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Our family beat cancer may 6 2012 1
 

Our family beat cancer may 6 2012 1

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Our family's journey to defeat colon cancer 26 years in the making.

Our family's journey to defeat colon cancer 26 years in the making.

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    Our family beat cancer may 6 2012 1 Our family beat cancer may 6 2012 1 Document Transcript

    • A Family Wins the Battle against Cancer By Patricia and Randy Henniger 26 Year Colon Cancer Survivor Family
    • Randy and Tricia and Jeff and Josh a year or two after our battle tobeat Stage 3 colon cancer at our home in Folsom, CA around 1988. My name is Patricia Henniger. We live in Folsom, California. I have been married to Randy Henniger for 34 years and we have two sons, Jeff (age 31) and Josh (age 29) and I am a cancer survivor. We found out that Randy had Stage 3 colon cancer on March 10, 1986. He was only 30 years old. How could this happen to someone so young? Colon cancer is an older person’s disease! We had been married for 8 years and our boys were 5 and 3. Words can’t describe how we felt. Our world was in chaos. All our plans for the future suddenly put on hold while we prepared for the fight of our lives. 2
    • Randy’s journal entry: 3/11/86: AM: We are getting great support fromTricia’s family, especially Peggy & Sharon and their Mom. Trish isgreat, with a super positive attitude. I can’t imagine not having her tohelp and her family to lean on. For those without support, it must bereal Hell.Patricia: We couldn’t have made it without my sisters and myMom. They were super. They rallied around us and madearrangement for one of them to be there to care for the boys, cookand clean so I could focus my attention on helping Randy heal.Randy’s journal entry: 3/14/86: Trish and I spoke of my death today. Itwas much more difficult for her than me, She said I was the only manfor her ever, so I’ve got to beat this so she is not left alone for the restof her life.Patricia: I can’t accept that we won’t beat this. The only outcome Ican see is for Randy to get better. We must win this battle foreach other and our family.Randy: Journal entry: 3/15/86: Our son Jeff was listening to me talk onthe phone about the cancer and while I was talking he got out of bedand came over to sit on my knee.I hadn’t even thought about him not knowing what was going on. He isso little. He told me: “I know about you, Daddy.” I asked what he knewand he said he knew I was sick. 3
    • I told him that I didn’t hurt and that the doctors had to fix somethinginside me so that I would be able to be with him for a long time and thatit wouldn’t hurt, but I might be a little weak for while and I would need togrow strong again. That was enough for him and he smiled and wentback to bed. He told me on his way out of the room, “I know you aregoing to be OK, don’t worry, Daddy.”Patricia: Joshua doesn’t really understand what is happening. Hejust curls up on my lap and we hug each other and I tell himeverything is going to be OK. I know Randy is going to be fine,he’s not going to die. I only had one brief moment of doubt, a sortof sinking feeling one day a couple weeks after Randy’s surgery.We are at a Don Jose’s Mexican restaurant in El Toro and I hit methat Randy’s might die. It was only a brief moment, less than aminute, and then it was gone forever. I never felt that way again. Ihave always known that we would survive to win our battleagainst cancer. I say our battle, because we were in the fighttogether, equally, as partners.Randy’s Journal Entry: 3/15/86: I went alone to see Dr. Wyle for somesimple pre-op instructions. Trish wanted to go but I assured her I wouldtell her everything the doctor told me. Dr. Wyle had received the resultsfrom the needle biopsies of the cells from my lymph nodes in my groin.They were cancerous. The cancer had entered my lymph system, thebody’s super highway that could transport the cancer to all parts of my4
    • body. My odds had just dropped from 70% change for long termsurvival to only 30 % chance. How can I tell Tricia?Patricia: Randy lied to me about his odds for survival. He told meit was 70/30 in favor of long term survival. I found out today that itis the other way around. Why would he lie to me? We’re in thistogether and yet he kept such an important fact from me. Just tokeep me from worrying? How can I be an effective partner if he isnot truthful with me? The odds don’t matter! I know we’ll workTOGETHER to win the battle against this terrible disease.Randy’s journal entry: 3/18/86: I am in intensive care for four days. Thetime after surgery is really fuzzy, I do remember Trish coming in to tellme that they got all the cancer. I felt lost and alone, but having her bymy side gave me hope and reminded me of why I was putting my bodythrough this trauma. So I could give her my best chance for long termsurvival.Randy: Over the past 26 years since my original cancer diagnosis, Ihave asked many times, “Why me, Lord?” Why am I still alive todaywhen so many others have lost their battles with cancer? I havediscovered my answers through giving back to the cancer survivorcommunity as a mentor and patient advocate, volunteering with theAmerican Cancer Society, Colon Cancer Alliance and GreatComebacks. Sometimes just a quick call or a few emails. Other times itmay be a visit or exchange of postings on the cancer support forums. 5
    • By sharing my experiences as a 26 year ostomate, I am able to help others reach a decision when being asked to undergo a radical surgery to save their lives and remove all or part of their colons. Occasionally it is a deep and long term connection with a fellow cancer survivor and their family. Patricia: Fast forward to today. We’ve won the battle against cancer as a family together. Randy has been cancer free for 26 years. Our boys are full grown and happy, handsome and healthy. We will never forget what has happened to our family… the pain, worry and fear… but those times are behind us now and they have brought us together in a very special way…Trish and Randy and sons are bonded in a special way through overcoming much adversity together. 6
    • Preface I accepted my New Normal about 5 years after surgery forStage III rectal cancer that required a permanent colostomy. I was 35years old had two young sons and a beautiful, supportive wife. It was atthat point that I bounced from bitter to better. It wasn’t any big lightningbolt event. I just missed doing the fun and active things I had enjoyedbefore the cancer. I took up surfing with my sons and began chargingforward like there was no tomorrow, because I had learned that theremay not be. As on survivor put it so well on the Ostomy Support Groupdiscussion board recently:“I realized today that I have finally stopped viewing my life as awaiting room for death. I trust my body not to betray me again. If itdoes, I feel strong enough physically and mentally to cope if I amblessed again with more time.” Five years earlier when I was only 30, I crossed anotherimportant emotional barrier. While still in the hospital a few days aftersurgery that removed a grapefruit sized tumor, my rectum and thelower third of my colon, I decided to vault from victim to victor. Mymotivation was the love of my wife, our boys and our family and friends.They just would not give up on me. They were so sure I would survive,that I just could not disappoint them. So I decided that I would takecharge of my battle to beat cancer. I became general of the army thatwould defeat this disease and beat the odds to survive…only 30%chance of living past 2 years. From my journal:“I have fully accepted the fact that I have cancer and that gettingcured will be painful and troublesome, and that my life may bechanged after it is all over. I can even accept the colostomy 7
    • because it is my best chance for long term survival. My wife,Trishhas been so supportive. She said the colostomy is better than thealternative, BEING DEAD! About having to “poop in a bag.”Trish’s sister, Peggy said, “We love you for who you are, not howyou go to the bathroom.” At around 10 years cancer free, I began to feel the urge to giveback to the community I had reluctantly joined. It seemed right to sharemy experience of surviving cancer and living well as an ostomate withother newly diagnosed survivors and ostomates. I felt good whenothers felt better about their journeys. Maybe just a little easier to makea tough treatment choice that would include an ostomy, or lessfrightening when they woke up after surgery to find a rosebud sproutingfrom their abdomen. Just a bit more hopeful, knowing that if I survived,so could they, no matter the odds. On a small scale, one to one, I wasmaking a difference and answering that nagging question in the back ofmy mind, WHY ME LORD? At about 20 years cancer free, I began getting radical about thelack of public awareness and resistance to talk publically about coloncancer and ostomies. Keeping quiet and sitting on our bowel problemswas only allowing the disease to progress and reduce our quality of life.Since Komen runs and Avon 3 day walks, everyone was talking openlyabout women’s breast health, getting annual mammograms and as aresult, breast cancer death rates fell like rocks. Why was it still tabu totalk about poo? So I volunteered to dress up as polypman at theAmerican Cancer Society’s Relays for Life, did public serviceannouncements to promote March as national colon cancer awarenessmonth, staffed the colon cancer awareness tables at health fairs andconferences.8
    • It was at one of these conferences, the UOAA nationalconference in Reno, just last year where I met Rolf Benirske of GreatComebacks. I had watched Rolf kick field goals for the San DiegoChargers in the 80’s and had heard about his great comeback fromInflammatory Bowel Disease, and earn his position back with the teamand even to be chosen to go to the Pro Bowl. But I didn’t know untillast summer that Rolf was also an ostomate with a cause. The cause ofincreasing public awareness of bowel disease, and improving thequality of life for ostomates through the sharing of other survivorsstories and celebration of their great comebacks.Now I am an Ostomate with a Cause, too! 9
    • Acknowledgements I am certain that I would not be here today, twenty-seven yearsafter discovering Stage III colon cancer if not for my devoted and lovingwife, Patricia and her wonderful family including Peggy and Earl,Sharon and Eric, Pam and John, and others. I lived through the trainwreck that was my body undergoing radical surgery and radiationtherapy thanks to them. I also want to thanks the medical professionalswho cared for my body including Dr. Wyle, Dr. Hazen, Dr, Koons andtheir dedicated staffs. Also, June Booth, who taught me meditation andrelaxation techniques that soothed my soul and nutrition and exerciseprograms that allowed my body to recover quickly and contribute moreeffectively in fighting off the cancer. I am so thankful to our sons, Jeffand Josh, for understanding that Daddy was sick, and never beingembarrassed by my illness, treatment or complications from treatment.I wonder what life would have been like for our family if I had notsurvived my battle with cancer. If I had not been around to participate intheir upbringing and to see my sons grow into such fine men they aretoday. I am sure that a higher power has been at work in my life. Davidand Darchelle Schafer brought the healing power of the Lord to me inthe hospital the day before my first surgery. I did not believe it at thetime, but have come to know that a miracle happened that day. Godheard those prayers and granted me a reprieve from a horrible, painfuldeath to cancer. I have finally come to accept that there was and is aDivine hand in all of this with the purpose of keeping me around andable to help other cancer survivors in their battles to beat cancer. Ihave been carried over many rough spots in my walk and am thankfulto everyone who has lifted me up and carried me through those difficulttimes. I am forever grateful and share my joy with all you: my family,friends, medical professionals, and caring individuals who have joinedmy army of supporters to beat this deadly disease.10
    • Chapter One: Flashback It’s a Friday afternoon in late spring of 1962 in Glendale,California. A second grader is walking home from Mark KeppelElementary School carrying his books. It’s a slight uphill walk alongKenneth Road to Highland Ave at the entrance to Brand Park. Hislungs are stinging from the exertion and also from the Stage OneSMOG alert that kept him and his playmates off the playground atrecess and inside their classrooms. But that doesn’t trouble this youngone as this is the first weekend of summer. Arriving at his home onGrandview Street, he sees that the car is being loaded for the annualsummer getaway trip to Balboa. The bright yellow 1959 Cadillac hasenough chrome to sink a battleship and fins that could keep any fishout of harms’ way. The drive is not a particularly long distance, but the newInterstate freeway (Highway 5) is not yet finished, so we take BeachBoulevard (State Route 39) all the way from Pasadena through all thelittle towns, stop lights, stop signs and orchards until we hit coasthighway in Huntington Beach. Turn left to Newport Boulevard, thenright over the Lido Bridge and all the way down the Balboa Peninsula tothe Sea Star Apartments. The drive time is about three hours, duringwhich time the young man in the back seat of the Cadi is playing withmy toys, making forts, and sometimes dozing off. No one had heard ofseatbelts at this point, and if they had, the rumor was that they kept youfrom escaping a vehicle fire caused by an accident. A decade earlier, they could have traveled on the Red Lineelectric train that ran from Pasadena to the Pavilion on BalboaPeninsula, nearby the Fun Zone and the Balboa Island ferry. The RedLine was shut down in the late fifties. The tracks were pulled up and theright of ways sold off. The era of freedom of private transportation in 11
    • your own vehicle had arrived. Two cars in every garage and a chickenin every pot as one politician said. This annual adventure was the most special time in the youngman’s life. He always looked forward to spending summers at thebeach in Balboa. He and his beach buddies would ride the waves oncanvas inflatable surf mats during the day and roast hot dogs overbonfires on the beach at night. They would search the alleys and trashcans for pop bottles to cash in at the liquor store for a couple of pennieseach. Then enjoy a couple of hours playing pinball games and trying towin prize tickets on the skee-ball games at the Balboa Fun Zone, or aride on the Ferris wheel or the carousel or the bumper cars. Thebumper cars were the little boy’s favorite, along with riding on theBalboa Island ferry. A round trip ride on the ferry cost a dime and therewere always lot of kids on the Island to play with. Sometimes a familywould spring for frozen bananas dipped in chocolate and rolled in nutsfor the entire bunch of kids. No one worried about the little boy or his young friends. Solong as they were home by dark, they had complete freedom to createa wealth of wonderful adventures to share with his family every nightover dinner. After dinner he was back out to the beach for the nightlybonfire and marsh mellow roasting. No cell phones, no pagers, noworries about sexual predators. The little boy and his buddies were freeto do what they wanted, within the limits of what the other responsibleadults would permit. There was no question asked if a neighbor laiddown the law to the kids, or marched them back to their parents forpunishment if they disrespected the adults. They swam everyday in the ocean or in Newport Bay. If theydidn’t have a dime for the ferry, they would challenge each other toswimming across the channel to Balboa Island, avoiding the boat trafficthat did not appreciate having to dodge a bunch of kids getting in the12
