Meet Inspiring Patient: Troy Karnes
Location: Lakewood, Colorado
Overcoming a limb challenge
Please tell us about the limb challenge that you faced.
Troy: I had Chondrosarcoma in my right shoulder blade and some in the joint.
Limb Preservation Foundation (LPF): How are you doing now? What progress are you most proud of?
Things have gone pretty well since my diagnosis (finds wood to knock on). All of my surveillance scans have come back clean, so I do not have cancer right now. That’s the most important thing. I have also regained significant movement back in my shoulder and arm. I’m going great.
What am I most proud of? That’s a little different. I do not do much to get clean scans except sit in the MRI and CT machine a few times per year. I am proud of the progress I have made with my physical therapy routine. The procedure I received does not get done often, making it difficult to have solid expectations for how much range of motion I could get back. At this point, I can lift my right arm straight in front of me up to about the height of the top of my head. In January, I could not lift it to shake anyone’s hand, so I have come a long way in the last few months. I can also swim the crawl, which I did not think I would be able to do again.
What would you want other people in the same position to know?
Early on in this process, I worried about the things I would not do with my boys (they are 6 & 3 right now). There are a handful of stereotypical things that dads do with their sons, like play catch and whatnot. I’m right-handed, and I do not think I’ll get my hand over my head again (but who knows, maybe?). That bummed me out, but my wife helped me to reframe those thoughts a little bit. I will be able to spend meaningful time with my boys. It may look slightly different now than I thought it would, but it will still happen.
Long answer short, I accepted that if I could be flexible about my expectations, I would be able to find a solution to the problems that I’m going to have now that I have limited mobility.
What kind of support did you appreciate most?
How long is this blog? My support system really showed up for me when we got my diagnosis. My wife had a whole heap of things to take on since I was out of it for a while, and she made sure that our house still functioned. Our parents helped us get our kids to all of their activities and helped us find time to take care of our house. Our friends organized a meal train to make eating easier for us. They also kindly helped us financially, which eased some fears. My job continued to keep me on full-time when I had to miss a few weeks for my two surgeries.
Dr. Lerman always took the time to sit down when he came into a room to talk to me. It sounds small, but it signaled to me that he put his full attention on me and whatever I needed at that moment. That meant so much to me, and it’s a lesson that I take with me in my own life now.
Kristen Joyce, my physical therapist, has done an amazing job with my recovery. I remember asking Dr. Lerman if any PT would be comfortable with my case. He said no. Therapists do not have a protocol for my exact situation. Kristen put together a damn good one. I have seen her twice weekly for almost every week since the start of the year. I can do so many things now that I thought would be out of reach. The rest of the staff in her office has also been great to work with.
The LPF played an important part in that as well. I could not drive for a while after my surgeries, and they coordinated, and paid, for a car service to take me to and from Kristen’s office for a few months. My wife and I have a hectic schedule with full-time jobs and the two young kids, and LPF provided a reliable way to get to my PT sessions. I did not have to worry about it. It ensured that I could get to my appointments, and that helped me to have a good outcome.
I could go on and on here because I am grateful to everyone who helped me through this process.
What has been the most challenging part of your journey?
I’m a big people pleaser, so learning to say “no” to things has been difficult. I can do most of the things I was doing before, but I cannot do everything. I need help picking things up fairly often. Getting jostled around doesn’t feel great, so I have to pass on my kids’ trampoline sessions. That kind of stuff gets to me from time to time.
What was something you didn’t expect on your journey or in recovery?
I often felt tired throughout my recovery process. My PT continually told me that happens when people have to heal two major joints simultaneously, but I did not expect it from the outset. I’m still working on that.
What do you wish people knew about Limb Loss?
I guess that it comes in so many forms. I often feel grateful that I did not lose a limb because I have all my fingers and toes, but I guess I am missing a pretty important part of a limb. A stranger would not be able to tell (again, thanks for doing such a great job, Dr. Lerman), so it’s a conversation that I end up having fairly frequently when I ask people for help reaching something or carrying something around. Shout out to people, though. I get a lot of help from strangers.
What are you most proud of throughout your journey?
I am proud of the progress I have made with my physical therapy routine. The procedure I received does not get done very often, making it difficult to have solid expectations for how much range of motion I could get back. At this point, I can lift my right arm straight in front of me up to about the height of the top of my head. In January, I could not lift it to shake anyone’s hand, so I have come a long way in the last few months. I can also swim the crawl, which I did not think I would be able to do again. It makes the little things a little bit easier.
What is next for you? What are your hopes for the future? What are some goals you have related to your limb challenge?
I have so much in front of me. My wife and I will celebrate our 10th wedding anniversary this year. She has supported me through this process, so I’m excited about honoring our marriage. Our oldest son started 1st grade, so I look forward to dropping him off, picking him up, and going on his field trips. Our younger son just turned 4, and he teaches me about dinosaurs daily, so I have some studying to do there. I also began a career as a real estate agent this year. I have a pretty full plate. I do have a few goals related to my limb challenge. I want to regain 120 degrees of movement up in front of me (there’s a technical name for that, but I do not know it). Right now I have 115 degrees. Also, I used to have a rowing machine that I used every morning. We did not think I would have enough strength to use that again, but I feel good about my recovery. I hope to get a new one later in the year so that I can make that part of my morning routine again.
How did the Limb Preservation Foundation support you?
LPF helped me sort out a ride to and from physical therapy when I could not drive myself. We have two young children, so transportation became very complicated for my family after my surgeries. LPF ensured that I could get a good start in my recovery because I did not miss a session of PT.
Why would you recommend that other people facing a limb challenge reach out to the Limb Preservation Foundation?
When I spoke to Eunice Forster on the phone about helping me find a ride to physical therapy, I told her that I could pay for it, but I would feel better if I had a regular ride that I did not have to worry about. She told me that LPF’s goal was, “to do everything that we can to make sure that your diagnosis has as little an impact on your life as possible.” That blew me away and set me at ease. I’m so grateful for that support.