Category: Sarcoma

Random

Posted on by momilhem

Death is a door. It is a moment in time that is well-defined.  Once it happens it is irreversible. Just like the diagnosis of cancer. It cannot be undone. I have said the word “Sarcoma” to so many patients. Yet this is a rare disease. It stems from the Greek word that means “fleshy growth”. Yes it is old, and it was present in history before. It scares me to know so little about it. I am just perceiving its vastness. Sometimes when I share with my patient it feels like I am speaking a different language. Muffled I sound to the patient, loud to the student. When I teach it I find myself saying to my students “Sarcoma makes me look smart because there is little known about it, and not a lot of people grasp it. Although I do not feel I know much, it just seems enough.” It is hard to comprehend.

I just hung up the phone with one of my fellows, he was talking to me about a patient who was not doing well. I could sense the eagerness in his voice to find another treatment, but the realism that there is none comes from my experience. A resistant disease to treatments that depend on a very old medicine; surgery – Cut it out, until you cannot , then keep trying to slow it down, with an inevitability that you cannot escape. A truth I have been facing many days in only trying to communicate it better with those who suffer its consequences. We can never relive the past, we barely stay in the present and the future never comes.  But there is a point when all this stops. I oscillate between the concept of death and the diagnosis of sarcoma.

Sarcoma! What is it? I don’t know? We have defined it as more than 150 subtypes. It stems from a very primitive cell called mesoderm. The most common cell in the body but it only makes up 1% of all human cancers. Rare is the diagnosis. Having a sarcoma gives uniqueness to a moment that really makes the person in front of me rare. Having a diagnosis of sarcoma gives definition to a cancer journey, to a patient’s identity, and to my relationship with them. I touch upon the relationships in my mind briefly, like staring at scars that are hard to forget. The knowledge of sarcomas is derived over many years of experience; it is slow to digest, hard to understand. Just like the knowledge of death.

Why am I writing in this way to you this week? Just random thoughts as I sit here on the couch thinking. Perhaps like the random selection of a sarcoma that appears in a human being. Random but exceptionally rare. How can that be random? I share with you my inner pendulum as I swing back and forth between a disease that is so little known and an event so little studied.

It takes a lot of effort and collaboration to get together and understand this very difficult disease. I believe Sarcoma doctors are the only ones who collaborate for the right reasons. They genuinely need the guidance of each other and act as a team to help understand this very diverse, very unique disease. I think of my patient who is struggling maybe near his end, after resisting so many therapies, what else can I do? I think about how inevitably I will fail, trying to find the key to helping patients. We have had small victories in our understanding but it still remains a mystery. I am in constant battle against the unknown and I am about to be wounded again, scarred, as my patient represents my unforgettable memories of him. Wish I could just take a shower and let it all wash away.

Random are my thoughts today. Resistant is the disease I treat. In an endless battle I stand, ready to fight again.

Mo

 

Don’t give up the fight!

Posted on by momilhem

July is sarcoma awareness month so I’ve invited others affected by sarcoma to guest blog throughout the month. Today’s blog comes from Suzanne Burkhart, wife to a sarcoma angel, Jim Burkhart.

 

When my husband Jim told me he had Sarcoma, I looked at him and said “Are you sure the doctor didn’t say ‘Carcinoma’”? “No, the doctor said Spindle Cell Sarcoma”. Sarcoma, what was that word?

Our journey began before the “Sarcoma” word. In January of 2011, my husband Jim was watching one of many bowl games when he felt a lump on the back of his leg. He pushed on it and immediately pain shot down to his foot. He kept that information to himself. A few weeks later, I walked into our bedroom to see Jim stretching out his leg. I asked what he was doing and he replied “I think I tore a muscle, so just stretching my leg”. I suggested physical therapy.