    • way of their passage. They went snorkeling and spear fishing in theBay and proudly brought home their catch for Mom to fry up for dinner. Eventually, the family bought a boat and kept it at the Back BayMarina. This really opened up the little boys horizons. Trips to Catalina,San Diego, Baja and the annual Christmas boat parade in NewportHarbor were all extraordinary highlights in the young man’s life. Theyoung man and his sister would spend hours swimming in the NewportBack Bay, scraping off the barnacles from the bottom of the boat,sanding and varnishing the teakwood on the boat and digging in themud banks of the bay for clams which went into the stew pot for dinner. No one knew then of the risks they were taking by spendinghours each day in contaminated waters of the Newport Back Bay, oreating the fish and shellfish that lived in those murky waters. When thelittle boy grew into manhood, he was diagnosed with Stage 3 coloncancer and given less than two years to live. His sister contractedbreast cancer at age fifty and died of complications from cancertreatments at age fifty-five. 13
    • Chapter Two: Diagnosis Dynamite The young man who spent summers in Balboa and the schoolyear studying hard in Glendale, was me, of course. I grew up andmarried a wonderful woman, Patricia. We have two great children, Jeffand Josh. Since we still lived near the beach, our family vacationsusually took us north to visit family in the Central Valley or in NorthernCalifornia. It was early spring in 1986 and we were on a family vacationto Vegas. Jeff was five and Josh was three years old. I had just turnedthirty in June of the previous year. We did not travel in a bright yellowCadillac as the little boy from Glendale had, but rather in a ChevyAstroVan. The Van was customized with big comfortable captain’schairs for all four of them. However, I was still very uncomfortableduring the five hour drive to Vegas. I had been keeping a secret, a potentially deadly secret.Unknown to the rest of my family, I had been suffering severe boweldiscomfort and rectal bleeding for some time. I was too embarrassed totell anyone and too terrified to go to the doctor. On that trip to Vegas,the pain got so bad that I had to tell Trish and ask for help. We triedPreparation H along the way with no relief. When we got home, Trishmade an appointment for me to see the doctor. The doctor thought it was hemorrhoids and referred me to a GIspecialist, He took a biopsy and we waited over a long weekend for theresults. We took our sand toys (a dune buggy and three wheelers) anddrove up the coast to Pismo Beach for the weekend to get our mind offthe waiting. If the technicians in the labs only knew how painful it is towait on their test results, they would hurry up with the results. On ourreturn home we got the devastating news, I had cancer. It had beengrowing inside my colon and had finally penetrated the rectum wall.Stage Three rectal cancer. We were in shock. The feeling ran throughus like an electric shock. At first we could not believe it. We wanted a14
    • second opinion, but the GI said they would come later. From disbelievewe moved to fear, then anger and finally acceptance. How could ayoung, healthy thirty year old have Stage Three colon cancer? Whyme? Dr. Hazen, my oncologist, was a friend of my sister, Gloria andso we got in to see John immediately. He connected me Dr. Wyle, a topsurgeon at UCI Medical Center in Irvine, California. Upon furtherexamination, Dr. Wyle found lumps in my groin and after a needlebiopsy, it was determined that the cancer has spread to my surroundinglymph nodes. The lymph system is the interstate highway of the bodyand connects to all of the other major organs. Cancer cells can travelthat highway and Dr. Wyle was pretty sure that the cancer would showup in my liver in the very near future. Urgent treatment was needed toremove the cancer and prevent it from spreading through the lymphs tothe liver and other organs. The tumor had to be removed immediately! Unfortunately, myrectum to which the tumor was connected would also have to beremoved along with the descending colon. Any surrounding tissue andlymph nodes that looked questionable would be removed duringsurgery. There was some discussion about whether Dr. Wyle wouldtake my prostate, since the result of the surgery would be a permanentcolostomy. A colostomy is the rerouting of the colon to an opening onthe front of body with the rectum and anus removed and closedsurgically. No backside entry would be available for examination of myprostate. It was Dr. Wyle’s recommendation, however, that my prostatenot be removed, since I was such a young man and would want to havethe urinary functionality that the prostate provides. I would probablyrequire a permanent colostomy and follow up treatments of radiationand chemotherapy. Dr. Wyle and Dr. Hazen has a heated discussionabout using chemotherapy treatments post surgery. Dr. Wyle won theargument and I agreed to hold off on the chemo. Dr. Wyle wanted to 15
    • save the chemo for when the cancer presented in my liver, which hewas certain would occur within six months. Dr. Wyle was developing adirect chemo delivery system directly into the liver and was ready toinclude me in his trial, if needed. Thank God, I the cancer did notpresent in the liver. The cancer never presented anywhere else, nor didit recur in my colon. It was just a week from the initial diagnosis to surgery and whata week that was. Our world had been blown up, like a stick of dynamitehad been tossed into our lives. There were pieces of our lives floatingaround in a whirlwind of emotions, doctor visits, biopsies, scans, andtests. Yet worst of all was breaking the bad news to our family andfriends. The saying goes, “you don’t know your friends until the chipsare down.” Our experience confirmed this to be valid. The responses toour news were quite diverse. Tricia’s family immediately put theirworries and surprise aside and rallied around me, Trish and the boys.Peggy and Sharon (two of Tricia’s sisters) took turns staying at ourhome to support Trish and me and help with our boys. They would ask;what can I do for you today? How are you, today? Let me share yourburden. They emotionally and spiritually carried us through this verydifficult part of our cancer survival journey. My side of the family mademy cancer all about how it affected them. They would say things like; Iam so sorry! This makes me so sad? Who will take care of Trish andthe boys when you’re gone. I was too busy at the time to really understand why peoplereacted the way they did to the news, or to appreciate the impact theirchoices would have on our relationships. These many years later, Ihave forgiven them for the selfishness they demonstrated. The pain ofabandonment I felt toward those who acted selfishly is but a distantmemory. I wonder if they have felt any guilt or embarrassment fromtheir actions, or lack of action. Some of my journal entries during this16
    • challenging time provide a window onto my feelings: 3/10/86: Diagnosis of rectal cancer leaves me lost, afraid, andunstable. Dr. Hazen recommends rectum removal surgery andcolostomy which requires “a bag out of my stomach to defecate into.What a repulsive idea! 3/11/86: AM We are getting great support from Tricia’s family,especially Peggy & Sharon and their Mom. Trish is great, with a superpositive attitude. I can’t imagine not having her to help and her family tolean on. For those without support, it must be real Hell. 3/11/86: PM: Trish is down, crying, she is afraid. I feel OK,accepting my situation, but I am nauseous. Trish is sure that her familywill help, this really makes it easier. I must go ahead with all of this andget well for Trish and the kids. If it wasn’t for them, I’d just give up now. 3/12/86: I think I have fully accepted the fact that I have cancerand that getting cured will be painful and troublesome and that my lifemay have to change. 3/13/86: I am hopeful that a colostomy will not be required, butTrish has been so supportive about having to “poop into a bag” andPeggy said: “We love you for who you are, not how you go to thebathroom.” That makes me feel more comfortable with the idea of acolostomy. Damn I feel so good, how can I be so sick? Dr. Wyleconfirmed surgery with permanent colostomy and radiation therapy. Ihave hoped for a different opinion, but I know that I must play the bestodds for long term survival. I’ve got to give Trish and the boys my bestshot at survival. 3/14/86: Trish and I spoke of my death today. It was muchmore difficult for her than me, She said I was the only man for her ever,so I’ve got to beat this so she is not left alone for the rest of her life. 3/15/86: Jeff (our son age 5) was listening to me talk on thephone about the cancer and while I was talking he got out of bed andcame over to sit on my knee. I hadn’t even thought about him not 17
    • knowing what was going on. He is so little. He told me: “I know aboutyou, Daddy.” I asked what he knew and he said he knew I was sick. Itold him that I didn’t hurt and that the doctors had to fix somethinginside me so that I would be able to be with him for a long time and thatit wouldn’t hurt, but I might be a little weak for while and I would need togrow strong again. That was enough for him and he smiled and wentback to bed. He told me on his way out of the room, “I know you aregoing to be OK, don’t worry, Daddy.” 3/15/86: I went alone to see Dr. Wyle for some simple pre-opinstructions. Trish wanted to go but I assured her I would tell hereverything the doctor told me. Dr. Wyle had received the results fromthe needle biopsies of the cells from my lymph nodes in my groin. Theywere cancerous. The cancer had entered my lymph system, the body’ssuper highway that could transport the cancer to all parts of my body.My odds had just dropped from 50/50 to 70/30 against long termsurvival past two years. Dr. Wyle had a peculiar way of communicating.He would draw with a pen on the paper that lines the exam table. Hemade a diagram of what my internal plumbing would look like postsurgery with my rectum gone and the lower third of my colon removed.A small “stoma” would be created on my stomach through which Iwould defecate using a medical appliance called an ostomy bag. Dr.Wyle also wrote down the my odds for long term survival only 30%chance. Before I left the doctor’s office I changed that the 3 to a 7, sothat it looked to Trish like I had a 70% chance for long term survival.Unfortunately, she detected the change and called me on it. She wasfurious that I had tried to deceive her and she made me promise tonever, ever lie to her again. I was afraid she would never forgive me,but I didn’t want her to worry. What a very foolish thing for me to do,and I have learned that Tricia is my partner in all things.18
    • Chapter Three: Treatment Trauma 3/17/86: AM: St. Patty’s Day (Admission into UCI MedicalCenter) I appreciate the information that Dr. Wyle’s staff shared withme about what to expect pre and post op. They told me that therecovery room after surgery would be noisy, but not to worry that isusual. They would wake me every 4 hours to take my vitals. Therewould be med students touring the recovery room and discussing mycase. I would be in and out of it for several days. Dr. went over thesurgical procedure with us. Trish is so calm and confident that shemakes me sure of a successful outcome. Dr. Wyle said that I will havea tube in my nose and drains from my backside, so don’t be alarmed.Peggy and Sharon and Mom are all here for me. They will all be withTrish tomorrow during surgery. Trish will have support during that timeand that takes such a load off my mind. I am able to focus all myenergy on preparing myself for a very invasive surgery and a long roadto recovery. 3/17/86: PM: The prep to clean out my colon is called Go-Litely, but going lightly is not its purpose. I go fast and free witheverything I have eaten in the past year exploding out of me includingold crayons and wood chips. I spoke with a couple of other patients onthe floor. They have it so bad compared to me. I can feel their pain andwish I could do something to help. Maybe after I recover, I can dosomething to help others with their battles to survive cancer. 3/18/86: Surgery Day. Jerry, the RN, ran a nice hot shower forme. It felt so good, I am relaxed and calm. It’s a beautiful day and withthe help of the doctors, my family and friends, I am going to get well!They have given me something to help me relax and it is making me alittle groggy, Trish and Sharon and Peggy and Mom should be heresoon. I am look forward to seeing them and knowing they will be herefor me. 19
    • I am in intensive care for four days. The time after surgery isreally fuzzy, I do remember recovery being noisy, like the nurse said,so that didn’t worry me. I remember Trish coming in to tell me that theygot all the cancer. I felt lost and alone, but a highlight was the spongebath I got. Oh what a delight in the midst of pain and confusion. I alsoremember loads of med students coming by and asking a bunch ofquestions. UCI is a learning center so maybe what they learn about mycase can help someone else down the road. 3/22/86: I can’t believe I’ve been out of it for 4 days! It seemsmore like hours than days. My friend, Michael, stopped by with icecream and he seemed much more relaxed than he has since I told himabout the cancer. I can’t eat the ice cream, but seeing him is nice. But,he keeps focusing on what limitations I am going to have as a result ofthe colostomy. Funny how some people see the glass half empty, otherhalf full. I choose to focus on what I can do, and say the only limitationsare the ones I put upon myself. Trish was with me most of the daytoday. She held my hand and cleaned me up and comforted me. Shesaid she felt better today, that she finally got a little sleep. Peggy saidthat Trish has been real strong through all of this and the only time shelost it was when the nurse call her in the surgical waiting room to say itwould be another 20 minutes and it was over an hour before theyfinished surgery. 3/23/86: My stomach is waking up. Now I’ve got to deal with mynew way of going to the bathroom. Actually, the bathroom comes to mevia this bag attached to my stomach. I am still wearing the post optransparent one piece, large ostomy bag. This thing is gross. It smellsbad and emptying the thing is horrible. This thing has got to go. I calledfor the ET nurse and she brought a variety of ostomy products to showme and together we selected a very comfortable two piece ostomyproduct from Convatec. It uses a flexible 4x4 inch wafer with aTupperware like ring around my stoma. This connects with a small20
    • opaque closed end ostomy bag that tucks nicely below the beltline ofmy PJ bottoms. You can’t even tell I have a colostomy. Thank you,Convatec and thank you, Lord! 3/24/86: Jerry the night RN is really a great guy. He told methat most people feel differently after their hospital stay, but then astime goes on they forget all the special things they felt. I don’t want toforget how I am feeling now. I don’t want to go back to the way ofthinking and doing that put me here. 3/25/86: Trish told me of her conversation with Dr. Wyle rightafter surgery. The tumor was the size of a softball. It was growing wellinside the rectum wall and only a small part happened to penetrate therectum wall and cause the pain that drove me to doctor. That was reallyfortunate because this was an aggressive cancer and would likely havespread out of control through my body and may have becomeinoperable. He said that Trish’s actions of making me see the doctorsaved my life. 3/26/86: Peggy and Earl came up to pick up Tricia and broughtthe boys. They were great! Jeff saw the catheter and really thought itwas something great. He said, “Hey Daddy, you get to pee in bag!”Josh really talked up a storm. He was not afraid of my wounds or theostomy bag. I feel so much better that it is Daddy as usual with myboys. Earl encouraged me by saying I really had a lot of “get up and go”and that made me feel strong, even though I am as weak as a kitten. 21
