it could result in damage to the surgery site. The only other possible and logical way was through my intestines at the Ileostomy site. For anyone who does not understand the concept of an Ileostomy I will not go into great detail, but the barium solution had to be administered through the openings in my intestines by inserting a tube with a balloon at the tip to open a passage way to allow the barium to be injected. Not a painful experience but a somewhat unusual one as you feel the tube inserted and the balloon inflated while you lay on the x-ray table. The first attempt did not go so well as the doctor apparently started out in the wrong direction. I could feel the solution going upstream and eventually filling my upper digestive system which caused much in the way of discomfort and nausea. He then had to insert a second tube to find the path to the lower digestive system and he eventually got it right. So now I was full of who knows how much barium solution from top to bottom. After he finally got the images he needed the tubes were removed and the flood soon began. I was never one to be able to hold barium solution in my system for very long as I knew from previous experiences and this time was no exception. I had barium solution exiting the Ileostomy site and the lower system at a rapid rate. I ended up making quite a mess of the examination table and everything around me. After an extensive cleanup and putting myself back together I got dressed and was on my way.

Within a week the results were back and I met with my surgeon to review the test. He then told me the results showed the surgery site had not quite yet healed completely. He mentioned something about the previous radiation treatments had possibly affected the area resulting in a slower healing time. Since I would not be able to have my reversal surgery any time soon it was time to go back to the Oncologist and allow him to proceed with his torturing chemo plan. I had wondered if both doctors had got together and decided my path ahead of time no matter what the results of the test revealed. I know the Oncologist wanted to have things go his way for whatever reason he may have had. I do know that I have ignored much of his suggested plans in the past and made my own decisions that resulted in a much more positive outcome for my life and my future. But this time I had no recourse and had to go with his current plan. I had also wondered if I began chemo now and as the surgeon had stated the surgery site had not quite healed enough, what would the chemo do to my system and would it also result in slower healing or possibly compromise the surgical site in some way. I never did get much in the way of satisfactory answers.

The schedule was set and I was to begin my chemo treatments with Xeloda. Xeloda is one form of chemo treatments generally planned and prescribed for colon and breast cancer patients. The treatments were to begin on July 2nd. They were to be 2 weeks on with one week of rest for the next 4 or 5 months. The rest period is necessary to give your body time to recover from the affects of the chemo. If you were to take it continuously with no rest period it could do some serious damage to your system. The doctor started me out on 2000 MG for the first week which would increase to 3000 MG for the second week and for the duration. This was probably the maximum allowable dosage and would be quite intense. I reminded the doctor that I got very sick on the second day of my initial treatments. He told me I was also on radiation treatments then but since I had only one day of radiation I did not buy into his explanation. I also reminded him that during the first treatment it was pre-surgery and I had my entire digestive system intact and functioning minus the cancerous tumor portion. He was still not listening to me. His idea was to give me the maximum and if any problems came up we would deal with it then. My thoughts were, think ahead and avoid any problems before they happen. I would like to think I would have more say into what I am dealt and how we go about it but he just can't get it through his head that maybe I know more about what I can handle than he does and by this time in my journey I am thoroughly tired of all the pain and suffering I have gone through. I just want to get back to normal and get all of this over with so I can live my life again. To be able to do the things I want and when I want without all the testing, treatments and turmoil of the past year or so.

The first 3 week cycle went ok. There were the beginnings of some side affects in the second week with the increased dosage but cleared up for the most part in the recovery week. The second cycle came and I was not so lucky. The first week went ok but by the second week things started to go downhill fast. In the middle of the second week around the second of August I started to get some severe side affects. Stomach problems, nausea, fever and headaches. I won't go into great detail here as I have already explained in detail on one of my previous cancer update posts what happened and how I ended up. In a brief review, after a week or so of enduring some very difficult times I ended up in the hospital severely malnourished and dehydrated and dealing with IV's and medications until I was finally recovered enough to go home on the 23rd of August. After trying to reason with my Oncologist and receiving very little help prior to having to drive myself to the hospital emergency room I can honestly say I have lost most of my faith in the Oncologist and with the clinic. If I don't kick that doctors butt before this is all over with it will be a miracle.