The physical therapist said he would not touch Jim until he had an MRI. That MRI led him to surgery for a biopsy. Right before Easter of 2011 Jim was told the dreaded news – Spindle Cell Sarcoma and an appointment was scheduled for the Monday after Easter at the University of Iowa.

We met with Dr. Joseph Buckwalter and he explained more about sarcoma, but your mind is a whirl and you don’t fully comprehend. Jim was scheduled for surgery that Friday in hopes to clean up the tumor, to get a full understanding of what we were dealing with. Friday’s surgery came and after surgery, Dr. Buckwalter told me that in order to save Jim’s life, he would have to amputate the left leg. I cried….whatever else was said I don’t remember other than those words “we are going to have to amputate”.

We went home to tell our children. Sam was 9, Henry 8, Eleanor 5 and Charlotte had just turned two. How do you find the words to tell your kids that their world was going to change, that their dad was going to look different. Our family cried, the boys begged for it to not happen, that they would be better behaved, we prayed. We went back to Dr. Buckwalter to discuss the amputation.

Suzanne Burkhart pic 3

Due to scheduling conflicts (ours because we wanted to wait until after our son’s First Communion) we met with Dr. Ben Miller. We really felt at ease with Dr. Miller. Dr. Buckwalter was a very good doctor, but at the time, I was very angry with Dr. Buckwalter for the news he had delivered. Surgery was scheduled for May 20- Jim and my 11th wedding anniversary. For me, what better day, since I promised Jim, in sickness and in health.

I think around this time we were introduced to Dr. Milhem. We were told to call him Mo. He didn’t sugar coat, he didn’t make promises but he got down to business, his business, of understanding and treating Sarcoma. The first form of business was to find out that we were dealing with Synovial Sarcoma. Visit after visit, we either came out of Mo’s office with a sense of relief in knowing that the cancer was behaving itself or with a new plan of chemo or clinical trial. Never once did Mo ever fill us with false hope if he didn’t have an answer as to why the Sarcoma was behaving a certain way. He would give us the “I need to talk this over with my colleagues to see if other doctors had any type if sarcomas acting this way. Email me tomorrow and I will have an answer.”

Suzanne Burkhart pic 1

This is how it is with Mo. Our lives were up and down and he was the steady in our tumultuous waters. We went for a second opinion in New York and came back to Mo with our findings. We went to NIH (National Institutes of Health) with Mo’s blessing for Jim to be in yet another clinical trial. We always pushed Mo and he pushed further and harder for Jim.

In March of this year, Jim had a gall bladder attack. With everything he had going on, a gall bladder attack seemed minor. We had our local doctors make contact with Iowa on how to treat. A week off of treatment and Jim had his gall bladder removed. Another week off of treatment and Jim was chomping at the bit to get back on treatment. Mo agreed. At our next appointment, we were told that the tumors in Jim’s lungs were still growing but, in true Mo style, he had one more thing to try, but this was it. If this treatment didn’t work, than he has exhausted all his resources.

Early in the morning of May 16th, Jim called out for me. I ran to him and he was struggling to breathe. We had an appointment later that morning in Iowa but I said to him, “Babe, I think we need to go to the hospital”. He agreed. The ER doctor told me the news that I knew, dreaded to hear, but knew I had to know. “He is dying” the doctor told me. I emailed Mo, I needed him to know. Oh, how I wish he could have been there, but we were too far away. I went in and told Jim “Babe, I think we are getting to end of our journey here”. We cried. I went to get our kids…family and friends gathered. By 10:15 that morning, my Jim was gone but I knew he was at peace.

The next morning I again emailed Mo. I thanked him for giving Jim three more years he may not have had. I told Mo to keep doing what he was doing…fighting for his patients in their battles against Sarcoma. And on our end, we will continue to keep doing what we have done for two years…raising much needed funds for Sarcoma Research through Drive Out Sarcoma.

