A LONG GENO update

[geno]

Geno's Journey with Cancer
by Dawn Stratton on Saturday, November 6, 2010 at 9:32am.

I wrote this because my father has never told the whole story and several people have asked to see it. I called him one day and spoke to him, then when he was too weak to talk, I spoke to my stepmother, Cathy to get the remainder of the details.

<Editorial Note: I was trying to write this in the 3rd person, but as I am writing, I find myself referring to Gene as “dad” or referring to the family as “us” so as you are reading, please ignore these grammatical errors and forgive me. This is tough for me to write and re-live. I will go back and correct these one day. But for now, I ask you to please overlook this. This is a very rough draft, but wanted to get it out here asap with the benefit quickly approaching>



The Journey

Gene Wiley was a stubborn man. He never went to the doctor for regular checkups. He felt fine. He followed in his father’s footsteps and worked at Ozzie’s Barbershop for all of his adult life. He was certain he was going to work there until he couldn’t stand anymore. He loved his job that much!

He had no symptoms to be of concern. One day he started getting those irritating hemorrhoids, but that’s nothing. After he couldn’t get relief, he relented and went to the doctor in July of 2006.

While he was there, the doctor advised him that he should also have a colonoscopy. After all, he should have had one at least 8 years before. Actually, everyone should have one at the age of 50, if not before.

Soon after that initial appointment with the general practitioner, Gene went in for a routine colonoscopy—or so he thought. As the procedure was being performed, the doctor found a blockage. Sometimes the doctors can remove small blockages during the procedure. Not this time, this one was too large.

Following the colonoscopy, Gene was scheduled for a surgery within a matter of days to remove this blockage. The doctors went in and as they were working to remove the blockage, they had to resection his colon by removing approximately 18” of matter. It was clear this was cancerous. During the same surgery, it was also found that the cancer spread to his liver and lymph nodes.

While he was in the recovery room, the doctor went to the waiting room to update his wife and father, Cathy and Ozzie Wiley, who were anxiously waiting. They both went numb when they were told Gene had Stage 4 cancer, the most advanced stage, and only had three months to live without chemotherapy treatment. The tumors were found in the ascending colon area, on both sides of his liver and he was diagnosed as having an apple core lesion.

The doctors advised the family that there was no cure at this point. In general, only 8-15% of Stage 4 cancer patients live five years. Chemo wouldn’t cure the cancer, but it would certainly prolong his time here on earth.

Life certainly will never be the same again for this family.

Now, local residents are planning a benefit for him on Saturday, December 4th between 1:00pm-4:00pm at the Davenport Church of God located at 308 South Blvd W, Davenport, FL. The event will include dinner, raffle items, and more. Funds will go toward general living expenses and help with medical expenses.

Obviously, this was a no-brainer. Chemo it was! After all, he has so much to live for: his loving wife, Cathy; two daughters, Dawn and Heather; and a son, Jeff. He also has eight grandchildren: Paige, 14; Janell, 10; Garrin, 10; Caden, 8; Benjamin, 7; Blake, 6; Jeremiah, 5; and the newest edition to the family, Abraham, 4 months.

Gene was immediately scheduled to insert a port into his upper left chest. In October 2006, Gene began his first treatment with Folfox 4 and Avastin. This treatment actually consisted of a total of 5 medicines being administered each treatment.

For those unfamiliar with how chemo works, each series of chemo is 12 treatments. Folfox 4 and Avastin were administered three consecutive days every other week. For 48 hours during each treatment he had to wear an infusion pump. The infusion pump had a balloon in it measuring approximately 6” long and 1” in diameter. During those 48 hours, the spring in the pump would infuse one of the medications into the port.

Gene was bound and determined he was going to work as long as he could. He pushed through with every ounce of strength in his body to go to work each day to continue to provide for the family. He worked until he just couldn’t do it anymore.

Folfox 4 is a pretty aggressive treatment. Because the cancer had already metastasized, or spread, throughout his body, the medicine seeks to destroy all the bad cells throughout the body. In turn, this meant that a lot of the healthy cells were destroyed as well. This meant a ton of side effects, and it seemed new ones popped up each week.

What side effects? You might want to sit down if you aren’t doing so already:

Chills

Chest Pains so bad he was hospitalized multiple times

Pain in Liver

Constipation

Diarrhea

Hiccups (for weeks on end without stopping)

Neuropathy in his hands and feet

No sensation of touch, he couldn’t feel anything

Walking was like having shoes full of rocks and sand, and it hurt like mad to walk

Headaches

Vision Impairment

Loss of Dexterity

Loss of Hearing

He could have nothing colder than room temperature or it gave him a shooting pain throughout his entire body

….and so much more.



