The Love of This Momma in My Own Suit of Armor

9 months and 25 days ago my life was forever changed; it was the day I found out that one of my babies was diagnosed with cancer. The diagnosis was a very rare and aggressive cancer usually found in children or young adults called Ewing’s Sarcoma. For those of you who have had a child with cancer or any other serious illness, you know what I’m talking about: the tears, the pain and the frustrations that we go through.

SONY DSC

The love of a mother has for her child is like no other; it is a love that can’t be explained. A love that makes you wish you could take all of the sickness and pain away so that your child would be ok. But unfortunately life doesn’t work that way; you can love your child with everything you have, but you can’t take away their pain. You can only endure it with them, love them and never let them feel that they are alone.

In Dr. Mo’s clinic, Zach’s nurse, Wendee would tell me to put up my ‘armor’ when I was having a bad day. That thought really spoke to me because as moms we wear many suits of armor on a regular day, yet the armor changes when you have a child with cancer. Some days my armor held my heart in my body or some days my armor held me together because everything inside of me felt like it was coming undone. Some days my armor kept my knees from buckling beneath me and kept me from falling apart.

However, this past year I’ve also found that I have another suit of armor and that is my faith in God. Over the past nine months we have experienced more emotions then we thought were possible for one human being to endure.

This journey has made me see so many things so differently: remember to be kind to others, surround yourself with loving people, and please donate blood! I always knew life was so precious, but really didn’t appreciate the fact that the rug could be pulled out from under your feet in a blink of an eye. So, my armor has really become a way of dealing with all of the emotions of Zach’s illness and his recovery.

July 30 Deb Painter Pic 2

One night on our way home from a long stay at the hospital the song “Life Ain’t Always Beautiful” by Gary Allen came on the radio. So many things in life aren’t fair, but so many more things are so amazingly beautiful and we are truly blessed. Life ain’t always beautiful, but it’s a beautiful ride.

Team Painter is still standing together, still standing strong. Zach is a true warrior and my rock star along with his brothers. This is one proud Momma wearing her own suit of armor!

July 30 Deb Painter Pic 1

Update: Zach had scans in late July and the results came back free of cancer.

 

 

 

2 Minutes

I have been in practice now for 10 years, not counting my training and medical schooling. My practice and approach to patient care has evolved over time. I started blogging 1 year ago, and this has uncovered emotions in me that I did not know existed, and has proved to be an amazing way to communicate with my patients. Comments from readers, friends and family have opened my eyes to a side of cancer care that I had not been before. Through this I have interacted with so many people at different levels in their own inner struggles.

I think of eyes as cameras capturing moments, faces, and emotions with ears recording snippets of conversations, laughs shaking voices and silence when words do not come out. My brain stores memorable events, in short spurts I connect the events, the decisions, the emotions that they stirred, the results they brought about and this hard drive contributes to my thought processes, my experience, my memories, my regrets and my pride. My life story and those of my patients constitute a switchboard of things that worked, things that were close calls, and things that caused harm. These are powerful, invaluable, and unforgettable events pushing me to share it as science, knowledge and a voice in a blog.

I am thinking about those interactions tonight with those who I have met. I am considering, what it would be like if I was granted 2 minutes to talk to each person again. My excitement builds up as I think who and where? In clinic? Or maybe over dinner, in a speed date format? Or better still in the park or at a party? 2 minutes with each: the dead, the living, the survivors, the fighters, the families and the learners. Would I pitch my thoughts or would I share the many things I have learned? Would I start with those I disappointed, or those I had the most success? What would I say?

Tick tock goes the clock and we all know it goes only one way. At the end of my clinic day, looking back at the many hours spent counseling my patients and making decisions, I believe if I did have the “2 minute” stage with each human I have interacted with I would want to say:

“My decisions were empowered by your choices in life and what were important to you given the knowledge I shared. Please know you have added to my experience that goes forward to help someone else and it is never idle. There is no event that you have faced that goes unnoticed and that I remain in your debt for the knowledge that you have kindly shared.”

Thank you.

2 words that capture much more than 2 minutes could ever have.

Mo

 

 

Fresh Eyes

Many people come in to my clinic to shadow me and follow me around seeing my patients with me. Today I have asked 2 college students to share their thoughts. I had sent them both an email that said:

“Thank you for coming to the clinic, you and another college student have enhanced my understanding of many things that practice can offer. I want to task you with something, not sure if you would do it, but worth asking. Can you write to me from your age perspective what you perceived in the clinic about things like death, treatment, cancer and patient care? I would welcome the feedback. Did you enjoy it? What particularly was intimidating? What did not jive? Or things you liked or questions that persisted in your mind………..”