Suzanne Burkhart pic 2

I leave you all with this. Jim never complained, not about treatment, not about why he had cancer. He accepted his fate and trusted in Mo to help him. He also had a strong faith in God to help him through diagnosis, treatment and death. While the kids and I will miss Jim every day of our lives, we know he is at peace.

-Suzanne Burkhart

Nik Jiruska: Ewing’s Sarcoma Survivor.

Posted on by momilhem

July is sarcoma awareness month so I’ve invited others affected by sarcoma to guest blog throughout the month. Today’s blog comes from Nik Jiruska, a young man who battled Ewing’s sarcoma. Enjoy.

My name is Nikolas Jiruska and I recently finished receiving chemotherapy treatments to fight a rare form of bone cancer called Ewing’s Sarcoma. This disease primarily affects children and adolescents, but I was diagnosed at the age of 20. It was a long journey, and I am fortunate enough to be able to say that I am now back at The University of Iowa nine months later and enjoying life more than ever. Now, let’s go back to April 2013 where my journey began.

Nik Jiruska 2

I started feeling pain in my left hip towards the end of April. It was a fairly mild pain and it would come and go every so often. I thought it might have been a pulled muscle or a pinched nerve. This persisted for a few weeks before the pain started to get worse. Fortunately, the intense pain waited until I was done with my final exams for the spring 2013 semester. I went to the emergency room at St. Luke’s Hospital in Cedar Rapids the first time the pain in my leg became unbearable. It started in my hip and would send deep, pulsing pain down my entire leg. They drew blood and took X-rays of my back and hip, but were not able to draw any conclusions from this work. I received some pain medicine and was told to keep monitoring my leg.

The pain continued to grow worse and worse from then and I went to the emergency room two more times before I finally received an MRI. The ER doctor who was tending to me knew immediately that I had cancer after looking at the results of the MRI. This was the last thing I ever expected to hear, especially at age 20. The doctor arranged for me to go to The University of Iowa Hospital and Clinics immediately. My parents, girlfriend, and I left St. Luke’s and went straight to Iowa City in the middle of the night.

After a few days of various tests, I was officially diagnosed with Ewing’s Sarcoma on June 4th, which also happens to be my mother’s birthday (happy birthday, right?). Although we had the official diagnosis, there was still a lot to do to find out if the cancer had spread anywhere else. After the initial blow from this horrifying diagnosis, we only received good news from then on. All of the tests revealed that the cancer was localized in my hip and had not spread to the brain, lungs, or bone marrow, which are three locations that this could likely spread to.

At this point, I started my chemotherapy treatments and talked with my oncologist, Dr. Mohammed Milhem (just “Mo” for every one who knows him), to get an idea of what the next few months would entail. I would receive chemotherapy treatments every two weeks, alternating between two and five-day treatments. I would have five rounds of chemotherapy and then have more scans to see how it reacted to the treatment. Shortly after, Dr. Benjamin Miller would perform surgery to remove the tumor. We thought I would have to receive a hip replacement, but there was a chance I could also have a bone allograft surgery depending on how the tumor reacted to the treatment. After the surgery, I would go on to receive nine more rounds of chemotherapy for 18 weeks.

It took me a few rounds of chemotherapy before I started to feel the effects. One of the effects that was the most difficult for me to grapple with was losing my hair. It was sort of my trademark and was a big adjustment in my life. However, a small price to pay, considering it would grow back eventually. Some of the other side effects I felt throughout my treatments were lightheadedness, fatigue, and nausea.

Nik Jiruska 1

The first five treatments flew by much faster than I had anticipated, and all of the sudden it was August. I had my scans and my cancer had reacted very well to the chemotherapy treatments, shrinking the tumor a lot. Dr. Miller determined that I would be able to have the bone allograft surgery. There is a longer recovery time with this route, but long-term, it would be better for my leg in terms of returning to normal functionality. Dr. Miller and his team performed a successful surgery to remove my tumor on August 21st. He determined that 95% of the tumor was dead and had been removed with clean margins. This was a big step out of the way, and everything was downhill after that.

