Steve W. is a 56-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 2 by Steve W.
January 8, 2019
Well, got to enjoy holidays. Wheels up 7:00 AM on way to stage 3 of treatment. Surgery V2.0. Wars are won in the trenches. It’s always dirty and painful. It’s the team around you that raises you to victory. Winning is where hard work and preparation meet!! Would like to fast-forward 2 months. I remind myself that pain is temporary.
Today’s screensaver!!!!
January 9, 2019
7:45 AM. 20 minutes on bike. 25 on treadmill then ran 1 mile to MD Anderson for tests pre-surgery. Wars are not won by the weak. I think whether you can crawl, run or walk, you should as long as you can as hard as you can. Guns are loaded. We win by the grace of God.
Probably 50 people waiting in line for a blood test. Incredible. Each with their own story. I feel this is my personal Super Bowl to win! Jacked up “never out of the fight.” Cheryl asked over dinner, “what have you learned the most over all this?” I told her, “Don’t underestimate the enemy. Time. It must be respected and managed by the minute. When going through hell…Keep walking.”
January 10, 2019
Surgery…Well, surgery went well. Doctor was very happy; only 3.5 hours. Expected 7. First four days in hospital. Just pain and drugs. Not so bad till digestive system shut down and kidneys started to fail.
This is the part that I became delusional, hallucinated, and was in a blackout for three days.
I remember like a dream. Very blurry and somehow outside body. He asked me if I knew where I was. I thought very hard. Then realized I did not. That’s when things got bad. It was complications from surgery. Sodium levels plummeted causing kidney failure. I recall going to ICU in very bad shape. Every fluid coming out of my body from everywhere out of control. Massive amounts of IVs and drug tweaks for three days brought me back to life. Blood draws every two hours for three days but what now? They released me after a few more days but only to be rushed back into hospital with new problems. Fluid backing up big time. Especially on heart. This was close to catastrophic heart failure. Emergency surgery to drain fluid on heart saves me again! No problem. Stick a needle in your heart while still awake. I survive! God’s will plus prayers and support are the keys to overcoming worst seven weeks of my life.
February 21, 2019
It was a cold and wet February day when we touched ground back at O’Hare. 7-week fight. It was hell, not going to lie. Florida trip was great, but I was not really able to enjoy it as I usually would. Very sick.
March 3, 2019
When I was blacked out, the blur of life was flashing by. Hallucinations were bizarre and scary. Blur of doctors coming and going. Cheryl in room talking to them. She is my superhero!! Live like you’re dying! Time for life.
March 25, 2019
New boat name “Stolen Time” — just need a boat!! Here in Houston for round one of treatment. Had a scare with high liver enzymes. Got blood tests and trend is down. Thank God. Could have been kicked out of trial! Have only until April 1 to start. A month ago, I would never have thought I would feel this good and I’m about 50%. Still very limited on cardio and strength. Pain continues all over. Chest and back mostly. Try not to complain. Weird things. Feet numb all the time. Gave me Gabapentin. Blood test at Delnor Hospital (Illinois). Looked like an electric chair. Bleeding with a smile!!! Smile and wave.
March 26-29, 2019
Houston for first treatment post operation. Blood work and scans check out good! Bad news: they have a problem with wording of clinical trial. Apparently, there is language that contradicts. Part says we have 90 days to start treatment, other says 60. My doctor wrote it so it’s like wow! We spent three days and $3,000 to get here. Emotionally and physically prepared. No-go. Have to go home and wait for paperwork to get fixed. Wow. Only have until April 10 to start now. If not…out of trial!! No stress. I read them riot act. Stress of sweating out clean CT scans for next 13 months is nerve racking.
Seems to me that once I am “cured,” it does not really end there. My feeling is it’s like getting a new identity. You know…witness protection act. You are always looking over your shoulder the rest of life. I can handle that. Live every day best I can. So why must one person or persons endure so much… I hope it is so future generations will not have to. #iamthecure
April 25, 2019
Back to MD Anderson for treatment. Waiting on vampires now. I’m encouraged by the determination of the people I see! You would think it’s a bunch of bald, skinny people, but it’s not. That’s just my reflection! Lol. I’m at 165 and okay now. Just trying to manage pain and the limited air capacity.
