Author: momilhem

Medical oncologist. Human. My thoughts, my words.

The Will to Live- by Guest Blogger Suzanne Ruggieri

Posted on by momilhem

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.

Closure.

Posted on by momilhem

I just reread this ….I am touched too by what I write. Your comments have all made me feel special…..really….I am just that idiot passing through

momilhem's avatarMo About Cancer

“I didn’t know I could talk to you” he said to me in the clinic today. We hugged and he sat down, “It happened so fast.” We were both fighting back some tears. “She was an amazing woman” I chimed, trying to find the right footing as we talked.

It was the end of my clinic and a family came to see me to find closure in the care of their loved one. This is a side of me that is very private and my voice is sharing this with you. My heart is not.  It is a rare event that I come full circle and have a chance to talk about someone who lived.

What is important to me in the closure of a patient who passes? I’ll share this intimate detail with you now.

When patients cross my path on their extraordinary journey, I deal with their cancer…

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Permission

Posted on by momilhem

“You’re a good man”, said my patient as he hugged me. He was tapping me kindly on my back. He had waited for over an hour to see me. Wheelchair bound I was saddened when I walked in to see him. I was realizing the end was near as the quote of the series Dr. Who flashed through my mind…when The Doctor says….” I am not a good man, but I am not bad man, I am definitely not a president, or a general or an officer…….I am in idiot with a box and a screwdriver, helping out when I can, learning.” The obvious part is that I am helping out when I can, and the rest of the truth is that I am an idiot passing through with the knowledge I have acquired, and learning as I go. I discovered that my patients have been teaching me something they do very well; teaching me how to die. Here he sat in the wheelchair, he looked ready. What was he waiting for?

I have acquired an innate understanding of death. I recognize it, I accept it, and I too am scared of it. It is a stretch to talk about death like we do about life. Death is more inevitable than life itself yet we tend to dismiss it. We focus on life, and on the aspects that are important to develop a career, an education, a pathway and a life, a relationship and a way to replicate ourselves and bring in more lives to this world. But, as I talk to so many who are ready to transition to death, I tend to think of it as a suspension. That is another story for another day. This man was a little different he made a trip to see me, but I am hiding the ending behind the veil, because it is what is making my statement more powerful. He is making me talk about death to you as intimate, as something there, and maybe we should not be dismissing it. We tend to not want to embark on the journey that challenges our intellect or our comfort, or our narcissism. We do not talk about it objectively or even humorously like we do about a thrilling story in Halloween, not every day, not all the time. We do not talk about it with a bit of comradery, or some spirituality, or some vulnerability? “It” is the way we observe it. Why are we talking about Dr. Who?

He sat there. Haggard. I told him it was time to die. That he should be made “Hospice”, that his cancer was everywhere, and that there is nothing I could do. I was sure of that. My mind fighting the words, “We have had this conversation……why did you come?” He gracefully accepted and hugged me. All the people in the room did that. Why so thankful I thought? How could death today not be so familiar to me, I say goodbye to so many. The relationship being re-defined. The news came the next morning, he died early morning peacefully surrounded by his family. I make sure I always ask how. My heart goes out to his family and I was sad. He knew what he was doing. He signaled that he was dying, as if he wanted permission to give in to its call. He wanted to not let me down, not let his family down he was fighting for those around him. Once the news was out, he let go.

I am just passing through, learning from those who travel into the suspension they go.

Mo

Injured

Posted on by momilhem

She died on Saturday evening. A wonderful woman; elegant, sophisticated and intriguing. She had battled her cancer; therapy after therapy, always trusting the decisions being made always trying to remain ahead, never giving up or in, never wavering. Her last therapy I recalled had injured her lungs making it hard to continue. I go back to that moment, it’s not easy to know that our therapies have consequences and sometimes the outcomes are not what we want. Damages from our treatment, whether in the short term or the long term, are now playing an important role in our choices of what we treat our patients with. Why bring this up now?

As most of you have realized I have not been blogging for a long period of time. There are many reasons, which I will not divulge, but I will share one. Over time I have been sharing intimate stories with you. Each blog is truly a touching experience for me and hard sometimes to materialize into words. Yet I found myself doing that time and time again. I had not realized that sharing these stories was cathartic to some and injurious to others. Each blog represents a humans experience and journey with me. Such is surgery and chemotherapy, they are painful, often helpful, and not always curative. I found myself revisiting scars and wounds that made up the utter fabric of my existence. It was hard to put a positive spin on things, as often they have sad endings. It was hard to read them after I had written them. So I decided to pause. In this pause I have been reflecting and rethinking, “how am I supposed to write? What reason do I have to write?”

