tribute

Your Story

/ Revolution.07 / 2 Comments

Blog - StoriesNovember 14th, 2007 marks the “9-11” of my world. A date that became a dreaded day in my history book, one that shook me to my core, a depth I didn’t know was possible. This day not only marked the death of my sister, but the death of me as the person I had become thus far in life. As the years have unfolded I’ve realized how many times I’ve died, how many old layers and stories I’ve shed. But as with any death, both physical and metaphorical – comes birth. It’s funny how much we don’t realize or focus on that. With every loss of a person, relationship, home or possession comes new opportunity – assuming we’re willing to see it. We spend so much time looking back at that closed door trying to figure out how we could’ve left it open, that we blind ourselves from seeing the beauty that lies ahead.

There are times I’ve wondered – had she not died, would I have still found my passion? Would I be transitioning out of the corporate world to focus on revolutionizing and bringing awareness to a new paradigm around mental and emotional health? Would I have learned the same valuable lessons personally so I could connect and teach others? Would I have realized that it has little to do with labels and more to do with the underlying components, the ones we’ve all suppressed and forced ourselves to bury and forget? Lets be honest, I’ve always been good at expanding and pushing the limits, but would I have done it in a way that caused more pain and disruption, instead of healing and liberation? Would I have started a blog? One that began with my own story and  shifted into the love of telling others real and raw stories? Ones not only of trauma and heartache, but of love and healing? Perhaps we’re all still going where we were originally headed, but her decision, one that left a ripple – shifted my course to this path. A path that has pushed me to the depths of some very dark valleys, and pushed me even harder up the mountains. I don’t want this to be my only story – her death was the start of my story, and one I hope overflows to many others stories. Your greatest strengths really do lie in your deepest pain. Those are the very wounds that are there for a reason you have yet to discover, the ones that will not only break you down – but to break you open. Those are the turning points in your life that are pushing to you to new depths. It isn’t about allowing this to be your only story, it’s about pushing yourself to a new one. It isn’t about going with the norm, it’s about reinventing the norm. And it isn’t about her death as much as it is the life that can be birthed from it. The realization that in a world that often feels hopeless, there is still plenty of it. And that starts with us – that starts with the death of old stories and the pain we’ve held so tightly too, and allowing ourselves to rise from it. Its about being true to ourselves, instead of attaching ourselves to others. This blog began with telling my own story, but has blossomed into the realization that we all have one to tell. It has made me realize it isn’t things or surface conversations that connect us, its real life pain and emotion that help us realize, we aren’t that different from each other. To realize we all have something to offer, because noone has the same story, with the same perspective and emotion as yours has held.

So I leave you with this – if you had to think of all the stories you had to tell, what one do you want people to know? Will you tell the one people see from the outside just to please their pallet? Or will you tell them the one that sits deep in your soul? Will you show up in the world in the way it wants you too, or will you show up in a way that offers a deeper truth? Are you allowing old stories to play on rerun, numbing what lays beneath the surface? I have many stories to tell over my life, and especially the past 10 years – all bits and pieces of me, but none of which own me. The story I want to tell 10 years later isn’t the same – in fact its message is very different – this time, its one of awareness, hope and liberation. And for that I am grateful. So thank you Josie for the never ending lessons as I navigate through, thank you for the reminder that your death is not for nothing and that all things can be born again if we allow them.

 

Outside In – ED with Angie

/ Revolution.07 / 3 Comments

kayla-collage

For anyone that has ever watched anyone die of any type of a disease, you know how absolutely horrific it can be. To know that something is stronger then them, and even with significant help of modern medicine, they’re unable to fight it off or overcome it. To watch someone try and fight so hard  for something, that in the end can takes their life, is beyond heartbreaking. To know that no matter how hard you try, or the resources you put in front of them, it’s nothing compared to what has overtaken them. A feeling of helplessness overtakes every part of you as watch the disease win.

It is through Mallory and Kayla’s stories that we are given the opportunity to learn from those who have walked this lonely path and bring forth awareness to our own words and actions regarding such matters. Because even though it may be possible that your child won’t directly deal with these diseases, there’s a good possibility that one of their friends may. After all, 1 out of 2 girls between the ages of 11 and 13 consider themselves overweight. By you being educated on these topics, you can have simple conversations with your kids, spouse, students, grandchildren, nieces and nephews – which in turns opens the door for conversation about a friend they may know that is struggling. This conversation plants a new seed that trickles down, making others around you more aware of what they’re saying regarding body image, while also being a support for their peers. You are planting the seed of knowledge, awareness and hope – which is something we need more of in this world. This isn’t something to be feared – for fear only closes the door of safety, leaving adults and children alike to feel even more isolated and alone.

When we choose to break down the barriers of these conversations, we open up room for something bigger, an opportunity to offer support and acceptance to others. I hope you are able to take from all of these entries, a new respect for those who have endured this disease themselves, as well as those who have stood on the other side – forced to watch those they love be overtaken by something, that while they thought they could control, only in turn, began to control them. Here are their stories.

My name is Angie Murphy and I would like to share with you our story of how an eating disorder turned our lives upside down. Anorexia Nervosa by definition is an emotional disorder characterized by an obsessive desire to lose weight by refusing to eat. This crippling disease took the life of our oldest child, Kayla, on July 13, 2013, 18 days before her 23rd birthday. Kayla was everything we could’ve asked for, she slept thru the first night home from the hospital, potty trained at 21 months, and learned to talk at a young age. As Kayla grew up she always appeared confident. She tried basketball, played in band and was even named Miss Kellogg. In doing all these things Kayla began to strive for perfection, which in time, we learned that perfectionism is or can be a starting point of an eating disorder. I remember her doing home work in 9th grade, she would be up all night re-writing things to make sure it was perfect. This perfectionism started to play a roll in her health, she would be up very late every night, not getting enough sleep, not eating properly, and always stressed out. We as parents, nor her teacher understood what was going on. We just thought she was concerned about getting good grades for college and was working way too hard to obtain them.

