33 years cancer-free!!!

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Being told you have Ewing’s Sarcoma bone cancer at 14 is devastating. Going through chemo and radiation isn’t for the faint of heart. Losing your hair is heartbreaking. Being sick to your stomach, dead tired, terrified, and feeling as though your world is coming to an end, really puts your life in perspective.

Having cancer sucks. Beating cancer ROCKS!! It changes you though. It makes you realize that each day is a gift. A gift to be cherished. Here’s the thing – we never know when our time will be up, so it is so important to live life. Be KIND, be COURAGEOUS, be STRONG, have HOPE, and INSPIRE others.

Learn from your mistakes, embrace the messiness, forgive, dance, sing, be silly, eat the cupcake (or two…), savor the moment. Travel, spend time with loved ones, and be present.

These past 4 years have reminded me of how lucky I am. Yes, my leg is fragile, and I have been through hell and back, however – I never give up. That’s the secret. NEVER GIVE UP. I went 30 years on this damaged leg before it broke and this wild journey started. Each day I get up and do the very best I can to get my life back on track.

If you are reading this and you are struggling, please know that you can make it through. Have faith and believe that you are strong enough to fight the battle. Life isn’t perfect and it will test us to the very core, and I am here to tell you – YOU CAN DO IT!

Some of the most amazing people I know have been through the toughest times and they shine after the storm. That is my wish for you. May you come out on the other side, stronger than before.

Life – is this amazing gift. As my daughter would say (and Mae West), we only live once, but if we do it right, once is all we need!

IMG_0095 (Fun fact – The yellow ribbon raises awareness for Sarcoma/bone cancer!)

Until next time, be well and go out and do a random act of kindness.

Jewels

 

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Always be grateful!

IMG_5039….indeed it is!

Life isn’t always perfect but it sure is beautiful.

Life has been busy these last two months! No major updates to share. I am still working hard at physical therapy (obvi) and waiting for the custom compression garment to come in. The original one wasn’t made correctly so we had to send it back.

Let’s hope it comes back soon because my plastic surgeon is leaving Boston (gulp) so if this foot is going to open up, I would rather it happen BEFORE he leaves next month! However, I am going to be positive that the foot will be just fine and I can finally get out of this orthopedic boot.

Great news – I continue to make progress with physical therapy and my stubborn quad muscles are starting to wake up. Slowly. Very slowly, but I will take what I can get! Progress is progress, am I right?

Even more exciting, I have been able to spend time with my granddaughter, Olivia. It amazes me how quickly she is growing and learning. When I say she is smart, I mean she IS smart! And seriously, she is funny. Belly laughing funny. Liv reminds me that life is beautiful. It doesn’t matter if you are having good days or bad days, just be grateful to live this life.

I know we are getting into the holiday season where we are “reminded” to be thankful, but do we really need a holiday to remind us of that? Each day is a gift and I don’t know about you, but I am grateful for each and every day. The hard days make me stronger and the good days make me appreciate all that I have.

Some days I may struggle, but the struggle is part of my story.

What’s your story? What are you grateful for?

Until next time, be well and go out and do a random act of kindness.

Jewels

 

 

 

 

 

Life lessons

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There have been many life lessons that I have learned during the last 3.6 years.

One very important life lesson: Every story is different. There isn’t a single person who can say they know what you are going through. Doesn’t it annoy you when you are sharing your story and someone says, “I know EXACTLY what you are going through.” No you don’t, and here’s why.

I am the only person who knows the feeling I get in my chest when I go for an appointment and it is overwhelming. Overwhelming because there are so many factors when trying to figure out what to do to get me where I need to be. Where I want to be.

How can I go from having my leg wrapped every single day in layers of foam and short stretched bandages, to being in a compression garment to control the swelling which will allow me to get back into a shoe? It sounds easy, however, I am such a “unique” case, that the answer is complicated. And just for the record – can we find a new word to describe me and my situation? “Unique” is getting old.

