My journey started in June 2004 with a diagnosis of low grade bladder cancer – likely not “curable” but “highly treatable”. But after dozens of biopsies and failed drug therapies, it was determined that my bladder had to be removed. Three days before Christmas 2017, I had a radical cystectomy and creation of a neobladder constructed from a piece of my small intestine. An amazing piece of surgery, for sure!!
Unfortunately, on day 8 post-op, my wounds reopened. I had the rarest and most dangerous post-op complication and I was rushed back for surgery. Sometimes recovery just doesn’t go smoothly and “stuff” happens. My doctor had done hundreds of surgeries like mine and taught the procedure to hundreds of students over decades. I was nervous about the future but confident that I would recover.
My urologist, assisted by the chief of bariatric surgery, repaired what they could but I was left with an open wound that would, ultimately, never close on its own and a lot of uncertainty about what the future would hold for me. However, after 9 months we were told that I should go on with my life and learn to live with the “new normal”. Diane learned how to tend to the open wound and we started to try to get back to normal. Travel had always been one of our favorite ways to spend time together.
The low point happened while we were on a cruise. I started feeling ill on the ship and the doctor determined that I was going into sepsis. I was admitted to a Norwegian hospital where I was treated for 11 days by a care team that communicated daily with my doctor in New York. Care was good but Diane was on her own in a strange country just trying to get me to a state where we could return home.
Once home I went into sepsis and was hospitalized – again. The Norwegian doctor told us that the open wound must be resolved. Six doctors in New York told us that no surgery should be attempted – but they never dealt with Diane before. Diane asked again at every visit. The bariatric surgeon finally said that if my condition threatened my life, there was a new doctor that had joined the hospital from the Cleveland Clinic whose specialty was abdominal reconstruction. She felt my ventral hernia was “cosmetic” so I wasn’t a candidate for reconstruction. Diane wasn’t having it. She dug around until she found out who this “gut guru” was and got me an appointment quickly. The abdominal surgeon was one of the most esteemed in the field and he disagreed about it being “cosmetic” so we had a tough choice. My urologist was supportive of the surgery and paved the way for me to have further testing to determine if my situation could be improved. A few weeks later, in an eight hour surgery, my abdominal wall was rebuilt and we were very optimistic about the future. At first I did very well.
Turns out, there was MRSA hidden somewhere in that new abdomen and it started to spread – ultimately landing in my very arthritic knee that was overdue for replacement. Because of all my other problems, we were waiting for me to regain strength before getting more surgery. Ultimately, it took 3 surgeries (2 were total knee replacements) and 14 weeks of twice daily IV antibiotics to clear the infections. My choice was to either go to a nursing rehab facility or be treated at home by Diane as no out-patient infusion center could accommodate the daily schedule. I also required extensive physical therapy to try to keep whatever muscle condition I still had. Diane had no medical training but she learned quickly and she administered my antibiotics, kept everything around me as sterile as possible, drove me everywhere and listened on the rare occasion that I was ready to talk about it.
After all the surgeries and infections I’d become a very depressed couch potato. I didn’t want to eat; I lost 40 pounds; one of the doctors threatened to install a feeding tube; I couldn’t drive; I couldn’t lift anything and I couldn’t sleep. I didn’t even enjoy time with my children and grandchildren. I was laid up for 2 consecutive winters. There was a house to care for, lots of snow and ice, garbage to be put out, a dog that needed care and feeding and we got little help. The kids were kind, but they couldn’t be with us often. I’m so grateful for all the visiting nurses who came to care for me for 14 months – sometimes daily, but they couldn’t live with us either. It was all on Diane’s shoulders.
Ultimately, Diane had to have that difficult talk when she told the children that my prognosis wasn’t great. We were all prepared for the worst. If it were not for Diane’s diligence and persistence in asking questions and listening to the doctor’s advice, I really would not have come through this. She insisted I eat healthy meals even when I didn’t want to eat at all. Everybody worries about the patient but the caregivers are often left in the shadows. After the surgeries and treatments, caregivers are the most important element of any successful recovery and, I for one, am eternally grateful for the constant support my wife provided. I slept when I wanted, I ate or not when I wanted and she was always there to accommodate my every need. She’s tough, but she cried when my surgeon said that I would be dead if it wasn’t for her diligence.
After eight surgeries, numerous infections and hospitalizations (11 in 24 months) I’m happy to report that I am now in good health both physically and mentally but that would not have been possible without the support of my wife and the staff of Ann’s Place.
Diane has been an Ann’s Place volunteer for years and often suggested that I should look into some of the activities they offer. There are classes in art, sleep, relaxation, horticulture, yoga, Ti Chi and Reiki to name a few. There are also private and group sessions for cancer survivors, patients, family members and friends. No patient, family member or friend is ever charged for any of the services.
At first I reluctantly took an art class at Ann’s Place but it got me in the door. It was my first venture into the world of cancer survivors and, perhaps, the first time I really acknowledged that I had cancer. But the group that really changed my life and the dark course I on was “Mind Body Medicine” led by Kate and Jennifer at Ann’s Place. MBM runs for eight weeks with 10 attendees and two leaders. Participants must commit to attending every session. Some days I came in depressed and after two hours the group NEVER failed to lift my spirits. After eight weeks I can honestly say I am in a much brighter place, feel psychologically stronger, happier and better equipped to move forward and have the best life I can for myself and my loving family. Diane and I have started traveling again!!
Unfortunately, everyone knows someone who has been touched by cancer. Diane had lots of experience losing her only sister at age 40 to breast cancer. It was about same time that Ann Olsen (for whom Ann’s Place is named) lost her battle with breast cancer. Diane’s sister had no place to turn for help for herself or her 4 small children. Diane’s dedication to Ann’s Place is, in part, a homage to her sister, her mom and her niece who have all had breast cancer.
Diane and I will be models in this year’s fundraising fashion show. My ability to participate in this fundraiser is a tribute to Ann’s Place, my amazing wife, family, the doctors and dozens of nurses who took such outstanding care of me for 15 years. I would not be here without your skill, your love and your support.
We would love it if you are able to attend the show. It’s lots of fun and we can certainly endure a few laughs at our expense for Ann’s Place.
I am also asking you to support Ann’s Place by contributing to my fundraising page. Hundreds of people every year will benefit. Cancer knows no boundaries, no age groups, no ethnicity and no borders. I am asking for your help to help others like Diane and me. Thank you.