Am I a rare breed?
I often ask myself if I am a rare breed of man that confronted with a dilbilitating disease such as MS and its after effects will stay in and fight or leave. I chose to fight. When I meet Kathy for the first time she was outside soaking up the afternoon sun on an early fall day back in 2008. She was then a quadriplegic with MS. Her battery had died and when I had gotten home from work, she asked me if I could help her back to her apartment. I said yes. What struck me the most about her was her personality and the way she smiled. We got to talking on an everyday basis and the more we talked, the more I was interested in her. her disability didn't stop her from enjoying things like going to the movies or shopping. She taught college online using Dragon technology. In her earlier years before her disease took her mobility, she had gotten married and after nine years her husband left saying that he couldn't take it. Months went by and he returned only for a short period before ending it all together.
She raised her daughter that was born in 1984 when she had recieved her diagnosis of having MS. It took six years of having symptoms before being diagnosed. Medication came out in the early nineties, but for her it was to late. The disease was destroying her body at a slow rate.
When we met, she had a supra pubic catheter that she got a couple years earlier. Later as the years went by, she had kidney stones, a prolaspe rectum that had two surgeries to repair. The second surgery she had a sigmoidectomy which left her with a colostomy. in the last couple years after frequent UTI's, pnuemonia and several trips in and out of the hospitals, her left lung was deteriating to the point that she required oxygen constantly. It didn't slow her down one bit. We traveled to Arizona where it was easier for her to breathe, and made it out to California where she always wanted to go. We've traveled to Wisconsin, Ohio and back.
Two years ago in early Dec, She had to be hospitalized for respritory disease which required putting her on a ventilator. We were told that her prognosis did not lok to good and to prepare for the worse. Now the funny thing is Kathy loved peanut M&M's and she just wanted to go home. After 15 days og being on the vent, I told her that I would buy her a big bag of Peanut M&M's only if she got better. Well after 24 hrs, she was taken off the vent and released to go home a couple days later. She came home on Dec 21st and we celebrated her home coming. And yes, there was a big bag of Peanut M&M's waiting for her.
Last September, again she was hospitalized with respritory failure and she underwent a traceotomy and had a feeding tube inserted at the same time. None of this bothered me because I loved her so much. Men, I ask if you could stand by you wife if she was in the same predictament? Could you make love to them with all this going on? I could because of the love we shared together. Diffilcult, yes, but we made it work. I've been told before by other women in my life that they loved me. But when Kathy said it she would always say I love you Tom. Never before in my life has anyone ever said that to me except Kathy.
For us, our life was a normal one. Granted the obstacles and logistics were complicated, isn't life? We dealt with every possible scenario with transportation, doctors visits, infusions, you name it we've dealt with it. I write this as it brings me a little happiness while tearing up at the same time. She may be gone physically, but her memory and the joy she brought to my life will always remain deep in my heart. So in ending for now, to my beloved wife, I love you Kathy.
Replies
Very Beautiful!
You are a rare breed my friend. I went though much the same thing with my wife Pat. She was a lifelong Crohn's Disease sufferer, with all of the complications that entails. In 2011 she underwent her first bowel resection and lost roughly one and a half feet of both small and large bowel. She recovered well from that surgery and we had almost two years of good health and good times.
Then in 2013, during a routine colonoscopy, her gastroenterologist found a large mass at the upper end of her rectal tract. It was the size of a man's fist, large enough that he couldn't complete the colonoscopy because of partial blockage of her colon/rectum. He referred us to a surgeon and Pat had a colostomy done in preparation for her cancer surgery. As a crohn's sufferer Pat knew that a colostomy could be in her future and it terrified her. Once it became a reality we both had to learn how to manage and care for it.
During her chemo and radiation treatments her skin would peel terribly and we would sometimes have to change her ostomy pouch 5 times a day, because it wouldn't adhere to her skin. A few months after the chemo and radiation her skin finally stopped peeling and things seemed to get better, then came the cancer surgery.
Pat had what is known as a pelvic exenteration. Which is basically the removal of all of her pelvic organs with the exception of her bladder. She lost her uterus, both ovaries and fallopian tubes, all but a stub of her colon and several more feet of small bowel. She also lost her rectum, anus, the back wall of her vagina and a large section of tissue from one buttock. All done to make sure that any tissue that had been exposed to the cancer was removed.
Post surgery she seemed to be healing well. She did have chronic pain but eventually healed enough to go through a second round of chemo. At her 6 month checkup the oncologist told us there was no sign of the cancer. But she developed a complication. Possibly because of the intense radiation to her pelvis, one of her ureters developed a hole and began leaking urine into her pelvis. Unfortunately, she had also developed a vaginal fistula and the urine was leaking out her vagina.
Pat underwent a reimplantation surgery to correct the issue but it didn't hold. During her hospitalization for that surgery, she developed a enterocutaneous fistula. That is, a channel from her gut out to her skin. This allowed bowel contents and urine to leak out from the hole that had opened up just above her pubic bone. At it's largest, the hole was roughly the size of a ping pong ball.
I cared for Pat at home, with only 2 home health visits per week, for roughly 6 months. Because of her loss of bowel and the amount of fluid lost through the fistula Pat was continually dehydrated and I had to take her to the hospital several times during those months. She couldn't eat solid food and was fed via TPN through a port implanted in her chest.
At one point Pat was in an acute care facility, where she deteriorated so much that she weighed barely 93 pounds and so undernourished that she could no longer walk. I had her moved back to a major hospital where she recovered somewhat but was permanently weakened due to loss of muscle mass.
The last time that Pat was in our home was Oct. 8 of 2014. That night I had to drive her 75 miles to Baylor Hospital in Dallas and admit her through the emergency room. After examining her they moved her straight to ICU and kept her there for 2 days until a bed opened up on the colorectal floor. She never saw our home again. She spent the next 21 months in and out of hospitals, skilled nursing facilities and acute care facilities in the Dallas area, until her death on July 19 of 2016.
During that time she underwent multiple procedures to try and repair the various fistulas in her bowel and abdomen. She eventually lost use of her bladder and was given a urostomy to go along with her colostomy. A large muscle flap was taken out of her leg and used to patch one fistula on her abdomen. Stem cells and stints were used to try and close a bowel fistula.
I spent every available moment at her bedside. Even when she was too sick to do anything but sleep, I sat next to her and held her hand. When she was in so much pain that all she could do was shake and cry. When she was unconscious on full life support I was there.
So yes Powito, I know what you went through my friend. And I say again, you are definitely a rare breed to have been so loving and loyal to Kathy. Many are the men who would have cut and run because of the responsibility and hardship of that kind of care giving. I'm proud to have met you here my friend and know that you will always have my respect for what you did for Kathy.
I wish there were more people like you, either men or women. I have met some and they are amazing, every one. My friend takes care of her husband who was diagnosed with MS the first year they were married. Their love is as strong as ever. My daughter has been plagued with health issues for many years and she won't quit and neither will her husband. A friend of mine has Juvenile Diabetes since he was 2 years old and his sister was diagnosed with it as a teen. My long term friend and they're parents have devoted they're item life to find a cure. Love covers many things and you will meet more here on DS. People who care for their spouses or children are able to find the gift of loving unconditionally and they put others ahead of themselves. May God bless each and every one of you.