One person may think a custom garment will work if it is lined in silk and has silver in it, and then another person will disagree. What do you do? One person may think a new custom carbon fiber brace will work which will allow me to get out of the orthopedic boot and into a sneaker. Another person will disagree. What do you do?

Let’s not forget one very important piece of this – I am on a hip restriction for life which presents many limitations. How will I be able to get these compression garments on by myself? They are hard enough to put on for a person without any restrictions. The “easy” answer seems to be that “someone” can simply help me. I didn’t realize that the magic fairy will deliver that “someone” to me. It isn’t easy to find someone to swing by each day and do these things.

The list goes on but who really needs a laundry list of issues? The road has been long and I put on my big girl pants each and every day and give it my all. Some days the smiles come easy and other days the tears replace the smiles.

Another life lesson I have learned: At times, I walk the journey alone. Especially in my heart and soul. My family, friends, medical professionals, et cetera, have been wonderful. Amazing, really. But I am the only person who feels the stress and the overwhelming feeling of “will I ever get my life back?”

I do know the only way to figure out if something will work is to try it. That can be terrifying when there is so much to worry about. The darn what ifs can make a girl stressed out! “What if my foot opens up again?” “What if I need another free flap surgery?” “What if I can never drive, work, be “normal” again?” It is easy to get up one day and decide, I am not going to stress or worry about x,y, or z and then the next day the worry and fear set in. It’s just a part of life.

Every story is different. No one person knows exactly what you are going through. One day may be tough but hopefully the following day will be better. Trust me friends, my journey started with a limb salvage situation and I am so thankful that we saved this leg and foot. There are truly no words to express my deep gratitude for what my amazing surgical team has been able to do. But! That doesn’t mean the journey has been easy.

Every day is not rainbows and butterflies. Sometimes it is okay to say, it sucks. It hurts. I am so confused. I want to move forward but I am stuck in limbo.

One of the most important life lessons: NEVER GIVE UP. Today may have been overwhelming, but tomorrow will be better. We are going to figure these things out. Trial and error. Tears and smiles.

Until next time, be well and go out and do a random act of kindness.

Jewels

 

 

It’s complicated!

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Have you ever been super excited for something and you wait and wait and then the time comes and, yeah, it doesn’t go as planned? It’s kind of a bummer, right?!

I headed to Boston on Friday so I could try on several compression garments with the hope of getting out of this orthopedic boot and into a sneaker. A SNEAKER! I haven’t worn a shoe on this foot in 3.5 years. Can you imagine?

So at the crack of dawn, off we went. I was hopeful that things would go well and was prepared for any bumps in the road, such as the foot opening up again. My lymphedema therapist allowed me to bring several different samples of compression garments that may possibly work.

It is a rather complicated situation. My lymphatic system has been compromised and we have worked very hard to bring the swelling down and maintain that. I had 750ml of fluid from the knee down, and now it is controlled and that fluid is gone! In order to manage the lymphedema, I go to therapy a few times a week and my foot is wrapped every single day. And when I say wrapped, there are several layers of foam and short stretch compression bandages to control the swelling.

With these wraps, I cannot fit into a shoe/sneaker. So the idea is to get out of the wraps and into a compression sock/garment that will allow me to fit into a shoe. The garment will control the swelling while being less bulky.

In addition, I will transition from my orthopedic boot and get back into my carbon AFO brace. That is, if this type of brace will still work with my delicate foot. From the infection I had in my foot, it left the bone and Achilles tendon exposed for 9 months, and the numerous surgeries to heal that area has left it very fragile.

To add to this, since my new hip dislocated, I am at a 60 degree hip restriction for life. Yes, folks, for life. Do you see where this is going? There are so many moving parts! The compression garments need to ensure that there is no “pulling” or “shearing” in the foot area so it doesn’t open up that old wound. The garment also needs to be something that I can get on and off by myself which is no easy task with my hip restriction.

My carbon AFO needs to be able to support my drop foot but it can’t be to snug around the back of my foot, because if it is, it will open that fragile skin.  We won’t know if it will work until I can actually put it on.

