Well there’s nothing like posting about your aggressive cancer diagnosis and then leaving people hanging for 2 years, right?! When I checked the blog after being MIA for a long while I noticed how many views the blog posts are still receiving and I was shocked! My thoughts then immediately transitioned to thinking how many people probably thought I passed away when my posts didn’t continue.. oops.
HOWEVER, I am SO happy to report that I am alive and well, and NED (no evidence of disease) currently going on 2 1/2 years CANCER FREE! A lot has happened in two years and I’m grateful to say the majority of it has been positive unlike the preceding years.
Although I had hoped to being doing scans every 6 months by now, my oncologist at MD Anderson in Houston has only approved me ‘graduating’ from every 3 months to every 4 months since my cancer metastasized and the stage I was considered when diagnosed. Even though it’s a baby step, even baby steps are huge wins when it comes to aggressive disease. Stable or improvement- that’s the goal.
Because of another new recent change, I had my last scans at MD Anderson this past spring. I didn’t know that at the time, but my husband and I had to change insurance companies when he changed careers. My local oncologist and cancer center is still covered, but unfortunately they do not cover my Houston team. Of course I believe God has his hand in this impeccable timing like everything else and although I didn’t see that at first, with time I realized the peace I felt in an otherwise stressful transition. Since I am doing so well, my MDA oncologist approved me continuing my scan protocol with my local team and reaching out if anything occurs that I would need to come back for.
As far as that career change, Andy has finally opened his dream business with his friend and business friend, Nick. They opened Rent Eboards Charlotte this August in the rapidly growing Camp Northend and have been incredibly busy ever since with rentals, sales, and service for personal electric vehicles like Onewheels, Escooters, Ebikes, Eboards and more. He has supported me since I met him now almost over 10 years ago, and I’m more than happy to now be able to support him while they embark on this amazing adventure.
One of the most common follow up questions I still receive is if I am still on the COC protocol and how it’s going. Yes, I am still on it! Yes, it is still going well! I do have to be honest and admit I am not always 100% about taking every single pill or doing the regimen perfectly every day. It’s something I intend to be much better about because I know how important it is, but I think sometimes I just get tired of taking so many pills every single day and having to perfectly time my food, water, and caffeine intake. I know the alternative is much worse, so again, it’s something I’m trying to improve on as I fully believe it’s worth it and a major reason I’m stable. With so many herbal supplements I swear by and the COC meds, it can just be a lot sometimes. I recommend COC to every cancer warrior I know and we have seen good results so far in our Clear Cell Sarcoma Family Facebook group. To schedule a free call and receive more information on how to get started, visit https://careoncology.com/. I am not paid or supported (or given free pills- boooo) for providing this info, I just stand by it that much.
Another question I receive a lot is what my complete list of supplements is. I have emailed the same list to so many fellow warriors and I figured I should share the information here as well so more warriors (and non warriors!) can start building their healing arsenal.
Highest CBD available– The Hemp Doctor, Liposomal Vit C– most popular on Amazon, Juice plus trio blend + plant based omegas– juiceplus, Vit D– most popular on Amazon, Visbiome probiotic– Visbiome online, Black Seed Oil– most popular on Amazon, Curcumin– most popular on Amazon, my COC protocol is comprised of Metformin, Statin, and alternating months of Doxycycline and Mebendazole *each COC protocol is personalized to the specific patient and you should only receive these medications under proper medical supervision with regular blood labs*. I would love to feel motivated enough to add exact links and photos, but alas I do not. It took everything in me to bold those words so I hope this can be helpful enough for now. I’m sure you can understand the amount of picture saving, inputting and hyperlinking that takes.