Here is what they had to say:

 

Mo,
Before shadowing in an oncology clinic, cancer was a statistic, it was something my older relatives had gotten when I was too young to really understand, it was a great research field, it was cells dividing out of control. When I stepped foot in the first patient’s room, cancer was suddenly none of those things. Cancer was right in front of me; it was a person, a family, a lifestyle.

As a person who tries to avoid less-than-happy emotions at all costs, I have always tried to take a passive approach to death. Somewhere lurking inside me were all the thoughts about death that I tried to keep shut away, telling myself I would deal with them when I had to. After the first time I followed Mo around his clinic, I left in complete shock, telling myself I would never be able to do that kind of clinical work. I saw how strongly death affected Mo’s life, and I was not ready to let those thoughts out of their caged place, let alone work with death every day. I told myself that I had a wonderful experience learning from Mo, but there was no way I would be able to do that as my career. When Mo invited me back to shadow another time, I felt compelled to face the unsettled feelings of the first visit.

I am extremely thankful for Mo’s generosity in letting me into the clinic another time because leaving the second visit, I had a completely different outlook. I like that treatment is a puzzle. Not everyone is able to have the same treatment with the same outcomes because of a multitude of factors. Therefore, each day, each patient needs complete concentration in order to figure out what kind of treatment will work in each specific scenario.

It was shocking to me what good spirits many of the patients were in. Cancer is such a scary word, but it almost seemed as if many patients were moved by the solemnity of their condition to fight not only for themselves, but also to help future patients.

It was either a defense mechanism, or truly just caught up in all the information, but I noticed that almost every patient I saw was so focused on the logistics of fighting the cancer that they did not seem focused on death, at least not on the outside. They asked very few emotional questions, the types of questions I had expected in an oncology clinic; most questions were in search of more information about what the cancer was doing and what was the next step they needed to take. Perhaps this is because while they are out living their lives, these thoughts of death creep in, but when they are in the walls of a medical facility, they feel more at ease with real answers instead of the tales their minds come up with.

The mind is very powerful. It can deceive, create, and heal. I am still not exactly sure how exactly the mind plays these roles in a cancer patient, but just in the few hours I was observing, it is obviously that long after the body becomes ill, their mind still continues on, in whatever fashion it can.

-Hailee Reist

 

Mo,
When I first stepped into your clinic, the thought of death was last on my mind. I guess it didn’t register with me that I was going to see terminally ill cancer patients. When visiting patients I found it rather odd to think that these people had cancer. The mood was always light, amid witty jokes that always made the patients laugh as if they were seeing an old friend. The topic of cancer obviously did come up, but for the most part its discussion was very limited upon your arrival to the room. I found that fairly surprising, given the severity of their ailment. The word “death” has never once been uttered in front of patients, yet you told me behind-the-scenes that some might not live for long. It was remarkable to see such juxtaposition. The light-hearted mood was an especially effective mask that seemed to propagate happiness and hope instead of sadness.

Although we had many discussions, there was a particular conversation between us that stuck out to me. We were talking about the future of medicine and you brought up the upcoming battle between surgery and drug treatment. I never really thought about how we are essentially one pill away from curing cancer and that surgery in the future may not be as relevant as it is currently. That really struck a chord with me. It was very interesting to think that surgery as a profession may decrease in demand in response to cancer drug therapy. That argument has definitely inspired me to think on the long run and ponder about the competitiveness and need of certain medical specialties.

Overall, I very much enjoyed the experience. I was able to observe many diverse cases and I was lucky enough to see some patients twice and see how they have reacted to their treatment. I am glad you exposed me to medical oncology. This has been an educational experience that I sincerely appreciate. Thank you for allowing.

– Gal Wald

College Student to Caregiver

July is sarcoma awareness month so I’ve invited others affected by sarcoma to guest blog throughout the month. The last blog of the month comes from Moleigh Ryther, girlfriend to Nik Jiruska, Ewing’s Sarcoma survivor. Nik blogged earlier this month and now Moleigh shares her story as a caregiver to a loved one with cancer.

Caregiving is hard. Everyone knows it. Well…everyone should know it. But you don’t really know what it’s like until you are a caregiver. Many of you probably read Nik’s post on Dr. Mo’s blog about his journey with Ewing’s Sarcoma. I am Nik’s girlfriend, Moleigh Ryther, and I’m going to parallel his experience with my own as one of his caregivers.

April 2013, Nik started complaining about a pain in his left leg occasionally. I remember him referring to it as a “growing pain” one time when we were doing homework. I guess he was kind of right because something was definitely growing. But at the time, I thought it was nothing. Being the hard-working student that he is, he pushed through finals despite the aggravation. After completion of his semester, he tried going to a chiropractor thinking maybe he had a pinched nerve. Nik gets very stressed out during school so I thought it was maybe even stress-related.