    • Chapter Four: Cause Curiosity 3/31/86: This sickness has disrupted our lives for weeks nowand is not going to disrupt it any more. The disease (I couldn’t yet saythe word cancer) is gone now. It’s hard to describe the feeling of loveand caring I feel from Tricia, the boys, our family and medical team. Iam thankful and amazed at Trish’s dedication to me and her completecommitment to my getting well. Thank God for her and her family whohave really stepped in to help with the house and kids, Trish and me.They have earned a place in my heart forever! I am becoming curious what may have caused the cancer. Ihave mostly ruled out genetics, as both my parents lived well into their80’s, both sets of grandparents lived into their 90’s and even into their100’s in the case of my Dad’s Dad (Frank aka Pop) and my Mom’sMom (Lillian aka Nana.) No one died from or was reported to have anytype of cancer, except my sister, Gloria. She lost her battle with breastcancer about ten years after my cancer presented. I think back to allthat time we spent together in the waters of the Newport Back Bay andthe fish and shellfish we gathered and ate from those dirty waters. Maybe the poor air quality of the San Fernando Valley duringthe sixties when that little boy was playing at recess and walking homefrom school I remember coming home from school with an ache in mychest that made it difficult to take deep breaths. As a teenager, Iworked around my Dad’s construction sites cleaning up the jobsites,providing labor for the various subcontractors that worked on my Dad’screw building custom homes, first in Glendale, then in Newport andLaguna Beach. Could there have been toxic or cancer causingelements on and around the jobsites? Once I became a mobile teenager, my diet consisted of theoccasion healthful mea at home or at my sister’s house, but mostly fastfood. I was in the best physical condition of my life during high school,22
    • what with dirt bike riding, SCUBA diving, ocean activities, and schoolsports including baseball, football and basketball. I spent mostweekends at Gloria’s, who was a health nut. She was way ahead of hertime with vitamins and supplements, organic produce, yogurt withdigestive cultures, veggie sandwiches with sprouts and whole grainbread. And yet, she died of breast cancer at fifty five years of age. My Dad was a yeller. You always knew when he was upset,because he broadcasted it to the neighborhood, and that was a lot ofthe time. I knew right away that whatever my Dad did for living, I didknow what I wanted to do professionally, but I knew I wasn’t going tofollow him into the family business. There were few times when thingsseemed normal to me. He would always say to me; “Use your brain notyour back, my boy.” I took that advice seriously. My Mom was a peacemaker. She would take on others’ problems and keep quiet about yourown. Moms solutions are to internalize your worries, swallow your pain,and suffer in silence. Those are not the best lessons to learn on how toeffectively deal with stress. June Booth, a holistic nurse and friend ofthe family flew down from Northern California to spend a couple of daywith me days at our home shortly after I returned home from thehospital. June is also a physic. She quickly associated the cancer tosome emotionally traumatic events in my late teens. She felt that due tomy Mom’s example of dealing with stress, I had internalized the painand anger from that time in my life and it had literally turned by bodyagainst itself. Cancer was the result of stress that was not properlydealt with at the time. 23
    • Chapter Five: Surviving the Cure I was in the hospital for nearly two weeks recovering from thesurgery that had removed several pounds of me including my rectumand descending colon, the surrounding tissue in both the front and theback of me. First I had to be sure my incisions healed completely. ThenI had to learn how to manage my colostomy. How could I manage withno control of when and where I have a bowel movement? My newrectum is called a stoma. A stoma is the cut end of my colon turnedinside out, like when you fold two socks together, and stitched down tothe outside of my abdomen right below the belt line. Stomas do nothave the muscles to close off and hold back the stool like a normalrectum. An ostomy pouch is attached to the skin around the stoma tocatch the uncontrolled outflow of feces. It was a challenge to learn tomanage my colostomy, but I kept remembering what Peggy had said”“We don’t love you because of how you go to the bathroom.”Remembering her words helped me get through the embarrassmentwhen my bag would pop off and stink out the room, or have a bowelmovement at the dinner table. I called the home hospital nurse and shecame to our home to help me with a practice called “irrigation.” Itsounded like she was going to help me water the garden, but inostomy-speak, it really is giving yourself and enema through the stoma.You hang a large plastic bag filled with warm water and flow it slowlyinto the stoma. It fills up the colon and flushes out the stool into a largeopen topped irrigation sleeve attached to the Convatec wafer via theTupperware-like sealing ring. After about an hour, my colon is empty. Ican now choose when I am going to have my daily bowel movements. Ifeel an overwhelming sense of relief. After so many things that haveseemed out of my control, I now have control of my bowels again. I wasshocked when my home hospital nurse told me that due to thecolostomy, I would not be able to lift more than twenty-five pounds. This24
    • news was nearly a devastating as the original cancer diagnosis. I wouldnot be able to play with my kids, lifting them into the air and up onto myshoulders. I was in a real funk about this, when one of the boys camerunning up to me and threw themselves at me. I instinctively grabbedthem and lifted them into the air for an airplane ride with no negativeeffect at all. This was one of those limitations that I don’t accept, and soit does not apply to me. The nerve trauma caused by surgery has robbed me of theability to urinate on my own. I must to learn to self cath several timesdaily. This goes on for several weeks, until I slowly begin to regaincontrol of my bladder. My incisions are healed enough to begin the nextphase of treatment, radiation therapy. This is a daily treatment,everyday for 45 days, during which I am bombarded with radiation fromthe front and the back to kill any remaining cancer cells in my pelvisand groin. I get little blue dots tattooed on my hips as alignment targetsto be sure I am positioned on the radiation table the same each day.With the radiation hitting me in the same place every day for thirty daysstraight, I am getting burned badly. Dr. Koons, my radiologist isconcerned that my skin will not hold up to the full treatment regimen.We were able to take a couple of days off to let my skin heal and finallycompleted the treatments about a week late. The result was likesticking my posterior into a microwave oven. It cooked me inside out.By the end of the treatments, I had second degree burns over much ofmy backside and lower abdomen. My prostate got cooked andshriveled up to peanut size. My bladder has been so badly damagedthat I am frequently incontinent. I have ED, Erectile Dysfunction. For ayoung man of thirty with a beautiful wife who both crave lots ofintimacy, we had to try something to resolve my ED. We tried self administered shots into my penis. Getting thedosage correct proved quite entertaining and sometimes painful. Toolittle and my erection would not be firm enough. Too much and my 25
    • erection would last for hours. When the ads for Cialis and Viagra warmyou to see a doctor if your erection lasts for more than two hours, theyare not kidding. It hurts! We tried a big rubber band at the base of mypenis and a suction pump to draws the blood into a simulated erection.Neither the shots nor the suction pump allowed for much spontaneity,so I made an appointment with my urologists, Dr. Rudy and Dr. Youngto investigate a penile implant. This is a device with a two tubes runninginside the penis where the blood normally flows to create a naturalerection and a reservoir with liquid and a squeeze pump in my scrotumto inflate and deflate the tubes in my penis. This sounded painful, butthe doctors assured me that once I recovered, we would enjoy anactive and enjoyable sex life. A couple of days after the implant, Dr.Young, who was over six feet tall and Dr. Rudy who was well under sixfoot came to see me in the hospital. I asked them when I was going toget the stitches out of my scrotum and Dr. Rudy looked down at hisshoes and with a straight face said to me; “Sorry, can’t do it today, I amnot wearing my cowboy boots, which are essential to holding you downwhile I yank out the stitches. I laughed so hard it hurt. Trish and I were supposed to wait six weeks after surgery to besure I was all healed up. We made it to week three and pumped it upand had a wonderful intimate time together. As good as our loving hadever been. Another “glass half emply” limitation eliminated.Unfortunately, penile implants are not designed with a young man inmind. Most are installed in older men and limited use. Mine wore outafter fifteen years. Since then, Trish and I have experimented andfound many ways to please one another without my ability to have anerection. I have had severe attacks of pancreatitis; one put me in thehospital for a week. As a result, I had my gallbladder removed. I havehad my urethra bored out with frequent urinary infections. I have beenlosing the feeling in my feet and weakness in my legs. However, I am26
    • battling back with daily Yoga at Biram and bicycle rides with Earl. I takemeds to help with digestion and wear urinary pads. When I start to feelsorry for myself with these issues caused from the cancer cure, Iremember what Trish told me: “It’s better than the alternative, beingdead.” Amen! I have an important message for the medical community andothers deciding on their cancer treatments. Choose an appropriatetreatment plan for your specific circumstance. Don’t rush to throweverything you’ve got at the cancer, just to be sure you get it. I havewalked with many new cancer survivors through their diagnosis andtreatments, and frequently their docs will want to use multipletreatments in combinations that may not be strictly necessary. “Bettersafe than sorry”, I’ve heard them say. In my experience, excessivetreatment can reduce long term quality of life. The challenge is tobalance the treatment such that is it aggressive enough to defeat thecancer, but not overly aggressive to reduce long term survivors’ qualityof life. Early in 2000, I participated in a Hoag Cancer Center (NewportBeach, CA) feedback program funded by the NIH (National Institute ofHealth.) This pilot program brought cancer survivors together to providefeedback on quality of life issues. This data was cataloged andanalyzed to give the medical community feedback on the long termeffects of various cancer treatment therapies. In the panel discussionswhich I participated in, chemo-brain has worst impact on quality of life.Loss of short term memory and difficulty in making previously simplelogical decisions were almost universal for patients who received thechemo cocktails being used prior to 2000. Many of the survivors in thestudy had only Stage 1 and Stage 2 cancers for which chemo may nothave been necessary. 27
    • Chapter Six: Why me Lord?Occasionally, I find myself asking, “Why me, Lord?” Why did I have togo through this? Why was I so unlucky. When I find myself askingthose questions, I quickly remind myself that going down that road is acomplete waste of whatever time I have left on the planet. The negativeenergy that comes from those thoughts pollutes my life. Much thesame way as the SMOG in the San Fernando Valley in the 1960’spolluted the lungs of young elementary school students who couldn’t gooutside at recess to play. Or swimming in the contaminated waters ofNewport’s Back Bay polluted me and my sister. However, my experience in beating cancer and surviving fortwenty-six years has made me uniquely qualified to help others facingthe many challenges in their walks as cancer survivors. After about fiveyears post diagnosis and treatment, I began to feel the need to giveback to the cancer survivor community. I had made it past the firsthurtles; two years cancer-free, and five years cancer-free. I began helping the Orange County chapter of the AmericanCancer Society with fundraising events, cancer awareness events, andcoordinating Relay-for-Life events at the local high schools and collegecampuses. Some of the most moving moments in any cancer survivor’slife is walking the victory lap with all the cancer survivors at a Relay forLife event. The pride and joy or having beat this awful disease andsharing it with hundreds of others is incredible. I was so proud whenthe Orange County Chapter of the American Cancer Society awardedme with their 2005 “Most Inspirational Colon Cancer Survivor” Award. My most rewarding activity is as a buddy and mentor to newlydiagnosed cancer patients. I was told by other survivors, especiallythose newly diagnosed, that by just showing up and spending time withthem, they are“hope-filled”. I am a living example that the odds don’tmatter. They tell me they feel that if I could beat the odds and survive28
    • so long, so can they. LeeAnn was suffering a recurrence of her cancerwhen I began visiting her at Saddleback Hospital in Mission Viejo, CA.Her spirits were lifted by my example and I sat with her and we talkedabout all the things she would do when she beat the cancer. Her battlewent on for several months and she was never able to go home. Butthe hopefulness she displayed during our time together made what littletime she did have much more pleasant. It was almost as though sheexperienced in her mind many of the things we had discussed for herfuture. Her passing was peaceful and without pain. There was a senseof joy and peace in the room at the end of LeeAnn’s battle. I don’t knowwhy I made it and LeeAnn did not, but I can say that the time LeeAnnhad remaining was of a higher quality and more joy-filled due to herbelief that she was going to win the battle. She never gave up fighting,right to the end. I have tremendous respect for her and her family. It was then I began attending the cancer survivors’ supportgroup meetings at my local hospitals. I was developed a workshop toassist cancer patients and their families move from Victims to Victors,in honor of LeeAnn’s triumphant spirit. Move from victim to victor. Dont play the victim. Yeah, itsrotten, it sucks, its scary, it hurts, its depressing, and none of thosefeelings are going to help me get better! Coming to the fight of my lifewith a victors attitude removes me from the "why me Lord" spot andallows my body the extra energy it needs to fight off the cancer.Sometimes, I cant get to the victory lap by myself, I need help. Thatswhen having supportive and positive family, friends and medicalprofessionals comes in. They are members of my army, my troops thatrally around me and lift me up when I dont feel like I can go on. Win orlose, Id rather believe I am going to survive and live as long and aswell as possible, than to lie down and die. Move from victim to victor. Be sure to heal your "whole" self. We are more than just ourphysical body that the cancer is attacking. We are body, mind and 29
    • spirit. When we marshal resources for the battle against cancer, wemust be sure to include what we need to win at the physical, emotionaland spiritual levels. When I was battling cancer the doctors and medicalprofessionals pretty much took care of the physical part. However, backthen there was little nutrition or physical activity guidance. I had to seekhelp outside the system for good nutrition, vitamins, supplements and aproper exercise routine. On the emotional support side, seek out a mentor. Someoneyour age, gender and similar life situation who has already experiencedwhat you are going through. On the spiritual side, I had everyonepraying for me. I gladly accepted spiritual assistance from theMormons, Catholics, Buddhists, Hindus, and Jews. My door was opento anyone who wanted to pray, chant, anoint or sprinkle Holy Waterover me. I had my chakras aligned, my aura cleansed and anythingelse anyone suggested. I found my connection to God as a result. What I have finally come to understand in answer to thequestion Why me Lord, is that by going through my battle with cancerand winning, I am now uniquely qualified to offer hope, encouragementand support to others fighting for their lives. I am energized with eachconnection I make through my volunteer activities and believe with allmy heart that there is a greater purpose to my continued cancer freelife. Giving back is that greater purpose and one that I am uniquelyqualified to do due thanks to my experience in battling and beatingcancer. Live a healthy lifestyle. Exercise 30 minutes every day. I prefera surf session daily, but walking, biking, swimming or your favoriteactivity that elevates the heart rate (aerobic) for at least 30 minutes.Good nutrition is essential to maintaining good health and cancer freeexistence. Enjoy five servings of fresh fruit and veggies daily. Reduceyour consumption of red meat and fatty, rich foods. Reduceconsumption of alcohol, eliminate smoking, and unhealthy30