For now I am home recovering yet again from one of the many bumps in the road I have encountered. When I feel ready to resume the treatments I will go back and give it another try. When I feel I have healed and recovered enough on my own schedule and in my own mind when I know I can handle it. Who knows, he may just say too much time has passed again and the treatments or any further chemo may not be as effective or worth the time. Maybe I will finally get some straight answers from him, who knows.

For now the journey does continue but for the most part the story is up to date. I will add one more part to the current story but the resulting chapters will be written later for the completion of the treatments and the final surgery when that time comes.

I hope this story so far has given you, my family and friends some sort of insight into what my life has been like in the past year or so. I hope it has also provided you with information on something that can happen to any one of us. Life is never certain and there are no guarantees. If you know of anyone traveling a similar journey a family member or friend and you think this story may help them along the way please pass it on. If it provides hope and peace of mind to just one person it will have been well worth it.

The Journey Does Continue . . . . For Now

Next up - Part V - My Guardian Angels

It was now the beginning of February 07. I had to go through more test procedures and scans in preparation for my upcoming surgery. The surgery was scheduled for February 14th, Valentines day. In the week before the surgery I was given my pre-surgery prep instructions. I won't go into the complete gory details but it consisted of me not having any food for two days prior to the surgery. Only certain liquids up to the night before and absolutely nothing after that. As I had been struggling to build up my weight and strength in the time I had before my surgery I had hoped I had done a good enough job to be able to sustain myself until the surgery and not cause any problems with the surgery and recovery. The other part of the instructions involve various prescriptions I had to use to make sure my digestive system was clear, clean and free of any particles that could cause complications with the surgery. Some were for the upper digestive system, some were for the lower. Like I said, I won't go into the details but I think many of you get the idea.

February 14th 07, the day of my surgery arrived. It was no ordinary day and not just because of what I was about to go through in a few hours. I was extremely hungry after not eating for two days. I knew I could not eat anything as it would interfere with the surgery but I was so hungry I could have devoured a side of beef in one sitting. It was also a cold and snowy day, the worst so far of winter. We had received at least 2 feet of snow overnight and another 2 or more was on the way. I remember going out and shoveling off the walkway to my driveway and part of the driveway so when my youngest sister and my mother arrived to take me to the hospital they could get in and we could make it out again. I don't know how I found the strength to do it but I did. I even wondered if everyone would make it in to the hospital. The surgical team, the nurses and the support staff. My sister arrived and we were off to the hospital. No time to worry about the snow piling up or anything else around the house for that matter. It was time to find out if I had made the right decisions in my journey.

We arrived at the hospital and after checking in I was wheeled into the surgical prep area to get ready for my surgery. I was given one of the standard hospital gowns with the amazing open air back door view. I never did like those things. After the initial prep, Mom and Sis were allowed to come back for one last visit before surgery. As it would turn out they would not be able to stay to see me when I was out and in recovery as the storm was getting worse and they had a distance to travel so they had to get back home while they could. The surgeon came in and went over the details of what was going to happen. He had asked if I or Mom had any questions. Neither one of us could think of anything. I think I even tried to inject a bit of humor and had asked if I would have flowers and chocolates waiting for me after as it was Valentines day along with a few other jokes. Everyone got a bit of a laugh from my antics. I can get humorous sometimes under stress but it doesn't make my true feelings go away, maybe just a bit easier to bear. I can't say that I wasn't afraid because I was. It was time to find out the truth as to how severe the cancer was and to what extent it may or may not have spread. Did I make the right decisions in the past part of my journey? Will there be any complications or other problems due to the surgery or to the cancer? It was time to find out. Whatever they were injecting into my veins with the IV must have been pretty potent. I remembered nothing after that, not even being wheeled into the operating room. From then until I woke up in my room after coming out of the anesthetic was a complete blank. The surgery must have gone on for at least 3 to 4 hours.

