It was fall, 2002 in Wisconsin. My youngest brother, Steve, was 49. He was feeling sluggish and found lumps on his neck, arms and legs. He went in for a check up only to find he had been stricken with cancer of his lymph nodes. Things didn’t look good, he was in stage 3 already.
After talking extensively with the doctor, he decided he would be a test object for a new cancer treatment that was just coming out into the market. He went 3 times a week for 5 weeks. He got worn down very easily. He didn’t go fishing, hunting, or ride his motorcycle like he always loved to do. He lived on Ensure because any kind of food only came back up. He lost weight and all of his hair. The fear of him dying was in the back of all of our minds, and his.
In the spring of 2003 I decided he needed to go to California with me to see our sister Sara and her boyfriend Marshall. We would spend 10 days in the sun and enjoy the company of each other. Marshall would take him deep sea fishing for one last time. On our second day there, the guys did go fishing. It wore Steve out, but he enjoyed it so much he didn’t care.
One of our days in we had gone to a beach side park for a day in the sun. As Sara and I sat in our lawn chairs, we watched the guys walking on the beach. I said to Sara, “Oh my God!!! Steve looks just like grandpa before he died.” [grandpa was 89 when he passed away]
Our trip was a successful miracle. Steve went into remission and life went on. He stayed in Wisconsin to help me with our ailing mother for 2 years. He had both knees replace and a hip. After mom passed away, there were people and places he wanted to see before HIS life was completely over, so he traveled to Florida, South Carolina, California, and back to Florida again.
It was November 2008 when I got a phone call from a doctor in Florida. Steve was hospitalized with a perforated ulcer and was on life support. He was coherent enough to give the doctor my phone number. I was informed his chance of survival was not good. They had done all they could, now it was just waiting time. I was asked if they should just pull the plug. I said, “no, Steve has a strong will to live. He is a fighter, give him a chance, give him time.” I talked to the doctor and nurses daily for 2 weeks, then one day they asked me if I wanted to talk to Steve. He had improved over night. They were all so surprised.
In February 2009 he returned to Wisconsin. He had a “second bellybutton” from his surgery that drained on a constant basis and he was in a lot of pain all the time, but he coped with it. I talked him into staying with us “until he got better”. Of course my real reason was to monitor his pain and health. He saw a few doctors who subscribed medication for his pain, for there was not much else they could do. There were times the incision would close up, only to swell and burst again draining more puss and blood. The doctors all agreed his stomach definitely was infected, but none of them wanted to do any more surgery because his health wasn’t very good.
In August 2009 Steve and I decided to go to California to see Sara, Marshall and our older brother, Mike. We would celebrate Steve’s 56th birthday and he would pick up some things he’d left at Mike’s the year before. The second day we were there, Steve felt numbness in his left arm. We had been playing cards, so he thought he just leaned on his elbow too long. He and Mike left for Mike’s place; which was an hour away. The next morning Sara and I got a phone call. Steve was hospitalize with a stroke. He spent the rest of our vacation in the hospital. His will to get better was still with him, he wouldn’t let this stroke get him down. The doctors weren’t too happy about him getting on a plane to come home, but it was his choice and they had to abide by his wishes. It was a long, fearful trip home.
Once back home, he found another lump on his neck. We took him to his cancer doctor; sure enough; his cancer was back. He would have to do chemo 5 hours every 3 weeks. Steve coped with everyday things, making the best of what he was able to do. We got him into a rehabilitation center where he could do daily therapy and nurses would be able to monitor his medication. After one month he was able to come back to our house. He had strength back and was able to walk up stairs with a cane. He was on the mend one more time.
One day I had taken him in for a check up. The nurse came out and said, “The build up of puss just blew a hole in his stomach.” He was hospitalized for 3 weeks again. He was unable to eat or drink anything because it would come out the hole he now had in his stomach. His chemo treatments were stopped. He was not ready to give up on life just yet, he would do whatever it took to keep going. The doctor put him on a feeding bag and he was sent home.
Steve didn’t smile and joke every day; he had days of depression, anger, and tears. There were times he’d question himself as to why he fought so hard to continue on. Then he’d say,”because I love life, even though no one really wants to live like this.”
