Eureka!

As I sat and watched, with awe, Vice President Biden’s summit speech on his vision of the cancer moonshot, I came alive and transformed… I felt empowered and validated. Oh the calamity of thoughts that went through my head. “By golly he’s got it!” Everyone has been there at some point, that delirium that accompanies figuring something out. “Eureka!” I thought. Mine hit all at once, and I have been reeling ever since that day of June 29th but my mind is settling to tell you a story. My friends, I am back, maybe not as often, but I will tell you I never left.

He sat across my stool afraid. He was bright eyed, sharp and thinking through the things I had discussed. “You are going to do what?” he asked, “Inject my sarcoma with a herpes virus?” I remained calm but my passion was bursting out of me because I was excited. This was my idea, an idea that has been brewing in my mind for the last 2 years, an idea that allowed me to use my knowledge to help someone, a clinical trial that I wrote. I don’t know how my patients do it; they find the wisdom, the courage, the generosity and open-mindedness to accept my words. Was it that I danced in front of him telling him about the science? Was it the cancer that inspired him to be creative? Was it his immense trust in me? It did not take him long to contemplate the proposal, to believe as he told me. Enter Subject 001.

Cancer, as VP Biden clearly remarked, is a threat the human race can unite to double the rate at which we make progress in trying to push and propagate the knowledge we have to solve its mysteries. As I reflect on this statement, the one person who comes to mind is subject 001- I get the equivalent feeling that we as humans were able to conquer space to get to the moon and back, I reflect on the day I put my patient on my trial, a trial that was unique in its rights, different and innovative. Subject 001 to me, is the first person on the moon. What a feeling!

Eureka! The day has come for us to find out that I am out of a job, that cancer has been cured, that the world is at peace, that we have overcome our fears and that we have won the war against despair. Yeah sure, we all dream. And maybe that is what makes us achieve our dreams; our hopes, our engagement and our efforts. Perhaps it’s a man standing up and saying, “What’s wrong? Why can’t we do this?” I sometimes recognize how hard it is for a General in the army to will his soldiers to go to battle. This is a war, an urgent need to develop cancer breakthroughs and a strong message for us to do things without submitting to bureaucracy, greed, and negative inertia.

“My patient is interested in joining this clinical trial” the bark of a General that does this daily. The coordinator picks up her task; she is as excited as I am. What drives people to work so hard behind the scenes to actualize a clinical trial still fascinates me. It is this ownership, this dedication that can turn the tables in this fight against this devastating disease… let’s not turn against each other, retard each other’s progress, allow politics and competition to stop us.

Don’t just sit there, do something! Don’t put it off for another day, don’t lean on reasons not to act, but rather seize the moment you are in and become part of the history-changing initiative, become a part of how we revolutionize cancer treatment.

Mo.

Waiting

 

Today’s post comes from guest Blogger, Fletcher Summa. Thanks, Fletcher, for sharing your story with us! 

 

 

I sat in the waiting room on February 8, 2013 in the Cancer Center preparing to tell Dr. Mo that I didn’t want to do this anymore. My treatment was entering the 11th month and my body was bloated and scarred and bore little resemblance to my pre-diagnosis self. I looked around the waiting room and I focused on what I wanted to say to Dr. Mo and settled in to wait for my name to be called. Waiting is something you become very good at as a cancer patient; my mom sat next to me lost in her usual game of Candy Crush Saga on her phone. This situation had been part of my life for almost a year: the two hour trip to Iowa City every other week, wait for a bed, get hooked up to chemo, stay for days, go home, feel awful, get better, then repeat. However, this time I could no longer go in and just face it the way I’ve done in the past.

The chemicals were really starting to take a toll on my body, especially my heart. The methotrexate I was scheduled to take had been cancelled due to my lab results. This meant that I would have only two rounds of treatment remaining—“only” two but it was dependent on the results of my heart scan. Regardless of the result, I planned to tell Dr. Mo that I was done with all treatment.

It all began when I was diagnosed with Osteosarcoma on March 21, 2012 and within weeks I began treatment, then on June 21, 2012, I underwent surgery. The surgeon removed the tumor and if the tumor was over 90% dead then I would have a shorter treatment plan; if it was below 90% then the treatment would be more intense. Yet because my heart scan results had not improved I was informed that I couldn’t receive further treatment without risking permanent damage. Though it doesn’t quite sound like it would be, this was indeed good news. This was the day that I waited almost a year for. “No more chemo.” And it was finally over.

Photo 1

I smiled when I heard this news and feelings of joy overwhelmed me. I could get on with my life and not deal with any more side effects. Aside from the doctor appointments every three months, I thought I never had to think about cancer again.

