Steve W. is a 58-year-old husband and father of three who was diagnosed with pleural mesothelioma in June 2018. Following his diagnosis, Steve and his wife, Cheryl, began their “search for the cure” tour, visiting three top mesothelioma specialists. They ultimately chose to seek treatment and participation in a clinical trial at MD Anderson Cancer Center in Houston, Texas, under the care of Dr. Anne Tsao. Steve kept a journal of his mesothelioma journey – the highs and the lows – which has become his story. Chronicled in three parts, it is a story of hope and a search for the cure.
Part 1 by Steve W.
July 7, 2018
No one notices healthy people. Time begins to compress. Doctors appear foggy like a dream when delivering the “news” after surgery. Time slows down. Bucket list seems looming. Moving now at 4x speed. Money means nothing. Old lady at bar with unknown illness still. Bragging about money. Nagging pain just normalizes. Quest to be in best shape for surgery becomes obsession.
Thanking God for Cheryl and family. I don’t know how anyone could get through this without a great supportive wife.
July 24, 2018
I walk into Mayo Clinic healthy, feeling great but see people very sick in lobby in various states of treatment. Thoughts go to, “Is that me soon?” But feeling extremely good now. Challenge to win and beat this! No one has. Will document win on vlog. Note to Pierce: “I feel amazing today. God gives us a day at a time. I’ll take it!!!!” When friends call, some seem uncomfortable. I think they are afraid of their own mortality. Tattoo crew is incredible. I would never ask it, but people do things you can’t believe! And don’t expect.
How do people do this without support? Cheryl and I are linked…family etc. People that have dealt with this get it. Period! Love the challenge; despise the disease! Quote that! Tattoo. Lady at oncology checks in husband with a smile. Birthdate: July 22, 1932. He is still fighting. Love that!!
July 30, 2018
MD Anderson notes: Everyone has same bandage for IV. Tons of people in waiting rooms. The waiting here is much worse. Long waits. Not on time. Mayo ran like a clock. You never realize how much sickness and suffering there is till you walk around this hospital. There are lines to get in.
August 2, 2018
Day four here. More meetings and tests. Approved for surgery Tuesday. That’s good. Walking around MD. I see everyone with hospital wristbands and bandages covering up IVs. Same. Strangely I feel connected but not really wanting to be. It’s my fight, but we are warriors the same. Old and young. Bonded. Heading back home now for four days. Then back for first surgery. Winning. “I am the cure” – tattoo. To motivate surgeons.
August 4, 2018
Had great surprise party for Cheryl!! Great to see everyone. Very upbeat. We both needed that. I can tell fluid is now building in my lung and now severe pain in my hip. Maybe the 14 miles I did last three days. Don’t know. Timing good for surgery. Lung would be not be functional in a week!
August 6, 2018
Fly back to Houston for triple biopsy (not the kind of triples I like). I’m working hard to be nicer to people, but it’s a challenge sometimes.
Got another tattoo on my chest. No one will see it really but me. It’s “I am the cure” and a medical symbol. Put there to motivate and inspire the surgeons that will be healing me!
August 8, 2018 – Cheryl’s birthday
Day two at MD Anderson after surgery. Doctor says it went well and does not think it spread. Very good news but need to wait for final results. More pain today than yesterday. Cough and neck pain at like an 8. Crazy amount of narcotics they give to deal with it.
11:00 PM: Now running 101 fever. Just got chest X-ray, blood work and urine tests. Not sure what it is. But training my mind to lower the fever. We will see results. So first complication on day two. Bring it on!
August 15, 2018
MD Anderson first chemotherapy treatment. Well, a week of coughing after surgery not fun. Seems to be getting better. Day 10 in Houston. 4 in hospital. I was not worried about last surgery but starting down this road seems daunting. Best way to describe it is a war. You have to win the battles, get bloodied on the field then repeat.
I may have been in slight denial, but it is now all there. Guess it’s like getting on a chopper and it’s all-good until they drop you in enemy territory!!!! Fight on!!
August 16, 2018
Finished first round of chemotherapy treatment. Brutal. 13 hours at hospital. 8 hours hooked to IV. Seems they pumped about 5 gallons of crap into me. My body will respond. I’ve trained for this.
Finally home! Houston now seems like a strange alternative universe.
August 17, 2018
Two days post treatment. Horrible day. Sick and in bed. Feel a bit better late.
August 20, 2018
Last two days tough. No sleep or appetite. Abdominal pain continues. We are 5 days out now from treatment. Remain tired, etc. low energy Jeb…feel better late.
August 21, 2018
6 days post chemotherapy treatment. First meal out. Feel ok. 50%
August 22, 2018
7 days pushing 70%. Effects from surgery are bigger problems. Painful cough.
August 26, 2018
Saturday. 80% energy feel good. 2 wines! Cough still. 10 days post treatment.
September 4, 2018
Back for round 2 (of chemotherapy).
September 6, 2018
Day one post treatment. Loaded with new weapons to fight. CBD oil and ReliefBand for nausea. At airport. Feel ok. Headache.