One week after his last treatment of the first series was complete, he was required to have a CT scan to determine the change in the size of the tumors. One week following the scan, he received his results. Then it was back on the next round.



After his second series, there was a significant decrease in the size of the tumors. We were thrilled to hear that news. The Folfox was working and the doctor recommended that he continue the treatment. 24 weeks on, 2 weeks off. The time off between treatments was to allow his body to build up strength before the next series started because the Folfox completely destroyed his body.



This regimen continued for three years. During the three year time period, there was virtually no change. The tumors didn’t increase, they didn’t decrease, and there were no new tumors found. Though this wasn’t GREAT news, we were positive in that the cancer was not spreading.



At the end of the third year, when the results of the CT scan came back, the doctor advised us that the Folfox was no longer working. There were new growth and new tumors so a new treatment needed to be determined. It had now spread to both lungs.



Luckily, Dad had pretty good insurance and opted to have a chemo rider. <As a side note, if you are ever offered a chemo rider, get the largest rider possible…you’ll thank me later for that advice.> The cost of Folfox/Avastin treatment was $15,000 per treatment. Yes, you read that right. I’ll do the math for you. $15,000 x 12 treatments = $300,000 per series. In addition to the chemo, there were medications to be purchased– Zofran for the nausea and Morphine for the pain. Zofran itself was $300 per month.



The chemo rider on Gene’s insurance maxed out at $100,000. After that, there was no more insurance and everything had to be paid for via cash.



Despite having a written diagnosis of terminal cancer and proof there was no way for him to work; Medicare would not cover any expenses until he had been out of work for 24 months. Once Medicare began, it only covered 80% of the medical costs.



As if the cancer diagnosis wasn’t a big enough blow to the family, the recession was in full swing and so were cut-backs at many employers. Cathy had worked for the same company for 20+ years and suddenly, her position was eliminated.



What to do now?



The wonderful people at Gessler Clinic in Winter Haven never stopped treating Gene, even though he was without insurance for so long. Dr. Joseph Burgnes was his oncologist and he wanted to make sure he could do everything in his power to stop the cancer from progressing. These people have become “family” and we will forever be grateful to them for all they have done and continue to do for our family.



In early 2010, Cathy was finally able to begin working again. Though this took her away from Gene several hours each day, there was a mortgage to pay, an electric bill to pay, gas to get Gene back and forth to the doctors, and much, much more.



In March of 2010, the doctors opted for another type of chemo since the Folfax was no longer effective. This time they thought it might be better if he were to stay home instead of having to trek back and forth to the doctor’s office for treatment. The new treatment was called Xeloda. This would be taken for 12 weeks in the form of tablets. He was to take two tablets in the morning and two in the evening.



On what was to be his fourth day of Xeloda, Cathy was about to leave for work and she went to rouse Gene to let him know she was headed out for the day. She couldn’t wake him, even when she shook him and sat him up. He would just collapse back into bed. After attempting to wake him to no avail, she called 911. Paramedics arrived and they attempted to wake him as well and could not do so. Immediately, they began bundling him for the ride to the Winter Haven Hospital.



The only thing Dad remembers of this trip was how unbelievably cold he was and a constant gasping for air. His memory of the following few hours is blank, so from here, I can give you my account from his bedside.

Apparently, once he arrived at the emergency room there was no change. He was totally non-responsive to everything the doctors and nurses did. A CT scan and EKG was performed, and there was no change in his response.



The oncologist arrived and given the circumstances suggested that she gather the family and a priest to read him his last rites because his time had likely come. He had been fighting a long, hard battle with Stage 4 colon cancer for almost four years and his body was nearly torn apart inside out.



I live in Indiana, but just so happened to be in Florida working at our Lakeland office. I had actually planned to surprise my father by visiting him that evening. Apparently, he had other plans. On my way to work, I received a call from my stepmother telling me what happened. Immediately, I turned around to head to the emergency room. I also called my mom to tell her I was going to the hospital and asked if I could stop by her office (it was on the way) because at this point I was crying so hard I had given myself a migraine.



When I got to her office, she decided she was going to go with me. Though my mom and dad divorced many years ago, they have always been quite friendly with the entire family and we have always been one united family who love each other.



Upon arriving at the ER, I went into my father’s “room”. I watched him as he lay in front of me, all the while gasping for air and hiccupping at the same time. It was scary. He wasn’t awake, but his body looked as though it was having convulsions. Only two visitors were allowed back at the same time, so my mom came back with me for support. As we were there with my father, I was scared, I didn’t know what was happening, I had never seen such a thing…and to be perfectly frank, there was no doubt in my mind that day was the last day I would ever see my father. After a few extremely awful convulsions, I looked at my mom and told her, “Go get Cathy! This isn’t good.”



