Making an impact

Greetings, friends.

I hope this post finds you well. Here I am, at the end of my undergraduate degree program at Bay Path University (www.baypath.edu). It is hard to believe that in less than a week I will have completed my degree and will have a few months off before starting my Master’s Nonprofit Management and Philanthropy. Well, that is, if I am accepted! Fingers crossed.

So, this last class is my Capstone on Leadership in Practice and I based my project on my blog. Why you may ask? Great question! The reason I started this blog was because I have undergone a serious and life changing medical journey and have been blessed with the great care I have received, and the wonderful friendships I have made during an extremely painful time. Literally and figuratively – in every imaginable way!

This blog is intended to reach out and speak to you – the readers, fellow bloggers, strangers, and new friends. It is meant to say, I have been where you are and I have lived to tell my story so I could offer a few words of encouragement and provide even the tiniest of hope.

It is for cancer survivors, such that I am, to say – I know, chemo SUCKS, radiation SUCKS and living through cancer can be the hardest thing we do, but I am here to tell you – I lived through Ewing’s Sarcoma bone cancer and you can live through your cancer.

Ewing’s Sarcoma cancer is a rare bone cancer and often times involves amputation. (https://www.cancer.gov/types/bone/patient/ewing-treatment-pdq) While I was lucky enough to keep my cancer filled leg, the radical radiation I had created significant damage. So here I was, 30 years later, walking down stairs and that same leg broke. PAINFUL to say the least! It was terrifying seeing the X-rays and how the break looked.

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Yes, this was the break. My poor leg.

March 22, 2014 started off as a normal day. It was an extremely cold day, but I love the cold! Winter is my favorite season and the cold never bothered me, except my leg often ached as I have arthritis in this leg, so the cold, rain, etc., always seemed to make my leg a little stiff and achy. I went to breakfast with a friend and then picked my Mom up for our usual Saturday afternoon of running errands, playing cards/games, and having lunch or dinner together. After running our usual errands, my Mom came back to my house but I told her my leg was really bothering me (thinking it was from the cold) and I asked her if it would be okay to skip games and lunch. Of course she didn’t mind and as we were leaving so I could take her home, when I was walking down a stair, I heard a very loud pop or snap and my leg went limp.

It was such a bizarre feeling – I was in excruciating pain, yet my leg felt as though it wasn’t attached to my body. It sort of “hung” limply. I asked my Mom to take off my sneaker and the orthopedic brace I wore for my drop foot (https://www.mayoclinic.org/diseases-conditions/foot-drop/symptoms-causes/syc-20372628) and I tried to stand up. Easier said than done. While I was able to stand up (feeling sick to my stomach) I couldn’t apply any pressure to my leg. I felt my leg to see if I could feel anything protruding, but I couldn’t.

My Mom felt sick to her stomach and had to go inside. So there I was, sitting on the second stair, needing to get back inside so I could lay down on the kitchen floor at the very least. I managed to lift myself and my leg up the two stairs and I dragged myself into the house. Here, I laid down on the kitchen floor as I was feeling very “shaky” and started calling my friends – anyone who could bring me to the hospital.

See, here’s the thing – when I had cancer, I was constantly being transported from Springfield, MA to Boston, MA (90 minutes with traffic flowing) via an ambulance, so the idea of needing to call an ambulance terrified me because the memories bring back a dark period in my life.

As I called one friend after another, with no answer, it dawned on me that it was race day! Most of my friends are runners and it was the Holyoke St. Patrick’s Day road race. OH.MY.GAWD. How was I going to get to the hospital?? Thankfully, I called my friend who lives just over the Connecticut border and she was home and answered the phone!

I think when she heard me calmly pronounce, Hey Deb, so, I think I just broke my leg or fractured my hip and I need to go to the ER … it frightened her a bit, but man, she hopped right in her car and 20 minutes later, it was Diva Deb to the rescue! Deb and my Mom were able to get me downstairs and into her car in record time and off we went to my local hospital.

Mistake #1. My local hospital’s emergency room is used as a primary care facility. I am not kidding you – people apparently go there for the common cold. This particular weekend, the ER was filled with very interesting people. People who had too much to drink at the road race and could hardly stand; a young girl who would randomly shout crazy things out; a middle-aged man who had a … cold? You name it, they were there.

Now, to be honest, I certainly didn’t do myself any favors when Debbie (friend described above) wheeled me in (she found a wheelchair somewhere) and I was cool as a cucumber, calm as can be, and I say to the intake woman, Hi, I either broke my leg or fractured my hip walking down stairs and I need X-rays, please. Her response was, would you like pain medication? See, here’s another thing – I don’t like taking pain medication. I know, it’s weird but I am type A personality and I like to feel as though I am in control of situations. Taking pain meds would make me feel out of it, so I politely responded, No thank you, I have Tylenol in my handbag. If I can please have water, that would be great. 

