Perspectives, Sarcoma

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.

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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.

 

 

 

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Perspectives, Sarcoma

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

 

 

 

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