Cathy walked back, the pillar of strength she is, she looked at my father and said, “Oh, honey, it’s okay….this is just hiccups. He does this all the time. It’ll be fine.” WHAT?! This isn’t hiccups, this is so much worse, I thought. She always has such a calming manner; she can normally make everything okay. But not this time, I was certain I was losing my father. Everything was moving in slow motion.



She walked over to my mother, and I will never forget her hugging my mom and giving her a very long, loving, warm embrace and telling my mom she loves her, thanking her for being there, and telling her that she will always be a part of this family. I couldn’t ask for a better set of “moms”.



My father continued with his convulsive, hiccupy gasps but didn’t show any response at all. I walked out to the waiting room and while I was in some sort of presence of mind, I decided it was time to write his eulogy. I knew that I would be speaking at the funeral, and I needed to get my thoughts on paper before I couldn’t emotionally do it. So there, in the Winter Haven Emergency Room, I wrote it. I tried to have a bit of humor, a bit of philosophy, and convey the words I wanted to everyone who would be in attendance. I felt a slight calm come flow through my body after writing it and I quietly tucked it away.



An hour or so later, I went back into the “room” (I don’t know what they call those areas in the emergency room…they are just separated by curtains, after all). As I was holding my father’s hand, his eyes opened. Glassy, bloodshot, and in a daze, he looked up and said, “What day is it?” Cathy answered, “It’s Tuesday.” He said, “It’s Tuesday? I made it another day?” “Yes, Gene. You made it another day.” And with that, he collapsed again. Those simple words made my heart drop, because it was at that brief moment, I truly realized that my father wakes up on a daily basis wondering if he made it yet another day. I guess I “knew” it, because my father and I have discussed it, but it was the first time I FELT it.



The doctors decided they were going to move him to a room, one where we could visit with him and where Cathy could sleep with him. Throughout the four years, she has taken him to all of his chemo treatments, except once when she had to work when another family member went with him. She has been by his side to hold his hand, support him, and to give him strength even when her own strength was diminishing. I have never seen such love between two people.



When he was in the private room, he still wasn’t very responsive. He still had the hiccups, and he was still doing really bad. They had him on an oxygen mask and were monitoring his oxygen blood count constantly which made him look all the more scary. A few hours after he was in the room, he woke up. He was still hazy, and he looked around wearily and said, “Is it still Tuesday?” After we replied yes, he went back to sleep. It was at that point I knew my dad would be okay. For now.



Over the next few days, he stayed in the hospital but showed a marked recovery. It was miraculous. So many prayers were answered that week. As to what exactly happened, that is still a guessing game. No one knows or understands it. The only clear and unmistakable facts were that his liver and kidney functions completely shut down, his lungs filled with fluid, and his oxygen levels had gone haywire.



After IV’s, constant monitoring, and oxygen, he finally began regaining consciousness and cognition and was allowed to go home. A week later, he had an appointment with his oncologist to make a decision on his next course of treatment. It was to be the toughest decision he had to make in the four years of treatment he endured. He had to choose whether to continue chemo or let nature take its course.



He wasn’t the only one to make a tough decision. Cathy, too, had to make a decision. Because she was still in her 90-day probationary period and missed work to be with my father at the hospital, her boss gave her an option. Come to work and continue here, or if you miss another day, you lose your job.



Cathy made a conscious decision, one that many won’t understand. Dad qualified for hospice care. They would come in twice a day to make sure they could give him his medicine when she was not able to. After much thought and contemplation, she decided that she couldn’t go back to work. She needed to be by his side. What if something like this episode happened again when no one was there? What if Dad forgot he had taken medicine and took too much (this has happened many times)? What would she do? This was the person she had spent almost her entire life with, and she couldn’t leave him. She wanted to spend every possible moment she could with him. She wants to be there to the very last breath, no matter the cost. In her words, "material things aren't important", it was spending that last time together that was most important.



A week later, the decision was made to continue treatment.



This time, the chemo was to be given intravenously (I don’t remember the name). He wasn’t on it very long before he was hospitalized for a week in April 2010. He was extraordinarily weak and dehydrated. After getting out of the hospital, they chose yet another medication for chemo.