September 7, 2018
Friday. Did not sleep well. Slight stomach pain. Took anti-nausea every 8 hours. CBD and relief bracket. Am weighing 178.8 lbs. Did not take anti-nausea all day. Eat two meals but now feeling a bit sick. Hard to even drink water. 6:30 PM. Day was not too bad. Dinner not possible. I refuse to see myself as a sick person but seem to be focusing on being normal again. Life has changed. Maybe for reasons I will later understand and appreciate. It’s a fight to the death. I will win.
September 8, 2018
Am weighing 175.5. Not much sleep. Low energy. Stomach issues. Not horrible.
September 9, 2018
Sunday. Not too bad. Ate three meals and had a beer! Low energy.
September 10, 2018
Monday. Overdid it Sunday! Too much food I think and dessert. Long night and not feeling good this AM. System still not working, day two very tired all day. No energy.
September 11, 2018
Am weighing 173. Down 11 pounds. Much more of the same. Day 6.
September 26, 2018
Wednesday. Round three of chemotherapy. Hotel is hilarious. Like a 3rd world nation! 3.5 stars on Priceline. Heard lady leaving MD while we were sitting in front “I’d like to see this place in the rear view mirror.” Amen to that. Here for cure and then watch my taillights fading!!!!
Third round done. This is weird thought but seeing all the outpouring of love and support from friends and relatives is unbelievable. Did not know this many people cared! Lol. Like seeing your own wake. I said it was a weird thought. Guy next to me on airplane has shirt that says, “no fight is won without pain.” I love that. Feel okay on airplane now.
October 1, 2018
Monday. Paige’s birthday!!! That’s good!! Five days post chemotherapy. No appetite or energy. Stomach issues. Seems same pattern. Easiest way to describe chemo is like being stabbed and bleeding out slowly. Ask anyone. Hoping to feel better in a few days. Fight continues. #winning. Basically, whole body aches. Hip, shoulder, legs, etc. Who knows what is causing it. Have not exactly been active!!
October 2, 2018
Tuesday. More of same. Pain and discomfort rage on!! The cancer battles to take over. The doctors battle the cancer with treatment. I battle both. Energy level at 10%. Worse so far.
Vince Lombardi:
- “The difference between a successful person and others is not a lack of strength, not a lack of knowledge, but rather a lack of will.”
- “Fatigue makes cowards of us all.”
October 17, 2018
Wednesday. Last round of chemotherapy in Houston. It always starts with a blood test, but these are a different experience. About 50-75 people in waiting room. They post your name on a screen and give you a band with a “number.” I hate this and refuse to give them my “number.” I’m a person with a name!! Pretty much what I tell them. You are literally waiting in a long assembly line to get blood drawn.
October 19, 2018
Friday. Hotel has a prosthetic convention. Filled with amputees. These people show amazing strength and courage to live normal life. Stuff I’m dealing with is for chumps comparably. Blood test was off; could not get chemo. Back here again today waiting for blood work. Hopefully we can get this done today!
Sent to Paige:
“No matter how far you fall or how much it hurts, you are never out of the game.” And no one fights alone!!
Back in Chi town!!!
November 28, 2018
Back in Houston for surgery tomorrow. I’m overwhelmed with the support of family and friends. Many taking time to support me, sending texts, calling and even coming here! Wow. And of course the “tattoo crew.” I’m inspired to win and fight. I expect to get through this fine but will deal with a painful recovery. “Pain is temporary.” It’s amazing the amount of suffering with this disease. The war has changed. Winter is coming. There is a new battle. We will win; just depends on how bad we have to bleed!!
December 5, 2018
Heard great quote: “The goal is to die young, but LIVE as long as possible.”
December 14, 2018
So much has happened. I spent 6 months physically and mentally preparing for surgery on November 29. Showed up in Houston day before. Had a few tests prior to that. Met with surgeon. He basically tells me based on test results the chances of me dying within four days is now 30%!! That’s up from 3-6%. Very heart-wrenching meeting. The kind you see in movies, but we are actually living it! I’m not trying to die so it’s an easy decision to delay surgery until further tests on heart can be done to determine survivability of surgery. It seems the damage to my heart is taking its toll. I undergo three days of “astronaut” testing on heart. Results: clear for surgery. Doctor tells me not to worry; he operates on 80-year-olds all the time. I say, “well, I’m 54 and in shape, it should be easy for you.” “Yes, he says, but you have the heart of an 80-year-old man.”
Surgery delayed to January 10, 2019 now. I’m spending next 30 days in gym training like I’m going to Olympics! Winter is coming…..In the light- Led Zeppelin. “Upon us all a little rain must fall.”
December 21, 2018
Have spent last 2 weeks mentally and physically preparing myself yet again for surgery. Becoming relentless about getting in top shape. Maybe enjoying a few too many wines but still my body feels very good with the six-day-a-week workouts. There is a reason for everything. Maybe I was not ready. Maybe the doctors were not ready. Maybe God was not ready. He has a plan for me to fulfill yet here. “You only live as long as the last person remembers you!” That’s deep. Blessed to be able to enjoys holidays!!!
The views and opinions included in this blog belong to their author and do not necessarily mirror the views and opinions of the Mesothelioma Applied Research Foundation.
