It takes a community to conquer sarcoma
Getting a call while we were on the USS Iowa saying that I had soft tissue sarcoma and would be referred to the University of Iowa Hospital and Clinics, in our hometown, for further treatment was not the New Year's Eve I had expected.
I am a 57-year-old male and have had a clear health history and take one pill a day. From then on, I was looking at a pretty serious situation with no idea what to do about it. I had never heard of sarcoma. “What is it and how do we proceed?” I wondered.
In January 2016, my fiancée Sandy and I met with Dr. Ben Miller and began a day-long odyssey. We arrived at 9 a.m. for our first appointment, so when we left at 4:30 p.m. we were pretty spent. I had a tumor close to my right knee. We had some imaging done and met with oncologist Dr. Mo Milhem and radiation oncologist Dr. Bryan Allen at the Holden Comprehensive Cancer Center.
The end of our day resulted in us understanding our options and feeling confident in the path that our caregivers laid out toward a successful outcome. We signed up for a clinical trial that would start in three days and radiation would start in three weeks.
Outside of the clinical trial we had a pretty straightforward course of radiation treatment that went on at the same time I was participating in the trial. The clinical trial consisted of receiving injections once a week for 13 weeks in the hopes that the tumor would be lessened or eliminated. There was also hope that my body would develop a resistance to this particular type of sarcoma that would be beneficial in preventing its return. The results of the trial will not be known for a few years.
Plans were made and a schedule was laid out surgery in three months.
Figuring out how to run my small business was an issue. I found out that my customers were extremely understanding and supportive when I let them know why I was slow to respond. I asked them to give me some time and they were all okay with that. We also discovered that whoever you talk to about your situation has a story about how cancer has affected them or their family. We truly found support and understanding from everyone we spoke to.
However, in reality there was only one focus for us and that was to make each day a good one and do what we were supposed to do to get the best outcome. Sometimes that was easier and sometimes it was a challenge. Sandy provided great support and went to every doctor visit with me as a second set of ears and my secondary caregiver. Calling that kind of help priceless would be an understatement.
Radiation was tough as my energy slowed and I could not see it happening. There were a few days of getting to know my couch for 10 hours a day. During this time period I became anemic and pre-diabetic. Thankfully, I got an infusion for the anemia and we monitored the pre-diabetes.
Surgery was a new experience for me and one that I did not look forward to. Dr. Miller wisely counseled me that once this was in the rearview mirror things would look very different. He was right. After four days in the hospital, I was released and we were going home-sweet-home. A few weeks after surgery, I was given approval to remove the immobilizer from my leg and start physical therapy.
Progress has been slower than I would like, but by staying on task and doing my exercises I am slowly, but surely regaining the flexibility I had in my knee and becoming more confident about using stairs and hopefully ladders so I can get back to work.
All of the people we have interacted with at the hospital have been great. From the receptionists who get to know you by name and as a person to the doctors and their staff who are committed to getting you back to where you want to be. Let's not forget the nurses who were fantastic! They all made a huge difference in the quality of our days getting through this.
Emotionally we tried to focus on what we could impact. We stayed off the internet and listened and spoke with our providers about the best outcomes and ways to cope with any side effects along the way. The body definitely had a rough time, but the mind got played with a little also.
Right now I feel great. I need to complete physical therapy, but my first follow-up CT scan says all is well. So the one-day-at-a-time plan continues with a little look toward getting some bigger things accomplished, like getting married this summer and then maybe spending time doing a little biking and hanging out with my grandkids.