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

 

 

 

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Small moments of panic

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I can be having a perfectly fine day, and then these small moments of panic set in. Moments where I wonder if my life will ever be the same again. Moments of wondering when the healing will commence and the pain will fade.

Wounds hurt and the degree of pain fluctuates. This surgery was painful. It seems as though with each surgery, anesthesia lingers longer in my system and it takes me a while to get my energy and strength back.

Wednesday was two weeks post-op and usually I feel a whole lot better than I do. While I know this was a huge surgery, I really just want to be on the road to recovery. Throughout the day, I get these intense shooting pains in my leg and let me tell you, they hurt like all get out! As a natural impulse, I say out loud, “OW! OW! OW!” Yeah, that makes it all better!

I finished my first full week of hyperbaric oxygen chamber therapy and so far so good! No issues this time which I am grateful for. Each morning when I get inside the tank, I say a silent prayer that it heals my incision.

The doctor at hyperbaric sees me every morning before my treatment begins and always reminds me what an ordeal I have been through and how he hopes this incision doesn’t get infected because that could be catastrophic. I know he means well, but I am fully aware of potential complications and choose not to focus on them. I just can’t.

Even though I am exhausted to my core, I have to believe that each new day will bring peace and healing.

I sometimes daydream about having a girls weekend in Newport. We are all eating, drinking and having a great time. I look at my daughter and best girl friends, and I say, “those three years were difficult but I survived them and look at us now!”

My daughter and granddaughter are coming to visit in less than two weeks and that will be the best medicine. They make my heart smile and life is better when they are with me.

Little by little. Day by day. It will get better.

Life is tough, but you know what? I am tougher!

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

Jewels

When things don’t go as planned…

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Greetings, friends!

We had been waiting for my insurance to approve rehab – don’t even get me started on this because it is ridiculous that my insurance company would have any doubt that I need inpatient rehab. HELLO, I haven’t walked on this leg in TWO YEARS and FIVE MONTHS! Seriously?!

I digress…

It may have been a blessing that I was still in the hospital because things were not going according to plan. Physical therapy was going well – I have been weight-bearing! Say what?! (Which by the way, is such an odd feeling on this leg!)

Tuesday, after PT, there was some discharge from the wound site and fluid is present there.  My leg suffered extensive damage from the radiation I had many years ago, and as a result, the skin on that leg isn’t what it should/needs to be. It is a very sensitive area… to say the least.

So now the plan is to stop PT and I went home on Wednesday. I need to let the incision heal and start hyperbaric oxygen chamber therapy again. Once the incision heals, I will then be able to go back to PT and work on walking again.

Who would have ever thought that I would be doing hyperbaric oxygen therapy again? At least this time I know what to expect and I get to see the awesome safety director, Connor, who administers the therapy to me. Connor is a kind soul who really cares about his patients, so I know I will be in great hands. He’s responsible for getting me hooked on the Bourne movies! (Hopefully there are new movies for me to watch!)

Hyperbaric provided such healing on my foot, that I am hopeful it will help with this incision. After my evaluation at hyperbaric yesterday, I had an ultrasound done to ensure there wasn’t a hematoma where the incision is leaking. No hematoma! It seems to be just fluid.

This may be a set back of sorts, but I am determined to stay motivated in my recovery! We can never give up! I will get to where I need to be. It may take a little longer, but I am OK with this.

Until next time, be well and go out and do a random act of kindness. Kindness is free people. For reals.

Jewels

Apparently, I am quite the talker under anesthesia!

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Imagine this – surgery goes well and I am wheeled to the PACU, coming out of anesthesia. The nurse asks how I am feeling. Of course I proceed to tell her and every single person in the PACU how much I love and miss my daughter. I go on to say that she is my best friend. Over and over again.

Nothing awkward about that, right?

I mean, sure, the nurse was probably more worried about how my leg was feeling having just been ripped open, but, why talk about that?!

Julie arrives on scene (think of this like a movie set – such drama) and I start crying, big tears – BIG tears, while I tell her the same thing. I keep repeating (as I am crying) that I love her so much and she is my best friend. Gilmore Girls style. I keep saying how much I miss her and Olivia.

She is sweet as can be and tells me she loves me too. They tell her she needs to go back to the waiting room and I start saying that I don’t feel safe and too many people are talking about my surgery. Okay. I have had 21 surgeries here – how can I NOT feel safe?!

My amazing friend who is a nurse practitioner comes in to see how I am doing so of course I proceed to tell her how much I love her and that I am so grateful she is my friend. I also tell her I don’t feel safe. Being the kind soul that she is, she reassured me that I am safe and my friends are all here to care for me.

My Orthopedic surgeon who just fixed my hip and leg (a huge surgery she just preformed) comes in and I ask her if she wants to be my best friend. She is pretty awesome, so why not?! OMG!

