Randy’s cancer journal

Randy’s Cancer Journal, March-June 1986

Randy’s Journal Entries: Diagnosis to Treatment

3/10/86
5PM: Diagnosis of rectal cancer Feeling lost, afraid, unstable. Dr. Grover recommends removal surgery and colostomy which requires a bag out of my stomach for defecation. Very negative, repulsive idea initially. Easy to tears. Spoke with parents. They are very upset, can’t and won’t believe it. Ate dinner, good appetite. Watched a John Wayne movie, The Hellfighters, and slept well until 3PM, Then woke up, took a shower and went back to sleep.
3/11/86
AM: Great family support from Peggy and Sharon. Trish is great, super positive attitude. I can’t imagine not having her to help and her family too. For those without family, it must be real Hell.
PM: Trish is down, crying, she is afraid. I fell OK, acceptance, but stomach is nauseous. Trish is pleased and sure that her family will help. This really makes it easier on us. I must go ahead with all of this and get well for Trish and the boys. If it wasn’t for them, I’d end it now. I must support Trish now; I’ll need her support later. The time after the surgery will be very difficult. Only then will I know how bad the cancer is and how long to recover.

 

3/12/86
AM: I seem to have gotten a good night’s rest for the first time in what seems like an eternity. Trish and I made love this morning. It was real good for both of us. I had no performance issues or pain related distraction. Business as usual today. Todd from Gateway seems concerned so I told him the straight scoop. It made me feel better to share it with someone else besides family. I talked to my boss and told him the whole story. He said it was OK, I didn’t have to take vacation time and that being off for 4-6 weeks would be OK. We’ll work it out, he said. That really made me feel at ease. Linda (our former neighbor from San Jose) said she would pray for me every hour.
I think I have fully accepted the fact that I have cancer and that getting cured will be painful and troublesome, and that my life may be changed after 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 having to “poop in a bag.” Peggy said, “They love me for who I am, not how I go to the bathroom.” That makes me feel more comfortable with the idea. Dr. Grover said there was a society of colostomy patients. When it becomes certain I will need one, I’m going to contact them to get a better idea of what its all about, so as to be better prepared. (I never got a chance to make that connection before the surgery and when I woke up with a colostomy, it was a real shock!)
I feel so sorry for someone alone to have to go through something like this. You really get to know who your friends are. Tonight I spoke with a lifelong 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 her own. I asked Michael to help me load the three wheelers. He has naval reserves this weekend and said he would call if he could help. If he doesn’t call, that will speak volumes about where his head is at about supporting me through this. (I don’t remember if he came by to help or not.)
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 why I’ve been kidding myself all these years. My parent will not help us and once I’m alright, they will find excuses not to help us recover financially or emotionally. Gloria (my sis) wants nothing but positive thoughts and internal armies marching against the cancer, but I wonder how far her positive attitude will go when we need something that conflicts with her opinions or schedule.
We spoke with the surgeon at UCI Med Center, Dr. Allen Weil. My appointment with him is on Thursday at 9AM at the UCI campus. I am to bring the biopsy slide with me. If radiation is needed it will be done in Mission Viejo, close to home. I will need blood tests; X-rays, scans and then the decision will be made if I’ll have only surgery, or surgery plus radiation and chemotherapy.
PM: The pain pills that Dr. Hazen gave me and a little Preparation H seem to eliminate most of the pain, just the deep dull throbbing ache remains. Damn it! I feel so healthy, how can I be so sick?
3/13/86
UCI Med Center: Dr. Weil took fluid from the lymph glands in my groin to check for cancer cells. Tick tock, the doc is checking the fluid, tick tock, tick tock. He’s back, YES there are definite tumor cells in my lymphs. This is NOT good news. My odds are now 70/30 against long term survival. The operation will take about 3 hours. I’ll be in the hospital for a day or two and I’ll feel like getting up and around in a couple weeks after surgery. Six weeks after surgery we’ll begin the radiation treatment outpatient. Three months total treatment time. (Note: I was actually in the hospital for 11 days.)
Radiologist’s office: Dr. Koons. His offices are beautiful and the people are very nice. Patients have made stained glass and ceramic items for his office. It is very comforting. Ruth is the doctor’s assistant. She has a ten 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 work and X-rays. They tattoo me with little blue dots so I can be aligned on the radiation table in the exact same way for every treatment.
PM: Got a nice letter from my nephew, Michael Haight. It was so very touching and helpful that it made me cry. I was a lot afraid this morning after the meetings with the doctors. They confirmed Dr. Grover’s recommendation of removal of the rectum, colostomy and radiation treatment. I had hoped for a conflicting opinion, but I know now that I must play the safest odds and go ahead with the surgery and radiation treatments. 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 difficult for her than for me. It made me cry when she told me that she would not remarry and that I was the only man for her EVER! Talk about having something to live for! Steve Rodriguez from work called today and 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 have found friends and loved ones like Steve, Linda and Angel, Peggy and Earl, Sharon and Eric, Mom, Myrna and especially Trish.
Our sales VP, David Shafer called tonight. Steve had left him a note about my condition. He was very concerned and most comforting. He assured me that my job was secure and that if he or Darchelle could be of any help to call them.
I feel good about the decision to go ahead with the surgery and hope I can keep my spirits up through-out my recovery. Trish said she was a little down tonight, but I was able to lift her spirits. We agreed that we both can’t’ be down at the same time.
3/16/86
We got rained on at Pismo, but it was a very good visit with Marilyn and Royce and Sharon and Eric. Tracy gave me a big kiss and hug. Marilyn cried, Royce babbled, Eric was cool. Everyone has called tonight, Richie (brother), Pam and John, Dave and Darchelle are going to visit and pray for me tomorrow night in the hospital before surgery. Gloria called and offered to go to the hospital on Tuesday. John asked me to be his best man if his brother doesn’t’ make it. Even if he does, Pam wants me to give her away. They really are giving me reason to stay around.
Gary Koopman (my boss) called and wished me all the best and offered us any and all support we needed and told me not to worry about work. He will take care of everything and for me to call when I’m ready to come back to work.