I was wrong.

What I didn’t take into account was just how much this experience had consumed my life. Living and surviving became indistinguishable. Together with the nausea, the doctor visits, the questions from friends and family, the pills and treatments, and the pain, being a cancer patient became who I was. My return to the real world after the chemo was extremely difficult. I simultaneously wanted to talk about it and to NOT talk about it.

Photo 2

 

Yet life goes on and my life had to continue to move forward. My hair was growing back, I was losing weight and I had more energy than I’d had in a long time. The mindset I had throughout chemo was that each round was a victory and that every small nauseating triumph would accumulate to success overall. And what is cancer but a concentration of painful battles? If I had won against that, then surely I deserved to live without any more inconvenience.

Again, I was wrong.

Without this understanding I might have gone through life thinking that the world owed me something and that every hardship had to be reimbursed. What if I spent the rest of my life asking “why me?” or cursing the wind every time my leg hurt, then there would be no time to appreciate the fact that I made it through the treatment. Sometimes, often times, life is unfair. But that is only part of the picture and a small one at that. Maybe this is the real lesson I learned.

Photo 3

It’s been 29 months since my chemo ended and I’m still not sure I’ve really ever left that waiting room. What remains though after spending so much time waiting and reflecting on my life, is an enormous appreciation for those who supported me throughout this journey. The fact that so many people supported me, including my wonderful family who sat alongside me in the hospital all those days bored out of their minds and not knowing what the future holds. To the doctors and nurses who were able to balance their work responsibilities while being kind and compassionate, proves to me that people are capable of extraordinary acts of kindness and strength. It is because of them that I made it through an otherwise horrific experience, and it is because of them that I appreciate life so much more now.

Inhabited

“It’s just so hard, Mo!” she exclaimed amidst tears, taking in labored breaths with her oxygen on. I had delivered the news that the tumors again were stable, which just meant they were not growing. “Stable”, I wonder where we come up with such terms and expect our patients to grasp the meaning. Stable, I guess, means: it’s quiet, not dramatic or anything, not out of control.. but then it is all relative. The cancer has not left her body. In each nodule billions of cells divide and multiply, and the CT scan is unable to tell the whole truth of what really was going on.

The conversation took a turn to where she was now sobbing. So lets do this like the movies, where a screen shot would say something like ….

10 minutes earlier

I had walked in and greeted my patient with a hug, she was a big advocate of my program and always supported cancer research. I had gone off on a tangent telling her about a new way of attacking cancer based on a test we were now doing in the cancer clinic identifying potential genetic targets. Here I go again sounding all sophisticated, but cancer growth often is dependent on what we call “pathways” that cause the cancer cells to survive in the environment they grow in. If identified, these signals can also be interrupted and the cancer treated, controlled or stabilized. I had found a potential agent that could be added to her current regimen and I was talking to her about this, when she suddenly started to sob.

“Stable” the word just hung there in the air. Not better, not gone. I felt the hard truth was that she was inhabited by this cancer. It was not going away like we would hope when we deliver therapy. She carries it along with her every day, in her body, memory, and heart. She must live amongst her family and forget that it exists. The oxygen prongs in her nose a constant reminder of the damage it had done to her lungs and her breathing. How does she do it? Is that what is hard?

Her next words, the gist of which was…..”I know the day will come when what you will say is not what I want to hear, that day when my tumor gets the better of me.” She followed by ” You need to blog. Your blogs help, they help me”. She is not the first to reach out to me to write.

What is touching is that she came with a gift to the scientific enterprise that comes up with answers and defines new attack schemas against this un-welcomed inhabitant. This gift, I explained to her, opens the doors to researchers that find ways to understand the alien lurking inside her for future cancer patients.

I held the envelope in my hand and I thanked her for her supporting cancer research: “every breath, every word and every gift goes a long way” I said. She told me that what I said helped. She wanted to share her message with her friends, explaining to them the power of what we can do as a collective group, to fight the rarity of what she has as we define the finest details of this complex disease.

Cancer has a different face now. It is constantly changing; evolving and so is our understanding of it. While this cancer is an intrinsic inhabitant of some of the people I have come to love and respect, never does my mind rest in searching for solutions to the issues that it keeps presenting. It cannot bend the spirit of the patient fighting, the family supporting and of the researchers who strive to impact the lives they so stringently try to save. “Stable”, while good, is far from where we want to be.