There were only two medications left that he hadn’t tried, so the doctor suggested Erbitux. Erbitux is a targeted chemotherapy. This means it only affects the “bad” cells in the body. There has been no hair loss, though fatigue and pains are still constantly present, the side effects have been minimal as compared to previous treatments. He also takes Baclofen, a skeletal muscle relaxer up to 4 times daily to help with the hiccupping. He takes Lyrica to relieve the numbness in his feet and hands due to the three years on Folfox and Avastin. He take Morphine to assist with the pain; however, due to the episode in March, he has to be extremely careful so that his organs do not shut down again. And as always, with chemo, there is the nausea. He takes Zofran to help with that. The chemo itself is once per week for 12 weeks. After the first series of treatment, the CT scan showed no new growth and the tumors already present were ever so slightly smaller. However, he was still weak.



After each series, the question is always the same. Does he continue chemo, or does he let nature take its course?



His body is worn down. He is frail, his immune system is weak, he is exhausted all the time, naps more than he is awake, and though he often shows the positive side to his friends, his spirit is broken. The doctor told him that if you were to cut his liver as though it were a block of cheese, it would look like Swiss cheese. Though it is difficult to discuss, the doctor has also advised us even if the cancer goes away, with a 100% probability, it will return, and this will ultimately be terminal.



That being said, there have been things that have brightened my father’s spirits. I told my father I was writing his story, and I asked him if there was anything that he wants to share with people who might be reading this. He wants everyone to know he has found God. He knows that God will take care of him, no matter the outcome, and he is at peace with that. As my father likes to say, “Each day I wake up on the green side of the grass is another day to cherish.”



In June of 2010, when it came time to make that decision, my father decided that he needed more than a two week break. He needed to not only strengthen his body, but his soul as well. What better way to do that than go back to nature? My father loves gold mining and some of his friends decided they wanted to bring him out to Wyoming. Cathy had never been before and so off they went for a week.



Dad wasn’t able to physically do much, but sitting by the fire and being surrounded by his loved ones perked his spirits and reinvigorated him, as much as he could be given the circumstances. One day, he was able to go to the creek and do a little panning for gold. It wasn’t much, but it certainly helped.



He went home with a renewed spirit and decided that yes, he was going to take another series of chemo. There were positive results with Erbitux before (no new growth is ALWAYS positive) and so he was to continue again. And so he did.



The hits kept coming, though. The electric bill kept rising and rising, and on their very limited salaries, could not afford to pay both the mortgage and the utilities, so they began purging everything. Selling everything they didn’t have a need for. Camping equipment, furniture, clothing, musical instruments, everything they could find that wasn’t an absolute necessity. Though he published a cookbook “Geno's Camp n' Kitchen: Great Recipes for the Camp, Grill or Kitchen (Volume 1)” <which by the way are still available for purchase>, the proceeds haven’t been enough to cover the basic household expenses. They were forced to leave their longtime home.



They have recently moved into what we lovingly call the “cottage”. It is actually a detached one car garage that has been converted into a small, but efficient living area. They are close to Jeff (my brother) and his family, and will better be able to afford expenses though there is still that sticky situation of everything that is past due or in collections.

Right now, I think my father feels isolated because he doesn’t have an internet connection (crossing fingers this will happen very soon), nor a regular phone line. He does have a prepaid Tracfone, so he is able to speak to friends and family when he is able.



As of today, November 4th, he is on his 9th treatment of this series. His last treatment is the day before Thanksgiving. We have a lot to be thankful for this year. The family has been very blessed with support from friends and family. We very much appreciate the loves, prayers, friendship and health of everyone who has been there for my father.

When the family found out there was to be a benefit, you can’t imagine how they felt. Though they have the very basic necessities and don’t feel material items are important compared to good health, they feel very blessed.



When I asked what they needed, it really wasn’t material things, but really the very basics. They don’t generally have enough money to stretch the food through to the end of the month. They need gas to get back and forth to treatments, grocery store, or run other errands. Those cell phone minutes sure do help, too. Recently, I purchased a card which automatically doubles any minutes which are purchased for the lifetime of the phone. So if he purchases a 30 minute card, it is doubled to 60 minutes. That will certainly help stretch his time. And though it may seem indulgent, my father needs cigarettes. “Need” may be a strong word in this sense, but he has smoked his entire adult life, at least for as long as I can remember. His doctor told him that at this point, he should not stop smoking because it would cause too much stress on his body and possibly send him into a downward spiral. So, yes, I put this into the “need” category.



Again, I asked a couple of personal questions to share with readers. I asked Cathy what the most difficult part of this is for HER. She said even though he has been doing remarkably well, she feels helpless watching someone she loves and has spent basically her entire life with decline knowing that one day when she wakes up he won’t be there.