Another life update would be how I have become completely obsessed with Onewheeling and have now competed in events, something I haven’t done since I was in highschool (Competing that is, I wish they had Onewheels then). What started as a physical challenge to just see if I could even do it with my healing, reconstructed foot turned into the most thrilling and beneficial hobby I’ve ever had. Gardening, creating art, metalsmithing- all of those things bring me great joy- but there has been something so incredible about what Onewheel has done for me. It helped me gain so much physical and mental confidence again, it connected me with many incredible people all over the country, and has led me to challenging myself in new ways and getting over my fears with competing. I never thought I would even walk normal again let alone ride a board with a single wheel flying down mountain biking trails at 20mph in the most breathtaking areas of the country, but here I am!
I am still doing real estate brokerage in the Carolinas. Among every other challenge cancer throws your way, building your business back after a throttling diagnosis was certainly one of them. I had to sit by looking at half of my foot, living in pain for months with no income while I saw clients use another broker. Could I blame them? Absolutely not. Did it hurt? Absolutely. To this day, I see the occasional client from years ago go with a ‘big time-real estate-is-life’ broker and it still stings, but I’ve made peace with it. After my diagnosis, my idea of success has been very different. I realized I didn’t want to work 24/7, have the newest land rover, and sell my soul to be a top agent anymore. Now I still serve incredible clients and have even been promoted in my company to being a business development manager for multiple areas, but my priorities have shifted. I have boundaries now. I don’t work 10+ hour days every day. I do not subscribe to the hustle. A huge limiting belief we can tell ourselves is that going 110% is what’s necessary to be great, and I’m here to tell you it certainly is not nor is it worth it. Work did not comfort me in the hospital, my family I didn’t spend enough time with did. My clients did not pick me up when I was down (well some of the amazing ones DID), my closest friends who I put work before did. The awareness I’ve received from the many struggles cancer has thrown my way is one of my biggest blessings. I’m glad that my perspective has changed for the better on so many things, even when it’s not what society approves of.
I think that’s it for major updates. Still on the meds, still trying to live life, still doing scans, still working but with boundaries, fell in love with a new hobby, opened business for said hobby and still trying to continue healing in every way. One of my favorite mantras I’ve recited to myself throughout this whole journey is ‘healed and healing’. I swear to you it was whispered to me when I was crying from pain on one of my worst days and I haven’t forgotten it since. Already healed, always still healing even more. Maybe I will share another blog post soon, maybe it will be another 2 years, but please know even if I pass one day due to cancer, it has given me much more than it has ever tried to take from me. For that, I am eternally thankful.
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.
I have been thinking a lot about what I wanted my next blog post to be. I had planned to post much sooner than this but as anyone recovering, healing or just ‘lifing’ in general knows, time gets away from us. I contemplated on continuing to share the next chapter in my chronological cancer story, which I will do regardless, or if I wanted to take a detour instead and blog about one of the many subjects bouncing around in my head. I feel I don’t want to miss sharing some of my realizations from the hardest experience of my life- not just for other’s encouragement, but for my own healing as well. When I first started writing on this subject, we were not in the midst of a global virus pandemic. I winced for a second at my title wondering ‘Is this a bad time for this? Will people take this wrong and not look to proper care when needed?’
I had to quickly answer that with another roll-your-eyes-but-necessary disclaimer: if you’re reading this blog and don’t understand that this is an analogy of being your own nurse for the sake of self care, please understand that now. If you are experiencing any COVD19 symptoms, please seek proper healthcare, and isolate. Take care of your health and care about others around you.
That’s a great segway into this whole concept. How often do we partake in activities with others at the forefront of our mind with ourselves no where to be found? I know I’m not the only one that witnesses that some of the most compassionate and caring people also tend to have some of the most neglectful behavior when it comes taking care of themselves. I know I always find myself worrying about how others will perceive something or what they think, it’s something I have to constantly keep in balance. It’s always a great idea to think of others besides ourselves, humility is a beautiful virtue, but when does it cross over into neglecting or compromising our own wellbeing? It’s time to step back and re-evaluate intentions. Not canceling plans because you don’t want to stop your go-go-go attitude and putting others at risk? Not heeding warnings of large crowds because of the inconvenience it could cause you? Any of that seem familiar right now? Perhaps it takes something of this magnitude to globally scream at people to stop. Stop and REST. Stop and reconnect. Stop and care about your health and others. Stop. Why can we not just… stop?
