Graphic photo disclaimer: there is a graphic photo 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.
Clear Cell Sarcoma. As soon as I read his reply to me, I did what anyone in this day and age would do: I googled- and cried. I saw very little information. I saw poor statistics. ‘Are these statistics real? What is this information based on? Where do I fit into all of this?’ I saw rare. I saw incurable, no cure, no information.. I say ‘saw’ because it just felt like my brain was processing all of these impactful words and I just saw the words, not really reading the full sentences at first. There was not a lot of anything in general and of anything that I actually could find, there was nothing good.
I tried to interpret research papers, I gathered that surgery and amputation seemed to be the most successful protocol. Most physicians seemed ‘eh’ on chemo and radiation, both ultimately seeming like it was a shot in the dark, every patient was so different. Different treatments did or did not work for particular patients. There were so many factors to take into account: tumor size, location, mestastes, time, misdiagnoses.. I tried to not go to deep into the rabbit hole, but how could you not? I have never had the personality to put my blinders on and follow orders. I had questions, TONS of questions. I wanted to hear more directly from individuals like me. Enter stage right: Facebook.
Joining Facebook groups dedicated to sarcomas was both the best and worst decision I could make late at night eating veggie straws alone. I was like a fish out of water flopping side to side. Relaxing, gasping for air, and then freaking out again and flipping to the other side. I would read one person’s post and feel hopeful, and then read the next post and drown in dread. ‘Where do I fit in’ was the big thought in my head. That seems to be a very normal thought for someone recently diagnosed with cancer I’ve come to find from talking with others. What stage are we, how bad is it, what are we looking at time wise.. I think of a line from the old westerns my Opa watches: “How long do I got, Doc?!?” Even when not meaning to, we are silently comparing ourselves with other patients to see where we may fall in the lineup. When dealing with a rare cancer that has little to go off of, this seems only natural.
No one would even tell me a stage until I asked (twice, doctors are AMAZING at pretending to not hear you say something and make you feel crazy- this is one of their great talents). Even then they weren’t entirely comfortable defining it for me. Looking back, I’m kind of thankful for this approach. After all of my mind-body research, I realize getting set times, stages, etc aren’t always productive when it comes to healing. Why should we let doctors tell us how long we have? Or how bad it is? Perhaps it is better to receive the information and interpret and manifest that on your own. Late stage 2- stage 3 is what I was told. I have mestastes but I could tell he thought hearing a flat out “stage 3” might be too much for me. In hindsight, it might’ve been. I suppose I am glad he didn’t charge into the room with my cancer diagnosis yelling “Stage 3! Stage 3!” I choose to be thankful for this sneaky approach of his now. Another talent.
I have tried to this day to not give the words ‘stage’ and ‘prognosis’ too much power, or too much thought. Why let numbers and statistics rule our thoughts and emotions when we serve a God that is so much bigger. I had seen the mystic workings of my God (and accompanying positive thoughts) in my life before, and I knew deep down my God did not answer to a doctor’s predictions. Neither did, or do I. God is a rebel, just like me. Together we were going to tackle this head on, whether it was stage 1 or stage 4. Even with all the anxiety and fear I experienced while reading stories in the sarcoma Facebook groups, it was worth it to find the group I ended up finding.
The group is called ‘clear cell sarcoma family’ and it is specifically for, you guessed it, clear cell sarcoma patients and their immediate family members. As I read more and more, I learned the trio of Lennie, Molly and Kelly seemed to be heading up a lot of pushing for research and progress through the 501, Sara’s Cure, created when Lennie’s daughter Sara was diagnosed. I found and continue to find a lot of information and encouragement from this group. Sara’s Cure is the only 501 actually funding clear cell sarcoma research, there is little to nothing else going for us research wise beyond them. If anything, I hope my own personal battle helps push for the progress we need as a whole. I know that is the hope of my fellow warriors as well.
With the diagnosis finally known, I felt I was a step closer to a solution. It wasn’t until I continued to find out more information about my exact cancer and fellow patients that it felt like a step back again. My team at Levine, although compassionate and wonderful, didn’t seem too knowledgeable about clear cell sarcoma. My first red flag went up when I was told I was the 2nd diagnosed case there. No one wants to be number 2. Not when competing in a race, and not when being told where your cancer diagnosis falls in the historical lineup within your cancer institute.
As I was bed ridden with a sore knee and thigh healing from incisions where my 2 lymph nodes were taken and what was left of my foot on a wound vac waiting on my reconstruction surgery, Andy and I started talking about needing to see a specialist. The more I read about sarcomas and my cancer in particular, the more I realized how vital it was for me to be seen by a cancer institute with more experience with CCS. There were a few cancer centers that seemed to have more experience with CCS, so we started talking about visiting MD Anderson in Houston.
One of the most painful experiences of all of the many pokes, procedures, surgeries and treatments was the experience I had with that dang wound vac on my foot (or what seemed like what was left of it) after my tumor excision surgery. A wound vac works by adhering to the wound and sucking all the gunk out and sending it to a collection attachment. The idea is that this helps prevent infection while also speeding up the healing process. Well, come to find using this device on someone with a wound as severe as mine was not the most ideal or painless situation. They had hoped this would speed up everything to continue with the plan of having my foot reconstruction/skin graft surgery as scheduled in 2 weeks.
