Monday, June 17, 2019

All We Have Is Now

Two years ago today, I was diagnosed with synovial sarcoma. In simpler terms, I was diagnosed with cancer. I remember the conversation with my podiatrist like it was yesterday. Like any trauma, some details are blurry and other details are vivid and unforgettable. I remember the doctor getting on the phone after I called his office to find out if I could swim with stitches. It was noteworthy because he was difficult to get a hold of generally. I remember him telling me that he had bad news and that the pathology report from tumor removed from my foot came back as a malignant tumor of a rare cancer. The type of cancer (he did tell me the name) was one of those fuzzy details I couldn't remember until he told me the name of the cancer several days after the call. I remember that it was a Friday night and we were excited to be in Lake Havasu visiting my folks and the kids were swimming in the pool when I made the call to my podiatrist. It felt like time stood still when I was on the phone with him and as if I was in an episode of the Twilight Zone. My world was spinning in a new direction and I knew that my life would never be the same. As he talked on and on, some bits of information past the initial malignant tumor dialogue managed to infiltrate but otherwise, I just wept in a semi dazed state. I wept for the loss of the reality I had known, I wept about my uncertain future, and I wept because I knew the path ahead of me would be the most challenging journey I've ever faced. I'm so glad I cried most of that weekend. I was right about what I'd be facing and I just needed to vent. 
That next Monday, I was a little more clear-headed and I brought support to the doctor's appointment with my podiatrist. The main question I had for him was...."why didn't you ever do a biopsy doctor?" His response was quick and with a bit of a chuckle, "Because nothing bad ever happens in the foot." Well, apparently he was wrong and cancer can happen anywhere, and I was sitting across from him schooling him in the bad things that can happen when you assume a massive tumor is nothing. I also knew that I'd likely have an amputation before my loved ones because that week, I started looking up cases of synovial sarcoma in the foot and most had amputations. From late June 2017 until my amputation in January 2018, I went through four rounds of chemo, had family and friends rally around me, felt blessed as meals were dropped at my doorstep, lost my hair, felt the sickest I've ever felt in my life from chemo, and took more prescription drugs in 6 months than I had in my previous 52 years combined. I was scared, overwhelmed, angry, and sad. I was also filled with love, gratitude, hope, faith, and every emotion imaginable. Sometimes I'd cycle through all of those emotions in a day. Once I got through chapter one in my cancer journey of diagnosis and chemotherapy, it was time for chapter two, the amputation. By the time I had my amputation, I felt a lot more grounded in my emotions and I knew I would have to focus on healing and getting around with a disability, so I couldn't focus too much on the cancer at that point. I conquered driving with my left foot and getting around my house with a walker and a scooter. A fall on the concrete slowed me up for a bit, but then I healed up and was fitted with my first prosthetic. I have invested a lot of hard work in learning to walk and function with a prosthetic. I adhered to attending regular physical therapy and walked daily. I think that this is why I can walk so well now with a prosthetic. 

I had one clean scan in March 2018 after my amputation, but I knew that I should hold off on an all-out celebration until I've had a few clean scans. I knew from my research, that people like me with an oops surgery (when the tumor is improperly removed) and with the tumor has been growing for 1 1/2 years or more, that often the cancer spreads to the lungs. In the summer of 2018, I found out that suspicious nodules were in my lungs and in November when I was evacuating from wildfires, I got a call from my doctor that confirmed that the nodules in my lungs were indeed synovial sarcoma. I cried when I found out, but I was able to regroup pretty quickly. After the initial cancer diagnosis which was pretty devastating, then an amputation which was life-altering, finding out that I had cancer in my lungs was scary but surprisingly not overwhelming. I mean after what I had been through, my tolerance level in dealing with bad news had grown considerably. In fact overall as a human being, I had grown stronger in ways I could have never imagined. 

Then I entered chapter three, a research study. I'm currently in chapter three, living with cancer. The research study is showing promise. The medicine I am taking has kept the nodules in lungs from growing. The only time they grew was when I took a month off from the meds due to toxicity from the dosage. I experienced a fall this past winter and it took a few months for me to get back to my new normal. What is my new normal and how have I grown in ways I could have never imagined? My new normal is I have cancer and I will always have cancer. I will never be cancer-free, but I can hopefully live a lot longer than previously imagined. The new drugs and research studies may make it possible for me to exceed what the previous research shows to be the expected life expectancy of a patient with my history. The targeted treatments is a game-changer and they just don't know how long people can expect to live on these treatment because the protocols haven't been around for very long. As I reflect on the last 2 years, It feels like I've lived a lifetime in these two short and yet long years. Time has flown, yet there were times that time dragged on when I was going through difficult moments. I am an amputee. Living with a disability has opened my eyes to a lot of things. I am aware of things that I use to take for granted. I have to step carefully and be aware of my surroundings. I can take the stairs but often opt for the elevator for safety reasons. My hips ache after a long day on my feet, since carrying the prosthetic takes a toll on the hips mostly. I am focusing on my kids and spending as much quality time with them as possible. I feel like I'm finally living the old adage, live life as if every day is your last. Recently, I saw a bumper sticker that said, 'All we have is now.' Words to live by. 

I started dating last summer and dated someone very nice for awhile, but decided that we weren't quite a match. He's still a friend and I'm so glad that I was able to see that I could date as an amputee and cancer warrior. If you know any single men in their 50's, who don't mind dating a woman with cancer, who also happens to be an amputee, send him my way and tell him he'd never wait in a line at Disneyland again. Oh, and I'm always assured a parking space right up front! On a serious note, I walked in the cancer support community center Hope Walk yesterday, which solidifies my new normal. I have met some unforgettable cancer warriors since being diagnosed with cancer. I told my kids that supporting the cancer community will now always be a part of my journey. Overall, life has settled down now and the dust has settled for the most part. My main focus is gaining more strength (from working out) and more flexibility with a new foot. I need to take care of my health since my white blood count is still low. I live scan to scan, plan fun things to do with my kids, and I can somewhat start to plan ahead. I say that, but it still crosses my mind when I think about planning things six months out, will I still be alive. I'm not being negative, it's just this strange cancer reality I find myself in. Maybe one day the drugs for my type of cancer will eliminate the nodules and I'll be able to say NED (no evidence of disease). Maybe these drugs will just keep things from growing and I can live many, many years like this. I can live with cancer as long as I can live. I'm here, I'm happy, I'm healthy overall except for the darn cancer, I'm an amputee, and I have a lot to live for! I may have been diagnosed with cancer two years ago, but I had cancer growing in my foot for two years or more before that, so technically, I've been living with cancer for at least 4 years. I'm here to tell you that I'm not going anywhere soon. God still needs me here and I've got living to do.....

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