So … a very long story short, after sitting in the ER for 8-9 HOURS, (I went into shock around hour 6) it was my turn to be seen and have X-rays taken. I will never forget this very nice, young, and new X-ray technician who was obviously training. When she and her trainer were looking at my X-rays, I heard her say, Oh my gawd, is that the break? That is so bad! I yelled out – Is it my femur? Did I break my leg? The trainer and the newbie were mortified and the trainer, who was very sweet, said, I’m sorry, the radiologists will have to speak with you about this. Meanwhile, the new girl is standing behind her, shaking her head YES.

Off to the triage area I go where the resident on duty (who could pass for about 15) comes to speak with me to tell me the bad news. He puts my X-rays up and says, So I have never seen a break this bad and this is above my pay grade. WHAT? Are you kidding me? This is who they sent to explain what actually happened and what the fix is? You.must.be.joking.

Oh, I forgot to mention, that after about 6 hours, one of the friends I had originally called, Erin, returned my call and came to the hospital to relieve Deb who was gracious enough to have stayed so long. Erin, who is a physical therapist, is with me when Dr. I-need-some-serious-sensitivity-training is talking and saying that when “I fell” my leg broke, Erin gets rightfully annoyed and tells him to STOP saying I fell. She kindly explains as I have, that I was simply walking down stairs when my leg broke – I did NOT fall! Pay attention!

The time with this resident was a complete waste. He could barely answer our questions and off I went, hours later, to my room. At 3:45 AM. I got to the hospital around 1:30 PM. Exhausted and completely devastated, the anesthesiologist comes in shortly after, asking me to sign consent forms as surgery was scheduled for 8:00 AM. When I tell him that I need to speak with the surgeon before I have the surgery, off he goes to see his next patient.

I meet the trauma surgeon on call, Dr. Bennett Burns, who is AMAZING, and we discuss my prior history with Ewing’s Sarcoma and I ask him to consult with my doctor in Boston. Ironically, he knows my Boston surgeon as he refers complicated cases to my surgeon! An hour and a half later, Dr. Burns tells me that the ambulance is on its way to bring me to Boston as my case is extremely complicated and my surgeon in Boston prefers that I am cared for there.

The next 7 days were complicated as we first needed to determine if the break was from wear and tear on a fragile leg or if I had Radiation Induced Cancer which happens in your 30th year after having radiation. After having a biopsy, we discover the break happened simply from wear and tear on a badly radiated leg. My orthopedic surgeon put rods and screws in to fix the break and after several days I went home.

Things didn’t go as planned, as I developed pressure sores on my foot due to a blockage I had. This was one of many setbacks that occurred over the next three years! The blockage left blood flow to the foot at 0.18 which wasn’t good. Through the next two years, I had several vascular surgeries to clear the blockage; several angioplasties; and I had two stents put in my fragile leg. Through grafting surgeries and a free flap surgery, we were able to heal the foot.

During this time, a year after originally breaking my leg, the break failed to heal and I had a non-union of the fracture. My femur essentially collapsed, my femoral head crumbled and my hip fractured. The hardware (rods and screws) were removed and a cement spacer was put in to hold my hip and femur together – for over a year! Once the foot healed, we were able to replace the hip/joint and femur.

And this is really where the fun starts. After being non weight-bearing for a few years, I am tasked with learning to walk again. This has been a very long and slow process, however, I am currently down to one crutch and I can walk about 150 steps on my own without the use of any aides! I continue to work hard in physical therapy and expect to be able to drive, walk, and get back to my “normal” life soon. Hopefully this year!

I tell you this story so you know that regardless of what you may be going through, and we all go through things in life – you can do it! You have to be resilient in your pursuit of healing. Stay positive in the darkest of days and know that tomorrow is a new day that can bring endless possibilities.

Thank you for reading my post! Please feel free to follow me so you can get updates and share your stories with me. We are all in this together!

A big thank you to my mentor, Mitch, who was kind enough to answer all of my questions, and who, despite being on a book deadline, said yes to helping me! This my friends, is what kindness is all about – helping a stranger and making a difference! You are simply the best, Mitch!

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

Jewels

 

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Three years … seems like a lifetime.

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This part of my journey began three years ago. When I was walking down stairs, my leg broke. And, well, y’all know the rest of the story.

March 22, 2014 seems like a lifetime ago at times. Three years of hospital stays, surgeries, missing time with my family, not working, not driving … you get it. The other part of this journey has been meeting the most beautiful and kind souls. People who have become like family. My family and friends who have blessed me beyond measure.

I started this blog with the hope that I could inspire one single person who may be going though a life changing journey. It is intended to inspire, provide a little bit of hope, and spread kindness. So when people I don’t even know contact me to say, “thank you for your post, it made me feel a tiny bit better,” I realize that perhaps I was meant to go through this journey to somehow help others. Or maybe things just happen and there is no rhyme or reason, but I prefer to think that we can somehow connect by our trials and tribulations.

It is a heavy burden to carry when you feel as though you are going through something alone. It doesn’t matter what it is – we all need someone to lift our spirits. Someone who can identify with how we feel because we are going through something similar. Someone we can laugh with through the ridiculousness that can become overwhelming.