We live in a toxic society that pushes us to do more, be more, have more and to not. Stop. Moving. At what point will our own health- and when I say health I mean ALL health: spiritual, emotional, mental AND physical- becomes of more importance than suscribing to our world’s poisonus norms? Why is it such a big deal to just self isolate for a while, cancel plans and flights, and just take this time to be smart and safe earlier on? I know this could easily be a rabbit-hole topic as it brings discussion to much larger issues such as the economy- but just for the sake of staying in one lane of thought- what if stopping and resting now could save us from worse consequences later? This seems to echo my own journey of respecting my mental and physical health. Why can’t we put effort in now to avoid a worse scenario later?
That’s what I’ve done with a lot of my recovering (and now self quarantine) time. I’ve thought about what actions reflect truly caring about all aspects of my health. I’ve re-evaluated what’s really important to me, my intentions, goals, and what I need to move forward living my best, healthiest life. For me that’s included a lot of detoxing old negative thoughts and belief patterns that didn’t serve me. Sounds very typical yogi talk, right? I get that- but I also can’t stress how true it is. If you’re still kinda shaking your head about that one, perhaps opening your mind to that thought itself could be a block that you didn’t even know you had. I’ve uncovered so many negative blocks in my thinking myself. The need to be productive. To work harder to be worthy. That exhaustion means success. That validation just feeds the ego, not my soul. Each of these aren’t just cliche beliefs, but rather very true summaries of often painful experiences and lots of therapy. We grow our most in ‘the mud’, that’s why lotuses arise so majestic when they are through the thick of it.
During this journey, I’ve found myself in the hospital many times. More in the last year of my life than in the last 28 years combined. One of the tough experiences always tended to be discharging from the hospital and going home. When I think about those moments, I realize I was always so preoccupied with the excitement and eagerness to go home. I see now I underrated how tough it always was to try and get back to normal, or even just some kind of normalcy without having a nurse constantly there to help you with the push of a button. When you’re in a hospital room, every 10-15 minutes someone is coming to check on you, give you meds, bring food, help you to the bathroom, check your vitals, check your therapy to do list.. it goes on. Then you come home.
You come home and your poor husband is juggling all his own duties plus yours and more, your house isn’t set up to be conveniant such as a equipped hospital room, and everything just seems hard. You heal and still the energy just isn’t there to do what you used to be able to do. Brushing your teeth without pain becomes a win. Those were some of the hardest days. I could go on and on about some of the dark moments or peeing my pants when I couldn’t move quick enough, but people who have been there get it. If you haven’t, I hope you never experience it- but I’m not blogging about peeing my pants. I am but I’m not.
Fast forward through those tough days when all I could do is focus on what was necessary: take vitamins and pills, do the dumb foot soak, clean your drain, check your wounds, clean yourself, eat food that fuels your healing, actually make it to the bathroom.. All the energy I could possibly muster up was used for absolute basics. Things that kept me alive. I spent an hour just taking herbs, immunity support, pills, planning my food and water with it all before even doing anything else. A year ago I was throwing a few vitamins in my mouth as I ran out the door. I would spend so much time picking out plant based, smart meals and counting nutrients, not calories. A year ago I was so busy, I’d just get fast food. It makes me cry and laugh. The irony. The lesson. The blessing.
When I wasn’t in the hospital and I was in some of those tough days where I didn’t want to get up or move or be awake, I would tell myself ‘You have to get up. You don’t have a nurse anymore. You have to do something good for yourself.’ That one thing would start out as drinking water, then taking my vitamins, then getting clean, then eating something. It would go on until I needed to rest, which was also a part of the healing process. When it would get hard, I’d just tell myself ‘You have to be your own nurse. Do one good thing for yourself.’