Nik and Moleigh 1

Days later, Nik made his first trip to the ER: no conclusion. Second trip to the ER: no conclusion. Butterflies began to develop in my stomach. By his third trip to the ER, it seemed like hornets had taken place of the butterflies. We were supposed to watch a movie at his dad’s that night. Nik called me as I was doing my makeup and I could sense his pain through his voice. I immediately drove to St. Luke’s. I think it was about three o’clock in the afternoon. As Nik cringed with every slight movement of his leg, my stomach tightened and tightened. After many hours, Nik was taken back for an MRI. As I think back to the moment that the doctor returned with the results, the memory is a weird mixture of clear and foggy. I picture our faces and the room clearly but the moment the words “bone cancer” were uttered, everything becomes foggy and in slow motion. It felt like time stopped. I didn’t know what to do or say. I was in shock. I just remember Nik and I locking eyes and me lunging for him. Nothing the doctor said past that point was heard or remembered. By that time it was about one o’clock in the morning and we were sent immediately to the ER at UIHC.

It’s an awful, awful feeling to know that the one you love has “bone cancer” but an even worse feeling is wondering how bad it is. Fast-forwarding past final diagnosis of Ewing’s Sarcoma and into his biweekly hospital stays, we desperately searched for things to consume our minds within the confines of his hospital room. When it comes to hospital floors for chemo treatments, you have a pediatric floor and you have an adult floor. Nik was 20 – too old for pediatrics and about 30-40 years younger than the average patient on the adult floor.

Being a young adult with cancer puts you in a very underrepresented group with very different challenges. Most 20-year-olds may worry about school, their weekend plans or maybe a fight with their boyfriend/girlfriend. It’s a part of your college years, what most refer to as “the best years of your life.” You discover who you are. You’re allowed to be selfish and mistakes are expected. All the while, you’re attempting to gain independence from your parents. Being a young adult caregiver shares many of the same challenges. However, I in no way want to measure my experience alongside Nik’s. Although we lived it together, we experienced our own set of challenges.

Nik and Moleigh 3

Nik stayed in Iowa City with the hopes of taking classes during treatment and I was committed to helping him along the way. I created and updated Nik’s CarePage to keep friends and family involved. It was evident that Nik’s supporters reached far and wide, but that small studio apartment on Clinton Street felt so isolating. During his healing time after surgery in which he could not walk, I would rack my mind for things I could do or say to lift his spirits but ideas were not there. It’s not an easy task to balance the roles of caregiver and girlfriend in addition to the roles of nursing student, Cambus driver and sorority member. Being in his apartment in downtown Iowa City, we would lie there trying to sleep as we heard the ruckus of our peers outside. I found myself snapping at friends who would complain about frivolous pursuits in their lives. Let’s face it, many college students complain about homework, tests and commitments – I had no tolerance for that. It was unfair of me to expect my peers to understand what Nik and I were going through yet it felt impossible to restrain those feelings of bitterness.

Nik and Moleigh Collage

Despite all the negativity that comes along with a cancer diagnosis, I believe that you can find the good in anything. Here’s just a short list of the good that came out of our experience:

  • Nik and I got to spend the whole summer re-watching seasons of Dexter together.
  • The nurses and staff on 4JP and the outpatient clinic were so much fun.
  • Nik had an excuse to eat whatever he wanted and I liked to think that I did too.
  • My eyes were opened to what’s truly important in life and this continues to guide me in times of stress.
  • Dr. Mo created a relationship with Nik that is unlike any patient-doctor bond.
  • Being reminded of the good in the world through acts of kindness.
  • I feel very close to his parents and family after spending so much time with them.
  • Nik and I truly do know each other at our best and absolute worst. Nik can tell you first-hand what I look like after 5 days sleeping on a cot in the hospital with no toiletries. Spoiler: Not pretty.
  • Dr. Miller is easy on the eyes. Am I allowed to say that?
  • Nik’s Head Shaving party was a blast and we raised a bunch of money for The University of Iowa Dance Marathon.
  • Nik’s “You’re the Man” video raised so much awareness for Ewing’s Sarcoma and was so inspiring to put together.

It has been about eight months since Nik’s treatment ended but our journey continues as we head to Italy in a couple of weeks to celebrate all that we have to be thankful for. My boyfriend is the most amazing person in the world and he has an 11-inch scar to prove it.

-Moleigh Ryther

Nik and Moleigh 2

 

 

 

Random

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