I am with you today my friend

Mo

 

The Messenger

What happens when someone reveals a difficult part of themselves when they are faced with adversity? New parts of us are expressed as we break down, or we show our teeth, when we fight or bite, or retreat in situations we wished we had never been forced to endure. I have seen all sorts of reactions that range from anger to despair. I have seen people floundering, and others drowning, trying hard to breathe as they search for a ray, a straw to hold on to. The situation is constant, unrelenting and never-ending. At times, their fear grips them, and instead of running away, they go inside to a place that is hard to see. They retreat within themselves, and they do not see or hear me. When I sit in silence next to my patient there is a myriad of things I see, and more I cannot discern. I am not sitting idly watching this, I sit present; connecting, empathizing, supporting, and waiting for something. Maybe that small flicker of courage. Today I will blog about the small things that I witness as a patient slowly finds the strength. I sometimes wish I could tell my patient, I am merely the messenger.

My patient was hunched over as if his backbone was weighed down by the burden of the news in his head. I sat close on a stool sharing the news and embracing the reactions that I have become accustomed to, when delivering cancer-related events. I needed to be present, open-minded, compassionate, and resilient as sometimes I become the target of my patients’ anger. It is never intentional on their part. I have asked myself “Have I ever been this scared? Has myself been endangered, and the ones so dear to me devastated for me, or for themselves?” I go to those times. Many things are said in such situations, that later when I recall them I wonder how one overcomes that reactivity, the impulsivity, and the urge to retaliate. I dismiss all my hurt feelings in these situations, yet I am fully aware of them as I struggle inside too. I search deeply for familiar feelings to balance the raw emotions that transpire.  I play with my own fears in my head remaining calm throughout.

My hand touches his shoulder. My voice resonating from a deep place, where my emotions are oscillating, from my own envisioned fears, from my delusions of loss and grief, from a dreadful moment I have yet to live. I talk slowly, at first, telling a small story that is very personal to me. I share that some of my own sufferings a point to reconnect perhaps. I search for my friend who is locked inside the tunnel with no light. It really does feel like I am blind sometimes aimlessly trying to find where they went. I search for small things, and as I find them, like a catalyst, allowing for the exchange of some words, sometimes questions are pummeled at me which I navigate not always with ease, but truthfully. The visit does not always end with my patient leaving with a smile.

Being present is made up of small things, that should not be dismissed as they are that ray of light that bring hope back to a patients heart; even when it does not happen in front of me, I know I have to start it. It is a privilege to be a part of a transformation, but it is exceptionally intimate to be at the start of one.

 

The Will to Live- by Guest Blogger Suzanne Ruggieri

Today’s blog comes from the wife of an osteosarcoma fighter. Together, they fought the disease as a team and beat the odds they were given, at least for a couple of years. Their story together may have ended early but it lives on through the eyes and spirit of their daugther.

I remember the first day my Ethan told me that he once had been treated for Osteosarcoma. I never expected him to say something like that, but I also thought it wasn’t a big deal. I had never been in the “front row” to witness the impact of cancer on a person fighting it; I was ignorant and oblivious to it. As Ethan and I continued our life together and soon we were engaged to be married. I knew that most likely Ethan’s cancer would rear its ugly head again at one point, but in the excitement of building our future together I assumed it would happen much later down the road. Unfortunately, it didn’t.

Ethan and Suzanne 1

The osteosarcoma came back with a vengeance early October of 2006, just two short months before Ethan’s 5-year remission date; only we didn’t know it yet. Our wedding was planned for November 18, 2006.

After much convincing on my part, we scheduled an appointment with the doctor and a biopsy was taken. The test results pointed to sarcoma again. It was so difficult to cover the panic that I felt when everything we planned had to be thrown in the wind. There was only one guarantee: Ethan would fight as hard as he could to beat the disease yet again.

We had so many appointments going from oncologist to oncologist with each one telling us the same thing: that the cancer has progressed too far and there was nothing that could be done for him and we should just go home. That did not sit too well with Ethan or me. We wanted our wedding, our honeymoon, and the happiness of newlywed bliss.

We knew that Ethan’s body was consumed by sarcoma; as it was in his lungs, heart, skin, pancreas, skull, kidneys, and liver. Despite that, Ethan felt he could fight it as he had beat it once before, and this time we would fight it as a team together. But we had a problem: we couldn’t find a single doctor that was willing to fight with us.

Ethan

We were scared and discouraged but we refused to give up so we headed to yet another consultation with a doctor that came highly referred. We didn’t expect any different from the previous doctors yet we knew if we didn’t try then we couldn’t beat it. Right away as we met Dr. Vyas we knew this would be different from all of the other doctors’ visits. He could clearly see we were worse for wear, yet he didn’t tell us that we should go home, rather he talked to us like normal people. He did make it clear that we were in bad shape and he could make no guarantees, but he also told us he would do everything he could to help us. That was a first for us.