 

Peggy and Mom drove down from Sacramento tonight. They got here shortly 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 warm inside. Earl is going to fly down this weekend and they will drive back home together. Jeff is so excited to have his Nanie here; he is sleeping with her tonight.
Jeff was listening to me talk with Gloria and Darchelle on the phone and while I was talking he got out of bed and came over to sit on my knee. I didn’t even think that we hadn’t spoken about my illness in front of him, but somehow he understood. He told me “I know about you Daddy.” I asked what he knew and he said he knew I was sick. I told him that I didn’t hurt, and that the doctors had to fix something inside of me so that I would be able to be with him for a long time. I told him it wouldn’t hurt, but I would be weak for awhile and I would need to grow strong again.
Trish found out that I had been overly optimistic about my odds for survival. I was afraid she would feel betrayed, but I didn’t want her to worry about anything more than was necessary. Until the biopsy is completed from the tissue the doctors remove during surgery they are just not sure what the odds are.
I feel so sure that everything is going to be fine. All the positive thoughts and prayers. I know there is a reason I’m going through this, maybe so I can help others.
3/17/86
UCI Med Center: Irvine: St. Patty’s Day, a day for the wearing of the green! A day for me of fear and worry. It’s a tough day as thing are getting underway to make be better. I must continue to look past these next few days to my time of full recovery. Everyone is being so up and positive 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 the hospital. I’m waiting to be admitted to UCI Med Center. Trish is with me and is really helping. She was a little sad and cried, but said it was not because 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 me now multiplied. Jane Thompson, the admission nurse was very nice. 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 that was 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 so calm and confident that I feel very sure of success. He did say he was concerned about the potential spread of the cancer to my liver, about one in ten chances. There will be a tube in my nose and tubes from the cut in my bottom to drain.
Steve and his friend John visited me and blessed me in the way of the Mormons. Steve said some very conforming things that made me cry. David and Darchelle and their friends, Ed and Lee Arthur prayed for me tonight. They asked Jesus to speak to me and to heal me. It was a very special thing for me. Their desire to share their love of the Lord with me.
Gloria and Jay and Jason were here most of the evening. Gloria spoke to me of self healing, which I think ties into what both Steve’s blessing and David and Darchelle’s prayers are getting after. That each of us, through our individual link with our maker, can help the healing process. Jay gave me a big hug when he left. I think that is the first time in my life he has hugged me. It felt good.
Trish brought Sharon Peggy and Mom. They are all so great and loving and caring. Mom did a great job raising all of them. There is a real root of very good in all of her girls. They will all be here tomorrow with Trish for the surgery. That takes such a load off my mind, that Trish is being so well taken care of and has people around her that care. Everyone cares so much that I know I’ll be fine. I’ve got to find some way to thank everyone. Maybe I can’t thank them in one single gesture. Maybe I have to thank them with a lifetime of friendship and caring towards them.
I just met my hospital room neighbor, Gary. He has had three surgeries for cancer in his neck. My cancer seems minor in comparison. He’s got a great attitude and the will to live. Danny from down the hall has had a bone disease and lost his foot. Their pain and suffering hurts me deeply. No one that hasn’t been through something like this can possibly understand. I’ve got to do something lasting to help other cancer patients.
To my special friends: Thank you all for your support and caring. It means more to me that I can possibly express. I pledge to you all my strength 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)
3/18/86
Surgery Day! AM: The morning of the operation. Jerry, my RN, ran a nice hot shower for me. I feel so good, relaxed and calm. It is a beautiful Southern California day. With the help of the doctors, my friends and family, I am going to get well. I have decided to go with an epidural block instead of general anesthesia. I would like to be under my own power for the operation. They have given me some medication that is making me a little drowsy. Trish and Sharon and Peggy and Mom should be here soon. I (am) so looking forward to seeing them and knowing they will be there for me. I’m glad that….(end of journal as I go into night night land.)
Added note: They did not do an epidural block. I was under general anesthesia for the 5 hour surgery. They performed a peritoneal resection which opened me from the pubic bone to just above my naval in the front and from the peritoneum through my rectum to the top of my buttocks in the rear. The doctors removed a softball sized tumor that was attached to my rectum, along with the rectum and the lower third of my colon, lymph nodes in my groin and around the rectum. About 7 pounds of tissue in all was taken out. They sewed up my entire backside, I no longer have any opening back there. The cut end of my colon was rerouted through an incision in my stomach on the left side of my abdomen about at the belt line. This opening (stoma) is where I now defecate through into a colostomy bag.