Perhaps it is only at this point in time that I can say that it was downhill after surgery. At the time, life was very difficult. I was not able to put weight on my left leg for three months because my bone had to heal around the graft, and when you are dealing with healing bone, everyone knows this is a very slow process. This lack of mobility along with starting my final nine rounds of chemotherapy made my choice to withdraw from school for the fall 2013 semester pretty easy.

I do not know how I would have made it through those three months without my parents and girlfriend. They went out of their way to do things for me much more than they needed to. I am so grateful for them and what they did for me during this time, and during my whole fight. I primarily spent this time going back and forth between my apartment in Iowa City and my parents’ houses in Cedar Rapids, when I was not at UIHC for treatments. This was an uneventful time, to say the least. My days were filled with watching movies, Netflix, and playing videogames. It was the lazy time you fantasize about when you are living a normal, busy life, but believe me when I say this lifestyle gets old very fast.

After beating five video games and watching countless movies and TV shows, my three-month appointment with Dr. Miller arrived on November 14th and he gave me the OK to start bearing weight on my left leg. Goodbye, walker and crutches. I started practicing to walk immediately when I got back to my apartment after that appointment. It was an awkward and exciting feeling. I had, and still have, an overwhelming feeling of thankfulness that I have the opportunity to walk, because not everyone is fortunate enough to be able to keep their limb when they are diagnosed with Ewing’s Sarcoma.

At this point, life was getting pretty good. I was walking again and only had four more chemotherapy treatments to go. However, my last few treatments were delayed because I was really feeling the negative effects of the chemotherapy and I was not meeting the required blood counts to be able to start the next round of treatment. I had to receive a handful of blood transfusions during this time to help meet the blood count requirements. Thinking about it now, these setbacks were not a big deal at all compared to what can happen when receiving chemotherapy treatments. At the time, though, it seemed awful because I was so anxious to finish and get on with my life.

Finally, January 3rd came around and it was time to go in for my final chemotherapy treatment. Unfortunately, this had to be a five-day treatment. The longest five days of my entire life, I think. My girlfriend stayed with me every night in the hospital, as she did during my treatments in the summer months, which made everything a lot more bearable because she is a very comforting person to be around. The wonderful nurses of 4JPE in UIHC presented me a beautiful cookie cake to congratulate me on my final day. I then returned to Cedar Rapids for a couple of weeks of rest, relaxation, and relief before I would return to school. I returned to UIHC three weeks after I completed chemotherapy for a bone scan and CT scan to make sure I was clean. Sure enough, the scans were clear. We were all optimistic that this would be the case, and it was truly a wonderful feeling. Time to get back to life.

I am sitting here writing this now and I do not feel bitter about having to have endured this experience at all. I have only to be thankful that I survived it. Also, as odd as it may sound, I am sort of thankful that I went through this experience because I learned a lot about myself during this time and it strengthened my relationships with those closest to me. I want to conclude my story by saying that you should never overlook any pain or odd feeling you may experience in your body. I did not do this and the early detection of my cancer may have saved my life. I also want to give thanks to my wonderful caregivers throughout this journey, including Mo, Dr. Miller, my parents, my girlfriend, and the nurses of 4JPE, 4JPW, and 2RCW.

-Nik Jiurska

Nik’s girlfriend made a surprise video for him at the completion of his chemotherapy. She got many of Nik’s friends and family involved in this video, including a celebrity or two. Watch the story from KGAN News Channel 2 and then watch the video from his girlfriend here.