    • environments. Reduce stress: Schedule a quiet time each day to just relaxand let you body idle, change jobs if you have to, change where youlive, whatever it takes. I believe that stress is one of the major causesof cancer, especially if you are not training on the proper ways to dealwith stress. Don’t internalize, let it out, but a yeller, like my Dad, not apeace maker like my Mom. Surround yourself with positive supportive people: Create anenvironment of love, happiness and joyous people and circumstances.In such an environment you are being charged with positive emotionand energy. If you find someone or something is draining you of yourjoy, choose not to be around them. Let them know that your continuedhealth is most important and if they cant make a positive impact in yourlife you will be forced to disconnect from them. This is tough butnecessary, even and especially with family. You might be surprised attheir response; it might even allow them to see a better way of being forthemselves and for you. 31
    • Chapter Seven: Others’ Outcomes I have been privileged to walk along side many other cancersurvivors in the past twenty-six years. Some, like me, are still walkingtheir paths here on earth, while others are resting in the comfortingarms of their god. Success in a cancer survivor’s journey is not definedstrictly in terms of years of survivorship. It is a combination of quality oflife, time with family and friends, pursuit of things we are passionateabout, happiness, mindset and more. Two survivors’ stories help meillustrate this point. Lillian is a nurse at CHOC, a leading children’s’ hospital inOrange County, CA. She is a dedicated surgical nurse who in thatcapacity has cared for many cancer patients using her uniqueknowledge of what it means to fight cancer. Lillian’s journey as acancer survivor began with Stage 3 colon cancer. After surviving forseveral years, the cancer returned in her liver. After surviving anothercouple of years, the cancer returned in her bones. It was at this pointthat our paths crossed. I was asked by Jeannie Moore of the ColonCancer Alliance to contact Lillian as her “cancer buddy.” Lillian and Icorresponded via email and Facebook for several months. Her attitudeis incredible, her will to keep on fighting after three cancer recurrencesinspires me. Lillian was on continuous sessions of chemo during whichshe was pretty much on her back, returning to work and normalcybetween chemo sessions. It was during one of those chemo breaksthat Lillian asked if I could teach her and her family to surf. Surfing wasone of her“bucket list” items and I was more than happy toaccommodate. We manage to stuff her somewhat chemo-bloated bodyin one of my wetsuits, and suited up her two daughters and son. Wegrab several of my soft top beginner boards and head to BuckaneerBeach in Oceanside for an afternoon of surfing. What a fun time wehave. Lillian enjoys watching all of her kids catch waves, and when it32
    • comes to her turn, she is just too tired to try it herself. Her family and Igather around her and we all walk out into the surf to enjoy some timetogether in the water. Lillian passed recently and I am so thankful forour brief time together. There were times on her journey, like the daysurfing, that provided Lillian great joy and I choose to believe theunpleasant, painful times of her journey were offset by times of joy. My sister, Gloria, noticed a lump in her breast while she wascruising in Mexico. Upon her return to the States, she visited her doctorwho did a mammy and told her there was a lump. A needle biopsyconfirmed the lump was Stage 4 inflammatory cancer and had spreadto the surrounding lymph nodes. Her oncologist recommended amastectomy followed by chemo and radiation. She elected for chemoonly with no surgery. It was Gloria’s choice to take less radicaltreatment option. We won’t know if that was a mistake, as she passedaway five years later. Once a cancer survivor chooses a path there islittle time for reflection. Playing “what if” mind games only draws downour limited energy and resources, taking us away from fighting andwinning the battle with cancer. I was given a similar choice oftreatment plans. I chose the most radical which promised the bestchance for long term survival and I am still here and my sister is not. Gloria’s journey was complicated by her desire to spare ourfolks having to worry about her as she went through round after roundof chemo and radiation treatments. I remember Super Bowl Sundaywhen the Forty-niners are playing the Bengals with Joe Montanaleading the Niners. It was down to the two minute warning in thesecond half with Joe and Niners down by ten points. Joe leads theNiners to a victory with two back to back touchdowns in the last twominutes on the game. We went crazy! Yelling and screaming and Ilooked over at Gloria who was clearly in severe pain and distressedfrom all the loud noise around the room. Her arm was swollen to threetimes its size due to the tumors in her lymph system blocking the 33
    • circulation of fluids in her check and arm. It was then I knew that shehad passed the threshold of quality verses quantity of life. She nolonger wanted to be in pain, she just wanted an end to her suffering.Her journey went on for another two years, however. She eventually tells our Mom, but they agree that the newswould be too great for our Dad to bear, so they keep the truth from him.So much energy was spent trying to keep that secret: energy thatGloria could have used to fight for her life. The memory of that terribleday when Gloria lost her battle and we had to tell Dad that she wasgone will be with me forever. The rest of the family had five years ofpreparation for this day. We had walked with her as her body wasravaged by the disease and her condition declined. How my Dad didnot see it, I just can’t fathom. So we were somewhat prepared for herpassing. Dad was not given that time to come to terms with hisdaughter’s illness and the news of her passing hit him hard. Hesurvived the initial shock, but lived only a year or two in declining healthand died of a stroke. After seventy years of marriage, my Mom’s healthdeclined rapidly after Dad’s passing and she died of what I believe wasa broken heart less than two years later. What was learned from walking with both Gloria and Lillian ontheir journeys? First, take the most aggressive treatment plan availablefor the greatest possibility of long term survival. Second, know when it’stime to say “no more” to continued treatments that may sustain life atthe cost of any quality of life. Finally, don’t waste valuable energy tryingto protect family and friends from what is happening to you. Let theminto your battle, allow them walk with you and lift you up with their loveand positive energy. Gather those around you whose energy adds toyour strength and distance yourself from those who draw energy fromyou. You need all you have to win the fight for your life. No one hasmore at stake than the person fighting cancer.34
    • Chapter Eight: Journey’s Joy Whether we have twenty-six years or twenty-six days, fill yourjourney with joy, love and positive energy. None of us have a guaranteeof tomorrow. We assume there will be a tomorrow for us but all wereally have is today, right now. Am I making the most of this moment?Am I doing everything I can to provide my entire being with a healthyand happy environment? These were the thoughts and discussionsaround my house as the months and years passed and I did not die. Ihad been climbing the corporate ladder. I had been making success inthe tech industry my primary goal while making lots of money, andreceiving numerous awards for the highest achievements in my field.These no longer held the value they had previously as a cancersurvivor. Time with my young family, reduced stress and time withthose who really love and uplift us were the things I now found vitallyimportant. We decided to sell our home in Mission Viejo, quit my tech jobat Western Digital in Irvine and moved to Folsom in Northern Californiato enjoy our lives together with Peggy and Earl and our families. Slowerpace, less stress, more time to coach the kids in soccer, join the PTA,take long walks among the oaks that filled the hills around our home inFolsom. We still needed to eat and put gas in the cars and pay the bills.Backing off on the career side was less stressful, but strugglingfinancially is just as stressful. Be careful to watch that balance or workand home time. Enjoy every day and celebrate the little things thatbring you joy. Stop and smell the roses when you pass then on yournext walk or when puttering around in your yard. My journey’s joy comes from the moments together with familyand friends, a quiet walk along the beach or a super fun surfingsession. Walking with other cancer patients on their survivor’s journeyis a blessing to me. My wife’s incredible beauty and strength fill me with 35
    • joy. The fathomless love and devotion of my family and friends makemy journey joyous. The love of my sons which I have been blessed tosee grow into such fine, wonderful men. Memories I would not havehad I lost my battle with cancer include Josh getting a specialrecognition from the soccer ref when he helped a member of theopposing team who had been tripped and fallen and was crying. Jeffremaining alone in our white water raft after the rest of us had beendumped out when we hit the rock in the middle of Troublemaker rapidson the South Fork of the American River.36
    • Chapter Nine: Living Well In my 26 years as an ostomate, I have found release and reliefin humor. If I cannot laugh at myself, I am lost. I may spend valuableenergy in a vain attempt to hide my change in plumbing. I may turnfrom activities I love because of the potential for embarrassment. I mayhide from those I love and care about, remaining separated from thelove I crave and deserve. I have an ostomy, and I am still a whole,valuable and entirely normal person. As I continue my journey throughlife as an ostomate and cancer survivor I am constantly changed by myexperiences. Changed in some ways physically, but I am still wholeand complete. When faced with significant challenge in our lives, weare changed. Some change is positive some not. The physical changeto our bodies from surgery and treatments can be unpleasant andinconvenient. But we are limited only by what we make up about oursituation. If we make up that life with an ostomy is not worth living, wewill likely live into that belief. It becomes our truth. We may be changedemotionally, but we can choose to persevere and grow stronger, with athicker skin to ward off hurtful comments and pass throughembarrassing situations. We can gain more faith than ever before. Itruly believe there is a higher power at work in our lives, and that thereis a special purpose for each of us to fulfill. A purpose that each of us isuniquely qualified through our experiences to be of comfort to otherswalking similar paths, as others are of comfort to us. As a child, I thought I would live forever. Mygrandparents lived well into their 90s and even 100+ years old. I hadalways assumed I would enjoy a long and healthy life, as they did. Theydid not think much of the medical community. I was brought up thinkingthat if I just live a good life and have faith, all would be well. But at 30years of age with a wife and two young sons, I was told I had less than 37
    • a thirty percent chance of living another two years. That prognosisrocked my world! Where did the assurance go that all would be well if Idid my part faithfully? It flew right out the window of the doctor’s office! My best hope for survival was radical surgery toremove the lower portion of my colon and rectum, leaving me with apermanent colostomy. What a revolting and disgusting thought! Howcould I ever be attractive to my wife? Would we have the intimacy wehad so enjoyed? Could I play with my sons like a “normal” fatherwould? Could I continue in my profession and provide for my family.What if I did not survive, and if I did, would life be worth living? I hopethat through your life experiences with a touch of humor and a dash ofgood will, your answer will be the same as mine, HELL YES! Most adults have about 4 feet of colon (large intestine) whichprovides a connection between our small intestine and our rectum. Our“poop shoot” where our digestive waste material (the part of what weeat that does not get absorbed by our small intestines to fuel our body)is formed into stool and eliminated during bowel movements. For thosewith bowel disease like Ulcerative Colitis, Inflammatory Bowel Disorderand colon cancer, there are many problems with this “factory original”plumbing. Problems include intense pain and abdominal cramping,chronic infections, frequent bowel movements, constipation andblockage (believe neither one is pleasant), loose stools, explosivediarrhea and even death. For those of us with these issues, a change inour plumbing is required. In my case, due to a large rectal tumor and inorder to save my life, I had the lower portion of my colon removed,along with my rectum, leading to a permanent colostomy. Please seeillustration below. I was in the hospital for nearly two weeks recovering from thesurgery that had removed several pounds of me including my rectumand descending colon, the surrounding tissue in both the front and theback of me that contained the impacted lymph nodes, and any tissue38
    • that looked suspicious to my surgeon. Cancer surgery is NOT a healthyweight loss regimen. While in the hospital I was taught how to managemy colostomy. A pouch attached by a Tupperware-like ring that seals inthe smells from my newly place rectum on the lower left side of myabdomen. The “stoma” as my new rectum is referred to, is really justthe cut end of my colon turned inside out, like when you fold two sockstogether, and stitched down to the outside of my abdomen right belowthe belt line. My stoma does not have the muscles to close off and holdback the stool, so the pouch is attached to catch the uncontrolledoutflow. Yeah, that’s pretty gross, I know, but hey, it’s better than thealternative, which for me could well have been a short life andunpleasant death to cancer. As my sis in law says, “We don’t love youbecause of how you go to the bathroom.” She told me that early on inthe diagnosis and treatment phase of our journey to beat cancer and ithas stuck with me to this day. Thanks, Peggy! Learning to live with and manage a shorter thanstandard colon without my own way of holding my feces in has beenquite an experience. I used to get embarrassed when my bag wouldpop off and stink up the room, or have a bowel movement in the middleof a business meeting. But now, after 26 years, I have found greatproducts (see following chapter) and ways to take control of my bowelmovements and have control over my life again. A memorable story from my many funny experiencesas an ostomate was the day I had to change my bag at work in theupstairs executive wash room. It was a bit of an emergency situation.My bag was about to explode and if I had tried to navigate the stairs tothe general employee restroom, I might not have made it. So I totallystick up the executive wash room and just as I’m finishing up, ReggieJackson walks into the restroom. Reggie was our corporate “pitch man”to get us into key accounts using his connections and public image. Hesaid something like, “Oh man, it smells like somebody died in here!” 39
