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So when I started this website and blog – it was to share health tips and share some information about myself. What my passions are – helping people, cooking and good health. This post is raw, it’s real, and it’s a lot different than what I have shared in the past.
If you know me or have checked out my site before, you would know that 3 years ago, I was diagnosed with a low-grade sarcoma on my right foot. While pregnant with my first child, I was getting a pedicure and the technician and my step sister noticed a pea size nodule on my right foot while getting a foot massage. After having a few family friends look at it – I was told it was probably a ganglion cyst and nothing to worry about. Obviously when you are pregnant, they won’t do anything for you anyways so I put it off. I also didn’t see a big deal considering several physicians told me it was probably nothing to be concerned about. That it was probably benign and not a big deal. Before I knew it – I was pregnant again and the pea size “cyst” on my foot grew to golf ball status. No exaggeration – if you know me – you will remember it. It wasn’t painful – it was just huge. So post baby 2 – I knew I needed to take care of this issue.
Thinking it was hormone related – I had an MRI and was sent to an orthopedic oncologist because the findings were very bizarre after I had my second child. The needle biopsy showed nothing and surgery was scheduled. They removed the mass on top of my foot and I thought it was a done deal. Little did I know that was not the case.
10 days after I went to an appointment with my 17-month old daughter and 3-month old son in tow, to what I expected to be just an incision check and possibly take my stitches out. Instead – I was blind sided to find out the mass removed was actually a low grade myxoid sarcoma. What does that mean you ask? Well – first off Sarcoma is rare – and the kind that I have is even more rare. The benefits of this kind? They are slow growing and generally stay localized. But the recurrence rate I was given was 10-80%…meaning they have no idea.
So I left the appointment scared – sad – mad – angry – confused – you name it. Soon after we started my treatment plan of being watched. If you have been through this process personally or with someone you love – you know how draining emotionally this process is. It takes a while to feel like yourself again. And I was going for scans every 3 months my first year – scans of my foot and scans of my lungs. So every time I started to finally calm a little – I was revving up for a new round of testing. A new round of “what if this is back”. I was a new mom of 2. I had a major fear of missing out on my kids and not getting to experience life with them. Sure – this sounds extreme – and this was NOT my case (my situation is NOT life or death – but when you have first-hand watched the worst of the worst with someone you love, it’s only natural for your mind to go there).
After a full year of clear scans every 3 months – I started to believe in my head that maybe this was in fact hormone related and since I wouldn’t be having anymore children – this would never become a problem for me again. Year 2 came and I got to be upgraded to scans every 6 months. This gave me more time to start feeling “normal” again. Normal as in living my life around ME and not the fear of testing every few months. Of course every time it would get close to testing time – the fear would reappear. I know – this is normal. The last year I was able to move to annual which was a big upgrade. I cried leaving the office in happiness knowing that I could have a full year of normalcy without having to worry about appointments and testing. But something was different this time.
As the year rounded out – I started to get nervous. I didn’t feel as confident as years past. I assumed it was because this was the longest I had gone without testing so it was the longest I had gone without the reassurance of hearing “all good – see you in 6 months”. When they called to schedule my appointment – I could feel the anxiety kick in. I could feel the fear setting in. But I know from years past – this is how I react when it came close to test time. I get in my head. I get scared. I fear the “what ifs” – and I know now that this is normal.
For the last several times – I had gone to my tests solo thinking I would be okay because there would be no reason for bad results. They told me from the beginning if I was going to have a recurrence – it would start the same way it did originally. I would be able to see it. I would be able to feel it. We could catch it quick – possibly carve out some new margins in a new surgery and move on.
Unfortunately for me – that wasn’t the case. You see – my doctor is amazing in the fact that he is great at what he does – but he also understands the emotions that come along with it. So he always tests me and gives me results same day. The appointment I was walking into was not what I expected.
So year 3 scans on January 2nd showed change. They showed a 3 mm layer of change on top of my entire tumor bed. The tumor bed at the end before surgery that was the size of golf ball and pretty much covered the entire top of my foot. The fear set in. I could feel my breath getting short and my chest tightening. I was alone in my appointment hearing that they didn’t know what the change was – but it was enough change they couldn’t ignore it. So more testing was needed.
After bringing me up in their tumor boards – because again – my doctor is amazing in that he is open to any and all opinions – they decided I was not a candidate for a needle biopsy because it showed nothing last time – but a punch biopsy would suffice (instead of opening my entire incision from 3 years ago – which basically takes over the entire top of my foot).
A few days later – they confirmed my tumor was back. The difference this time is it came back not how they expected. Although it is still the same low grade sarcoma – it was presenting itself in a different way as a layering so “carving out another margin” is not an option as expected. And then I learned the worst.