Apparently I demand that the nurse page my plastic surgeon, (who was just with me in surgery and pieced my skin back together) because why wouldn’t I? He gets there and I ask him why can’t we go out for a beer and I tell him he eats too much candy. Everybody does this I am sure!

OMG please make me stop! Please make me stop talking!

This all seems really normal, right??!!!

I hear all of this from a PACU nurse, to make things worse. She wanted to check on me and to let me know how funny I was. OH.MY.GAWD. Funny??

The last few surgeries, anesthesia has been lingering with me and this time, well, who the heck knows what happened but clearly I am a talker.

For two nights in a row before surgery, I had these weird dreams where I was in heaven looking down at one of my surgeons as he was receiving an award for his work. In my dream, there were a lot of pink clouds everywhere. When I was trying to wake up from anesthesia, I don’t remember actually seeing or talking to the above mentioned folks, but I remember that I was fighting to get through the pink clouds.

This surgery weighed heavily on my mind and I was terrified of it but I knew I needed it. I think maybe I was dreaming about some interesting things and was just scared. That sounds logical. I will go with that!

The surgery went well. They gave me a new hip and joint and replaced more than half of my femur. I now have my height back. My orthopedic surgeon said my plastic surgeon moved a few things around and my “butt” looks really good now. Seriously, that is what she said! Here’s my question – did he make my “butt” look good on both sides?! If not, he and I may need to chat. Maybe over a beer! LOL

I have pressure sores on my foot from the brace I started using for weight-bearing which isn’t good so we will have to watch that. I pray nothing comes from this.

I have fevers at night and we don’t know why.

PT is HARD. I keep telling my leg, knee, and foot to move, but there is very little movement. Some is better than none! Things need to be reconditioned and it won’t happen over night. I need to be kind to myself and know that it will happen!

The road will be long but that’s OK. I was terrified going into this surgery and I am glad it is behind me. No let’s get this rehab done!

Rory, thank you for being the most amazing daughter. I am sure it wasn’t easy for you to see me in pain, (or acting so bizarre) and in the hospital – again. You are the bravest person I know and I am blessed to have you as my daughter. Thank you for taking care of me. Hopefully, lucky number 21 will be the last surgery. I know it was hard for you to leave, but Livy needs her Momma.

Patty and Brad, thank you for rearraning your life to take care of Olivia so Julie could be with me. I needed her for this one.

As per usual, I have met new amazing nurses during this stay. Thank you Maria on Reisman 12 for taking such great care of me! I feel as though I have a new friend.  Kristen, you made my stay very comfortable! Thank you!

Caroline Torney – Reisman 12 is lucky to have you. You were the first nurse I had when I initially broke my leg… I knew back then that if everyone was as kind as you that I would always be in good hands. What a beautiful soul you are. Thank you for all that you do!

Dr. Guzman, thank you for visiting even though I wasn’t on your service. You are one of a kind.

Serena, what can I say? Thank you for holding my hand while they tried to get the IV’s in, for being there when I woke up, and for being the friend everyone wishes they have in life but few are lucky enough to actually have.

Kenny Lee – my sweet friend, you constantly keep me laughing. You stand tall in that Starbucks line! Thank you for the visits, ice cream, and your friendship. It is always great seeing your face! Love you the most! Boom!

Magen and Tiffany – you ladies are so sweet! Thank you for visiting and making sure I was being taken care of. Each and every hospital stay, Magen has visited and she no longer works at the hospital. Touches my heart!

My ah-mazing surgeons, Dr. Anderson and Dr. Iorio – THANK YOU for fixing me and never giving up hope. This journey has been long but I have always been under the best care. Blessed to have you both on my team. Ignore my “pleas” while under anesthesia!

Another highlight – one of the “Dream Team” residents, Bill, was the Chief Resident and I was under his care!! Thank you for being a great person, Bill. You are going to do great things in your career!

Thank you to all who have called, texted, and reached out to check on me. I sincerely appreciate your kindness.

I think surgeons and nurses should write a book about the stuff people say as they are coming out of anesthesia. It would be interesting! My oh my…

Will keep you posted on my progress.

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

Jewels

Boston, let’s do this… One last time.

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Boston. For over two years, I have been going back and forth to this city. A city rich with the kindest people and the most talented surgeons and nurses.

Tomorrow, I will head back to Boston for my 21st surgery. The big one. I am nervous, anxious and hopeful. This surgery has to be a success. I mean, after all we’ve been through, it would be cruel if it wasn’t. Right?!

I don’t know when I will be up for blogging, so my daughter started a FaceBook page that she will update. If you would like to know how the surgery went and how I am progressing, please follow this page on FaceBook – JulieSchuder’sJourney.

So… Boston… Let’s do this, one last time. One last surgery in this journey.

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

Jewels