I had plenty of amazing family members and friends that were there to help and support me, but the reality is that they were not always able to be around to help. I had to take care of myself, too. I had to try. I had to be my own nurse now. Now that I’m here months later, it makes me emotional to think even though I still struggle, I feel so much stronger. I put boundaries up now. I care about my health. I take time to rest. I go to therapy. I do the work to keep being my own nurse every day. I surround myself with people who also do their work to be a better person. I respect that. It is not easy and I still have days I don’t want to get up. I just tell myself the same thing, ‘Be your own nurse, do one good thing for yourself.’ That soon becomes a string of good things for myself, which in turn allows me to be better for everyone. Self care is not selfish, it’s self preservation. It’s putting your health first so that you can be better for all.
I still live with pain, I still live in the unknown. I have scans coming up that might be delayed or canceled or I might have to put myself at risk to do them. I don’t know yet. I do know that I will continue making smart decisions for my own health and the health of others. We will cancel what needs canceling. We will avoid crowds. We will self quarantine minus absolutely necessary outings. You can call it overreacting, or maybe even underreacting perhaps, but for me and mine we will continue to make the smartest decisions for our health, phyiscal and otherwise. We are putting that first in our family. We will be our own self care nurses and pray that we won’t need a real one. We’ll also be praying for all of those amazing healthcare workers on the front lines who we’ve come to adore even more through this journey. Please pray for them, please be patient and kind, and please care about yourself. Do one good thing for yourself and try to keep the chain going. Do something kind for others along the way for bonus points. Stay healthy, all, you’re worth it.
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.
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.
Where to start.. everyone receives the news of their diagnosis differently. Some might be told of their diagnosis out of the blue during a routine doctor’s visit, flipping their entire world upside down in 60 seconds (thanks, doc). Others might have the feeling in the pit of their stomach for months, knowing the truth before they ever even see a doctor, allowing their doctor to just later confirm what they already knew. I didn’t really fall into either of these groups.
I feel like my diagnosis story makes for a category somewhere in between the other two. I didn’t receive the news out of the blue, but I didn’t have that tingly cancer spidey sense for months either, I really didn’t. My diagnosis story involved a bread crumb trail of anxiety, fear, and small bites of information (and surgeries) at a time for months which eventually led to my diagnosis. It was a roller coaster ride just GETTING to that point, that “official diagnosis”.
I almost felt some relief not being in the gray colored zone of waiting anymore. I wanted the black and white, I wanted the good, the bad, the truth. That’s what I got. I remember that day so vividly still. It’s not like it was even that long ago, it’s just one of those days you always know you’ll remember.. like your wedding day, or the day you get that shocking phone call that a loved one has passed. It’s not a great memory, not a great day, but it’s a vivid one.
It all REALLY started about 1 1/2-2 years ago. I noticed a small bump on the bottom/side of my left foot. Such a weird place. Such a weird bump. If you didn’t feel it, you wouldn’t even have noticed it. I let it go for several months, I called my mom, I even tried some plantar wart patches having no earthly clue what the heck I was doing. Months passed, the bump stayed. Then the bump seemed to slightly grow, it was so hard to really tell. It was like living with your own growing kid and your family visits and is like “Oh my, how you’ve grown!”
I reluctantly made an appointment with my GP, who had no clue (shocker), and referred me to a local podiarist, Dr. Eric Ward. After he inspected and scraped at my foot, he kindly continued the new trendy saying: he had no clue what it was. He told me it would require a one-day surgical biopsy under general anethesia to find out if it was something to worry about or not. There was no other way.