Surgery to 6 weeks post-op

3/22/86:

I can’t believe that four days have gone by since surgery! Jay (brother in law) just left after spending four hours with me. WE talked as friends as never before. I knew I had gotten through his shell when he hugged me on the night before surgery. He is a very special person, in his own unique way that most people don’t appreciate. He also visited on Wednesday night.

 

Michael (lifelong friend) was in and brought ice cream bars, but I couldn’t have them according to my nurse. Michael smiled and joked for the first time since I told him I had cancer. He is still looking at things like a glass half empty, finding the handicaps I’ll have due to the colostomy. The only handicaps we have are those we put upon ourselves.

 

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 a load off in Riverside. It must have been tough to park his truck in the hospital’s parking garage! John is a very special person. He is very smart, but has chosen a job that doesn’t use but a small amount of his intelligence.

 

I feel outside myself, wanting to find way to help all of the people who have helped me. How can I repay them?

 

Eric (brother in law) called tonight to tell me that his doctor wants to talk with him about some inconclusive test results. Sharon (his wife and my sister in law) says there is something wrong. Eric says no, I believe him and pray that he is right.

 

Trish was here most of the day. She cleaned me up, held my hand and comforted me. She said she felt better today, that she slept well last night. Peggy told me that she has been real strong through all of this and only had trouble once. It was toward the end of my surgery, they called her in the waiting room to tell her they would finish in 20 minutes and it was more than an hour.

 

Peggy has been extra special. She has taken charge of the house this past week. She said that she really enjoyed to chance to spend this time with the boys. She told Jeff that I had a cut where the doctors took something bad out of me, so that he knew to be gentle with me when he visits. I was so afraid that this cancer, or complications from the surgery would make me less of a father to my boys. I know this is not the case now and that through this experience I will be an even better father. I swear!

 

Trish is great! She said that even if I am impotent that we will get through other means. She won’t let anything get me down. She says the 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. What makes some people I hardly know draw close to support me, while other close friends and some family members become like distant cousins? I guess the old adage about not knowing your real friends until the chips are down is really true. Another coworker, Joani, called twice and sent some odd things to my hospital room. I really can’t figure her out. I guess some people do strange things when faced with a life threatening situation. Greg, a business associate called tonight, but called me Bob? Maybe he just dialed the wrong number. He asked me if I could help him find a live-in helper for his family. I told him that once I got out of the hospital, I would check into it. What does he expect me to do about that now? Bizarre! Joe, another business associate visited and 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) called with his best wishes.