    • Well, many a comeback ran through my mind. Like maybe, “It maysmell like it, but I didn’t die, I am still here, so just live with it, buddy.” Ormaybe, “Hey that’s the smell of life, not death.” But instead, I justslipped out quickly with a comment like, “Yeah, that guy should haveused some air freshener.” Later on, when Reggie and I had theopportunity to travel with Reggie on a trip to a big client, DellComputers in Austin, I was able to come clean with him about having acolostomy and being responsible for sticking up the executive washroom. We had a good laugh about it and Reggie opened up about hisconcerns about having a colonoscopy. You never know what situationwill present an opportunity to encourage someone to be screened forcolon cancer and save a life, but when the opportunity arises, take it! I want to encourage people to talk about issuesrelated to bowel disease without embarrassment, leading to earlydiagnosis of issues providing better outcomes. I literally “sat” on myissues for more than a year because I was too embarrassed and afraidto speak to anyone about it. I kept a secret, a nearly fatal secret. If Ihad only felt comfortable talking about my issues and others had feltcomfortable talking to me about getting screened, I may have had amuch easier time in treatment and post-treatment. There are provedbenefits to having open, honest dialog about previously “unspeakable”issues. Take breast cancer as an example. Twenty years ago breastcancer killed the majority of women who contracted the disease.Twenty years ago it was unacceptable to talk about a woman’s breastand to suggest self examinations was taboo! Now, twenty years laterearly detection of breast cancer, self exams and yearly mammogramslead to early detection and treatments which have increased breakcancer survivorship to more than 50%. Breast cancer is no longer adeath sentence. Why? Because it is now OK to talk about it. It is allover the press and there is a public awareness event going on regularlyall over the county and the world. We must get colorectal cancer and40
    • bowel diseases to this same level of acceptability and publicawareness. Colon cancer is actually one of the few preventablecancers. Find the polyp, remove the polyp and prevent the cancer. I have hiked to the top of Mt. Whitney (elevation 14,495 feet)twice as an ostomate. I teach surfing www.surfrandy.com. I swim, bike,practice Bikram hot yoga and live a very active life. I volunteer with theWounded Warriors program to assist in the rehabilitation of ourreturning soldiers, sailors and marines. I am a big brother in the BIGSprogram for sons of active service families. I do not accept anylimitations on my life due to my ostomy. There is nothing I did before surgery that I cannot dopost-op with an ostomy. On the way up Mt. Whitney, I actually had anadvantage of convenience over the rest of my hiking party. They had tobring extra gear to pack up and pack out their waste, while I just did myusual ostomy thing. Sometimes it pays to poop in a bag. I know several world-class swimmers with ostomieswhose race times are as good or better than before surgery. I can be inthe water for hours with complete confidence. I have had a fewaccidents. One time when I had been in the ocean a long time and notwearing a wetsuit, I get took a pretty bad wipe out off my surfboard. Icame up coughing and spitting out water and I say my ostomy bag gofloating by. Did you know they float? Hey, fish go the bathroom in theocean, so what’s a little more of mine going to hurt? I’ve learned tocarry extra supplies in my beach backpack and I am amazed at howeasy it is to apply ostomy products under a towel. I remember another time when I had surfed all day.When I finally got out and striped off my wetsuit to shower, I found mycolostomy bag down around my ankle. Yikes! I was in the publicrestroom at La Jolla Shores and I got a couple of funny looks and acomment or two. I could have gotten embarrassed and flustered, but Ichose humor instead. I said something like, “ Hey, how did that get into 41
    • my wetsuit?” So what’s the big deal anyway? I enjoyed a full day orsurfing. So what’s a little poop in your suit? I really loved that wetsuit! There is a refining of the soul that one experiences throughsignificant trials, whether it’s surviving a near-death experience, battlingback from a devastating injury, battling cancer or coming to grips withlife as an ostomate. In my brokenness, if I am really honest with myselfand others, I separate the really important stuff from the insignificant.With courage and in love, I discard the insignificant and gather theimportant elements together to frame a new way of being. A better,stronger and simplified life based on the strength gained in the crucible.I made it, I survived and I am thriving as a result of my life experiencesand the trials along the path. I now know that I can overcomeobstacles. I am more than my problems, I have risen to the challengesand overcome them. I am a successful survivor and in doing so I’vegained confidence in myself and those in my inner circle of supporters. An unfortunate misunderstanding caused me a lot ofgrief while recovering from surgery. I thought I heard my ET nurse (nowWOCN) say that I would never be able to lift more than 25 pounds as aresult of having a colostomy. This was totally devastating as I hadenjoyed working out in the gym, tossing our sons around and generallyrough-housing to the distress of Trish and our furnishings. As it turnedout, the weight restriction was only related to my recovery period! Ijoyously discovered my error about six months after surgery when oneof the boys came running to me and without thinking grabbed him upand swung him around over my head. It just goes to show the power ofwords and how acceptance of those words can manifest intounnecessary limitations. I had wasted month of rough housing with myboys because of a presumed limitation. I am happy using quality Convatec ostomy products. I use atwo piece system that is composed of a moldable wafer that attachedskin around my stoma and a closed end pouch that attaches to the42
    • wafer via a “Tupperware type” ring. For a short video of the products Iuse and also a brief video on irrigation, please go to my YouTUBEchannel at http://youtu.be/Qy9S03sHggc Recently, I’ve been privileged to get a peek behind the curtainto meet many of Convatec’s sales, support and management folks. Myconnection to them came in August 2011 at the annual UOAA (UnitedOstomy Associations of America) meeting in Reno, NV. I was asked bythe Colon Cancer Alliance, an online cancer survivor community andadvocacy non-profit, to attend the UOAA conference and do “boothduty” at their table in the exhibit hall. It was a blast! Trish got to go withme and CCA paid for the hotel and meals and gas to get there andback home to Folsom. An added plus was that it was held the sameweek as the Hot August Nights hot rod and classic car exposition whichI enjoyed. A couple of booths over from the CCA table, Convatec had alarge booth and a section was dedicated to Great Comebacks, aprogram that Convatec sponsors with Rolf Benirschke, the former placekicker for the San Diego Chargers football team. Great Comebackshighlights the stories of ostomates from around the country who arewilling to share their comeback stories. Rolf’s story is one of myfavorites. For more info go to www.greatcomebacks.com. Trish wasmaking the rounds at the conference, collecting swap and met Rolf.She runs back to the CCA booth and drags me over to meet Rolf.Within minutes we connect and Rolf insists I submit my greatcomeback story for consideration. I am recognized as the bestcomeback story submitted in the Western Region in 2011! Convatecflies Trish and me and Sasha (my service dog and four legged child) toSalt Lake City, all expenses paid for the awards ceremony. I am askedto speak to a group of fifty plus WOCNs (Wound, Ostomy andContenance Nurses) to tell my comeback story. They loved hearingfrom me, a seasoned ostomate, as the WOCNs typically engage withthe new ostomate in the hospital and shortly after discharge to help 43
    • them learn to manage their ostomies. But then don’t hear back frommost of us after that initial period. Like a mother bird sending their littleones off after learning to fly. They hope for the best, but seldom learn ofthe results of their nurturing. I am continually amazed and inspired by other otomates’stories, blog posting and forum discussions. There are a number ofgreat online and face-to-face opportunities to engage with otherostomates including www.inspire.com, www.uoaa.org,www.ccalliance.org, www.cancer.org, www.couragetoshine.com, andothers.A Concerned Mom Post: My son is 19-years old and he will soon have a colonremoval surgery. Of course, we would like to help him to ease therecovery process as much as possible. Unfortunately, from our ownexperience, we know that sometimes, what helpers consider as a help,makes things harder for the ones who need this help. My question foreveryone who went through a surgery: what did you want your familyand friends to do and what did you want them NOT to do during yourrecovery? Thanks. Reply: His personality is what will determine what he will needfrom you and the fact that you are asking tells me you will be sensitiveto his needs. I have three daughters, none ostomates, but all threeneeded completely different involvement from me with theirpregnancies. Just be encouraging, positive, and treat him like the manhe is. If he needs to yell (or cry) occasionally dont freak out. Life is notfair, as he has already learned, but it is so wonderful if he can learn tolook for the wonder. What YOU probably need is to be encouraged thathis life is about to improve after a hopefully short recovery andadjustment period.44
    • Reply: Hello and thank you for your post, Its great that you are reaching out in advance of your sonssurgery to gather information and get input that will aid him in hisadjustment to life with an ostomy. My experience as a young person(age 30) coming to grips with living with an ostomy and what was mosthelpful from those who loved and supported me are: 1. Dont make me feel that I am any different a person that Iwas before surgery (because I am not!) 2. Encourage me to do all the things I love to do, as an ostomydoes not make me any less able to live a full and active life. 3. Help me deal with those embarrassing moments as anostomate with humor (ever try to match your bag with your shoes?) 4. Tell me that you love me for who I am, not how I go to thebathroom. 5. Remind me when Im struggling with my ostomy that itsbetter than the alternative (in my case, being dead!) Please call, post or email anytime! Mom Post: Thank you all for your responses. They are reallyhelpful for me. My biggest problem is that after having UC for almost half ofhis life, my son doesnt really know how to feel himself without checkinghow far away the nearest restroom and how many people are waiting inline. Reply: UC was my diagnosis too, I would still get that panickyfeeling sometimes, and it took awhile to realize I did not need to bechained to the toilet any longer, a whole new world will open up for him,like most things in life it is a process. You will have to let it happen andsupport him through it. When he is ready I highly suggest talking toother young people with ostomies, this will really help him, when he isready. 45
    • Mom Post: Thank you again for the advice. Im planning tointroduce him to this group first. This generation is doing better"virtually" any way.An Issue of IntimacyPost: How do you regain a normal relationship again with your spouseafter ostomy surgery? I had my surgery in July 2011 and still do notshare a bed with my hubby. Have tried sex twice and it wasuncomfortable both times. Reply: Why was it uncomfortable? Be honest with yourself anddetermine if it was something new after what’s happened to you. Thiswould include wondering if you are going to have problems with yourpouch, will it leak, will it be a disaster, will it be in the way? If that is theproblem, try to relax about it. Empty before you become intimate, andsometimes it is an inconvenience to do that. It’s not like on TV, it is hardto be spontaneous with an ostomy. Some companys produce a smallpouch that is appropriate for intimacy. If the equipment is not theproblem, is it because you are not feeling like a desirable woman? Doglasses make a woman less desirable? NO! This is something that youand yours need to convince yourself of. You are still a woman with thesame cares, feelings, and desires as before. Your body is now rid of adisease that was hurting you. Your ostomy should give you a freedomthat you have not known for a long time. Reply: Check out the OstomySecrets website and newsletter. Ihave a couple of wraps from them, and you will be pleased with howhelpful they are for both everyday use and intimacy. They also havesome neat female and male underwear and such designed for us folkswith ostomys... Reply: Thank you for posting such an intimate issue. Thattakes real courage! With all the great ideas in the many posted replies,I dont know how much I can add from a male ostomates perspective,46
    • but here goes. At age 30, I had surgery to remove a large rectal tumorand as a result have had a permanent colostomy for 26 years. Thesurgery and radiation treatment also caused permanent ED. My wifeand I had enjoyed a close, intimate relationship before the surgery, butfound many challenges reconnecting after. Fortunately, she nevermade me feel that I was less desirable because I had a pouch, but theED was an issue for me. I didnt feel like I could perform and thisincreased my anxiety and reduced my desire for intimacy. I decided tohave a penile implant a year after the cancer surgery and that provideda much needed boost to my libido. We have enjoyed 25 years ofintimacy since then and even after the implant failed about 10 yearsago, we have enjoyed discovering together new ways to please oneanother. Ive made it sound simple, but it was not. There were lots oftears, anger (mostly from me), embarrassing and challenging moments,but we always worked through them together. If the "together"connection is missing for you, I would suggest getting someprofessional counseling as a couple. Some issues are just too big toget over on your own and there is nothing wrong with seekingprofessional help. Healthy survivorship is an art. Like all art there is no right orwrong ways to do it. Each of us are unique and our uniquecircumstances will dictate our own best expression of successfulsurvivorship. We are living altered lives as ostomates. We may facediscrimination or isolation because of ignorance of our condition,abilities and lifestyle. A good survivor has been described as someonewho has learned to integrate the reality of the disease into theirexistence during and after treatment. Below are some greatsuggestions and thoughts from Jolene Rowe a licensed Clinical SocialWorker and Social Work Supervisor at H. Lee Moffitt Cancer Center 47
    • and Research Institute. More info athttp://www.ccalliance.org/library/chats.html When our feeling and needs are not expressed, it is easy tomake stuff up about why things are going the way they are or the waysomeone is reacting to you. Expressing your feelings and concernsopenly will give those around you a chance to let you know what reallyis going on, not what you might make up in the absence of good dialogand relationship. Adopt a participatory practice of being a part of getting well.Utilizing each of our own personal strengths and bringing around us astrong network of support in those areas where we recognize our ownpersonal strength is lacking. Invest in changes in lifestyle as neededand work to regain a feeling of control Seek the information you need for treatment decisions andeven more so after treatment is completed and you are post treatmentand feel like you are on your own, after having been surrounded bymedical professionals during active treatment. Be sure all informationyou act on is reviewed and discussed with your medical professionalsto ensure its valid and correct for you. Learn to negotiate and identify you own personal goals andlimits that you will accept from yourself, your family and friends andyour medical professional. There may be trade off caused by changesin your physical condition, emotional state and financial situations. Cognitive techniques are based on the way we think aboutwhat is happening to us or has happened to us. If we blame the illnesson ourselves for not taking better care, we may grow depressed byguilt. Or even worse, to feel as though we deserve what has happenedto us. That’s just wasteful and hurtful and of no value. Being able to reframe how we look at things to view them in amore positive light. Affirmations like, I deserve good care, I can take48