 

Invitation

Posted on by momilhem

“Just tell him he has more than 4 weeks to live”, her eyes welled up with tears. I reached for the tissues that are so conveniently placed in every room in the cancer center. He had sarcoma in his lungs, and the surgeon could not remove them after taking him to the operating room. He had recovered remarkably from the surgery and had come in to the office to talk, perhaps seeking re-assurance. He said “I keep thinking about my grandson, and I want what’s between my ears to stop thinking so hard about it”. I handed him the tissue now because he had started to cry. A common occurrence in my clinic, that emotions are powerfully shared. We all know we are eventually going to die; the acuity of the realization always hurts. I reassured him and his wife. He likely would not die in 4 weeks, and I had treatments up my sleeve. He was receiving an invitation from death, that he was next. How do you as a human being understand that you have to die at some point and reach acceptance? If death had a language how would it knock at our doors?

He left feeling better that he had come, I was glad to relay to him that death, albeit near, was not as imminent as he thought it was.

Events in my clinic remind me of a lot of death. It hovers around me like a teacher, not an enemy, and it speaks a language we are young to understand as humans. I want to share it more openly because many are frightened to talk about it. I might be very comfortable with the notion of dying, but in me there is a unique struggle that I share with everyone who gets a call from cancer to die. For starters they meet me and they begin a journey each one different. It’s like looking into a kaleidoscope the richness of colors, shapes, beauty and vitality that the human spirit brings with it. There is also the fear, the aloneness and the uncertainty of the how? When? And why? Questions I have yet to answer accurately. I had a conversation with a colleague as I waited for the bus to go home. She talked to me about a patient that just wanted me to call him. He had transitioned to hospice. She told me he was so appreciative with the decisions we made that had given him 4 years of survival. Of course I will call him I told her. Many thoughts as I bobbed up and down on the bus, it has a way of percolating thoughts, having someone else steer you to where you need to go so you get to focus on other things. I have often told my patients, sit back, I am the bus driver. It might be rocky but I will drive with what I know.

How do we end this conversation? Well consider it a beginning of a deep understanding of a process of life we choose not to acknowledge until we receive the invitation to understand it. We focus on health, love, family and life. We do not talk about an inevitable process called death. It might be very lonely sending us invites welcoming us to the next process. It is sobering to discover that which many fear in their hearts teaches a deeper wisdom that is appreciated. I too travel to my own, and I wait for an invitation to join those who have already passed.

 

Ambiguity

Posted on by momilhem

“You have to go home, you have a blog to write” my breathless patient uttered the words as he awkwardly ended our conversation last night. I was tired, but not nearly as much as he was. Yet he was there, caring about what I still had to do tonight. It had been a long day for him, a long week to be honest and now has been admitted. Patients get admitted for different reasons. Some to get chemotherapy, others with symptoms that are hard to manage at home.

It takes me one look at them to know that they need to be admitted to the hospital and that this is another battle they must face. Putting them in the hospital allows many aspects of their care to take place. They are right at the heart of the “factory”, with all the nurses, the physicians, the pharmacists, the medication, the machines and technology. He looked back at me and he knew that I would admit him. It was clear he was struggling and it was time to offer relief to him and his wife who cried but agreed this would be the best thing to do.

What will happen? Is it the cancer? They and I hoped for many other things and many outcomes, something I could possibly remedy. It’s not easy to see my patients struggling with their symptoms. They are trying hard to “fight”. They get stoic and a little stubborn. I promised to see him the next day to talk over the tests that I had asked the team taking care of him to do.  The ambiguity of not knowing his outcome was a thought that floated in my mind as I went home. I am ending my night praying for a result of a vision of him feeling better.

I walked away from the hospital, leaving my patient behind, but in the good careful hands of the staff in the hospital. I think of his words, “you have a blog to write” and I smile. Sure, I will work on my blog. He was one of my friends that read what I write every week.  It touched me that he read it, anticipated it and knew that I did that on Tuesday at the end of my day. I never know what I will write about, I just do. I let my day and mind settle. Tonight, like many nights, my thoughts are with those who are in the hospital. They linger with those that have ambiguity in what their outcome might be. It is a difficult place to be. Please know I am with you.

Goodnight my friends.

Mo