 

Gary (my boss) came in today and spent an hour and a half talking with Trish and me while I was struggling to sit up. I hate that chair. The day after I got out of ICU they made me get up and sit in it. I almost passed out. It hurt so much! Anyway, Gary said I looked a lot better lying down than sitting up. I’ll bet! He also makes both Trish and I feel so good about work not being a problem. He agreed with Bruce’s comment that the price of Western Digital stock was not going up or down based on whether I get back this month or next. These people at W/D are fantastic! They really care! Gary said he liked the idea of bringing the kids by our house on Easter for an Easter egg hunt. Ellen, his wife has to work that day.

 

It’s difficult to remember the details of the past several days, but maybe it is a blessing that we forget all the pain filled times. I remember the IV was difficult to get in before surgery. It took five or six sticks before it went 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 they told me before surgery. I remember getting a nice sponge bath from someone. But I remember feeling lost and alone. Then Trish came in and 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 a number of groups of students coming by and having my case discussed with them as a learning tool, I guess. I came out of ICU on Wednesday and felt really awful. I had tubes coming out of me everywhere. My nose, my bottom and front incisions, a catheter, IVs and of course the dreaded colostomy bag. Nothing in it yet, my stomach hasn’t awakened from the surgery, I guess. I am looking forward to the pain killers they put into my IV every few hours, they really help me relax so I can sleep. Pain is a terrible thing!

 

Thursday was when my stomach started trying to work again. Lots of gurgling and cramping, but I still haven’t had a bowel movement. It will be weird going to the bathroom from the front through my stoma, a little pink bud about an inch across that sticks up about half an inch from my stomach on the left side about at my beltline. There is a huge clear plastic bag pasted to my belly to catch the stool when I go. There is no muscle to close it off like with a rectum, so stuff just flows out at random times. I have no control.

 

Friday was a much better day. They took out the drain tubes in my bottom and the IV. I also got my first lesson on how to manage my ostomy bag. The nurse replaced the awful one piece plastic bag with a two piece ostomy product from Convatec. Compared to what I had on post-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 Tupperware like sealing ring that connects to the connecting ring on the ostomy pouch. A skin colored opaque bag that collects the stool and when it’s full, I just change it out for a new one. They told me about a local support group of ostomates that I can join to get tips on how to manage my ostomy.

 

It is really hard to get up. Every time I try I get dizzy and have to sit down again. It is so frustrating. I want to get up and get going, but my body just won’t do it. My leg strength is OK, but the dizziness is a real challenge. I break into a sweat and being to get light headed and the world 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 of our friends and family. I’ve gotten lots of flowers and plants all around the 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 from Brad, Pate, Phil and Trian, Joani, Carol and Gary. Craig’s parents, Jeanie, David and Darchelle, Bruce and the EPD (W/D’s Ehanced Peripherals Division), Gary and Ellen, Mike and Amy. Richie and Shirley, Gloria and Jay, Greg, Laurie and Stan, the folks at Wyle, W/D’s local distributor. Jim and Mason from CMS, Isabelle, Ken and Linda and Shelly. Aunt Analee, Jan and Dan, Midge, Kathy, Joe, Joani, Big Mike, 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 on Wednesday. I was really feeling bad, so I didn’t get a chance to get his phone number. Even with all that was happening with his cancer recurrence, 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. I was finally able to get up and walk this morning. If I can pee on my own I should be able to go home tomorrow. Donna and Jesse (Trish’s cousin and her husband) called to twice and they were glad to hear I was up and around. Jerry, the night nurse is really a nice guy and enjoys his patients. He says that most people feel differently after their hospital stay, but over time, they forget all the special ways they felt while in the hospital. I don’t want to forget! All the special people. All the love and caring and prayers and positive healing energy coming my 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 for their kindness.

 

Dr. Weil told Trish tonight that the tumor was inside my rectum wall and only a small polyp had broken through to penetrate the rectum wall. That was what finally caused the pain that drove me to tell Trish and she made me see the doctor. He said I was lucky that they caught it when they did. If it has been given more time to grow it could have spread 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’t get to go home until I can pee on my own. That sucks! Big Mike (a friend) called and said she would try to stop by. It was sure nice to see Earl! He really picked up my day. Trish brought the boys to see me today for the first time. I am so excited to see them. I’ve missed them something fierce! I almost couldn’t keep from crying. There were both so 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 he left 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 to see them again. I want to go home!