    • good care of myself, I can get through this are all positive and helpfulstatements to make to yourself. Visualization of a favorable outcome to a treatment, or that anaction we need to take will have a positive outcome will help get usgoing, reframe our thoughts and set aside our fears that may hold us incheck and not take actions we should to maximize our health. Healthy eating, good lifestyle choices and increased exercisecan provide both physical and emotional benefits. By taking actions toimprove our health and participate in getting better, we regain a senseof control that is so often lost through diagnosis and treatment. Yoga,meditation, relaxation and mind/body feedback can provide comfort andstress release and should be included in your post-op life as anostomate. Use your imagination for a specific purpose. Go to your “happyplace” in your mind and have an experience of the quality of that realitythrough active daydreaming. This can be very effective to assist withreducing side effects of chemotherapy and pre and post op to improveoutcomes and reduce recovery time. www.HealthJourneys.com Journaling, expressive arts, music, dance, poetry, painting allcan be ways to help release our anxiety and improve our self esteem.Ostomates can lose our identity due to the significant physical changeand the emotional and relational changes we experience. We’ve got tokeep our ostomy in perspective. It cannot be allowed to become thenew focus of our lives to the exclusion of the things we did or enjoyedbefore having the ostomy. Humor and sprit renewal and refresh willbring peace and meaning to our lives as ostomates. Giving back and sharing our experiences with others in theostomy community and elsewhere are very helpful and allows us tounderstand why this has happened to us. Happiness in a Storm is agreat book in this area by a practicing physician who had cancer with 49
    • multiple recurrences and had to give up medical practice, but now findsjoy in helping patients through her writing. Close chapters that are not serving you in a hopeful andpositive way. Pursue the profession of your passion, move to yourdream place, and engage with people in a new and positive way. Hopeis the belief that there can be a better outcome and that I can improvemy own situation through the choices I make. Plan for the future; enterinto new relation 1ships to validate your determination to have a longand positive life as an ostomy. Be open to asking for help and listen to friends and family whenthey have the courage to speak to you about an issue they see in you.Accept the help that is offered and seek out support from others whohave traveled a similar path and experiences. One to one, in a group, inan online community and utilize the social services that are availablethrough your medical professionals and the many organizationsavailable to you, such as UOAA, Inspire.com, Great Comebacks andothers. You are not alone. There are nearly a three quarters of a millionostomates in our community. Reach out, we want to help!50
    • Diagnosis to Treatment3/10/865PM: Diagnosis of rectal cancer Feeling lost, afraid, unstable. Dr.Grover recommends removal surgery and colostomy which requires abag out of my stomach for defecation. Very negative, repulsive ideainitially. Easy to tears. Spoke with parents. They are very upset, can’tand won’t believe it. Ate dinner, good appetite. Watched a John Waynemovie, The Hellfighters, and slept well until 3PM, Then woke up, took ashower and went back to sleep.3/11/86AM: Great family support from Peggy and Sharon. Trish is great, superpositive attitude. I can’t imagine not having her to help and her familytoo. For those without family, it must be real Hell.PM: Trish is down, crying, she is afraid. I fell OK, acceptance, butstomach is nauseous. Trish is pleased and sure that her family willhelp. This really makes it easier on us. I must go ahead with all of thisand get well for Trish and the boys. If it wasn’t for them, I’d end it now. Imust support Trish now; I’ll need her support later. The time after thesurgery will be very difficult. Only then will I know how bad the cancer isand how long to recover.3/12/86AM: I seem to have gotten a good night’s rest for the first time in whatseems like an eternity. Trish and I made love this morning. It was real 51
    • good for both of us. I had no performance issues or pain relateddistraction. Business as usual today. Todd from Gateway seemsconcerned so I told him the straight scoop. It made me feel better toshare it with someone else besides family. I talked to my boss and toldhim the whole story. He said it was OK, I didn’t have to take vacationtime and that being off for 4-6 weeks would be OK. We’ll work it out, hesaid. That really made me feel at ease. Linda (our former neighbor fromSan Jose) said she would pray for me every hour.I think I have fully accepted the fact that I have cancer and that gettingcured will be painful and troublesome, and that my life may be changedafter it is all over. I am hopeful that somehow, I won’t need a colostomy,but even if I do, Trish has been so supportive and positive about havingto “poop in a bag.” Peggy said, “They love me for who I am, not how Igo to the bathroom.” That makes me feel more comfortable with theidea. Dr. Grover said there was a society of colostomy patients. When itbecomes certain I will need one, I’m going to contact them to get abetter idea of what its all about, so as to be better prepared. (I nevergot a chance to make that connection before the surgery and when Iwoke up with a colostomy, it was a real shock!)I feel so sorry for someone alone to have to go through something likethis. You really get to know who your friends are. Tonight I spoke with alifelong friend, Michael. He told Amy (his gram) and that worries Trish.Amy is so sick herself that she doesn’t need my worries added to herown. I asked Michael to help me load the three wheelers. He has navalreserves this weekend and said he would call if he could help. If hedoesn’t call, that will speak volumes about where his head is at aboutsupporting me through this. (I don’t remember if he came by to help ornot.)52
    • Trish has said she doesn’t want to ask Michael or my family for help,and now I know why. She knows they will let us down. I don’t know whyI’ve been kidding myself all these years. My parent will not help us andonce I’m alright, they will find excuses not to help us recover financiallyor emotionally. Gloria (my sis) wants nothing but positive thoughts andinternal armies marching against the cancer, but I wonder how far herpositive attitude will go when we need something that conflicts with heropinions or schedule.We spoke with the surgeon at UCI Med Center, Dr. Allen Weil. Myappointment with him is on Thursday at 9AM at the UCI campus. I amto bring the biopsy slide with me. If radiation is needed it will be done inMission Viejo, close to home. I will need blood tests; X-rays, scans andthen the decision will be made if I’ll have only surgery, or surgery plusradiation and chemotherapy.PM: The pain pills that Dr. Hazen gave me and a little Preparation Hseem to eliminate most of the pain, just the deep dull throbbing acheremains. Damn it! I feel so healthy, how can I be so sick?3/13/86UCI Med Center: Dr. Weil took fluid from the lymph glands in my grointo check for cancer cells. Tick tock, the doc is checking the fluid, ticktock, tick tock. He’s back, YES there are definite tumor cells in mylymphs. This is NOT good news. My odds are now 70/30 against longterm survival. The operation will take about 3 hours. I’ll be in thehospital for a day or two and I’ll feel like getting up and around in acouple weeks after surgery. Six weeks after surgery we’ll begin theradiation treatment outpatient. Three months total treatment time.(Note: I was actually in the hospital for 11 days.) 53
    • Radiologist’s office: Dr. Koons. His offices are beautiful and the peopleare very nice. Patients have made stained glass and ceramic items forhis office. It is very comforting. Ruth is the doctor’s assistant. She has aten year old son that she thinks is great. BP 120/64, a bit high for me.Dr. confirms what Dr. Wiel recommended. Let’s go, need blood workand X-rays. They tattoo me with little blue dots so I can be aligned onthe radiation table in the exact same way for every treatment.PM: Got a nice letter from my nephew, Michael Haight. It was so verytouching and helpful that it made me cry. I was a lot afraid this morningafter the meetings with the doctors. They confirmed Dr. Grover’srecommendation of removal of the rectum, colostomy and radiationtreatment. I had hoped for a conflicting opinion, but I know now that Imust play the safest odds and go ahead with the surgery and radiationtreatments. I’ve got to give Trish and the boys my best shot at survival.Trish and I spoke of my death at lunch today. It was much more difficultfor her than for me. It made me cry when she told me that she wouldnot remarry and that I was the only man for her EVER! Talk abouthaving something to live for! Steve Rodriguez from work called todayand offering his unconditional support and that of his wife and family.He is a very special person. I must have some kind of luck to havefound friends and loved ones like Steve, Linda and Angel, Peggy andEarl, Sharon and Eric, Mom, Myrna and especially Trish.Our sales VP, David Shafer called tonight. Steve had left him a noteabout my condition. He was very concerned and most comforting. Heassured me that my job was secure and that if he or Darchelle could beof any help to call them.54
    • I feel good about the decision to go ahead with the surgery and hope Ican keep my spirits up through-out my recovery. Trish said she was alittle down tonight, but I was able to lift her spirits. We agreed that weboth can’t’ be down at the same time.3/16/86We got rained on at Pismo, but it was a very good visit with Marilyn andRoyce and Sharon and Eric. Tracy gave me a big kiss and hug. Marilyncried, Royce babbled, Eric was cool. Everyone has called tonight,Richie (brother), Pam and John, Dave and Darchelle are going to visitand pray for me tomorrow night in the hospital before surgery. Gloriacalled and offered to go to the hospital on Tuesday. John asked me tobe his best man if his brother doesn’t’ make it. Even if he does, Pamwants me to give her away. They really are giving me reason to stayaround.Gary Koopman (my boss) called and wished me all the best andoffered us any and all support we needed and told me not to worryabout work. He will take care of everything and for me to call when I’mready to come back to work.Peggy and Mom drove down from Sacramento tonight. They got hereshortly after we got home. It is very comforting to have Peggy here.She makes Trish feel much more at ease and she makes me feel warminside. Earl is going to fly down this weekend and they will drive backhome together. Jeff is so excited to have his Nanie here; he is sleepingwith her tonight.Jeff was listening to me talk with Gloria and Darchelle on the phoneand while I was talking he got out of bed and came over to sit on my 55
    • knee. I didn’t even think that we hadn’t spoken about my illness in frontof him, but somehow he understood. He told me “I know about youDaddy.” I asked what he knew and he said he knew I was sick. I toldhim that I didn’t hurt, and that the doctors had to fix something inside ofme so that I would be able to be with him for a long time. I told him itwouldn’t hurt, but I would be weak for awhile and I would need to growstrong again.Trish found out that I had been overly optimistic about my odds forsurvival. I was afraid she would feel betrayed, but I didn’t want her toworry about anything more than was necessary. Until the biopsy iscompleted from the tissue the doctors remove during surgery they arejust not sure what the odds are.I feel so sure that everything is going to be fine. All the positivethoughts and prayers. I know there is a reason I’m going through this,maybe so I can help others.3/17/86UCI Med Center: Irvine: St. Patty’s Day, a day for the wearing of thegreen! A day for me of fear and worry. It’s a tough day as thing aregetting underway to make be better. I must continue to look past thesenext few days to my time of full recovery. Everyone is being so up andpositive that there is no way for me to feel down. I know I’ll get well.Steve called this morning and said he would call this afternoon at thehospital. I’m waiting to be admitted to UCI Med Center. Trish is with meand is really helping. She was a little sad and cried, but said it was notbecause she was worried, but because I was always thinking of others.I’m glad I have some credit in God’s bank for it is coming back to menow multiplied. Jane Thompson, the admission nurse was very nice.56
    • She took me for the blood draws and X-rays. Donna Anderson, RN,told me that the surgery recovery would be noisy, but not to worry thatwas usual. They will wake me every four hours for vital signs.PM: Dr. Weil just went over the procedure with Trish and me. He is socalm and confident that I feel very sure of success. He did say he wasconcerned about the potential spread of the cancer to my liver, aboutone in ten chances. There will be a tube in my nose and tubes from thecut in my bottom to drain.Steve and his friend John visited me and blessed me in the way of theMormons. Steve said some very conforming things that made me cry.David and Darchelle and their friends, Ed and Lee Arthur prayed for metonight. They asked Jesus to speak to me and to heal me. It was a veryspecial thing for me. Their desire to share their love of the Lord withme.Gloria and Jay and Jason were here most of the evening. Gloria spoketo me of self healing, which I think ties into what both Steve’s blessingand David and Darchelle’s prayers are getting after. That each of us,through our individual link with our maker, can help the healingprocess. Jay gave me a big hug when he left. I think that is the first timein my life he has hugged me. It felt good.Trish brought Sharon Peggy and Mom. They are all so great and lovingand caring. Mom did a great job raising all of them. There is a real rootof very good in all of her girls. They will all be here tomorrow with Trishfor the surgery. That takes such a load off my mind, that Trish is beingso well taken care of and has people around her that care. Everyonecares so much that I know I’ll be fine. I’ve got to find some way to thankeveryone. Maybe I can’t thank them in one single gesture. Maybe I 57
    • have to thank them with a lifetime of friendship and caring towardsthem.I just met my hospital room neighbor, Gary. He has had three surgeriesfor cancer in his neck. My cancer seems minor in comparison. He’s gota great attitude and the will to live. Danny from down the hall has had abone disease and lost his foot. Their pain and suffering hurts medeeply. No one that hasn’t been through something like this canpossibly understand. I’ve got to do something lasting to help.To my special friends: Thank you all for your support and caring. Itmeans more to me that I can possibly express. I pledge to you all mystrength for a prompt recovery…Guest register:Steve Rodriguez (coworker at Western Digital)John Caruthers (Steve’s friend from church)Gloria and Jay Pyle (sister and brother in law)Ed and Lee Arthur (David and Darchelle’s pastor and his wife)David and Darchelle Shafer (Sales VP at W/D and his wife)Shelley Herchkorn (friend)Joe Nelson (business associate)Bruce Friesen (coworker)Mike and Amy (lifelong friend and his gram)Richie and Shirley (brother and sister in law)Sharon (sister in law)John (brother in law)Peggy and Earl (sister in law and brother in law)Gary Koopman (my boss at W/D)3/18/8658
    • Surgery Day! AM: The morning of the operation. Jerry, my RN, ran anice hot shower for me. I feel so good, relaxed and calm. It is abeautiful Southern California day. With the help of the doctors, myfriends and family, I am going to get well. I have decided to go with anepidural block instead of general anesthesia. I would like to be undermy own power for the operation. They have given me some medicationthat is making me a little drowsy. Trish and Sharon and Peggy andMom should be here soon. I (am) so looking forward to seeing themand knowing they will be there for me. I’m glad that….(end of journal asI go into night night land.)Added note: They did not do an epidural block. I was under generalanesthesia for the 5 hour surgery. They performed a peritonealresection which opened me from the pubic bone to just above my navalin the front and from the peritoneum through my rectum to the top of mybuttocks in the rear. The doctors removed a softball sized tumor thatwas attached to my rectum, along with the rectum and the lower third ofmy colon, lymph nodes in my groin and around the rectum. About 7pounds of tissue in all was taken out. They sewed up my entirebackside, I no longer have any opening back there. The cut end of mycolon was rerouted through an incision in my stomach on the left sideof my abdomen about at the belt line. This opening (stoma) is where Inow defecate through into a colostomy bag. 59