The next thing I remembered was waking up in my room. Still quite a bit groggy but I knew I was alive as I surveyed my surroundings. I must have looked like some mad scientists lab experiment as I noticed all the various items and devices I was connected to. First there was the tube going down through my left sinus all the way to my stomach attached on the outside to a suction/vacuum device. As with any major digestive system surgery the system shuts down for 3 or more days however the acid and other fluid production does not. You have to have it constantly pumped out or you could end up with some serious problems. That I would have to deal with for the next 4 to 5 days. After one or more days of trying to explain to one male nurse it was clogging and having him get annoyed I ended up clearing myself most times. Then there was the 2 urinary stents that were inserted before the surgery to prevent the fragile tube from being cut or damaged during surgery. I would have them in for almost a week. Then there was the Urinary Catheter that was in place for almost a week and then for some reason reinserted for a day or so. I don't know if the nurse doing the re-insertion just wanted to practice on me or what but that wasn't a fun thing to go through the second time as I was fully conscious, not like the first time while I was in surgery. The stents and the catheter were connected to a collection box so they could measure the ratio of input to output fluids and make sure all was well and my kidneys were functioning. I also had several IV lines connected from the metering device to my arms. One was for saline fluids and others possibly for med's and other items along with my friend the Morphine pump. That device I would later find out would inject the pain killer into my IV with the push of a button but was restricted to one dose every 10 minutes and no sooner. If you were in pain before the 10 minute time period was up you had to wait until it reached the time interval. Last but not least was a bag on my right side attached to what I would later find out was my small intestines the end of which was protruding through a small to medium sized hole in my abdomen. I tried to remember what I had learned from my talks with the surgeon before my surgery and the materials I was given to read up on to prepare for post surgery affects. Left side Colostomy, right side Ileostomy. It had not sunk in yet as I was still half out of it. All I knew was with all the hoses, tubes, boxes and collection devices attached to me it was going to make for one heck of a difficult time getting around. It took a nurse several minutes to collect all the lines and devices in and onto the IV stand later when I had to do my walking routine. There was also the surgery site covered by the large bandage and tape over what I would later find out was a stapled incision. I was also given a coughing pillow that I was to place over my incision if I found the need to cough so I would not stress my surgery site.

Later that evening the surgeon stopped in to pay me a visit and give me the results of my surgery and the details of what went on and what was found. I didn't know what to expect and I didn't even know how I would react with whatever news was given to me. Even as I was still somewhat out of it and with the Morphine now in my system along with all the lines and devices I was connected to I was in no mood to handle and bad news. He started out by telling me the surgery went very well. At this time I was having visions of one of those old movie scenes where the patient would say "Give it to me straight doc, I can take it". Who knows, I might have even said the line myself as I was still a bit out of it from the surgery and pain med's. He then went on to tell me everything. The surgery had gone well. As a matter of fact it had gone much better than expected. He was able to do the reconstruction that I hoped and prayed for. Apparently the chemo and radiation had shrunk the tumor by 99%. According to the pathology and lab reports there was no cancer extended above or below the tumor, no cancer present in the lymph nodes and no cancer visible or detected anywhere else. I thanked him, God, my family and friends who supported and prayed for me and everyone else I could think of. I may have taken a risk in my life but I now knew I had not made a mistake. He went on to explain the Ileostomy was temporary and would be reversed once the surgery has healed enough. The temporary diversion was necessary because you can't simply put the lower digestive system back into service until it has healed so at the time it would be a minor inconvenience to deal with and in a few months I would be back to normal. I now knew I had taken the right path and made the right choices, it was a terrible stress and burden that was lifted and at the time if felt like nothing less than a miracle. If I wasn't tied to all the equipment and devices and had more energy I might have even got up and danced around the room. Maybe I would later.

Within a couple of days I remember looking up as I was laying in bed to see my Oncologist standing at the foot of my bed. This is one incident I don't remember revealing to anyone. He had a strange, sheepish almost apologetic look on his face. He proceeded to tell me he had heard that everything went well, in fact better than originally expected. This is the person who fought me all the way, who told me the surgery could not wait, who told me I should do the more extensive surgery and not hope for a better outcome. The waiting did not cause problems, in fact the tumor had shrunk by 99% at the time of the surgery. It made me wonder if the radiation lasted much longer than they had anticipated as it certainly did not grow again. It also made me wonder if I had the surgery earlier would the tumor not have been reduced then and would the residual radiation and the possible unhealed tissue around the site have been a problem and resulted in the need for more tissue to be removed making the reconstruction virtually impossible ? If I had listened to him and gone for the complete radical surgery without having faith or hope I would be in much worse shape. I can honestly say on that day I had no love for that man. I could have jumped all over him and let him know how I really felt. I could have said to him "I told you so", but I didn't. Maybe it was because I was still too doped up and weak to fight. Maybe it was because it is just not my nature to be that way. As I continued my journey I would find he would not change his ways and we would clash again. Perhaps I did experience a miracle. Perhaps I did have a Guardian Angel or some entity watching over me. Perhaps it was the support and prayers of my family and very dear friends. All I knew was I was alive and would be well and whole again. It was no time to fight but time to be thankful. The total encounter was very brief, probably less than a minute, then he left the room.