We left the clinic that day with a ray of hope and we got married two weeks later, went on our honeymoon to the Virgin Islands and tried to enjoy the bit of time we had before it would all end.  We had a wonderful time despite the fact that we carried over 25 medications with us all prioritized to combat the painful effects of the cancer.

Ethan and Suzanne

Upon our return, Ethan was admitted for chemo treatment right away and he stayed 39 days. It was about 5 weeks into our stay when we learned that we were expecting our daughter, Emily. Despite feeling horrible, Ethan smiled so brightly and was so proud that he was going to be a Dad. From that time on, Ethan’s biggest concern each day was to make sure I was comfortable enough. My well-being and our daughter’s were more important than Ethan’s own comfort-the thought of his daughter gave him even more reason to fight.

Over time, the lesions polluting Ethan’s body shrunk and some even disappeared. Then as summer came as we prepared for our daughter’s birth we were still planning for the future as a family. Our daughter made her debut into the world on August 27, 2007 and Ethan was by my side. Two weeks later Ethan had his first lung surgery to remove the nodules. Up until that point I stayed with Ethan 24/7 and tried to be his voice and his biggest advocate.

Ethan with Baby

The first two days after the surgery I had no choice but to stay with Emily. It was heartbreaking to see that Ethan needed me desperately and one of the hardest decisions I had to make was to entrust Emily with family and to again stay with Ethan. At that time I felt that he needed me more than she did and I trusted our family and knew she would be well taken care of. In my heart I knew that Ethan and I were a team and we had to fight this as a team.

Life went on as did the chemo treatments and surgeries until the fall of 2008. That fall brought many horrors for us. Though Ethan’s lesions disappeared in some places he now had the addition of brain lesions. These lesions caused seizures and resulted in an emergency surgery. What we thought was a stumbling block was the beginning of the end and from this point on we were limited in the chemo treatments because Ethan’s body could not heal and become strong. As a result each time he had a surgery the cancer was flourishing elsewhere making it impossible to keep up. Finally on December 19, 2008 after an ambulance ride to the hospital we were told that there wasn’t anything else that could be done. The cancer was wrapping around Ethan’s spinal cord and was slowly paralyzing him.

We went home sad and empty and I made hospice arrangements and I was forced to accept the fact that I could not make him better. Regardless of how quickly I could change his drug pumps or clean his lines, I could not stop everything from happening. Ethan came to terms with his end on the last day in the hospital. Alone with his aunt, he said that he was blessed and fortunate to have had such a wonderful life and that there were people that did not get to experience half of what he experienced in his 24 years. He said that having Emily and me were all he could ever want. He was happy and he could leave our world happy knowing that.

We lost the battle in the early hours of February 8, 2009. I had given medication and must have fallen asleep and less than an hour later, I awoke and did not hear the oxygen machine. I knew he was gone. I never said goodbye and part of me knew that he left our world when I finally got a moment to sleep when I wouldn’t worry about him and for a few moments I was at peace.

Ethan 1

Looking back I know we were truly blessed from the beginning. I was blessed to have met such a wonderful old soul in the body of a 20 something year old man. I still cherish many of our sweet moments we had in the hospital; sure there were tears and worry in our room….pain and fear in waiting rooms…..but there was also undying love and support and a lot of humor that filled our hearts. We had the drive and determination to fight as hard and as long as we could and we made it 2 1/2 years together. In the beginning all doctors, except for Dr. Vyas, reminded us daily that Ethan had less than a month to live and well we proved them all wrong. We proved that determination and will to live is half the battle. We proved, with the help of Dr. Vyas, that we as people do not determine the lifespan of anyone.

I may not have Ethan by my side but I have Emily, our daughter, and a wonderful family that carries on the memory of Ethan daily. Emily is Ethan in every way: her eyes are his shade of beautiful, her facial expressions and silliness remind me that Ethan will always live on through her. I have remarried and Emily has a little brother, Gabriel Ethan. He too, knows the great importance of his middle name. Ethan’s legacy will always live on thru us and his drive is embedded in Emily.

Ethan’s big heart is part of Emily as well. Each year, she leads her Girl Scout troop in collecting donated boxes of Girl Scout cookies to take to the patients at Children’s Hospital of Pittsburgh, where her Daddy Ethan was taken care of. We support her as a family and want to help those who may just be in the same place that we once were. We do it to invoke a smile on a young child’s face or even a parent, because as Emily knows her Daddy Ethan LOVED cookies.

Ethan is as much a part of our family now as he was when he was with us physically. Wherever we may be, whatever we may do, he is always with us.

– Suzanne Ruggieri

Ethan with Emily

Emily is currently in her 2nd Annual cookie drive and for more information please email gscookies4chp@gmail.com.