 

Trish and I had a real nice day today. We visited and touched and got back in touch with one another. It was really great! I turned over and Trish cleaned the cuts where my old bottom used to be. It is so strange that have it all sewed up back there. Trish’s touch makes me very comfortable with the physical changes to my body. Like it’s still me, no big deal!

 

Peggy and Earl came to pick up Trish and brought the boys. There were great. Jeff says my catheter and really that peeing into a bag was neat. Saved going to the bathroom! Josh really talked up a storm. He is so smart for someone so young. Peggy and Earl are going to come back tomorrow and visit. Earl was very encouraging about my strength and get up and go. He really made me feel good about my progress and about myself.

 

Ba Mui (our babysitter from San Jose) sent me a light up flower lamp from the Chinese restaurant we always went to in San Jose. She is just too much! I had my first real meal tonight including carrots, potatoes and jello and ice cream. It gurgled and was noisy going through my stomach, but with a little walk around the halls it worked its way through to the ostomy bag with any problems. When I went to change the bag I had to hold my IV bag in one hand the colostomy bag in the other and didn’t have another hand to make the swap. I called Trish and she came in and helped me get it done. She didn’t mind the smell or the poop. She is a saint!

 

3/23/86:

I gave myself a good bath today, first one since surgery. Boy was I a mess. I did it all my myself, quite an accomplishment, I would say. I took it slow and finished about 30 minutes. It took all my energy to finish and get dressed, but I really feel good. I’m on the hospital room balcony writing in my journal and bagging some rays. I haven’t been in the sun for almost a week.

 

Trish and Peggy and Earl are getting ready to go out to eat and them come and visit me. Richie (brother) and Shirley (sister in law) and my Mom and Dad are going to visit this afternoon with Gloria and Jay. Gloria is trying to get her business off the ground for customized clothing for Yacht Clubs. I gave her some ideas on sales. I wish her well.

I talked to Michael today and he may bring Amy, his gram, to visit today and bring some of his yummy taco salad. Dr. Crochie said that they will take out the cath again tomorrow along with the staples that are holding my stomach incisions together. They I can shower. Yeah! I feel really good and will work to keep this feeling of inner peace and satisfaction going.

 

Our neighbors in Mission Viejo, Bunny and Frank called and sent their best wishes and said they are praying for us. Ba Mui called today and I thanked her for the glowing flower lamp. Dan and Jan called at home today, 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 she just stayed and stayed. I’ve got to get home! Being away from her and the kids is killing me! They are my lifelines and Trish is my anchor in this 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’m afraid she is not going to be with us much longer. We joked and she laughed and had a fun time. I tried some of Michael’s taco salad and hope for the best.

 

Trish went to the cafeteria and got us both a sandwich for dinner. I am crying at the drop of a hat. What is up with that? I don’t know why. Trish says I’m depressed and tired. I’m trying to do too much too soon. I’m beginning to appreciate the long road ahead to recovery. I know we can get 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 all the love they have given me.

 

Richie and Shirley and Gloria came by for a visit, but I cut it short because I was tired.

 

I’m going to take a sleeping pill tonight in hopes of getting a good night’s rest. I’m going to call Peggy and Earl in the morning to wish them a safe trip and thank them again for all their kindness to me and my family. That’s what family does. Sharon (sister in law) and Kimber (daughter) came in on the train from Fresno today. Trish’s family never stops caring and supporting us. They are GREAT! They care so much for us it makes me cry.

 

Jeff called several time today. It really makes me feel good when he calls. Trish says it costs money to call long distance, so I told him not to call so much. I really felt sad to tell him that when what I really meant was 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 my sleeping pill. I’ll work on trying to pee on my own again tomorrow, so I can get home! I changed my ostomy bag and can push hard on my stomach without discomfort. Hurray! I am very encouraged about how life can get back to normal with such good ostomy products from Convatec.

GOOD NIGHT MY LOVE AND MY PRECIOUS BOYS!. (Hearts drawn with our initials in them.)

