My Diagnosis: How It All Began

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”