So I did what any sane person would do, I left and didn’t go back for almost a year. Listen, I’ve never had surgery in my life, let alone anethesia. I didn’t even get put under for my wisdom teeth extraction! I felt jipped. And the one time I ever got stitches, I was 7, and somehow the wonderfully compassionate physician talked my mother into doing the stitches on my open, bleeding finger without the numbing shot. Because, you know, ‘That would be worse, and we should just get it over with’. Well, I still do not believe that as that is another painfully vivid day seared in my memory. I would like to find that doctor and tell him he should give numbing shots to ALL young children getting several stitches, and I will volunteer to hold their hands. Anyways, this was not news I liked and it was news I preferred to ignore.
After almost a year, I made another appointment with Dr. Ward. He was kind and told me he thought he scared me off. I told him he was correct, but nevertheless I was back. I asked him to please schedule the surgical biposy as nothing had improved and my anxiety about the stupid bump wasn’t improving either. He scheduled it for mid May (2019) and told me I’d need Andy to stay the entire time, drive me home, and I wouldn’t be walking for at least a few weeks. He would make a deep incision in the bump (the bump was deep as well, more underneath than on top of the skin), and send it off to pathology. He would give me a super attractive black boot and I’d start walking with that first. I was working Real Estate very heavily at this time and had multiple houses under contract, I was determined to be back on my feet as soon as I possibly could. This was also my first taste of coming out of anethesia, pain in my foot (which would be a long, painful path), and being bed ridden. Little did I know this was a cake walk compared to what I’d go through later. It truly is amazing how God provides us strength when we don’t think we could possibly handle any more. I’ve endured more physical and emotional pain this year then I ever thought I was capable of.
As I was healing, wobbling to listing appointments in my cute orthopedic boot, and going about my business trying my best not to worry about it, I received a call from Dr. Ward. He told me the first lab essentially said it was “concerning and inconclusive” and that it was being sent to another lab, for an even closer look. A few more weeks passed, another call. The second lab didn’t like what they saw and it was being sent to the University of San Fransisco’s lab. Malignant melanoma is mentioned. All the memories of working at a tanning salon, tanning beds, and long hours on my hometown’s beaches flash through my mind. “Did I do this to myself?” Dr. Ward’s words are gentle and comforting, he told me to just hang tight a few more weeks, which I did. I continue working, waiting, wondering. Andy and I talk about it not being a big deal, we can handle whatever it is. I discuss with my parents, we’re all a little worried, we pray. My Oma messaged me saying ‘She didn’t like surprises’ and hoped I was ok. I reassured her, I didn’t want anyone to worry, that’s why I hadn’t said a word about my first one day surgery. I didn’t want her to know about it. I told her I’d be coming back to Florida again soon, I tried to go every summer. I google melanoma on bottom of foot and only see information relating to a poor prognosis’. I try to rest.
I think to myself, ‘If this is melanoma, even if it’s a bad melanoma, why would it take so many labs (so many dollars), and so much time just to confirm that?’ This was such a confusing time. I remember this aching anxiety like it’s still so very fresh (maybe it’s still there). During this same waiting period, I got a phone call from my mom early one morning. I rolled over, looked, ignored, went back to sleep- I’ll call her back. It rang again, ok- 2 phone calls in a row is an offcial SOS in our family. I picked up and my mom was crying. My adrenanline rushed. “Oma passed away, honey.” She wasn’t really sure, she just told me a few details on how they found her. My Oma had been suffering with COPD for a while among other ailing issues. She was the sassiest, most vibrant and classy woman I’ve ever known, and she had been trailed by a collection of oxygen tubes and a heavy bag with the portable machine toting along for several years now. I know she hated it. I know she was in a lot of pain. But I also know she loved us, my Opa, God and life so much, she was willing to tough it out. I didn’t get out of bed all day, I just cried.