You see – sarcoma in your foot is a lot different than if it was in your arm or your leg. There isn’t a lot of tissue and muscle on top of your foot. Run your fingers over the top of your hand or the top of your foot. What do you feel? Bones, tendons, not much else. In my first appointment when I was told it was cancer – I asked him if I didn’t want to deal with this again – what was my best course of action? His response was one that I never expected to hear. It was to eliminate my foot. I remember that moment like no other. The shock of a response you never in a million years expected to hear. My jaw fell – my eyes welled with tears – my stomach dropped and my whole body got hot. I could see his mouth moving and I couldn’t hear a world after that. I was there in the room but I was numb. But again – as time went on with clear scans – I thought this would never become an issue for me.
But now – here I am – year 3 with a recurrence that can’t just be “fixed” – it can’t be repaired – it can’t be carved out and clean margins aren’t an option. And to give me the best chance of NO cancer EVER again – no metastasizing – and the BEST functionality…I am going to have to lose my right foot.
I can barely process writing this sentence out – let alone saying it out loud. To lose my foot to cancer? To have to learn to walk again? To not be mobile for a few months while I learn to re-walk – use a prosthetic – gain my strength and confidence again? It seems unreal. It seems like a bad dream. I have cried – I have screamed – I have crumbled – I have had my pity parties. The “why me” the “why now” the “I am super healthy – I eat well, I am a health and wellness coach for goodness sake” – the “I exercise regularly – I take good care of myself” – the “I am a young mom with 2 small kids – how can this be happening to ME”. But guess what? Cancer doesn’t care. Cancer doesn’t discriminate. And sometimes no matter how healthy you are and how hard you try to stay that way – it can still affect you. Why are so many people getting cancer these days? If you are someone who doesn’t believe this is an environmental issue and a food source issue, then I don’t know what to even say.
So as I prepare the next few weeks for a surgery I can never prepare myself for – I remind myself a few things. 1. This could be worse. This is not life or death. I have choices – even if they aren’t ideal. 2. I don’t die. I won’t miss out on my kids. I will get to be there for every moment. To first days of school – to graduations – sports games – dance recitals – weddings – grand babies and more. 3. I am one determined and strong woman. I have learned over the years that I have grit and strength deep within. And even though this is not ideal – it’s not fair – and I will never understand it – that I will be okay. I will fight – I will walk again – and I will do every damn thing I did before with 2 feet as I will with one and a prosthetic. 4. This WILL NOT BREAK ME.
More silver linings? My people. To say my support system is off the charts would be an understatement. The outpouring of love, support, positivity and motivation is beyond anything I ever expected. When at my most rock bottom moments of life these past few weeks – these amazing people – my mom who is literally a gift from God – my husband and kids – my very best friends near and far – my health and wellness teammates helping to step up to help my team while I handle this – I cant even begin to say the word grateful covers it. Sometimes it takes a tribe. And if you know me – you know I am not good at asking for help. In fact – I rarely ever do because I like to be independent and just do things myself. But the next few months are going to force me out of that comfort zone and accept the help from those I love and who love me back. I am going to have to accept the help with major gratitude knowing more than likely I won’t ever be able to repay them for helping me through this horrific time. But to have those amazing, unconditional loving people surrounding me gives me peace to know that I will be okay and get through this. That my kids won’t skip a beat and they will be okay through this process.
So of course you know me – I am already thinking of ways I can make this into a positive situation. So what are my plans? My plans are to build my strength as much as possible until my surgery. My plans are to go home with only crutches because I refuse a wheel chair. My plans are to get in a prosthetic as soon as I am able and freaking ROCK this whole walking thing. My plans are to show my kids that I chose the hard path to be here for THEM because I never want to miss a moment. My plans are to work with my oncologist on becoming a patient advocate and help others going through similar situations to offer support and empathize with their feelings when you don’t have anyone in your network who can relate. My plan is to make a difference and inspire others that sometimes life SUCKS – and sometimes it’s unfair. It’s okay to cry. It’s okay to scream. But then you pick yourself up and you show life who’s boss. I will run a 5k by the end of the year. That is my goal. Will I ball my eyes out at the end and cry? Hell yes. But goals people…goals are what get us through the hard stuff.
I was on the fence on keeping this journey private or being public with it. The bottom line is – you can’t always hide a prosthetic and my husband brought up that a struggle I may have is feeling insecure or embarrassed because of it. And he is right. So I thought about it. I thought about the courage of the Katie Warren’s and the Jacey Draughn’s who have fought cancer battles and shared their journeys. They have inspired me with every post. They have shown the world that even though scary things can happen – you can see them smiling and healthy on the other side of the battle lines. I commend you ladies big time for your strength and determination. Rock star status doesn’t quite cover it. So I figured if I shared what was happening as it happens – it won’t feel like such a shock to me to share with the world what is happening when people see me.
So for now – it’s one day at a time. Taking things as they come. This will by far be the hardest year of my entire life. I am scared to death. I cry a lot. But I know in the end I will persevere – I will inspire. I will get myself back. And most importantly, I will be okay.