The world is a kinder place when you have someone to lean on. My hope is that you have that someone in your life. My hope is that no matter what obstacle is set before you, you know there are people you can count on to support you and say, “Let’s do this!” (Cough, cough … Serena) We all deserve that.

I started physical therapy (again) yesterday after dislocating my hip. While I don’t know the staff that well as I was only there for two months before the whole hip thing, these people cheer me on and provide hope that I will get to where I need to be. It is remarkable to find that you connect with people who genuinely wish for healing for you, and offer words of encouragement! PT kicked my butt yesterday! My knee only bends to 30 degrees now. It was at almost 60 degrees prior to the dislocation so that’s a bummer. Clearly, I have work to do.

Friends, this time it is physical therapy for-the-win! The last time was just practice. It will be interesting to see how I progress in PT with the hip abduction brace. Stay tuned to find out!

One thing that I have been reminded of throughout these last three years – we can’t move forward if we are looking back. The past has already happened; it is the present that we live in and the future that has potential. Let’s focus on that!

Until next time, go out and do what? A random act of kindness, of course!

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

Time – has a way of making things better, but where does the time go?

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Have you ever heard the song by Kenny Chesney, “Don’t Blink?”  Trust me friend, a hundred years goes faster than you think, so don’t blink…..

It may be a cliché, but seriously: time goes by in the blink of an eye. My granddaughter, Olivia, started pre-school this week. WHAT?! How did that happen?! Wasn’t she just learning how to walk? Sitting in my lap telling me “stories” about piggies?

The funny thing about time is that it also has a way of putting things into perspective. I’ve mentioned before that when I am going through something uncomfortable/difficult/stressful, I always tell myself that it is only a small amount of time and I can get through it!

After having more than half of my femur replaced, and then having the incision draining –  which forced a halt to my PT, sending me home instead of to rehab, I had several moments of “will I ever walk again and will this incision heal?

Some days seemed longer than others. I was worried by the amount of drainage, and the pain was intense. But as each day passed, I reminded myself: things will get better. I need to be kind to myself and realize that after 21 surgeries in less than 2 1/2 years, it will take a little time to start feeling better.

I survived Ewing’s Sarcoma Cancer and I will survive these tough days! It was 32 years ago on August 22nd that I was diagnosed with Ewing’s Sarcoma Cancer. THIRTY TWO YEARS! Talk about time passing! I have always been the type of person who tries to fully enjoy the moments and not rush my life away.

On August 22nd, I had my follow-up appointment with my orthopedic surgeon, Dr. Anderson.  (Remember, my “bestie” after anesteshia?) She was pleased that the drainage stopped and thinks the incision looks good. I will see my plastic surgeon, Dr. Iorio on August 29th, and hopefully he will be able to remove every other staple and be pleased with my progress. There is a reason they remove every other and not all of them at once, but I can’t explain it!

Dr. Iorio is an incredibly gifted and talented surgeon who truly invests in his patients. He is kind enough to explain things to you in a way that you can understand, without making you feel like an idiot! When anesthesia leaves me groggy for several days after surgery, he is kind enough to repeat the same information without being annoyed. My daughter was finally able to meet him when I had this last surgery and she is a fan! Julie thinks he’s the “bomb.”

One thing I respect most about Dr. Iorio is that he paints an entire picture.

When I say to him, “so how do you think things went?” He responds by saying, “things went fine but I worry about the incision healing and you have a long road ahead of you.” He’s just honest. I need that, and I am impressed with how he handles these conversations.

The road ahead of me is a long one and there are days where I wonder if I will walk again.

I recently reached out to this doctor I met during the beginning of my journey – Dr. Sarah Carlson, who is just such a kind soul. I can’t say the same about everyone. The vascular team was rounding one morning and this female Chief Resident was anything but kind. When I asked her questions, she was dismissive and turned around in her Ugg boots and left to see the next patient without even giving me the time of day.

Thankfully, Dr. Carlson stayed behind and said she would come back after rounds to answer my questions. I was so in awe of how nice she was. True to her word, she did come back and answered my questions. She stopped in a few more times during my stay. She has now moved to another facility for her fellowship and I am sure she is just as kind to the folks there.

I recently reached out to her to let her know how surgery went, and I asked her what her thoughts were about me walking again. I explained that once I am finished with hyperbaric, I will most likely only have outpatient PT a few times a week. That worries me.

It’s been 2 1/2 years since I walked on my leg…how will a few hours of PT each week get me walking again?!

Sarah said something that resonated with me. She said I don’t need a PT standing next to me to “do” PT. I can create a schedule of my own at home and work hard at learning to walk again. She said, “the key is having the self-discipline to work on my own.”

What a true statement! It may not be easy, but I am going to work hard to walk again and get my life back!

There are so many beautiful people in my life that I am grateful for!

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I don’t want to waste time worrying about the what if’s. Life goes by in the blink of an eye. This time next year, I just may be walking again! That will be a beautiful thing!

The small moments of panic I was having seem to be behind me. This is what I mean: each new day holds new possibilities. Make each day count!

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

Jewels