When we were discussing this note, letter, short story, whatever it is...I spoke to my father as long as he could speak before he was too weak, so I didn’t have the chance to ask him the same question, so I posed another question to Cathy. “What do you think the hardest part is for Dad?” It wasn’t the feeling run down, it wasn’t the pain, it was that he’s not able to provide for his family. He truly did plan to work with his barber chair for another 30 years. He’s not able to do the things he enjoys. Even visits with family are cut short to only about 15 minutes before he can’t take anymore. He just can’t “be”.





As his daughter, the hardest part is knowing that he is in pain 24 hours a day and there’s nothing anyone can do for him. And this is the selfish part of me, it’s knowing that the ultimate outcome that we have been struggling with since October 2006 is that one day in the not-so-far future my Daddy won’t be able to hug me or kiss me until we meet again.



I still have the eulogy I wrote that day in March. I know I'm going to have to read it one day. It won't be easy, but I'll do my best.



I struggled with myself on whether or not to tell my father I wrote it. I eventually did, and I shared it with him. After all, it's not very often you can read your own eulogy. I'm keeping it because it's all still relevant. I'm sure I'll have stories to add, things to share, and of course I'll try to make it a little shorter, because I do tend to get a little "word-y". But I'm hoping that by the time it has to be read, I'll have a lot more gray hair, and maybe he'll be a great-grandfather, because we have so much more we have to share with each other, and I don't want to take any second for granted.



The next decision to continue or not with chemo comes in early December. It depends on what the CT scan reveals. Right now, Dad thinks he wants to take about month off to rebuild his strength and get through the Christmas holidays without being sick. Hopefully, the Erbitux continues to work. With only one chemo treatment left, the options are obviously limited. No matter what, he's a fighter and will use his strength to push through day by day. For my dad, when he reads this, I want him to know, "I love you, Dad."

If you stuck it out this far, thank you for reading the story of my father’s journey....and I’m going to take this time to do a Public Service Announcement because this journey could have been prevented.



Public Service Announcements Regarding Colon Cancer



1) Screening tests are very important for those over the age of 50. However, if there is a family history, screening should begin at the age of 40. If colon cancer is found in its early phase (Stage I), it is completely curable.


2) Some dietary factors increase a person’s risk of colorectal cancer. Check with your doctor.


3) Typical symptoms include bleeding during a bowel movement, fatigue, and weakness. However, as with my father’s case, there may be no symptoms at all.


4) During a colonoscopy, small polyps are able to be removed. If there are any abnormal masses found, surgery is usually performed to remove the cancer.


5) Don’t underestimate the chemo riders in insurance policy as stated above. You never know when you might need it. If you have a family history of cancer, it is that much more important to include it and obtain the highest coverage you can afford. It can quickly be depleted.

[golden optimist]

Thanks for posting that Dawn.
It was a very hard read for me as I'm sure it will be for many people that know Gene.

geneand friends.jpg (48.02 KiB) Viewed 3914 times

Geno, Kathy and friends at Douglas Creek 2010. Kathy in orange and Geno to the left.

Leonard

[russau]

Im keeping your family in my prayers as you go through this journey!God Bless!

[russau]

i printed out Dawns story of her father and my friend. and like Leonard i had a hard time reading it and thinking about it over the last few days.Gene is a good friend and will always be my friend. its tough when theres nothing you can do but pray, and let it all in the hands of someone that knows what they are doing!God bless you Gene,Cathy and your family!!

[geno]

Thanks Rus and LOeonard,,It meansa lot to me tat you managed it all; the wway through tje story. I Recently received a gft from 'Richard from IA sd it was geatloy revoeved sd I must passs aloong a grEATthank you for the generous giftrl,, I willl certainly use ir around my next good camp fiore... God Bless You Richard and may he bless you as he has blessed me with friends like you. Hopng t o meet yuou soonl Thank you are such pitiful words to describe my feelings for wha yo have donw,,,mbut they are all I HAVELL, gLOD bLESS...tHANK YOU!!
GENO

[Hoser John]

Thanx from a great friend is ALWAYS sufficent buddy--thanx-John

[dickb]

Hi Geno:

Glad to hear that you got the card in good condition! I hope it brought a smile to your face. I know in these difficult times that they don't come often enough anymore. Just keep up the fight and take each day one day at a time. Smiles and happy times really are precious and Family is the true wealth in our lives. Be well!

By the way, I'm waiting for the next edition of the cookbook. Cut out the slacking and get busy.

Dickb

[geno]

Dick, it's taking me a whole lot longer on this one. Thank you again for the support... now I have a whole truckload of firewood

[russau]

Dick, it's taking me a whole lot longer on this one. Thank you again for the support... now I have a whole truckload of firewood

HaHa, with Leonard that ought to last about a hour and a half! but youll be warm!