Author: momilhem

Medical oncologist. Human. My thoughts, my words.

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

Frazzled

Posted on by momilhem

The tension in the work room was mounting. The research coordinator sat next to physician’s assistant who was waiting eagerly by the phone. She was waiting for a phone call from the radiologist. I knew who this was for as I had walked by the room multiple times and seen the patient pacing up and down in the room very anxious to know the results of her MRI scan. It’s not an easy sight. The pacing and that anxious look. The door was open as I passed by, her face staring at me longing for assurance. I gave none, because I did not know the result yet. I offered a simple smile, but this does not have the wanted effect. She continued pacing.

I feel a need well up inside me to remove this patient’s anxiety. Patience, my mind says, we have been down this road before. I’m ready for both battles, but not eager to engage in the battle of bad news. I continued what I do best, seeing other patients. I do not like not knowing too, I thought. I was beginning to get anxious myself, it’s taking too long for the radiologist to get back to us with the results – a sign perhaps that this was not going to be good news after all. I regretfully conjured up the thought of giving bad news. I carried that with me in my heart from room to room as my team patiently waited by the phone. She was not alone in this. But I am sure she felt that she was. We were all worried. That is a feeling we rarely share back with our patients. It’s the feeling that we need to know, for better or for worse.

It’s hard not to get involved emotionally sometimes waiting in anxiety for a test result that might determine the next treatment or seal the fate of a person. The phone finally rang. It’s annoying sound shattered the pensive feeling that surrounded it. It was like waiting for your final grade after an exam you had studied so hard for. I stood and watched, allowing the reality of the truth to become manifest. Her voice was solemn “yes” she said listening intently and jotting down what was being said. I could not hear the radiologist on the other line but I could hear the tone of the voice of the person receiving the news, it was reassuring. Her voice heightened with every response listening intently as the radiologist told her his thoughts about the scan. Each response she gave was happier than the previous. The coordinator and I were smiling. This sounded like good news, the tension in the air very quickly melting away.

We all walked into the room. Frazzled, my patient’s tears were quick to show, and we all shared the news that things looked better than they had seemed. In the rush of it, I hugged her and she started to cry. It was a powerful moment captured in the cathartic delivery of the truth after a very long wait. It was worth it in the end. The coordinator joked “now you have to fill out the questionnaire”, revitalized, the patient just said, “happy to”.

I have been through these times with many people, with them on this anxious journey. I tell you I do not like it one bit, the wait, the pacing, the lack of knowledge and the race of emotions as the truth unfolds. Experience has taught me to be patient as sometimes the unexpected does happen and the wait was merely a mask behind the victory that needed to be told.

Mo

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.

 

Yell

Posted on by momilhem

Her face was ashen as she walked into the clinic room. Her movements were slow, and deliberate. She was clearly significantly fatigued. Not the bubbly person I knew her to be 2 weeks ago. Clearly something was amiss. I was walking to see another patient, but my critical eye could not dismiss that my patient was in dire distress. When it was her turn to be seen, I entered her realm. She was lying on the examination table with a blanket up to her chin, the blood pressure cuff was beeping a bunch of numbers at me, and the room’s neon lights were turned off to make her more comfortable. I stood at the foot of the bed and looked deep into my patient’s eyes. Examining her as I would, fully present, I noticed as my coordinator scurried to remove the cuff from her arm and get her papers together. My patient was in trouble.

I looked deep into her eyes. She was participating in a clinical trial offering a new agent for the treatment of her disease. It was clear to me that the treatment had taken its toll. I was saddened and angered by her ill physical condition, but how can you show your anger to a person you highly respect. Someone who had taken a chance to help herself and so many others by participating in a trial that might define the next treatment for the generations to come who are plagued with this disease. I asked her husband “How long has this been going on?” He replied “for the last 10 days. She has been sleeping for almost 18 hours a day.” She was fatigued to the point it was interfering with her life. “I did not want to bother you”, came slowly from her lips “I just pushed on wanting to make the treatment successful”. Ah, that common feeling of wanting to do more than what is expected. Here is what I have to say to that, to the patients who feel they do not need to reach out when they are in trouble. Don’t be silent, YELL. Let me know, make as much noise as you need to, your voice is always heard, you are alerting me to things I want to know and things I can help you with, averting a potential danger. Don’t wait, don’t ever think you are a bother, and don’t ever imagine you interrupt or annoy me; I want you to be an honest messenger to an event that I can help you get though. You are a beacon to help me, and I am the lighthouse that shines the light to help you through these troubled waters. YELL.

We talked through humor and we made a laugh of it, I guess that is the way to express your anger to those you respect. “I am such a Dodo” she said, “I just did not know that I could bother you even with this”. Her husband’s eyes filled with tears as he realized he could have intervened earlier. “It’s ok” I said, ” I’m an oncologist more is always better, let’s hope it kicked your tumor’s $@# for the trouble it has put you through”. That brought a few cackles. I saw what I needed, the relief that she had shared her trouble and that once again it was not her responsibility for the decision. It was mine. I reassured her, asked my coordinator to check on her every other day; till I knew she was out of the woods. I said “it’s not your decision any more to just not tell me, I am going to have someone call you to make sure you get out of this, safely”.

My friends, yell, when you think it does not count, yell and you will be heard. It’s my job to make sure you live your life, and not suffer unnecessarily. Yell. I want to know how I can help you. I will always be there, and with the knowledge I have I will guide you to safety.

Mo

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.