 

3/24/86:

I slept well last night and I’m just a little sluggish from the sleeping pill this morning. Mark took out my staples this morning but left the stitches in my groan for another day or two. I put on a new wafer and cleaned around 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 going to disrupt it any further. The disease is gone and so is the disruption to our lives! Trish called this morning and was up early with the boys and Kimber. We’ll make it an early night tonight. Everyone is so positive about me going home today. Me too! I can’t wait. It is hard to describe the type of love that’s grown since this whole thing started. I am amazed at Trish’s dedication and complete commitment to me. Her strength to keep the family going with the help of her/our family. Here’s my to do list of things to get done in the coming days/weeks:

Get thank you cards out to everyone

Read a few chapter of the Bible like David asked me to

Give my family back the two weeks we’ve lost in the hospital

Call the home hospital ET nurse to visit me at home to help with ostomy supplies and such

I am still not peeing on my own, but I do get to go home with a Foley cath strapped to my leg. It’s not what I want, but I want to go home more.

 

3/25/86:

Check out day. I can’t wait to get home. I was up at 6AM and showered and ready to go by 7AM. My bottom hurts and has a pressure sore, but I 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. You are my life, my hope and my love

Dr. Weil’s parting comments from the hospital:

Bladder function should return eventually, but may take some time. I’m to make an appointment with him in a week and just before I come in, I am to remove the cath and try to pee. If no luck, he’ll put it back in again. His total bill is only $,3000 and our share is just $600. He is a saint to have done so much for such a small fee. I’ll need to schedule follow up visits every three months for the first year after surgery. He said that if the cancer is going to come back it will be in within the first two years. Once we get past two years it will be smooth sailing! Sexual recovery is possible, but not likely. No option for an implant until at least 3 months after radiation treatments are completed. Dr. Weil talked with Dr. Koons, my radiation oncologist. They will target the radiation so as not to hit the remaining part of my colon, so that side effects should be minimal. Just fatigue. Dr. Weil said to be sure I stay insured and not to make any job changes that will jeopardize my health insurance for at least two more years.

 

The odds for complete recovery with no recurrence are still the same as before (70/30 against long term survival.) But I have done my part and taken the hardest most radical treatment path to give myself and my family the absolute best opportunity for long term survival. The rest is 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 Sharon took me to lunch at the Snooty Fox in Laguna Hills, then came home and 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 to get some Convatec two piece ostomy products. My bottom is a little sore but healing. Lots of gas tonight. I must have gotten used to the awful hospital food!

 
3/26/86:

Joyce, my Home Health Nurse, talked about how important rest is at home for recovery. I did too much this morning, playing catch with the boys and writing some thank you cards, plus a shower and getting dressed. It seems like so little to do, but I am wiped out! When am I going to get well? I have really loose stools and have to change my bag a lot. What a hassle.
3/31/86:

We’ve been walking a couple of blocks after meals, and it seems to be helping my digestion.
4/1/86:

Joyce said that in order to really heal, I’ve got to accept my disease, to beat it my getting in tune with my body. The intellect has to let go, so that 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. Can’t do much of anything.
4/8/86:

I’m 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, my home health nurse.

 

4/19/86:

Big setback today. I went to work and got home at 6PM, ate and went straight to bed. I am wiped out, tried to do too much, too soon. It’s been a month since surgery, why can’t I just get on with my life?
4/21/86:

I can’t sleep. I am really angry. Angry at my family. Angry at the doctors, Angry with myself. I think I am putting myself under too much pressure. I need a break from the stress. I’ve got to start prioritizing. What’s 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 who are going through this alone
4/22/86:

Irrigation is not helping regulate my bowel movements. I have constant loose 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 that irrigation has not allowed me to have the freedom from the toilet that I desire. I’ll keep trying, maybe irrigate at night instead of the mornings. This is my last week off work. I’m really going to miss all the time at home with Trish and the boys and all our helpful and caring house guests. I am really going to work hard to keep things from getting complicated. Stick with my priorities and to Hell with the rest. Can’t sweat the small stuff!

 

April 29, 1986:

Trish really wants me to go to Sacramento to speak with June to lean about holistic healing. I’m going to fly up on Sunday and back. I’m really worn out from work today. It seems I’m even more tired now than when I worked much harder before. I think the radiation is pulling on my energy reserves.