May 15, 2019
Back at MD Anderson. Never get used to this or can really accept it. Walk in doors and always try to stay upbeat, but you fight instant depression when you walk in. I am alive so I can fight!!! Many have not had same blessing. Pain kind of moves around my body. Never really close to pain free. Joints constantly ache. Last month extreme hip pain. Look forward to a run one day!! Today is scan day. This is a disease where you are always looking over your shoulder. Like a general in battle. You don’t dare wear the five stars on your shoulder or the enemy will target you. Some days it’s like torture. Today is one of them. Missed vein twice! Pain is temporary.
June 4, 2019
Three weeks goes by like a day now. Back in Houston in quest of cure. Since last time, we sold house. Bought house. Moved one house to Wisconsin. Took trip to Florida to find the new one. Then fly back to close on it. Made it back for wedding rehearsal. Went to wedding. Rested one day then got on plane to Houston. Tired… hmm no. This is only the fourth treatment of 17!! I’ll rest in a year! Waiting in usual human traffic lines for tests and treatment. It’s just like another world here. Seeing sooooo many people treating here that are very sick. You leave and get to the airport. Same amount of people you see walking around all day. Are any of them sick?
It makes you appreciate every second that you have. Just to be a better person, husband, father, sibling and friend. P.S. It also makes me more impatient knowing all that!!! Just sayin’.
July 24, 2019
Heading back from MD Anderson. Was nice to get an extra week off for vacation. Relatively uneventful. IV took only two tries! Dealt with much worse. Five down, 12 to go. Amen. I’m alive! Blood work was good. Liver enzymes big improvement. Three weeks looms large again.
“You give something 100% because your life depends on it.”
Looking back at my notes from 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.” They claim the life expectancy with disease is 6-12 months. Guess no one consulted me that!
August 25, 2019
On plane back to Florida. Long trip. Scans and blood work were good!! Uneventful for the most part. Long lines of people waiting in line to get blood test in various stages of disease and age. Very sad and depressing. I know my story but each one of these people and their families are touched by this disease. Many people have it much worse. I should never complain and make an effort not to, but some days are bad. Still holding weight at 161; I was 188 before it began. Had to get all new clothes. I put on my old stuff and wonder who wore these!! Lol. Emotionally and physically. I’m alive and breathing, so that means I can fight!! Nine months to go, God willing. Cheryl and Pierce here at airport to pick me up. 11:30 PM. What incredible devotion and support from whole family.
September 4, 2019
Three weeks goes by like a day. Back at MD Anderson. Same routine. Fly out at 7:00 AM. Get blood work. Get IV. Get treatment and repeat. Flight back same day at 8 PM. That’s a good thing. Every treatment is one closer to cure!! Feeling tired and fatigued last week or so. Hitting gym. Gained four pounds since working out. 164 now. Guy in waiting room complaining about MD Anderson. Apparently, people all assume doctors should cure them and it’s their fault if they don’t. Wow.
September 24, 2019
3:30 AM. It’s a warm, dark humid Florida morning. Touch ground in Houston 9:30 AM. Treatment nine of 17. Add in four chemotherapy treatments, and that’s 13 plus four surgeries. Winning, baby!
October 15, 2019
Three weeks goes by in blink of an eye. Back on 6:00 AM flight to Houston from Wisconsin this time. Wow. Drove 1,800 miles from Florida just six days ago! Foot down on gas pedal of life. Trying to live a year in a day it seems sometimes. The pace is swift. Cheryl says she can’t keep up! She can…Greeted by my doctor with a warm, gentle hug. She’s warm but all business!! Scans and blood work look good! Prayers working. If you never walked through a cancer ward, you’re lucky, but it does change your perspective on life. While waiting for treatment in individual rooms…doors are open. Patients in various states of disease. One younger woman with head shaved and very thin sits in a fetal type position in an oversized, green padded chair. She looks scared and alone. Sad. Another very young man walks by me in the hall dressed as if he just walked out of his high school gym. Looks fit and healthy. So young. We all share the treatment tell tales. IV in arm and wristband. We are bonded in struggle. The cure for this cancer will not be easy. We do things like this because they are hard! #iamthecure
I’ll win. Just depends how much I have to bleed!
Trigger Warning: Blood in below photo.
November 27, 2019
This time last year, I was preparing for surgery. Now we are four surgeries, four chemotherapy treatments and 12 immunotherapy treatments in. Five to go. This is the homestretch. Must finish strong. Back to five day a week work out. Strength slowly returning. Pain comes and goes. Half body still numb. Pretty smooth day in my world at MD Anderson!!
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.
