You find the strength!

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Keep going. Two simple words with so much meaning.

I had my follow-up appointment with my orthopedic surgeon and the x-rays looked fine. The hip is still in place! That’s the good news. The disappointing and discouraging news is that I will be discharged from physical therapy as I am limited in what I can do while in this abduction brace.

My physical therapy is now limited to weight-bearing, ankle pumps, standing at a counter while shifting my weight and isometric exercises. Isometric exercises consist of squeezing and holding the muscles in my leg. All are things that I can do on my own without the need of a physical therapist with me. The hope is that once the muscle forms around the hip that I will be able to return to physical therapy.

When that will be, we don’t know at this point.

It would be easy to lose focus and give up but that is simply not how I do things. You find the strength when you need it the most. You don’t quit, you keep going! This setback could depress anyone if you let it, but rather than feeling sorry for myself, I decided to look at it for what it is. A setback. A setback that will lead to a greater comeback. I mean, that is what happens, right? You are going along, fighting the good fight and when a setback occurs, you come back stronger because it lights a fire in you that says, KEEP GOING.

Sometimes we will never know why things happen but we don’t always need to know the why. It won’t change things and you can’t turn the clock back–no matter how much we wish we could at times. I cried the tears I needed to and now I move forward.

So I will end as I started. Whatever is happening in your world, just keep going! You can do it and so can I.

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

Jewels

 

Wasn’t I just talking about setbacks?!

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Oh friends, sometimes I wonder what the heck?!

Here I was, minding my own business, working so hard at rehab, admiring the rainbows and butterflies when WHAM! I dislocate my hip! YES – my new hip.

After having great appointments with my orthopedic and vascular surgeons on Monday, I left Boston that day feeling so grateful and blessed that things were really moving along. The x-rays looked great and the prosthesis had cemented nicely. For the first time in 2.5 years, vascular said I didn’t need to be seen again for six months. YAY!! Life.is.good!

The very next day, I went to PT and we did the exact same exercises we do each treatment and during the “leg raises” something happened. There was a “pop” and it didn’t feel right. I wasn’t able to apply weight on the leg. My PT was horrified (not her fault at all) and another therapist came over and we thought the hip was okay. Was it a tear in the scar tissue? Muscular?

I went home, took Tylenol,and spoke with my doctor’s office. I decided that if things weren’t better in the morning, I would go in for x-rays. After having a restless night, off to Boston we went.

The x-rays showed a significant change from when I was there on Monday, and my hip was indeed dislocated. Thankfully, my orthopedic surgeon was already in the OR and was able to get me in relatively quickly. Under general anesthesia, they were able to pop my hip back in place.

Now I am wearing a hip abduction brace to provide support and help keep the hip-joint stable. The brace is designed to limit my motion and allow healing to take place. I must wear this brace while awake and it can only be removed to shower and sleep. While sleeping, I have the abduction wedge (not sure what the actual name is) that straps your legs to it so I don’t dislocate the hip again. It makes me feel trapped!! If this is what I need then I shall use it, but I will silently curse the darn thing!!!

Since I dislocated my hip, I am now high risk for it to happen again. This scares me to think of that happening again.

I can’t return to rehab until I see my surgeon again–which will be in less than two weeks. This is another setback and it is so frustrating!. There was progress being made and I truly felt as though things were on the right track.

Hopefully we can turn this bus around soon and I can continue on the path to full recovery.  In my last post, ironically, I mentioned setbacks and how you just have to keep going. It’s true. So that is exactly what I will do. One day at a time.

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

Jewels

 

 

 

Reaching goals & all that jazz…

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Isn’t it a wonderful feeling when you reach a goal?

I know many people made resolutions in the new year and set goals for the year. That is awesome! Goals are both wonderful and frustrating. When you set a goal, it gives you something to work towards and often times lights the fire under you to say, hey, I can do this! Am I right?

Goals are a personal desire, either for what we want to accomplish, or perhaps overcome. Only you can decide which goal will lead to your success – as YOU define it. Others may think they know what the goal(s) should be, however, YOU are the one who needs to fulfill the goal, so make it what you want! Who can stop you?

The other side of that coin is the frustration that comes when you don’t reach the goal fast enough, or you have setbacks. I know all about setbacks, my friends. For so long, it seemed as though I would take 3 steps forward, only to then take 5 steps backwards. That feeling of, UGH, are you serious right now?, would hit me like a physical punch to the stomach.

I was in such a hurry to have my foot heal so we could move ahead with the big surgery that I would set unrealistic goals. It wasn’t because they were unobtainable. I just overlooked the fact that the body takes time to heal, and that sometimes things happen during that process which have nothing to do with achieving my goals (infection, failed surgery, etc.). Failing to recognize that left me feeling so defeated.