I went down to Florida to spend time with my Opa, mom and aunt. One of the hardest trips of my life. I spent healing time, both with my family and closest girlfriends, but it was and is still so very hard to cope with the void she left. She was such a big soul and took up so much space, space we willingly let her have, because she was so just so damn fantastic. I learned so much from her. I’m still learning from her. She’d love that I’m writing and sharing. During this trip, my dad regretfully let me know that my Grandma was declining. I asked for the information and my mom, aunt and I visited her. Seeing her so frail was so heart breaking, but I used every muscle I could to be overly happy and talk with her. I think in moments she remembered me, I hope she did. I fed her some dinner, held her hand, we all took some pictures, and then we left. She was so tired. She was not the spunky, coffee loving Grandma I knew and loved. My heart ached. It all just seemed too much.
I went back home to Charlotte, and a few days later my dad called to tell me my Grandma had gone to be with the Lord. He actually left me a voicemail saying that in the sweetest, tear choked way before I called him back. I kept that voicemail saved until recently when I told it goodbye and thanked God for the little reminder of how when we believe, grief too, is a joyous moment for we know those hurting are finally free. I grieved for my two beautiful grandmothers. I grieved for my own unknown fate. I grew closer to God. I started praying more. I started hoping they were in guardian angel form already. How long did that process take?
Dr. Ward called and told me that the lab results are back and that he was referring me to Levine Cancer Institute. Again, he comforted me and told me they would handle everything and he would keep in touch. That’s it. July (2019) rolled around and Levine called me and told me they were calling to make an appointment for me to come in and meet with Dr. Sarantou. I think I was in shock and I ended up acting like I was my own secretary or something: “Ok, great! I hope you’re doing great on this wonderful day! What’s that? An appointment with a surgical oncologist? Yes, I am free at 3pm on the 5th! Great, see you then!” I’m sure they thought I had been praying for cancer based on my demeanor. Nope, just a chronic people pleaser in the midst of a multi-layered life crisis.
I told Andy, we both worried, I cried, he reassured me. I toughened up a few days before the appointment and told Andy I didn’t want him to miss work for a simple ‘consultation’. The location of his work and the hospital alone would make a short appointment take hours out of his day. I told him I’d call him right away. I drove to Levine, pulled up and used their fancy cancer patients only valet service, and rode the elevator up to Dr. Sarantou’s office..’Surgical Oncologist’ I read on the paper they gave me. Once they called my name, the nurse got my vitals, and Dr. Sarantou came in shortly after. He was kind, straight forward and reminded me of a cross between a classical-music-loving grandpa and Robert De Niro. He quickly jumped right into my pathology report, and as he dove deeper, my stomach turned faster. Malignant..neoplasm.. possibly… tumor.. surgery…
The words were coming at me so fast and I was trying to catch them all. I had never been so pissed for not having a notepad. I couldn’t even speak up to ask for one, I was welling up with tears and trying my hardest to listen. He asked to see my foot. I whipped back to reality as my physical body was given a command. He gently lifted my foot into his lap and started marking it with a sharpie. He informed me that they’d like to remove the tumor right away, get clear margins, do lymph node mapping, and get further testing done to come to an official diagnosis. He said regardless of whether it was malignant melanoma or another cancer, this would be the next step either way. We didn’t want to leave it and let it continue to grow and get comfortable. I left that day with a folder of now-you-have-cancer-info, my pathology report, a referral for a reconstructive surgeon, appointments for a PET Scan, MRI and another surgery. I remember feeling like I floated out of that building, into my car, and all the way home. In shock. Cancer. In disbelief. Cancer. Just sitting in such a deep sadness that overwhelmed me. Cancer. Why had 2019 made me its target? I felt like I was grasping at nothing. I prayed harder. I called Andy.