I was in severe pain with any slight movement of my foot and I didn’t think I could handle any more after only a few days. I had already endured it shutting off more than once, which then when turned back on and fixed, would hurt 10 times worse because it started the suction process all over again. Then a nurse came late at night one night to replace the battery starting the painful process yet again. Also, can you imagine having a long hose connected to your wound that if anyone tripped over or you rolled in your sleep wrong would rip out? For someone diagnosed with severe anxiety (and 3 dogs), this was almost just as painful for me. I was constantly on edge and in pain, both physically and mentally.
The most painful moment of the whole wound vac experience is seared into my mind just like the day of my initial diagnosis. I was told to come in for a routine wound vac change halfway through the week and they’d change it out and I’d be on my way. I don’t think any of the nurses, the PA or anyone, myself included, had any clue how painful it was going to be. I screamed, cried, and convulsed, all while Andy and my brother stood there hopelessly getting to the point of rasing their voices at them to stop and do something for me. I remember hearing them say they couldn’t do anything now and they just had to get the new one on as quick as possible. This and the lymph node mapping have been tied as the most painful experiences of my life thus far.
After recovering from that day, I told them I would not submit to any more wound vac changes without going under. This started the random muscle/nerve spasms I still get. I’ll never forget that pain, I remember it every time I have a spasm. When I came back for my follow up, it all made sense why that wound vac change was so painful. My doctor (Dr. Teng, reconstructive plastic surgeon) wasn’t there the day of my wound vac change, and apologized for my experience. He said part of the reason it was so painful was that the area that my surgeon ended up removing was much larger than what was originally planned on. He informed me the original area to be taken was significantly less, which is why our 1st visit included his plan to take just a small square of skin near my hip bone to use to reconstruct my foot. Now the plan had changed.
It was not a bad thing my surgeon took that much by any means, in fact, I am so grateful to Dr. Sarantou for getting a larger area and achieving clear margins. It just changed the trajectory of my journey is all. It made an easy surgery a more difficult one. It meant a week stay in the hospital. A stay in the ICU. A bigger graft, a much bigger graft. It meant waiting 4 weeks now instead of 2. Dr. Teng let us know that he would perform a wound inspection and wound vac change in a few days with me under anethesia (now for the 3rd time) to see what he was working with (8/27). After enduring the wound vac for another week, I was put under again (9/6) for the wound vac to be removed and switched to dry dressings until my next major surgery on 9/23/19. I was about to be put under anethesia for the 5th time since May. My body felt it.
I was so glad that the wound vac was gone. No more sucking my happiness! Even though he was glad I was out of so much pain, I know doing daily dry dressings on a wound like that for weeks was definitely hard on Andy. It was so scary and gross. I could tell by the expressions on his face alone, as hard as he tried to act nonchalant about it. I could not look at my foot with that gaping hole for the longest time. I might’ve only looked right before surgery when it wasn’t quite as freaky, or maybe it was just a picture- can you tell I disconnected? I don’t even remember. I really have never felt so disassociated with my own body as I did during this time (still struggling with this). Everything was scary, gross, hurt, inflamed.. this new body did not feel like mine. This body had been through so much already in such a short time. It felt like just yesterday I was saying ‘do the biopsy surgey’ and now here we are- half a foot less and two lovely incision scars, and a definite diagnosis.
September 23rd rolled around, a week before my 28th birthday, and I found myself in pre-op for the 5th time. This time definitely felt different because I was being prepped for being in the ICU for a few days followed by the main hospital. Dr. Teng was telling me to expect 7-8 days. I couldn’t even fathom that! I had never stayed in a hospital. I know others stay weeks, months.. but this already seemed like it would feel like forever and it wasn’t even here yet. ‘Does today count as 1 day?’ I thought to myself.
Dr. Teng talked to me in pre-op and explained to me that he had two areas he was considering for the graft. He wanted to make sure I was ok with him making the needed decision while he was in surgery exploring the hair thin blood vessels. He was considering either a large portion of the side of my abdomen going from my groin up my hip, or the entire inside of my wrist. Funny enough, he would want to take the left wrist’s skin with my tattoo since it would have to be stabalized and I was right handed. I was trying to imagine my foot with my mangled tattoo wording on it. I tried to mentally prepare myself for both options and told him to do what he needed to do once he was in there.
I woke up in ICU, it was dark out, and I just felt pain all over. My foot looked huge and was in some big stabalizing contraption. I started looking around my body looking for the other sources of pain. I saw my wrists were ok and I could use my hands and I started bawling. I felt a surge of pain when I cried and realized it was my abdomen. It felt tight and it hurt all the way up my left side. Andy was there and I vaguely remember him covering me up, hugging and kissing me and telling me to rest. I went in and out. The next thing I remember was Dr. Teng coming in, dressed to go hom with his backpack. He came over to my side and asked how I was and I just started bawling again and saying thank you and reached out weakly for a hug. He hugged me and laughed and told me everything went great. I just remember being so grateful for the use of my hands and I realized this was the outcome that I did secretly hope would happen. I spent that first night in the ICU praying for comfort, praying a cry of gratitude to still be here fighting, and praying for the strength to keep going.
2 thoughts on “My Diagnosis Continued”
My thoughts and prayers are with you every day. As a CCS patient, your story is all too familiar. Thank you for sharing your story. Love Cassie, Newcastle, Australia xox
Thank you Emily for giving me he opportunity to read your story. I have just gotten confirmation that my teenage son is diagnosed with CCS. I am so scared. I am too a member of the clear cell family. My heart goes out to you of all the things that you have already endured. My heart is broken for what lies ahead for my baby. I am praying for some sort of miracle. I am going to continue to stay positive, but this helpless feeling retched. I am praying for you and your beautiful family.