So I had a conversation with one of my surgeons, and I told him that we must stop putting a timeframe on when the big surgery would happen. Of course, I was the one putting timeframes on it, but I had to realize that by doing so, I wasn’t helping the process.

The surgery finally arrived and y’all know how awesome that turned out! YAY!

Fast forward to starting physical therapy. I decided that I would have an open mind and NOT set a hard and fast goal about when I would start walking again. Instead, I decided to let the process work and to remain patient. Celebrate the small steps that will ultimately get me to my goal, is the approach I took.

The first time I got on the NuStep bike, it didn’t even register my steps as I couldn’t bend my knee enough to make that happen. So each time I sat down at that bike, I told myself, I can do this. There will come a day when it will register my steps. I don’t know when that will be, but if I continue to do my exercises and believe in the process, it will happen. The goal is to have this darn bike register my steps.

Guess what folks? It DID happen!! This week at PT, for the first time, the bike registered my steps!!! I literally could not believe my eyes and probably looked and sounded like an idiot, because I was so happy that I couldn’t contain my excitement! (By the by, I can’t believe I only burned 13 calories when it seemed like I was working so hard!)

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After weeks of getting on that bike and not seeing anything happen, one day it did. My heart is happy. My spirit is alive. Small steps. Progress. Reaching goals. Getting strong. Believing that I can and will do this.

Here’s the thing, my friends. Never give up. EVER. Even when you are having the crappiest of days and you are frustrated. Giving up is easy. Fighting to stay in the game is hard but in the end is worth it!

Keep fighting the good fight! You can do this. We can do this. Be patient and work your butt off!

What kind of goals have you set?

Until next time, go out and do a random act of kindness. Today. Tomorrow. Whenever. Just do it!

Jewels

 

 

2017 is going to be a fantastic year!

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Happy New Year, friends!

As we usher in the new year, I’d like to reflect on 2016 and all that I was able to accomplish.

The big surgery is behind me, and I am making great progress! Physical therapy, while slow and difficult, is also incredibly rewarding. I typically have PT three times a week and I am able to see results as I increase my exercises, learn new things, and bear additional weight on my leg. Awesome sauce!

Dare I say, I am feeling like my old self more and more each day! I still get tired, especially after PT, but not nearly as much as before. There are some sleepless nights, but they are few and far between.

I will begin using a lymphedema pump and I will start seeing a lymphedema specialist in the next several weeks. The goal is to get this swelling in my leg under control. My leg is heavy and my PT gets a work out in during my exercises when she is lifting my leg!

Between PT and the lymphedema therapy, I hope to see improvement and continue to move forward. I hope that 2017 will be my last year of paying these crazy high deductibles! This is going to be the year – my year, if you will, where I get my life back. I can feel it in every fiber of my being.

I don’t make resolutions, as I try to live my best life every day. I do my best to enjoy and appreciate my many blessings.

Happy New Year to you! May 2017 be a year filled with good health, time spent with the people who mean the most to you, exciting adventures and peace and love in your heart.

Do you make resolutions? 

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

Jewels

Happy Holidays

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Greetings, friends!

I love this time of year! Winter is my favorite season and Christmas is my favorite holiday. Some of you may be shaking your head, thinking, really? Winter is your favorite season?!

It’s true. I absolutely love it. Having grown up in upstate New York, winter was a magical time of the year. Sledding, skiing, drinking hot cocoa … love, love, love!

The holidays can also be stressful, especially if you are sick, injured or in the hospital. I have recently been asked by folks who are kind enough to follow my blog, how I managed to get through the holidays when I wasn’t doing so well.

The great thing about having a blog is that you try to reach people and if you are successful, you will inspire someone or provide a little hope. So let me try to do just that.

Here’s what I know for sure … the holidays aren’t about the presents, rather, it’s about the presence of family and loved ones. It’s a time to get together and celebrate the year gone by and look forward to the new year that will usher in.

Two years ago at Christmastime, I was attached to a PICC line where I had to give myself infusions every 6 hours. This meant that the medicine had to be taken out of the refrigerator an hour before the infusion. I was exhausted as I wasn’t getting quality sleep.  I was also attached to a wound vac on my foot which at times would sound an alarm in the middle of the night, always when I had fallen into a deep sleep. Talk about being frustrated!

Besides the PICC line and wound vac, I was also on blood thinners which left me bruised. I was always cold. I had lost a lot of weight from my surgeries, so that didn’t help the situation, either. Literally, it was a miserable and exhausting time.