Today I received an email from a patient who had survived her disease. I am quoting it word for word….please take a moment….to read these powerful words.

“Hi Dr. Mo,

I felt the need to write and thank you. After my last visit this past summer we discussed your blog and that day after our appointment I started to read it. As I sat in waiting rooms all day for my appointments I continued to read post after post to pass the time and couldn’t get enough. I signed up to get email alerts when new posts were written and pretty soon it became what I looked forward to each week. Between all the junk mail there would be the notification that a new post was up and that meant that I had a five minute break from the world.

This past fall I have been extremely busy with my job dealing with lots of traveling and deadlines and sometimes the stress tends to pile. No matter how overwhelmed I would be feeling when I started to read one of your blog posts all the things that seemed important disappeared for that short time.

I tend to worry a lot and am a bit of a control freak I’ll admit, but when I was diagnosed with cancer things that I thought were so important no longer compared to having it. That experience gave me a new way of living and seeing life with a new perspective. No one tells you though that if you are lucky enough to win the battle with cancer that eventually that new outlook you have on life tends to fade once things eventually start to go back to normal. There are times when certain things bring me back to that way of thinking when I did have cancer, whether its a movie, a book or examining my scar that I realize some things I worry about just don’t really matter as much as I think they do. Your posts are one of those ways I am brought back to that state of mind and remind me how fragile and short life is and how the things I was worrying about before are nothing compared to other issues in life and what I went through and could have gone through.

When I had cancer I didn’t share my feelings and thoughts that often with friends and family. I just felt no one knew what I was going through and I was trying to keep everything the way it was before. I also felt like I wasn’t worthy enough to talk about it since I had it much easier than lots of other cancer patients. I’ve noticed since then emotionally healing from having cancer has been a lot harder to deal with. Every post of yours I read helped me deal with those issues and heal in some way. Things I had thought about and didn’t know how to put into words were all there. The fact that you were able to cure me physically and even somewhat emotionally is beyond amazing to me. I have no way to tell you how thankful I am other than my words.

Although I know you don’t write as often now and I know you have good reason since you are a busy man I want you to know that not only are you a great doctor who saved my life, but you are a great writer who has helped me heal. “

Thank you my hero, for teaching me that all injuries heal including the deepest wounds. Your words have touched me deeply. That despite the injury that cancer inflicts on us, there are lessons that broaden our minds and deepen our senses to the ongoing conflicts we face in life. Thank you for opening my mind to the reactions and usually not shared. I truly am touched and indebted to your kindness and your words have far more impact that you can possibly imagine.

Mo.

 

Fog

Posted on by momilhem

I sat with my patient to discuss her progressive disease. It has now spread to many sites and it was deemed incurable. We had done several tests, and that much was certain at this point. I sat across from her and her mother. I started the conversation about treatment, but I felt I could not complete it. My patient got distressed and was no longer receptive to the information I was trying to relay. In addition to the tears in her eyes, the air between us felt foggy. I was not expecting her to “bounce back” and be with me in the session just yet. I wanted to say, “Go home come back in a week”, but I find that most patients want me to still speak after they’ve mentally left the session. They want me to go on a soliloquy penetrating the fog. I find that most want some instantaneous miracle to come out of my mouth. It saddens them further when I do not have that miracle. But I have to get through this conversation about the treatment, to get some sort of plan in place. All I want to say is go home and come another day.

 

Her mother took center stage with tears in her eyes and started asking questions to make sense of the decisions that needed to be made. Another set of ears to determine the next course of She pulled me in and pushed on the discussion in the midst of the fog that now clouds the mind of my patient. My patient was tearful, and her mind preoccupied and weary of what she is about to face. What do you say to someone who is young who has been robbed of the years yet to come?

 

A fog is blinding, the road that was clear is now murky. There are many dangers. I have never liked driving through a foggy day. I always say when it will end, having always to remind myself that it will eventually end. My eye sight limited, my vision obscured. My senses are heightened, ready to react, and my fears accentuated. I can only imagine the burden a diagnosis such as this places on the patient. When a fog descends upon your life, it’s not a highway, a road or an alley, but rather your life. I reflected on this, as drove in this morning through the thick fog that had engulfed Iowa City. The clouded roads, nowhere to hide from it, affecting everyone. I know that it eventually lifts but sometimes the feeling that it will not, overpowers. That is the time I wish I could tell my patient go home, and come out when the weather clears up.

 

I can’t lift the fog even if I try. The fog is in front of your eyes. The fog is in your way, the fog is in your life right now; but I know it will lift one day, and I hope that day is soon.