My hospital stay was supposed to be somewhere in the range of 7 to 10 days. At least that is what my surgeon told me in our talks weeks before my surgery but things did not go so well. Within the 3 to 4 day period they started me on sips of water for a day. I was allowed two of those small medicine/pill cups of water every hour or two. By this time I was so hungry and wanted desperately to eat but I had to take it slow. By the next day I was allowed to have some food. It had been close to a week since I had any solid food and the IV had been keeping me alive. I had a few bites of a meal. Even though I was hungry I found it difficult at that time to be able to enjoy any food. Shortly after that my digestive system shut down and I would have to start all over again. By this time the Morphine was starting to have some strange effects on me. It wasn't too bad during the day, but at night it seemed to be causing some strange hallucinations and some very weird dreams. That is when I did sleep. I still had my ongoing sleep problems and had more or less 1 to 2 hour naps instead of steady long term sleep. I was finally back on food after a few days and all seemed well for a while. Then I developed severe Edema. I started to bloat and retain water in every place on my body except where it was supposed to go. I eventually bloated up like the Goodyear Blimp gaining 80 pounds or more above the weight I started out at. For those of you with male parts you can imagine how difficult it would be to get around or even in and out of bed when they grow to the size of an NFL football. Within a week my daily walks were impossible. One time I got part way down the hall from my room and my legs locked up. In the worst part of it one day I could not make it out of the door of my room. They were pumping in so many fluids as they were concerned more about my input/output ratio than they were about my ongoing condition. The doctors told me it was more than likely due to the fact I was so malnourished my body tissues were breaking down and leaking fluids into my body. They eventually switched my IV to high protein nutritional and it took a week or so before I got down to a livable, more comfortable condition. Eventually day by day the many tubes were removed one by one and I managed to recover somewhat but it was a long, stressful and bumpy road.

My Ileostomy was not treating me kindly either. Since the most you can get in many hospitals is devices of the 'one size fits all' variety. I had to deal with what they gave me. The pads were too big and the bags did not fit right. Because of all of this I encountered daily leaks. No one there had much experience with Ostomy care as nothing they did seemed to help. They got to the point where they thought taping everything would help. I guess the more tape you put on a device rule was the way they thought would cure the problem. It did help somewhat until you ran into the problem of time to remove a device. All that tape pulling on skin and hair made for a very uncomfortable experience. The leak problem continued well on after I was home for a while. That is until the Ostomy specialist nurse realized what was going on and after several emergency calls finally came up with the proper device that worked. That is it worked for a longer period of time but I still have to keep a close watch to prevent problems and it also contributes more to my lack of sleep problem. I suppose it could be worse. Some people have to deal with them the rest of their lives. Mine is only temporary.

By March 11th it was time to send me on my way. I was finally being sent home to continue my recovery even though I could barely walk any great distances and as I live alone I had to take care of myself the best I could. It was still quite cold outside but most of the snow of the past few weeks had disappeared. My sister and Mom came to take me home and as I had not been home for over 3 weeks and I knew many things in the fridge would have to be tossed I had to stop at one of the local grocery stores on the way home. I could barely make it into the store from the parking lot. Walking was slow and a bit painful and it was very cold outside. I had a better time walking once I got a shopping cart I could lean on and hold me up. I got the things I needed and my prescriptions filled and headed for home. It was good to be home and free again. It was also good to be free of most of the stress, the worry, the uncertainty of would I make it or did I make the right decisions. I knew now I will make it and I did make the right decisions. The recovery at home would be long and slow but the worst was over. At least I hope and pray that it was.

The Journey Continues . . . .

Next up - Part IV - Post Surgery Recovery and Chemo