Even though I wasn’t feeling well and hardly festive, I always tried to put on a happy face. I always reminded myself that this too shall pass, and I tried to find the silver linings. That year, I didn’t have the energy to put the tree up or buy lots of presents, two things that I love to do! Trimming the tree while listening to Christmas carols is so much fun! Wrapping presents while drinking hot cocoa is also something I love!

You know what happened that year? My family and friends made that Christmas extra special for me. They put my tree up while I sat on the couch having an infusion and we listened to music and I “danced” on the couch.

Secret Santa’s were constantly surprising me by having food delivered as well as gifts. Beautiful flowers and wreaths appeared. My daughter, son-in-law, and granddaughter came home and made that Christmas so special. The beautiful people in my life lifted my spirits.

If you are like me and you like to do things yourself, shop for others, and be the one giving instead of receiving, let it go. For this one year, let people help you. The reality is that they want to help you and it makes them feel needed. Trust me on this. If you try to push yourself, you may feel worse, and who wants that?!

If you are in the hospital, (I know that stinks), be kind to the nurses. They are there, away from their own families so they can care for you. Hopefully you will be in better health next year.

 I can say with certainty, the holiday spirit will be renewed and you will truly enjoy and savor the hustle and bustle of the chaotic holiday time!

For now, rest up and get better. Know that better days are coming and you will get through your journey. Keep the faith my sweet friends.

Wishing you and yours, a holiday filled with peace and hope.

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Until next time, I hope you are showered with random acts of kindness!

Jewels

 

32 years cancer free !!!

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When I was a teenager, I started having pain in my right leg. At first I didn’t even realize how often it bothered me until my friend, Karen, asked me one day, “why do you always rub your leg?” We were sitting on the floor in my bedroom, doing homework after school as we did practically every day. I responded simply by saying, “my leg hurts.” Karen told me that I had been rubbing my leg every day for a while!

This may be hard for some people to believe, but before I got sick, I was an extremely shy and quiet person and didn’t talk that much. So while my leg was bothering me, it was completely normal for me not to complain or say anything about it.

At first the pain would only last for a few days, and it was something I could tolerate. As time went on, the pain started lasting longer and was becoming a constant. I finally said something to my parents and off to the doctor I went.

After seeing my pediatrician, it was determined to be growing pains. I was 13 years old at the time and very athletic as I ran track, played basketball and soccer, so that made sense, I guess. The Mayo Clinic states, “Growing pains are often described as an ache or throb in the legs – often in the front of the thighs, the calves or behind the knees.” My pain was in my femur, so my family and I thought this was the case and it was something I would outgrow.

About six months later, the pain was far worse and I was being sent home from school because it was too difficult to focus. Back to the doctor I went and I started having tests done like x-rays and blood work to see what was going on. The tests were coming back fine and not indicating that there was a concern. I was told to stop playing sports and to stop running, which was a passion of mine.

Six months after this, I started limping because my leg hurt so much. There was a day where I was curled up in a ball on the couch, crying, because I was in so much pain. My stepfather had pulled some ligaments around this time and said he was going to take me to his orthopedic doctor, just to see what his thoughts were.

It was a hot Friday afternoon in August when I saw this doctor, and I was wearing shorts. I was sitting on the table in the doctor’s office and the first question he asked was, “how long has this bump been on your leg?”I looked at my leg and was surprised to see this bump as I didn’t recall having it there that morning when I showered.

I was sent to Boston Children’s Hospital that Sunday evening so I could have a biopsy done in the morning. When I got to my room, my roommate was a girl named Amy. She had a biopsy done as well and we stayed up talking all night. I was very naive – I thought I had pulled ligaments like my stepfather and had no idea what a biopsy was, let alone what it implied.

Amy explained what a biopsy was and how I had a tumor in my leg. WHAT? I will never forget how she said that I want the results to be benign and not malignant. This was very important information! She was going home the next day and I wouldn’t see her after I got back from the biopsy so we exchanged phone numbers and promised to keep in touch.

A few days after my biopsy, my parents and I were taken into a room where we told that I had a malignant tumor and I had Ewing’s Sarcoma bone cancer. I don’t remember hearing anything after that as I kept replaying the conversation with Amy in my head. My mother was crying hysterically and I sat there, stunned. I was 14 years old and had cancer. A rare form of bone cancer!

Things happened pretty quickly after that. I started chemo and was so sick! I practically lived in the hospital. When I went home, I rarely made it two days before I spiked a fever and was back in the hospital. My hair fell out; I had no appetite; I was freezing all of the time; and when I was at home, my parents couldn’t cook in the house as the smells made me vomit.