The folks in Boston did not approve of the compression garments that I had with me. They believe I need to have a custom garment made so I wasn’t even allowed to try them on!

So the plan is to continue with the wrapping and orthopedic boot for now. I see my orthopedic surgeon in 3 weeks and we hope that someone can be there to see about having the custom garment produced.

We all agree that it is better to do this right the first time, even if that means I need to wait a little while longer. It’s been 3.5 years – a few more weeks and/or months isn’t that bad.

It’s complicated but progress is being made and that is a beautiful thing!

For now, I will continue to kick butt in physical therapy! My hamstring muscles are stronger, which is awesome. My quad muscles need a LOT of work and it is a struggle! While I still can’t raise my leg on my own, I practice every single day and I am confident that I will improve. The flexion in my knee needs to improve greatly and we continue to work on that as well. “Normal” extension in the knee is 140 degree flexion, and I am currently at 40 degrees. So there is plenty of work to do.

There are days where it feels overwhelming, but as long as I see progress, I feel encouraged. I will NOT be defeated!!

If you are out there reading this and have similar struggles, hang in there!

Until next time, be well and go out and do a random act of kindness.

Jewels

 

One year … a lot can change, yet some things remain the same.

Resilience is all about being able to overcome the unexpected. Sustainability is about survival. The goal of resilience is to thrive.”  – Jamais Cascio

Tomorrow will mark a year since I had my hip/joint and femur replaced! One year, friends. Holy crap!

I remember how terrified I was of that surgery. How many times I questioned the outcome. What if – should I – how about – you name it, I thought it. The reality was that I didn’t have a choice. The surgery needed to happen, and so, it did.

Here we are, one year later. A lot has changed, yet some things remain the same. I am working my ass off at physical and occupational therapy! And I have to tell you, it is NOT freaking easy! Learning to walk after 3+ years is HARD.

Thankfully, I am in a far better place than I was, yet, I have a way to go. A year ago I couldn’t walk 80 steps ON.MY.OWN!! No crutches, no cart, just me and my two legs. AMAZING. A year ago I didn’t feel as healthy as I do now. A year ago I didn’t know how much I was capable of, but I sure as heck do now.

Even though I still can’t drive, work, or do many of the things I want to do, I am getting there. I am reaching new goals. Feeling a little more confident in each new day and my soul is healing.

My friends and I still can’t believe that I am “high maintenance” after all of this time. Health issues take a toll on people and relationships and that is just how life is. The enormity and stress of it all will test the patience and resilience of a person. Stay strong! Tomorrow is a new day to start over and begin again. No-one ever said that this life would be easy, friends.

So here we are, a year later. Better. Stronger. Still working hard. Improving. Moving forward. Making it happen. WALKING. Freaking WALKING!!! (Okay, really only taking 80 steps, but, c’mon! That is awesome sauce!)

Whatever battle you are going through – don’t ever give up. You can work through it. It may not be easy, but it will certainly be worth it.

Until next time, be well and go out and do a random act of kindness!

Jewels

 

 

WALKING for the first time in 3 years! What?!

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Greetings, friends!

WOW! WOW! WOW! I have exciting news to share with you! For the first time in over THREE years, I have walked on my own, without my crutches. Without holding onto my PT or OT’s hand. Without holding onto the wall, a cart….

It will take a while to get to where I need to be, but it will happen! For now, I can take about 30 steps on my own and everyday I continue to work hard. For all of the moments (and there have been MANY) where it has been tears of frustration-sweat-heartache-pain-setbacks-blah-blah-blah, I DID IT!!

I wish I could explain to you how it feels to fully weight-bear on this fragile leg of mine and take these precious steps. It’s just … Odd. Different. Weird. With every step, it’s as though my mind is telling me that I am doing something wrong because it’s so abnormal to “walk” on this leg.

The first step is the most difficult as I have to talk to myself in my head and will my leg to move. I am sure with time and practice, it will become easier. Eventually, I hope my leg will function normally, or much better.