6 weeks post-op to 12 weeks post op

 

May 1, 1986
The radiation is starting to eat away the skin on my bottom and along the joints of my legs. Dr. Koons was pleased to see this, as it shows he is putting in a good dose of radiation. I’m really worn out and very short tempered. I’ve got to keep on some pain meds until they are through with 8 more radiation treatments. Trish hasn’t’ felt well either, but she keep up a strong front.
May 3, 1986
We just finished hosting Jeff’s pool parts. It was a real success! All the kids had a great time. Greg and Robyn (Christopher’s Mom and Dad) stayed all day. Trish and I are really tired.
May 6, 1986
My bottom is really burned badly. Dr. Koons is going to stretch out the treatment. I get today and tomorrow off. Treatments on Thursday, then Friday off. Then five more treatments every other day for two weeks. This should help reduce the burns. I’ve been working from home this week. Making phone call with good success. Gateway Computer agreed to SKU up the 60TI Western Digital external drives in all their stores. I saw Dr. Weil last Thursday. He was very positive about my recovery. He said he was sure I would have many years to live. I’m to call his office in July to set a 3 month check-up in August. He said that if I feel good, there is only a 30% chance that he will find something at the 3 month check up and that only 10% chance that the test will show anything.
May 7, 1986
I just listened to June’s hypnosis tape. I really believe this it is going to help me heal. What she is saying makes a lot of sense and I can really get with it. Relax, take time for your body to heal, imagine the healing light coming down from Heaven to touch each and every cell in my body, healing and eliminating any remaining cancer. June offered to fly down 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 stress point in my life 5-10 years ago.
May 10, 1986
It is a beautiful day today. Trish isn’t feeling well. She is lying down. I’m in the sun and the boys are watching cartoons. Mom and Dad came over yesterday for a BBQ and it was OK. They seem to be getting a handle on their emotions. I received a half treatment from Dr. Koons yesterday, the first since Monday. It seems as though the break has helped with the burns. I’m still taking pain meds and a tranquilizer. The pain makes me mad and impatient. Very frustrating!
May 13, 1986
The burning pain from my bottom stopped yesterday, but is still deep down sore and the skin is raw. I have been listening to June’s relaxation and visualization tape everyday and it really helps me relax and find peace. 30 minutes twice a day. Trish is real good to keep the boys quiet so I can have my meditation time. I have been taking the vitamins and supplements that June ordered, but I’m not into the diet and the visualization is challenging to get with. I went to work today until Noon. I was really tired. Trish took me around yesterday and we had a real nice time shopping and out to dinner. She is not feeling well today. I didn’t sleep at all last night; I really think the stress from work must be getting to me. I’ve got a sales quota to make and I’ve lost 8 weeks to the cancer treatments.
Gloria (my sis) and Richie (brother) called. I really made an effort to be nice, but I really have no feelings for them. They are still family but I just don’t love them like I did before the cancer. They did not show me love and caring like Trish and her family. They have shown me what real love is. Sharon and Eric (sister and brother in law) are coming down this weekend. I’m looking forward to seeing Sharon again.

May 14, 1986
Second heavy treatment today. It really burned. Dr. Koons scared me today by talking about his concern about damaging my bowel so badly that it might require surgery later to repair it. He hadn’t mentioned that before, I wonder why? Dr. Weil didn’t say anything about that possible complication. Got my commission check for the previous quarter while I’ve been off. $15,000 Wow! Not bad, I should get cancer and take 8 weeks off more often. We put it in the bank to cover the medical bills that is rolling in.

 

 

 

May 16, 1986
Trish and I had a great trip to San Jose. Trish did most of the driving. I only drove for about an hour. It hurts too much to sit still behind the wheel for long. We traded in our new Ford F350 double cab dually for a Ford Mustang GT and cut our payments in half. Went to DMV and got a custom license plate “R HOT GT” We stopped by to visit with Linda and Angel (our former neighbors in San Jose) and Ba Mui (our kid’s babysitter) who gave me a beautiful blanket. She is so very sweet but stutters and doesn’t speak English very well. She and Trish somehow communicate fine. It was a lot of fun driving R HOT GT home from San Jose. It has T-tops which come off and make it into a convertible. So much fun! We spent the night at Santa Nella. I got some new clothes at the mall and I feel real spiffy. Trish and I got really close on the 8 hour drive back to OC. She was really relaxed and my bottom didn’t hurt much. We’re waiting for Sharon and Eric to arrive. We went to lunch with my Mom and Dad. I am really starting to feel better about them lately. They really came through for us with Jeff while we were up North. June’s tape is really working. I’m getting into the visualization and imagery to help heal myself from the inside out. The vitamins and diet June ordered are really paying off. I have much more energy and less bowel issues.

