Our Story
In the beginning…
In May of 2015, my husband Joe hurt his knee. Initially, we thought he strained it and it would feel better after rest and ice. It didn’t. Perhaps physical therapy would help. It didn’t. We thought the orthopedic surgeon would be able to diagnose what was causing the pain. Over the next year, Joe endured numerous labs, x-rays, CAT scans, MRIs, and needles to drain fluid. He didn’t have a Baker’s cyst. He didn’t have a tear in his meniscus. And still he had pain. His mobility was being more and more impacted by his knee. Ultimately in July of 2016, Joe had arthroscopic knee surgery on the front of his left knee. The surgeon cleaned out many pieces of calcified cartilage in Joe’s knee. Joe initially felt better. But soon after the surgery it was clear the surgery did not fix the problem or Joe’s pain and he began using crutches regularly. Finally, the orthopedic surgeon told us that he couldn’t do anything further for us and we should go back to Joe’s primary care physician (PCP). We did go back to his PCP who referred us to a rheumatologist.
At this point we were about 18 months into this ordeal. The rheumatologist ordered new x -rays. This doctor was the first to see the tumor that was growing behind Joe’s knee. He recommended going back to the orthopedic surgeon to remove the tumor. We went back to the surgeon who said he wouldn’t do the surgery and referred us to another orthopedic surgeon. We met this new surgeon. He also wouldn’t do the surgery, at least not until he knew exactly what the diagnosis was. Ultimately, we were referred to the head of Orthopedics for a large local teaching hospital. It was here, after another round of tests including a biopsy, and two years of seeking answers at almost all the health care systems in San Diego, we got the serious diagnosis of synovial chondromatosis turned synovial chondrosarcoma. Synovial chondrosarcoma, a rare type of bone cancer, was in the cartilage of his left knee. The treatment – an above the knee amputation, which Joe had in May 2017.
At the time of the diagnosis and surgery we were close to the 2-year mark of the original injury. Joe could not use his left leg as the tumor prevented him from straightening it. I could visibly see how the tumor was slowly blocking the blood flow to his calf and foot. Joe had tingling in his foot as the tumor began crowding out the nerves behind his knee. He used crutches 100% of the time. I held my breath every time he navigated the stairs of our 2-story house.
Communicating the news to family and friends needed to happen. We finally had an answer to what was ailing Joe, and after years of concerned questions from loved ones, it was time to share the next chapter of our story with them. In future posts I’ll share more on the topic of communication and the value of having a plan for sharing difficult news and updates with family and friends.
There were just a few crazy busy weeks between receiving the diagnosis and the surgery. We were asked to get a second opinion before the surgery, and we did. There was also so much pre-surgery prep to do, such as more scans, labs, an MRI, as well as making sure we had in-home support set up for after the surgery. Joe had an above the knee amputation in early May of 2017. He was finally free of the pain that was with him for years. He came home 2 days after the surgery and began the healing journey.
The day Joe came home was our 24th wedding anniversary. I felt so thankful that Joe survived the surgery. It was a wonderful anniversary gift. Anyone who has had surgery or walked the pre-surgery steps with a loved one knows how they make sure you understand all the awful outcomes that may occur during surgery, including death. Not only did Joe survive the surgery, he was in decent spirits too. This was mostly because he didn’t have much pain thanks to the cryotherapy used on the front and back of his leg before surgery. In fact, when Joe came home that day, he came into the house, looked around and headed upstairs to do his physical therapy and then lay down. He crutched right up the stairs with smooth stability and confidence. After all, he perfected navigating the stairs while he was in extreme pain. We had planned that he may need to sleep downstairs post-surgery and friends gave a us a bed to use for this purpose. Joe has never slept overnight on this bed. It remains a napping only bed. 😊
That first week was a blur. In re-reading my journals from this time, there are no entries from that first week home. I’m sure I was too busy with caregiving activities and logistics and being just too tired to write. My sister-in-law Lesley, who with just a few days notice, dropped everything to come from across the county and help us. My brothers, Paul and Mike, showed up without notice the morning Joe was coming home. While we waited to hear if and when Joe would be coming home that day, Mike, who has a talent for fixing almost anything, fixed a few broken items in our home that we hadn’t gotten around to fixing. Paul visited and spent time with Catie, our younger daughter, who was in high school at the time. Our older daughter, Shannon, was finishing her first year of college and came home the week following the surgery, as soon as she finished her finals.
The support from the women and families of my Book Club and Bible Study was tremendous. Family, friends, and neighbors all stepped up big time. The meal train alone lasted a month! Other women in my life were incredibly supportive and also helped carry me through this chaotic and stressful time. Their thoughtful words of encouragement and gifts sent letting us know we were being thought of and prayed for were so helpful. They helped lift our spirits and reminded us we were not alone on this journey.
Speaking of lifting spirits, and an early sign of Joe’s resiliency, is that just one day after hearing the results of the biopsy and the treatment (amputation), Joe checked out the resources of the Challenge Athletes Foundation (CAF). He knew about their work with the Wounded Warrier Project and wanted to know more. Already, he was exploring what life might be like as an amputee and what support is out there and available to help navigate this new and different world he would be entering. CAF’s work is encouraging in so many ways, more on this in future posts. However, on that day, Joe said to me, “There is no shame in prosthetics.” No, Joe, there’s not.