After having only 4 cycles of chemo, I made the decision to stop. At first my mother begged me not to but ultimately she said the decision was mine. I just felt as though I wanted to live the rest of my days – however many – in peace and not in sickness. This wasn’t the end though, as I had radiation treatments to get through. I agreed to complete those.

My stepfather at the time was a Teamster, and they had a van that would pick me up every weekday to take me on the three-hour round trip to Boston for treatment (which was literally a one minute zap), and then it was back home I went. Because I had stopped chemo, I was given 2.5 additional weeks of radiation.

I finished my radiation treatments and my doctors were not happy with my decision to not pursue further chemotherapy. The outlook was bleak. Ewing’s Sarcoma cancer is a rare form of bone cancer and the percentages of survival or saving the limb were low back in those days.

As silly as it sounds, I knew in my heart that I would survive. There were many deals made with the Big Guy upstairs. I was and have always been very stubborn! My oncologist calls me a pain in the ass. Literally.

I always said that I was going to beat cancer! There was no question in my mind.

Here I am, 32 years later. Cancer free.

As we know, the “radical” radiation I had caused extensive damage to my leg, but I went 30 years on this damaged leg before my bone broke and this journey started. In my heart, I know this too shall pass. I will walk again, get my life back and thrive.

While I met a lot of people during my hospital stays as a teenager, Amy is the only person I kept in contact with. (I told you, I was shy!) I am happy to report that Amy is like family to me and she has been a wonderful, supportive friend. I am blessed to have her in my life.

We never know what life has in store for us, but one thing I do know – never give up, even when the battle seems insurmountable. The human spirit is remarkable and will carry you through the darkest of days.

32 years cancer free!!! This girl is very blessed and knows it.

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

Jewels

*Here is a picture of me after treatments and still bald. My parents bought a very expensive wig but it itched too much so I always wore this hat. The other picture is when my hair first grew back.

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The journey changes you, this much I know.

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”  – Haruki Murakami

My daughter sent this to me during my very long medical journey and when I read it, I completely understood it. The journey, the storm – call it what you will – changes you.

I have always been a very strong, positive person. When you are strong for so long, at some point, the tears need to escape. That’s where I was finding myself these last few weeks. Not in a, “I am losing it and need to see a therapist” kind of way.

Rather, it’s little moments that creep in when I am laying in bed at night trying to fall asleep and my mind starts to wander. For some reason, I replay the events from these last few years in my head. All of the moments – the good, the bad, and the ugly – come to mind … like I am watching an old movie on the big screen.

Tears fall and I wonder how I survived. I mean, I didn’t lose a loved one or anything like that, but man, these were tough years!

Having things go wrong time after time is exhausting. At some point, the stress of it all comes crashing down and you need to exhale the past and embrace the now. I am working on how to keep the doubt at bay and not worry when I have an ache or pain. My gut instincts have been spot on, so that is what I need to trust.

What I will say is that when I reflect on this time in my life, I have far more happy, thankful and grateful moments than anything else. The people who have come into my life are a blessing. My family and friends who showed such compassion have touched my heart in a very big way.

As the stress starts to dissipate, and the huge burden seems to get smaller, I realize that it’s okay to release the emotions that have been bottled up for so long.

There are moments when I reach a goal in PT and I just start crying.  Happy tears, not sad or ugly ones. Each new goal attained feels like a huge victory, and the heaviness of the journey starts to lessen a bit.

I have never really been an overly emotional person. In my opinion, I hold it together pretty well through life’s ups and downs. When you have been on an emotional rollercoaster for so long, it’s only natural to want to get off the ride. The feeling of always waiting for the other shoe to drop is tiring and a complete waste of time, yet it’s there like a bad dream.

Just this week I thought something was wrong with my foot and I thought, “oh boy, here-we-go-again!” I found myself getting so disappointed and annoyed because I have been doing so well in PT, making great strides, and here I was thinking the other shoe was dropping. Of course, I headed to Boston to see my surgeon, and all is fine!

It will be fantastic when I can finally get to a place where the worry isn’t in the back of my mind. When that will happen, I have no idea, but I am confident it will come!

The journey … it changes you. I am not the same person I was before breaking my leg. There may be moments of doubt or concern; wondering; waiting for something to happen, but I will continue to move forward. I will always remind myself of how far I have come and how far I will go to reach my goals.

This journey has reminded me of how fortunate I am to have survived Ewing’s Sarcoma cancer as a teenager and how strong and resilient I truly am.

Resilient. That’s what I am. This awareness-this knowing-is a beautiful thing.

What has your journey taught you?

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

Jewels

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