    • Surgery to 6 weeks post-op3/22/86:I can’t believe that four days have gone by since surgery! Jay (brotherin law) just left after spending four hours with me. WE talked as friendsas never before. I knew I had gotten through his shell when he huggedme on the night before surgery. He is a very special person, in his ownunique way that most people don’t appreciate. He also visited onWednesday night.Michael (lifelong friend) was in and brought ice cream bars, but Icouldn’t have them according to my nurse. Michael smiled and jokedfor the first time since I told him I had cancer. He is still looking at thingslike a glass half empty, finding the handicaps I’ll have due to thecolostomy. The only handicaps we have are those we put uponourselves.I feel very touched by the love and caring from so many people. John(brother in law) came by tonight in his 18-wheeler on his way to drop aload off in Riverside. It must have been tough to park his truck in thehospital’s parking garage! John is a very special person. He is verysmart, but has chosen a job that doesn’t use but a small amount of hisintelligence.I feel outside myself, wanting to find way to help all of the people whohave helped me. How can I repay them? Eric (brother in law) calledtonight to tell me that his doctor wants to talk with him about someinconclusive test results. Sharon (his wife and my sister in law) saysthere is something wrong. Eric says no, I believe him and pray that heis right.60
    • Trish was here most of the day. She cleaned me up, held my hand andcomforted me. She said she felt better today, that she slept well lastnight. Peggy told me that she has been real strong through all of thisand only had trouble once. It was toward the end of my surgery, theycalled her in the waiting room to tell her they would finish in 20 minutesand it was more than an hour.Peggy has been extra special. She has taken charge of the house thispast week. She said that she really enjoyed to chance to spend thistime with the boys. She told Jeff that I had a cut where the doctors tooksomething bad out of me, so that he knew to be gentle with me whenhe visits. I was so afraid that this cancer, or complications from thesurgery would make me less of a father to my boys. I know this is notthe case now and that through this experience I will be an even betterfather. I swear!Trish is great! She said that even if I am impotent that we will getthrough other means. She won’t let anything get me down. She saysthe colostomy is no big deal.Bruce (coworker) was by on Wednesday night and called again today.He is another special guy and very caring and concerned for me. Whatmakes some people I hardly know draw close to support me, whileother close friends and some family members become like distantcousins? I guess the old adage about not knowing your real friendsuntil the chips are down is really true. Another coworker, Joani, calledtwice and sent some odd things to my hospital room. I really can’t figureher out. I guess some people do strange things when faced with a lifethreatening situation. Greg, a business associate called tonight, butcalled me Bob? Maybe he just dialed the wrong number. He asked meif I could help him find a live-in helper for his family. I told him that onceI got out of the hospital, I would check into it. What does he expect me 61
    • to do about that now? Bizarre! Joe, another business associate visitedand brought flowers that he said Jim and Mason from CMS (a client)asked him to buy. Dan from Bestronics (W/D’s rep firm in OC) calledwith his best wishes.Gary (my boss) came in today and spent an hour and a half talking withTrish and me while I was struggling to sit up. I hate that chair. The dayafter I got out of ICU they made me get up and sit in it. I almost passedout. It hurt so much! Anyway, Gary said I looked a lot better lying downthan sitting up. I’ll bet! He also makes both Trish and I feel so goodabout work not being a problem. He agreed with Bruce’s comment thatthe price of Western Digital stock was not going up or down based onwhether I get back this month or next. These people at W/D arefantastic! They really care! Gary said he liked the idea of bringing thekids by our house on Easter for an Easter egg hunt. Ellen, his wife hasto work that day.It’s difficult to remember the details of the past several days, but maybeit is a blessing that we forget all the pain filled times. I remember the IVwas difficult to get in before surgery. It took five or six sticks before itwent in. The night before surgery I had to drink a gallon of “go litely”which does NOT go litely as it flushed out your bowels, like a fire hose.I thought I would blow up the toilet. Glad to have a private room!Back to earlier in the week right after surgery. I don’t remember much,and what I do remember is fuzzy. The ICU was really noisy like theytold me before surgery. I remember getting a nice sponge bath fromsomeone. But I remember feeling lost and alone. Then Trish came inand everything felt OK again. I was not alone or lost. She is my rock!UCI Medical Center is a teaching hospital and I seem to remember anumber of groups of students coming by and having my case62
    • discussed with them as a learning tool, I guess. I came out of ICU onWednesday and felt really awful. I had tubes coming out of meeverywhere. My nose, my bottom and front incisions, a catheter, IVsand of course the dreaded colostomy bag. Nothing in it yet, mystomach hasn’t awakened from the surgery, I guess. I am lookingforward to the pain killers they put into my IV every few hours, theyreally help me relax so I can sleep. Pain is a terrible thing!Thursday was when my stomach started trying to work again. Lots ofgurgling and cramping, but I still haven’t had a bowel movement. It willbe weird going to the bathroom from the front through my stoma, a littlepink bud about an inch across that sticks up about half an inch from mystomach on the left side about at my beltline. There is a huge clearplastic bag pasted to my belly to catch the stool when I go. There is nomuscle to close it off like with a rectum, so stuff just flows out at randomtimes. I have no control.Friday was a much better day. They took out the drain tubes in mybottom and the IV. I also got my first lesson on how to manage myostomy bag. The nurse replaced the awful one piece plastic bag with atwo piece ostomy product from Convatec. Compared to what I had onpost-op, this set up is great. One part is a soft 4 inch square patch(wafer) that adheres to the skin around my stoma. It has a Tupperwarelike sealing ring that connects to the connecting ring on the ostomypouch. A skin colored opaque bag that collects the stool and when it’sfull, I just change it out for a new one. They told me about a localsupport group of ostomates that I can join to get tips on how to managemy ostomy.It is really hard to get up. Every time I try I get dizzy and have to sitdown again. It is so frustrating. I want to get up and get going, but mybody just won’t do it. My leg strength is OK, but the dizziness is a real 63
    • challenge. I break into a sweat and being to get light headed and theworld spins round and round. It is not fun, but I’ll do better tomorrow.I love you, Trish. I miss you, Jeff and Josh and me thank God for all ofour friends and family. I’ve gotten lots of flowers and plants all aroundthe hospital room that lifts my spirits.Thank you list:W/D Dallas, LA and NorCal Sales Office; Don, Coleen, Chris, Ben, Bev,Gonan, Brad and Wayne, Dave and Lori. W/D sales office in Irvine fromBrad, Pate, Phil and Trian, Joani, Carol and Gary. Craig’s parents,Jeanie, David and Darchelle, Bruce and the EPD (W/D’s EhancedPeripherals Division), Gary and Ellen, Mike and Amy. Richie andShirley, Gloria and Jay, Greg, Laurie and Stan, the folks at Wyle, W/D’slocal distributor. Jim and Mason from CMS, Isabelle, Ken and Lindaand Shelly. Aunt Analee, Jan and Dan, Midge, Kathy, Joe, Joani, BigMike, Myrna and Norm, Rick, Mom, Isabelle and Donni, Pam and John,Ken and Dorothy, Ron and Lauri, Marilyn and Royce, Bruce and Steve.Gary, the cancer patient from the room next door was released onWednesday. I was really feeling bad, so I didn’t get a chance to get hisphone number. Even with all that was happening with his cancerrecurrence, he still made it a point to talk to me and try to lift my spirits.What a guy!3/23/86:Dr. Weil took out my catheter so I am completely free and unplugged. Iwas finally able to get up and walk this morning. If I can pee on my ownI should be able to go home tomorrow. Donna and Jesse (Trish’scousin and her husband) called to twice and they were glad to hear Iwas up and around. Jerry, the night nurse is really a nice guy andenjoys his patients. He says that most people feel differently after theirhospital stay, but over time, they forget all the special ways they feltwhile in the hospital. I don’t want to forget! All the special people. All thelove and caring and prayers and positive healing energy coming my64
    • way. I will NOT forget. I am going to share my experience with them all,so they know how much they helped me and how much I love them fortheir kindness.Dr. Weil told Trish tonight that the tumor was inside my rectum wall andonly a small polyp had broken through to penetrate the rectum wall.That was what finally caused the pain that drove me to tell Trish andshe made me see the doctor. He said I was lucky that they caught itwhen they did. If it has been given more time to grow it could havespread to other parts of my body and I could have died.I still can’t pee! They had to put the catheter back in again and I don’tget to go home until I can pee on my own. That sucks! Big Mike (afriend) called and said she would try to stop by. It was sure nice to seeEarl! He really picked up my day. Trish brought the boys to see metoday for the first time. I am so excited to see them. I’ve missed themsomething fierce! I almost couldn’t keep from crying. There were bothso wide-eyed to see my cuts. Jeff (age 5) wanted me to show Nanie.He really loves her! Josh asked if he could touch my arm and when heleft he said that he can’t touch my tummy, but he could touch my arm.Such a sweet and warm hearted little guy (3 years old) I can’t wait tosee them again. I want to go home!Trish and I had a real nice day today. We visited and touched and gotback in touch with one another. It was really great! I turned over andTrish cleaned the cuts where my old bottom used to be. It is so strangethat have it all sewed up back there. Trish’s touch makes me verycomfortable with the physical changes to my body. Like it’s still me, nobig deal!Peggy and Earl came to pick up Trish and brought the boys. Therewere great. Jeff says my catheter and really that peeing into a bag was 65
    • neat. Saved going to the bathroom! Josh really talked up a storm. He isso smart for someone so young. Peggy and Earl are going to comeback tomorrow and visit. Earl was very encouraging about my strengthand get up and go. He really made me feel good about my progressand about myself.Ba Mui (our babysitter from San Jose) sent me a light up flower lampfrom the Chinese restaurant we always went to in San Jose. She is justtoo much! I had my first real meal tonight including carrots, potatoesand jello and ice cream. It gurgled and was noisy going through mystomach, but with a little walk around the halls it worked its way throughto the ostomy bag with any problems. When I went to change the bag Ihad to hold my IV bag in one hand the colostomy bag in the other anddidn’t have another hand to make the swap. I called Trish and shecame in and helped me get it done. She didn’t mind the smell or thepoop. She is a saint!3/23/86:I gave myself a good bath today, first one since surgery. Boy was I amess. I did it all my myself, quite an accomplishment, I would say. Itook it slow and finished about 30 minutes. It took all my energy tofinish and get dressed, but I really feel good. I’m on the hospital roombalcony writing in my journal and bagging some rays. I haven’t been inthe sun for almost a week.Trish and Peggy and Earl are getting ready to go out to eat and themcome and visit me. Richie (brother) and Shirley (sister in law) and myMom and Dad are going to visit this afternoon with Gloria and Jay.Gloria is trying to get her business off the ground for customizedclothing for Yacht Clubs. I gave her some ideas on sales. I wish herwell.66
    • I talked to Michael today and he may bring Amy, his gram, to visit todayand bring some of his yummy taco salad. Dr. Crochie said that they willtake out the cath again tomorrow along with the staples that are holdingmy stomach incisions together. They I can shower. Yeah! I feel reallygood and will work to keep this feeling of inner peace and satisfactiongoing.Our neighbors in Mission Viejo, Bunny and Frank called and sent theirbest wishes and said they are praying for us. Ba Mui called today and Ithanked her for the glowing flower lamp. Dan and Jan called at hometoday, but when I called back from the hospital room, the line was busy.Trish spent the entire day with me today. She was very tired, but shejust stayed and stayed. I’ve got to get home! Being away from her andthe kids is killing me! They are my lifelines and Trish is my anchor inthis turbulent sea. I love her!Peggy and Earl spent their last night with Trish and me at the hospital.We laughed and cried and hugged and kissed. They are the BEST!Michael and Amy stopped by today. Amy doesn’t feel well, I can tell. I’mafraid she is not going to be with us much longer. We joked and shelaughed and had a fun time. I tried some of Michael’s taco salad andhope for the best.Trish went to the cafeteria and got us both a sandwich for dinner. I amcrying at the drop of a hat. What is up with that? I don’t know why. Trishsays I’m depressed and tired. I’m trying to do too much too soon. I’mbeginning to appreciate the long road ahead to recovery. I know we canget through it as long as we’re together. I’M SO GLAD TO BE ALIVE!And that I will have lots of time to give back to my family and friends allthe love they have given me. Richie and Shirley and Gloria came by fora visit, but I cut it short because I was tired. 67
    • I’m going to take a sleeping pill tonight in hopes of getting a goodnight’s rest. I’m going to call Peggy and Earl in the morning to wishthem a safe trip and thank them again for all their kindness to me andmy family. That’s what family does. Sharon (sister in law) and Kimber(daughter) came in on the train from Fresno today. Trish’s family neverstops caring and supporting us. They are GREAT! They care so muchfor us it makes me cry.Jeff called several time today. It really makes me feel good when hecalls. Trish says it costs money to call long distance, so I told him not tocall so much. I really felt sad to tell him that when what I really meantwas to call only when he really wants to talk. I hope he forgives me,he’s only five.It’s about 11:30PM and I should be getting my vitals taken and mysleeping pill. I’ll work on trying to pee on my own again tomorrow, so Ican get home! I changed my ostomy bag and can push hard on mystomach without discomfort. Hurray! I am very encouraged about howlife can get back to normal with such good ostomy products fromConvatec.GOOD NIGHT MY LOVE AND MY PRECIOUS BOYS!. (Hearts drawnwith our initials in them.)3/24/86:I slept well last night and I’m just a little sluggish from the sleeping pillthis morning. Mark took out my staples this morning but left the stitchesin my groan for another day or two. I put on a new wafer and cleanedaround my stoma. It doesn’t have any feeling in it. Very strange!This illness has disrupted our lives for two weeks today and is not goingto disrupt it any further. The disease is gone and so is the disruption to68