May 18, 1986
We had a very nice weekend with Sharon and Eric. We went to brunch today and out to dinner last night. I was really worn out yesterday after my treatment. Only two more to go!!! Yeah! Tonight, Trish and I went to dinner at Ruby’s. There were a lot of families there and it made me think of our family 10 years, 20 years down the road. I didn’t even think that I might not be there to see them gown up. That made me cry. Trish said it’s OK to cry once in a while, but not to hold onto the sadness. Move on.
May 24, 1986
Trish was really sweet yesterday. She asked if I was worrying about not being able to perform in bed. I said I was, that it bothered me a lot. We have always had a great sex life. She said that I shouldn’t worry and that we were in no hurry. She said we’d give it six months, and then see. That really makes me feel at ease. She also said that we could get close in other ways. I’m looking forward to exploring those ways!
My last day of radiation treatments. Happy and sad at the same time. I didn’t want to say goodbye to everyone in Dr. Koon’s office. Everyone has been so nice and supportive. But I was really happy that I could start getting well now that my body is not getting contaminated with rads. I am really tense this morning and I don’t know why. My behavior has really been screwed up by all of this and my patience is gone. We did have a nice visit with Mom and a great dinner with Amy at Bobby McGee’s in Newport.
May 26, 1986
What a great day we had yesterday. We participated in the “Hands Across America” event, then to brunch and then out to the beach in Balboa. Going to beach is such a restful and restoring thing for me. I played Frisbee; body surfed, played with the boys, played an hour of volleyball and went to the fun zone for skeeball games with the boys. It is the first day I really feel back to normal after nearly 10 weeks since surgery. Mom and Dad come over today and Dad talked about his fear of 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’ll have to check in with him later on this. Trish has noticed how distant Dad has been since I got sick. She can tell he is troubled.

May 28, 1986
I am very restless and cannot sleep. I’m a little sore on my bottom for all the sitting yesterday. Yesterday was my first day back to the office full time. Trish said she really missed having me at home. That makes me feel really special! I irrigated yesterday morning without any trouble. It helped me through the day but tonight I’ve had a couple of bowel movements. Frustrating, but I’ll keep at it. Monday night, Trish and I got close for the first time since this whole thing started. It felt real good and Trish said she was glad to know we could still be intimate.

 

May 29, 1986
Yesterday was a tough day. I didn’t sleep well and in the early afternoon I began to sweat and get really anxious. I went to change my bag and it got all over my clothes. I left work and came home. I felt like such a failure and a coward to run home with my tail between my legs and poop in my pants. I cleaned up and lay down for a while and I was OK. My stoma is bleeding and it worries me. I didn’t irrigate today for fear I would make it bleed more.
June 1, 1986….My 31st birthday!

 

 

June 5, 1986
I’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 my experiences through treatment. I am having difficulty making work a priority. I’ve got to get my balance back between health, family and career. I’ve always put work first and focused on climbing the corporate ladder, but my heart just isn’t in it anymore. I guess cancer will do that to you? I do need to set some goals at work, at home and for my health and well being.
Everything at home is great. Trish and I are really in tune. The boys have been great through all of this. I’ve got some work projects to finish up. Cancer is no excuse for not finishing things I’ve started. But I’ll take my time and it will get done when it’s done. Hey, maybe I don’t need goals. Maybe that’s not the way for me anymore? Maybe I should just do what seems right that day and see where it goes? There’s something ahead for us. I can’t quite see or understand yet. But I know it’s there. Just a little more focus to reach the next level, the next chapter in our lives. Well, I’m at the last page in this journal; I’ll have to get another.

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 things down to figure out how I felt about them. Maybe I got back to my old ways of being too busy and focused on work. Maybe I just got my life back on track and didn’t want to stop having fun to write them down. I quit my job at Western Digital in Irvine early the following year and we sold our home in Mission Viejo and moved to Folsom to be near Trish’s family. The family that showed me what love and caring was really all about and I claim them as my own. That was 26 years ago. I have no recurrence of cancer. I live an active, full life as an ostomate and enjoy helping others in their journeys as cancer survivors and ostomates.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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