August (2019) flew by. I had my PET Scan to detect any other possible spots of cancer, I got injected with radioactive sugar to locate any hiding cancer (more on that connection in later blogs). I received the relieving call a few days later letting me know the scan was clear. Andy and I cried together. I met with Dr. Teng, my new plastic surgeon, who discussed my small skin graft that would be required for Dr. Sarantou’s surgery. Originally they talked about doing both surgeries in one day, but ultimately decided not to risk any issues or a second skin graft if the first one failed. They told me I’d be looking at that reconstruction surgery 2 weeks after the first surgery. I prepared. I nested as a mom nests for her soon-to-be baby. I ordered a knee scooter, ice packs and a butt cushion. I mentally prepared to not walk again and to not know when that would change. I tried to be positive and I adjusted my home and life to reflect that impending change we were about to experience. I prayed for homes to close and have my clients taken care of. We took a short trip with friends right before to get my mind off of it. God started to really show up for me around this time. Please don’t mistake me- he didn’t show up because I needed him now, or because I had been praying harder and more often than ever. Nor was he there because some light turned on that notified God that this human has hit their breaking point. “Hey buddy, uh, this Emily, she’s had a rough summer- I think you should finally hit reply.” No. He showed up because I started authentically seeking him. I started letting him in. I started to talk to him and tell him my worries like he was the best listener ever (he was/is/always will be). And as hard as it was, when I would get very quiet and shut up my own mind chatter, I would hear him respond. I would feel my pulse slow and hear that comforting voice inside telling me to keep moving forward. 2 dead grandmothers, a diagnosis, a surgery and now another surgery with a 3rd following that. Keep moving. Ok. My Oma wouldn’t give up,my Grandma wouldn’t give up.
Graphic photo disclaimer: graphic medical photo below.
We checked into one-day surgery, and I was reminded that I would go to the radiation department first to get the lymph node mapping that Dr. Sarantou pushed for before they got me ready for surgery. A nice man led us in, introduced himself to Andy and I, made small talk, and started to explain the process. He was very honest in explaining that the procedure is painful, and that the particular spot on my foot that would take 4 seperate syringes deep down would be exceptionally painful. I appreciated the honesty and braced myself. Andy held my hand through the procedure while they injected 1 large, long syringe into the exact, tender, incision covered bump on my foot. I screamed. I cried. I squeezed Andy’s hand so hard my own hand hurt. It happened 3 more times, I was crying that I couldn’t do it, they urged me on, I kept still, I don’t know how. I still don’t know how I didn’t pass out. As I lied there shaking and still crying, they started to point to a map of my body on a computer above us. They said they had two spots “light up” and needed to mark them for the doctor. They explained these were spots of “possible concern” and that IF anything needed to be done, Dr. Sarantou would make that call in surgery. They marked a spot behind my knee and a spot near my groin on my upper thigh.
They handed me a folder to give to my surgery team and directed us to pre-op to get ready for the surgery. After getting dressed in the lovely get up again, Dr. Sarantou came in, marked up my foot, explained that there were 2 lymph nodes that popped up that he might decide to remove once in surgery, we asked a bunch of questions (I actually remembered the notebook), and then they rolled me into surgery. When I woke up, Andy was there and was happy to see me. He said the surgery went great but they did take more than originally planned. I also felt pain in my knee and upper thigh and knew he took other things of interest too. He took 1 lymph node from behind my knee (popliteal fossa), and one from my upper thigh (inguinal). The knee node returned positive (in cancer world positive is never a positive thing!), and the groin node returned clear. While the tumor was explored more in the lab, the pathology report for the knee let us know there were still tumor cells present in my knee. As I came home and started to heal yet again, this time in pain that was previously unknown to me, my medical team at Levine turned their attention turned to my knee.
I’ll never forget the quick email exchange between Dr. Sarantou and I on September 4th (2019). I emailed to ask if there was any update on the results for the tumor. Was it melanoma? Something else? A sarcoma was possibly mentioned? Everyone seemed perplexed and slightly concerned when the lymph node came into play, I could feel it- they were knowledgeable, but I sensed this wasn’t as ‘run of the mill’ as I thought it was. His reply came an hour later:
“Final report is pending but preliminary is clear cell sarcoma. Will know more soon. TS”