Before Joe’s amputation, we didn’t know what to expect of Joe’s healing. We made arrangements for in-home care after the surgery, but the focus was on having the surgery as soon as possible. There was so much to process in a short time. Once Joe came home, nurses came to our home to check on his healing progress and to change his bandages. It was great having that support. However, it was impossible to have prepped us for every possible thing that might happen – like when his entire bandage fell off once when he was standing. I didn’t see it happen but heard Joe say, “Ah, Christine?” A neighbor who is a nurse came over to help put it back on. (Thank you, Shelly!)
Occupational therapists came to educate us on fall safety especially in the bathroom. She gave us recommendations, such as getting rid of any mats that are loose and don’t grip the floor, to install grab bars in the shower, and to never grab the towel rack to steady yourself – it won’t support you. (Thank you, Scott!) A physical therapist (PT) shared strength building exercises while another friend with vast PT experience showed Joe options for getting up from the floor and other ways to move without risk of falling. (Thank you, Lyn!)
Over the weeks Joe continued to heal. We needed to wait until his leg was healed to a certain point before we could meet with a prosthetist. Eventually we were introduced to and learned so much about above the knee prosthetics. We are so thankful for Gavin Fortune and Alex Hetherington?, Joe’s prosthetists at Hanger Clinic. Gavin’s easy-going manner belies his expansive knowledge and expertise in prosthetics and just as important, working with health insurance companies. He led us through the process with humor and professionalism and remains a friend. When Gavin headed to Texas to manage clinics there, Alex stepped right in and continues to provide exceptional care for and service to Joe. Alex has gone above and beyond to help, such as when he was a guide for Joe in his recent one-mile open water swim. More on that later.
Joe’s continual healing went hand in hand with meeting with Gavin and changing sleeves over the remainder of Joe’s leg, called the stump, to force the fluid out. As the fluid in the stump diminished, Gavin was able to fabricate the socket, the top of the prosthetic leg that attaches Joe’s leg to the prosthetic leg. At first Joe got a mechanical leg. He did well with it. Although I had to keep remembering some of Gavin’s first words to us, “With an amputee, it’s not if you’ll fall, but when you fall.” Of course Joe fell. And since he knew I worried about him, he didn’t always tell me when he fell. I will share that when Joe did tell me about some of his falls, sometimes included in the story was a stranger who helped him up. I am thankful for all those who help him get back on his feet. Navigating a world designed for able body citizens is challenging!
In time, Joe was trying out different bionic prosthetic legs – meaning they have a computer microprocessor in them. These legs collect feedback on Joe’s walking patterns and are smart! What I mean is that they “read” how a person is walking and use that information to determine one’s usual stride. They can adapt if they detect a change to the usual stride, for example when one trips. They also can be programmed. Joe tried one leg that had a microprocessor in both the knee and ankle. He didn’t like that one. He felt his knee and ankle were making decisions without him.😊 Ultimately, he decided on the Össur Rheo microprocessor knee. It’s worked incredibly well for him.
I’d also like to thank all our veterans. The field of prosthetics has learned much from the injuries sustained by those in the line of duty. Many have benefited from the prosthetic lessons learned while treating veterans. Thank you for your service and your sacrifices.
We were progressing well with Joe’s prosthetic leg when a spot showed up on a scan in his lung. Since bone cancer spreads to the lungs, Joe was having routines scans to detect things early in case it spread. In February 2018, a lung biopsy confirmed that cancer had spread to Joe’s lungs. It was a hard few days – the day of the biopsy and the day we got the results. The prognosis was grim. That first conversation with his oncologist, when we got the news the cancer had spread, Joe asked his oncologist the best way for him to beat this. The response: those patients who have the best results are the ones who are proactive in their approach rather than passively waiting to be told what to do. Well, proactively navigating our healthcare system and the insurance system is HARD! We got opinions from leaders in cancer care and spoke to so many people. In the end, Joe went on two different drugs – a targeted chemotherapy called Votrient and immunotherapy (KEYTRUDA). Both are powerful drugs. Some can’t handle the side effects of either medicine. It’s a miracle that Joe did.
Throughout the journey, Joe’s oncologist often said, “These are uncharted waters,” to many of our questions. I hated hearing those words. I wanted the comfort that came with knowing - knowing if the course of treatment would work. As in life, navigating cancer treatment comes with no guarantees.
It was during this time that Joe put his oncologist’s advice into practice. When told that he should be doing cardiovascular exercise to help the immunotherapy spread throughout his body, he began swimming. He also began strength training by lifting weights at the YMCA where he swims. He sticks to a daily routine of exercise which not only strengthens his body and clears his mind, but also helps to reduce his stress levels, which was another bit of medical advice he was given. When he was told that cancer loves sugar, he cut most all of it from his diet. Not that he was overly consuming sugar before, but now sweets were ignored.
Because of Joe’s disability, things take more effort and time than for those of us who are able bodied. Joe goes to bed on the early side every night due to all the exercise he does and the energy he expends. By changing in his diet, exercising daily, getting plenty of sleep, and managing his stress - Joe was tending to his life. Joe’s last cancer treatment was in fall of 2022. He continues to get routine screenings to ensure he remains cancer free.