We had been contacted by Hospice to help Steve with his medication and feeding bag while at our home. They came in every other day. They were such a wonderful help for us. He hated the feeding bags, but this seemed to be the only way for him to keep nourishment inside him for now. Steve loved to cook and he was always very good at it. He loved hot, spicy foods, any kind of fish, chicken, lamb, and all vegetables. I almost hated cooking because he would beg me to let him have some and I knew I couldn’t.
One day in November, we had errands that had to be done. Steve was feeling good and wanted to go with me. After an hour we both remembered the Hospice nurse was expected about 11:00 for a regular check up on Steve. I knew it would only take me another half hour or so, so I took him home and went back out to finish. When I returned, the Hospice nurse was still there and Steve was sitting in the chair, white as a ghost. He was very weak and she said Steve wouldn’t let her call an ambulance. I picked up the phone and called them.
The next 2 weeks were ruff. Steve kept getting worse as the days went on. I called family members with the “bad news”. His daughter; Nikki and her boyfriend came and stayed the weekend; our Aunt Sandy came from Madison, and Sara came from California also came. Marshall and Mike couldn’t make it due to their jobs. My girls and their families, who have been a great strength from day one, were by his bedside daily. Steve didn’t want to die in the hospital. He asked me if he could please die at our house. I couldn’t say no, so we took him home. We had a hospital bed brought in to make him more comfortable. Sara and I slept on couches so we could hear him when he needed us during the night.
People came and went home for the next 2 weeks to say their last goodbyes. Steve, Sara and I had long serious talks about death. None of us still weren’t ready for that final day, but it seemed as though it was coming whether we wanted it to or not. Hospice nurses were coming in 2-3 times a day now, talking to all of us about having Steve go to the Hospice House of Hope. Steve was persistent about dieing at our house and I wanted his last days to be what he wanted.
December 23, 2009 Steve called me into his room and asked me to call the Hospice House. He wanted to go so we could have a happy Christmas. I said, “NO!” He asked for Sara, thinking she would give in, but she said, “NO.” The 3 of us talked for hours and finally Sara and I broke down and I called. They were here to pick him up within 2 hours. We followed him to the house, toured and met the wonderful staff.
Sara went home to be with Marshall for Christmas, but called daily. Christmas day Steve asked if he could please have one last Christmas dinner. There was no more feeding bag, so why not. I agreed. My husband, girls, and grandchildren were at the Hospice House daily for hours at a time. Every time the phone rang at home, I panicked, thinking ‘this was the call’. Days went on, then weeks, then a month. Steve had a lot of bad days, but he was having a few o.k. days now and then. The staff at Hospice House actually rigged up a device to catch the fluids, puss, food that kept coming out of the hole in his stomach. The staff at the Hospice House of Hope spoiled him daily. They loved his spirit, humor, and persistence to do things on his own.
After 3 months, Steve was tired of being in a bed all the time. My daughter, Beth and I rearranged his room to make his recliner more accessible to him. He’d still be sitting, but not in bed. We got him into his wheelchair and strolled him around the grounds. His will was getting him strong once again. The staff was amazed at the progress he was making. They removed the ‘catch all device’ and his stomach only leaked a bit now and then. Even though the stroke affected his left side severely, it doesn’t stop him. The only physical therapy the staff can offer is to help him into his chair or back into bed. He’d have to leave the Hospice House to receive therapy from any other facility and that wasn’t an option. He had a surprise visitor one day, it was his cancer doctor. He had heard Steve was still with us and just wanted to see how he was doing. After a small check up, he said, “I can’t find any lumps, you are in remission again.”
June, 2010 we moved Steve out of Hospice and into his OWN apartment. For the most part, he is wheelchair bound, but we take him shopping and bring him to family outings. A van picks him up for therapy 2 times a week and for doctor appointments. Next week he is going in to see his cancer doctor to be sure he is still in remission. His right knee has recently been diagnosed with severe infection which they feel has drained from his stomach. He had it drained 2 weeks ago. He has also been told it needs to be replaced again. We are looking for a doctor who will do the replacement so he is able to get around better. He is looking into the possibility of getting an electric wheelchair. He will be spending the winter in Wisconsin and doesn’t want to be stuck inside for 3-4 months. At least with an electric wheelchair, he can get through the snow on the sidewalks.
He is far from being out of the woods, but feels each day is a GREAT day when he is able to open his eyes in the morning.
He has a strong will to live. He is a fighter who is not willing to give up. We are a strong family who will always stand by his side and add to his strength.