Graphic photo disclaimer: there is a graphic photo(s) of my foot post-op near the bottom of this blog. Please be aware, skip this blog, don’t scroll to the end, or do whatever you need to do if you are triggered by graphic medical images. You have been fairly warned as this is my uncensored journey with a medical diagnosis.
Last time I blogged (about self care), the COVID19 pandemic was present.. and growing. Shortly after we entered a nation-wide lockdown, and back into my hermit shell of scanxiety I went. Within a week, every plan was canceled, everything was up in the air and the world just seemed to pause. I was scheduled to get my first set of follow up scans (3 MRI’s and 2 CT’s) at MD Anderson in Houston in April (2020). A week after lockdown started, they contacted me to let me know we’d have to do a 14 day quarantine in Houston BEFORE I could even step foot in the hospital. Obviously, the easiest route at that point was to transfer the follow up scan order to Levine instead.
As any cancer patient knows, scan scheduling and authorizations can be a real nightmare. Each MRI and CT requires a seperate insurance authorization. That on top of having a rare cancer with no code or registry, peer to peer reviews continued to be necessary for every scan. With all the chaos of COVID, the transfer of location and multiple authorizations, mess ups and delays occured for weeks. The first time I went in for my follow up scan, I was supposed to have all 3 MRI’s and left with none. The second time I went for them all, I got two. The day right before my graft-carving-down surgery I finally got them all completed. That was June 21st (2020).. my original scan order was for April. This is just a small example of how the current COVID19 pandemic has affected millions of cancer patients worldwide. Surgeries and scans delayed.. treatments put off.. the mountain that already seemed so hard to tackle now seemed even more ominous. Not to mention the fear of contracting the virus as an immune compromised individual to top it off.
As I prepared for the next surgery, which I thought would be the last, I was so excited that my bulging foot skin graft would now be shaved down. One more step towards normalcy. Dr. Teng would go in, carve down the graft/fat to make my foot appear more normal in shape. The surgery went ‘textbook perfect’ and I felt so happy and relieved when I saw my foot.
I went home after surgery and started yet another recovery period. Within a few days, my foot started to swell and got increasingly red and discolored. I contacted Dr. Teng and we ended up leaving the house right away on a Saturday to head to the hospital (he was at Lowe’s so I feel equally bad for interrupting a good shopping trip). I ended up having an emergency drain situation involving Dr. Teng opening, draining and installing a drain in my foot. he did an amazing job as usual, but in that moment we all definitely went from feeling relieved to concerned. It’s amazing how life works sometimes, isn’t it? We can go from the top to the bottom so quick, if anything, this solidifies that belief that ‘nothing is forever’. That can feel like a curse and a blessing, but it’s gotten me through a lot of rough times over the last year. Thank God that belief goes for pain and suffering as much as it does for bliss.
So I went home to re-start the recovery process with a much more uncomfortable foot with a drain sticking out. Cancer has a way of making you constantly feel like you’re taking steps back after taking one step forward. I tried to look forward to my next appointment post-drain with optimism, but my gut just felt like dread.
Everyone’s worst fears were confirmed when we were told that a combination of the radiation, shaving surgery, fluid build up and draining incident pushed the skin over the edge. It was dead. The skin graft that we worked so hard for, that left a 12 inch scar on my side, that was the hardest part of the whole last year.. was dead. I never realized you could feel grief for skin. I couldn’t help but feel like it was all for nothing. “What’s that big scar?” “Oh, that’s for some skin that no longer exists. SO worth it and would recommend 10/10.” Not. I waited a few weeks with the dead graft attached, and then back into surgery again I went to get it removed and get a wound vac put back on.
As I grieved, I still tried to keep my mind focusing on moving forward and not looking back at what had gone “wrong”. I tried to honor both of those emotions: the feeling of loss, and the feeling of motivation. There can be so many unexpected setbacks along with journey, you can’t control that. I could only control my attitude and my responses to each hurdle. A strong breeze makes for a strong tree as they say, and my roots were growing stronger and deeper. Each hurdle would eventually not feel as big as the last one, each time I was reminded I’ve done this before and could do it again. So much of my grief and fear started to transform into the determination to keep moving forward, no matter what.
During all of this, I had my initial consultation with COC- Care Oncology Cancer Clinic- about their protocol of every day drugs used in a special combination to block the metabolic pathways of cancer. COC started in the UK over 10+ years ago treating patients with late stage Glioblastoma and has now been established in the US for the last few years. One of the amazing ladies of Sara’s Cure, our scientist Kelley, had been educating me about how it worked and something in my gut said “Do it, what do you have to lose?” So I got my blood work done, met with the oncologist (virtually) who looked over all of my medical records, scans, etc. and they created my protocol. There are over 100+ slightly customized combinations of the medications depending on the specific cancer, stage and so on. My protocol consisted of Metformin, Statin, Doxycycline and Mebendazole (Doxy and Meb were swapped on and off every other 30 days while Metformin and Statin were daily.)
With a rare cancer like Clear Cell Sarcoma, there’s really no protocol or plan to keep patients in remission, let alone increase their response to treatment. That’s the goal of the COC protocol meds, and when I realized my options were either a) do nothing and continue scans every 3 months or b) try this protocol which could help keep me cancer free longer, it seemed like a no brainer. That’s not to say that there are no side effects that can happen, as are with all medications, but for me the rewards have continued to outweigh the risks. With all the supervision, blood work and side effect monitoring, I am happy to report I haven’t had any issues and my oncologists (COC AND my regular oncologists at MDA and Levine) have said my blood work and levels are picture perfect. I truly feel as though God has guided me to all the therapies, supplements, and education that has helped me heal- and continue to heal. There’s been many times where I look back and thought, ‘How did I have the mental energy or brain power to set that all up/look into all that/read all of those books?’ and I know that strength is not all my own, but through him.
My top coping method throughout this last year and a half of my cancer journey, has been to look for the light, look for the good- even when it feels like there’s none. So it’s fitting to end this blog post with the good- both news, and some happy pictures of my 2020 highlights. I know, I know- you’re thinking ‘Highlights?! 2020 has been a horror show!’, I get it. That’s why I HAVE to look for, and focus on, the good. I might not make it if I didn’t. Because through all the bad, I have come to find there is always, ALWAYS good. SO here you go- besides being grateful for the good response I’ve had to the COC meds so far, I am also grateful that those May/June scans that were such a pain came back CLEAR! I am also grateful to report that my September scans that I just had in Houston at MDA are also CLEAR! That means that I officially have 6 months of no evidence of disease. Praise. The. Lord.
I know this fight will never feel ‘truly’ over, but I feel as though I have won THIS battle. I never finished blogging about how my journey went after my major surgery in my 2nd diagnosis blog, but I would love to share that story among others as I continue to write some day, and hopefully help others with my own experience. Long story short to not keep you hanging, after that major free flap skin graft surgery in September of 2019, (which as I spoiled for you in this blog post later died- encouraging I know!), I went on to have a long recovery. We also picked up our entire lives, pets included, and temporarily moved to Houston over the holidays for 2 months (2019) while I received 35 treatments of radiation to my foot and knee. So to say my journey has been easy would be a lie. It has not.. but we were never promised an easy life. No one is entitled to a ‘get out of suffering free’ card. We’re just promised that if we look up, we’re never alone through it all. I have my NEW skin graft surgery coming up next week the day after my birthday (I know), so into another battle I go- another battle I will win, even if there’s a hurdle. I’ll find the light.