    • our lives! Trish called this morning and was up early with the boys andKimber. We’ll make it an early night tonight. Everyone is so positiveabout me going home today. Me too! I can’t wait. It is hard to describethe type of love that’s grown since this whole thing started. I amamazed at Trish’s dedication and complete commitment to me. Herstrength to keep the family going with the help of her/our family. Here’smy to do list of things to get done in the coming days/weeks:Get thank you cards out to everyoneRead a few chapter of the Bible like David asked me toGive my family back the two weeks we’ve lost in the hospitalCall the home hospital ET nurse to visit me at home to help withostomy supplies and suchI am still not peeing on my own, but I do get to go home with a Foleycath strapped to my leg. It’s not what I want, but I want to go homemore.3/25/86:Check out day. I can’t wait to get home. I was up at 6AM and showeredand ready to go by 7AM. My bottom hurts and has a pressure sore, butI can live with it.My dearest love, I owe you my life and pledge you my eternal love.There is nothing more important in this world to me than you. Youare my life, my hope and my loveDr. Weil’s parting comments from the hospital:Bladder function should return eventually, but may take some time. I’mto make an appointment with him in a week and just before I come in, Iam to remove the cath and try to pee. If no luck, he’ll put it back inagain. His total bill is only $,3000 and our share is just $600. He is asaint to have done so much for such a small fee. I’ll need to schedulefollow up visits every three months for the first year after surgery. Hesaid that if the cancer is going to come back it will be in within the first 69
    • two years. Once we get past two years it will be smooth sailing! Sexualrecovery is possible, but not likely. No option for an implant until at least3 months after radiation treatments are completed. Dr. Weil talked withDr. Koons, my radiation oncologist. They will target the radiation so asnot to hit the remaining part of my colon, so that side effects should beminimal. Just fatigue. Dr. Weil said to be sure I stay insured and not tomake any job changes that will jeopardize my health insurance for atleast two more years.The odds for complete recovery with no recurrence are still the sameas before (70/30 against long term survival.) But I have done my partand taken the hardest most radical treatment path to give myself andmy family the absolute best opportunity for long term survival. The restis up to God. I’ve just got to live each day fully and don’t look back.Focus only on today, for none of us is guaranteed more than that.That’s my cancer survival lesson!I’M HOME! Yahoo…It feels so good and relaxing. Trish and Sharontook me to lunch at the Snooty Fox in Laguna Hills, then came homeand the kids were beautiful. I took a nap and the bed felt so very good,not to mention snuggling with Trish. We went to Moulton pharmacy toget some Convatec two piece ostomy products. My bottom is a littlesore but healing. Lots of gas tonight. I must have gotten used to theawful hospital food!3/26/86:Joyce, my Home Health Nurse, talked about how important rest is athome for recovery. I did too much this morning, playing catch with theboys and writing some thank you cards, plus a shower and gettingdressed. It seems like so little to do, but I am wiped out! When am I70
    • going to get well? I have really loose stools and have to change my baga lot. What a hassle.3/31/86:Weve been walking a couple of blocks after meals, and it seems to behelping my digestion.4/1/86:Joyce said that in order to really heal, Ive got to accept my disease, tobeat it my getting in tune with my body. The intellect has to let go, sothat the body and the mind can get together.4/3/86:Another tough day with nausea and vomiting.4/5/86:Rough couple of days. UTI is raging and I am wiped out. Cant do muchof anything.4/8/86:Im back, got my resolve again. That inner drive to stand up and fight.4/15/86:Started irrigation today. Lots of cramping, I hope this gets better.4/16/86:Irrigated again today, cramping is not as bad. Last day with Joyce, myhome health nurse.4/19/86:Big setback today. I went to work and got home at 6PM, ate and wentstraight to bed. I am wiped out, tried to do too much, too soon. Its beena month since surgery, why cant I just get on with my life? 71
    • 4/21/86:I cant sleep. I am really angry. Angry at my family. Angry at thedoctors, Angry with myself. I think I am putting myself under too muchpressure. I need a break from the stress. Ive got to start prioritizing.Whats most important will get my attention and the rest can go to Hell.1. Trish and the boys 2. Making a living 3. Helping other patients whoare going through this alone4/22/86:Irrigation is not helping regulate my bowel movements. I have constantloose stools, but it could be the antibiotics for the UTI.4/28/86:I have had diarrhea constantly for the past week. I am disappointed thatirrigation has not allowed me to have the freedom from the toilet that Idesire. Ill keep trying, maybe irrigate at night instead of the mornings.This is my last week off work. Im really going to miss all the time athome with Trish and the boys and all our helpful and caring houseguests. I am really going to work hard to keep things from gettingcomplicated. Stick with my priorities and to Hell with the rest. Cantsweat the small stuff!April 29, 1986:Trish really wants me to go to Sacramento to speak with June to leanabout holistic healing. I’m going to fly up on Sunday and back. I’m reallyworn out from work today. It seems I’m even more tired now than whenI worked much harder before. I think the radiation is pulling on myenergy reserves.72
    • 6 weeks post-op to 12 weeks post opMay 1, 1986The radiation is starting to eat away the skin on my bottom and alongthe joints of my legs. Dr. Koons was pleased to see this, as it shows heis putting in a good dose of radiation. I’m really worn out and very shorttempered. I’ve got to keep on some pain meds until they are throughwith 8 more radiation treatments. Trish hasn’t’ felt well either, but shekeep up a strong front.May 3, 1986We just finished hosting Jeff’s pool parts. It was a real success! All thekids had a great time. Greg and Robyn (Christopher’s Mom and Dad)stayed all day. Trish and I are really tired.May 6, 1986My bottom is really burned badly. Dr. Koons is going to stretch out thetreatment. I get today and tomorrow off. Treatments on Thursday, thenFriday off. Then five more treatments every other day for two weeks.This should help reduce the burns. I’ve been working from home thisweek. Making phone call with good success. Gateway Computeragreed to SKU up the 60TI Western Digital external drives in all theirstores. I saw Dr. Weil last Thursday. He was very positive about myrecovery. He said he was sure I would have many years to live. I’m tocall his office in July to set a 3 month check-up in August. He said thatif I feel good, there is only a 30% chance that he will find something atthe 3 month check up and that only 10% chance that the test will showanything.May 7, 1986I just listened to June’s hypnosis tape. I really believe this it is going tohelp me heal. What she is saying makes a lot of sense and I can really 73
    • get with it. Relax, take time for your body to heal, imagine the healinglight coming down from Heaven to touch each and every cell in mybody, healing and eliminating any remaining cancer. June offered to flydown and spend the night to finish treating me. I would like her to visit.She has asked me to find the trigger for the cancer. Some major stresspoint in my life 5-10 years ago.May 10, 1986It is a beautiful day today. Trish isn’t feeling well. She is lying down. I’min the sun and the boys are watching cartoons. Mom and Dad cameover yesterday for a BBQ and it was OK. They seem to be getting ahandle on their emotions. I received a half treatment from Dr. Koonsyesterday, the first since Monday. It seems as though the break hashelped with the burns. I’m still taking pain meds and a tranquilizer. Thepain makes me mad and impatient. Very frustrating!May 13, 1986The burning pain from my bottom stopped yesterday, but is still deepdown sore and the skin is raw. I have been listening to June’srelaxation and visualization tape everyday and it really helps me relaxand find peace. 30 minutes twice a day. Trish is real good to keep theboys quiet so I can have my meditation time. I have been taking thevitamins and supplements that June ordered, but I’m not into the dietand the visualization is challenging to get with. I went to work todayuntil Noon. I was really tired. Trish took me around yesterday and wehad a real nice time shopping and out to dinner. She is not feeling welltoday. I didn’t sleep at all last night; I really think the stress from workmust be getting to me. I’ve got a sales quota to make and I’ve lost 8weeks to the cancer treatments.74
    • Gloria (my sis) and Richie (brother) called. I really made an effort to benice, but I really have no feelings for them. They are still family but I justdon’t love them like I did before the cancer. They did not show me loveand caring like Trish and her family. They have shown me what reallove is. Sharon and Eric (sister and brother in law) are coming downthis weekend. I’m looking forward to seeing Sharon again. She is sovery special. I don’t know where she get her energy, but there seems tobe no limit to what she is able to do when she puts her mind to it andpours out her heart to care for us.May 14, 1986Second heavy treatment today. It really burned. Dr. Koons scared metoday by talking about his concern about damaging my bowel so badlythat it might require surgery later to repair it. He hadn’t mentioned thatbefore, I wonder why? Dr. Weil didn’t say anything about that possiblecomplication. Got my commission check for the previous quarter whileI’ve been off. $15,000 Wow! Not bad, I should get cancer and take 8weeks off more often. We put it in the bank to cover the medical billsthat is rolling in.May 16, 1986Trish and I had a great trip to San Jose. Trish did most of the driving. Ionly drove for about an hour. It hurts too much to sit still behind thewheel for long. We traded in our new Ford F350 double cab dually for aFord Mustang GT and cut our payments in half. Went to DMV and got acustom license plate “R HOT GT” We stopped by to visit with Linda andAngel (our former neighbors in San Jose) and Ba Mui (our kid’sbabysitter) who gave me a beautiful blanket. She is so very sweet butstutters and doesn’t speak English very well. She and Trish somehowcommunicate fine. It was a lot of fun driving R HOT GT home from SanJose. It has T-tops which come off and make it into a convertible. So 75
    • much fun! We spent the night at Santa Nella. I got some new clothes atthe mall and I feel real spiffy. Trish and I got really close on the 8 hourdrive back to OC. She was really relaxed and my bottom didn’t hurtmuch. We’re waiting for Sharon and Eric to arrive. We went to lunchwith my Mom and Dad. I am really starting to feel better about themlately. They really came through for us with Jeff while we were upNorth. June’s tape is really working. I’m getting into the visualizationand imagery to help heal myself from the inside out. The vitamins anddiet June ordered are really paying off. I have much more energy andless bowel issues.May 18, 1986We had a very nice weekend with Sharon and Eric. We went to brunchtoday and out to dinner last night. I was really worn out yesterday aftermy treatment. Only two more to go!!! Yeah! Tonight, Trish and I went todinner at Ruby’s. There were a lot of families there and it made methink of our family 10 years, 20 years down the road. I didn’t even thinkthat I might not be there to see them gown up. That made me cry. Trishsaid it’s OK to cry once in a while, but not to hold onto the sadness.Move on.May 24, 1986Trish was really sweet yesterday. She asked if I was worrying about notbeing able to perform in bed. I said I was, that it bothered me a lot. Wehave always had a great sex life. She said that I shouldn’t worry andthat we were in no hurry. She said we’d give it six months, and thensee. That really makes me feel at ease. She also said that we could getclose in other ways. I’m looking forward to exploring those ways!My last day of radiation treatments. Happy and sad at the same time. Ididn’t want to say goodbye to everyone in Dr. Koon’s office. Everyonehas been so nice and supportive. But I was really happy that I could76
    • start getting well now that my body is not getting contaminated withrads. I am really tense this morning and I don’t know why. My behaviorhas really been screwed up by all of this and my patience is gone. Wedid have a nice visit with Mom and a great dinner with Amy at BobbyMcGee’s in Newport.May 26, 1986What a great day we had yesterday. We participated in the “HandsAcross America” event, then to brunch and then out to the beach inBalboa. Going to beach is such a restful and restoring thing for me. Iplayed Frisbee; body surfed, played with the boys, played an hour ofvolleyball and went to the fun zone for skeeball games with the boys. Itis the first day I really feel back to normal after nearly 10 weeks sincesurgery. Mom and Dad come over today and Dad talked about his fearof death. He doesn’t want to die before Mom (he did pass before her.)He says that since I got sick he has really known this own mortality. I’llhave to check in with him later on this. Trish has noticed how distantDad has been since I got sick. She can tell he is troubled.May 28, 1986I am very restless and cannot sleep. I’m a little sore on my bottom forall the sitting yesterday. Yesterday was my first day back to the officefull time. Trish said she really missed having me at home. That makesme feel really special! I irrigated yesterday morning without any trouble.It helped me through the day but tonight I’ve had a couple of bowelmovements. Frustrating, but I’ll keep at it. Monday night, Trish and I gotclose for the first time since this whole thing started. It felt real goodand Trish said she was glad to know we could still be intimate.May 29, 1986 77
    • Yesterday was a tough day. I didn’t sleep well and in the earlyafternoon I began to sweat and get really anxious. I went to change mybag and it got all over my clothes. I left work and came home. I felt likesuch a failure and a coward to run home with my tail between my legsand poop in my pants. I cleaned up and lay down for a while and I wasOK. My stoma is bleeding and it worries me. I didn’t irrigate today forfear I would make it bleed more.June 1, 1986….My 31st birthday!June 5, 1986I’m feeling very peaceful. I’ve had my 31st birthday. I’ve seen Dr.Koons again and we talked about making a short video of myexperiences through treatment. I am having difficulty making work apriority. I’ve got to get my balance back between health, family andcareer. I’ve always put work first and focused on climbing the corporateladder, but my heart just isn’t in it anymore. I guess cancer will do thatto you? I do need to set some goals at work, at home and for my healthand well being.Everything at home is great. Trish and I are really in tune. The boyshave been great through all of this. I’ve got some work projects to finishup. Cancer is no excuse for not finishing things I’ve started. But I’ll takemy time and it will get done when it’s done. Hey, maybe I don’t needgoals. Maybe that’s not the way for me anymore? Maybe I should justdo what seems right that day and see where it goes? There’ssomething ahead for us. I can’t quite see or understand yet. But I knowit’s there. Just a little more focus to reach the next level, the nextchapter in our lives. Well, I’m at the last page in this journal; I’ll have toget another.78
    • Present day update For whatever reason, I did not get another journal to write in.Maybe I had gotten to a point that I didn’t feel I needed to write thingsdown to figure out how I felt about them. Maybe I got back to my oldways of being too busy and focused on work. Maybe I just got my lifeback on track and didn’t want to stop having fun to write them down. Iquit my job at Western Digital in Irvine early the following year and wesold our home in Mission Viejo and moved to Folsom to be near Trish’sfamily. The family that showed me what love and caring was really allabout and I claim them as my own. That was 26 years ago. I have norecurrence of cancer. I live an active, full life as an ostomate and enjoyhelping others in their journeys as cancer survivors and ostomates. Go to www.randy.henniger.com for latest updates Like my Facebook page at:https://www.facebook.com/pages/ActiveOstomates/273287332764236 Youtube channel: http://www.youtube.com/user/rhenniger?feature=guide 79