Hard work pays off my friends. You have to put the work in if you want to reach the finish line or anything close to the finish line. And.it.is.not.easy! I get it, I really get it. When you work for it and you see results – the feeling of pride – the triumph – it is truly indescribable! It also feels like – Freedom. Happiness. Peace. Achievement.

Even when your goal seems insurmountable, keep going. Never lose hope and never stop believing in yourself. When you reach milestones, it is amazing!

Three years is a long time to deal with a medical journey like the one I have been on, but it is worth it to fight the good fight. On the days where I doubted my strength and confidence,  my soul never wavered. Your soul knows the answer. When you quiet your mind and listen to your soul, you will find the strength you need to power through.

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I have a long way to go to reach my finish line but I can promise you this – even on my darkest days, I will search for the light to lead the path so I can continue on.

My wish for you is the same. May you listen to your soul and find the light you need to keep going. You can and will get there!

Until next time, be well and go out and do a random act of kindness.

Jewels

 

Reality check

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Hello friends!

Sometimes you need a reality check to focus and regain perspective. More on this in a bit.

Dislocating my hip really rattled me and I have been in a constant state of anxiety and fear. Fear of something else happening. Fear of the unknown. It is exhausting! I cry at the drop of a hat and have a difficult time sleeping.

Two weeks ago at PT, I walked for the first time in over THREE YEARS without my crutches! I was pushing a cart for support, but I did it! It was ah-mazing! Such a weird feeling to fully bear weight on my damaged leg. When my OT stood me in front of the cart and took away my crutches, I said, “Okay, now what do I do?” We all know the response was, “walk!” Easier said than done. How do toddlers make it look so easy? My leg didn’t want to move at first so I had to will it to move. Walking down that hallway without my handy-dandy leg sticks felt fantastic.

The next day when my nurse came and we took down the wrapping on my leg and foot, there was a little blood. Immediately I got nervous and thought, “here we go again.” Over the next two days, there was more blood and some drainage. We took pictures and sent them off to the nurse practitioner that I have become friends with so she could share with my surgeon. (One of the MANY benefits of having this beautiful soul in my life.)

I was off to my local wound center the next day so they could determine what was going on. Thankfully it is only a minor issue and we are hopeful it will heal. Each time something  like this happens, I make myself sick with worry and panic.

My doctor and I have discussed the possibility that I am exhibiting signs of PTSD. This never occurred to me but makes sense. It’s been a long road and perhaps things have finally caught up with me. It’s not to say that I can’t cope with situations, rather, I have been through a traumatic experience and over time, this anxiety and fear has crept in.

When I had a follow-up appointment with my surgeon, I asked why I can’t get to the finish line without setbacks. I just don’t understand why I have these milestone moments and the other shoe always has to drop. He said that it is an unrealistic expectation to think there won’t be setbacks. Again, I asked, why?? He explained that I am doing things (like fully bearing weight) that I haven’t done in years and of course there may be setbacks.

At first, I was thinking, “what a jackass!” He hasn’t walked in my shoes or had to live through these last three years as I have. But you know what, friends? The more I thought about what he said, the more I realized that he is absolutely right.

I haven’t walked on this leg in over three years. The skin on my foot is fragile. With each new goal I reach and the more weight I bear on this leg, the greater the opportunity for setbacks.

The conversation with my surgeon was a reality check. It reminded me that I just need to breathe. Let things happen as they will. I am making progress. Life is not always rainbows and butterflies, but life is moving forward. It may be slower than I would like and it may be filled with setbacks, but I need to remember how far I have come.

So I am going to work on easing my fears and anxiety. I am going to continue to work hard at PT and work on regaining my confidence. Things happen, folks, and you just have to roll with the punches.

If you are struggling with things in your life, I wish you well. I wish you peace. Fear and anxiety can eat away at you and I don’t wish that on anyone. Stay strong and know you are not alone.

Until next time, be well and go out and do a random act of kindness.

Jewels