It was right before Kayla started 10th grade, that she made a comment about wanting to starting eating healthier. This wasn’t something that seemed alarming because we were always on the run and had a tendency to not always eat healthy. By January Kayla had lost a lot of weight, again we attributed it to the stress and anxiety from all her home work. My husband, Marty, said she needed to see a doctor to figure out what was going on. It was at this time the doctor diagnosed Kayla with an eating disorder and that some of her organs were in the beginning stages of organ failure. Our Doctor then referred us to Park Nicollet for admission to treatment. Kayla was so good about cooperating, but too far under the control of the eating disorder that she didn’t really understand how deadly this disease could be. But then again, none of us really did.

As we were going thru this whirl wind of facing the reality that our daughter has an eating disorder, we were so confused. My sister-in-law, Jean, also had an eating disorder (anorexia nervosa and bulimia), being that we didn’t live near her, we were never educated on the mental illness. Like so many others, we didn’t understand why she just couldn’t eat.  Kayla and our son seen how the eating disorder would cause someone to act in such a self destructive manner. But because we were not educated on the mental illness none of us understood why it couldn’t be fixed. We didn’t understand the signs that had built up to  the point of where Jean was at. This really goes to show you how naive we were to this mental illness. Eating disorders were something people didn’t talk about. That’s why it is so important to talk about them – to stop the stigma and to educate everyone on the early signs.

When Kayla was admitted to Park Nicollet in the Twin Cities we were so scared. She was there for several weeks, but bound and determined to beat it! After inpatient and weeks of driving daily 180 miles round trip to the Twin Cities so she could do outpatient treatment, she had almost restored her weight and learned coping skills on how to fight off what is referred too as the eating disorders “voices”.

Between 10 and 12th grade Kayla worked with several psychologists, some helpful more helpful then others, but during this period home life was horrible. Between the four of us, I felt like I had to always be there to make everyone’s life better. My husband and son wanted to help, but that usually ended up in arguments. Being so naïve to the disease, we really didn’t know how best to help Kayla at home. Eating disorders are so difficult. Sometimes when you try to encourage them, you are actually feeding the disorder. The tension at home was an everyday occurrence. We are a very close family but there were days I didn’t know if we could continue to live together. Our son didn’t really say a lot, he watched, but I know it was very painful to see his sister go through this. Fighting this disease takes everything out of them and you. 

Kayla was in and out of treatment several times over the four years she was in college. The most frustrating thing was when she turned 18 and legally became an adult. The doctors no longer had to tell us anything and Kayla could discharge herself from treatment when  she wanted. She wanted to get better so bad but the voices were so strong that it was hard for her to always make decisions that were most beneficial for her overall health and well being.

There are only a few treatment centers in Minnesota and Wisconsin that work specifically with eating disorders. The problem at that time, was they were so inconsistent on treatment methods. Many would get the patient to a stable point and then release them to go home. There wasn’t much guidance on helping the patient and family find a qualified psychologist or psychiatrist. They didn’t teach you how to go grocery shopping or how to really cope outside the treatment center. There wasn’t family education centers or meetings like they have now, that help you better understand the disease, or support groups to speak to other families that are going through the same thing, for additional support.

I think my husband was more realistic about Kayla’s passing, he never said it, but always worried about losing her. I was always a little more optimistic. I spoke with Kayla everyday and she was always trying to fight the voices, reminding her to stay strong. We would search for new doctors to help in anyway possible. Because the disease was so strong on top of a genetic link, I didn’t think Kayla would ever really have a full recovery, but I never imaged it would take her at age 22.

We will never have the answers to understand why this happened. After Kayla passed we were amazed by how many people came forward and said if it wasn’t for Kayla and her story they wouldn’t be here today. Kayla was such a caring and giving person. She touched so many lives, and that is our inspiration. Through this whole journey she/we were never ashamed of what we were going through, so we will continue to tell her story and continue to reach out to help others that are also dealing with eating disorders. We will continue to help educate where we can, continue to help raise money for the National Eating Disorders Association and The Emily Program Foundation in the Twin Cities. Kayla lived by many sayings, but two of my favorites were – “be the best you can be today because tomorrow is not promised to any of us” and “we can stand still and watch, or we can stand strong and fight”.

Do you feel there are other driving factors that reinforce eating disorders aside from genetics?

Yes! Eating disorders aren’t the average dinner table conversation. Which is why it is so important to talk about them – to stop the stigma and to educate everyone on the early signs. Eating disorders can show up for a variety of reasons, they aren’t just learned behaviors, it can be genetic, or how they are “wired”. I also believe society plays a big role in these types of diseases. There is a lot of pressure to be beautiful, to be thin, to be smart, and to be successful. This is a lot of pressure for our children at any age and I feel these are also triggers that start the process. Anxiety, depression, OCD and/or feeling as if they can’t measure up or aren’t good enough, can be some of the beginning signs of eating disorders or the onset of mental illness. As they grow and these issues and thought process strengthen, they start to control their life. We start to look for ways to find control in our lives and as a result, our body chemicals used for coping – diminish. This makes it the perfect time for an eating disorder to develop. What starts as having control over something, eventually begins to control you.

This isn’t just something that effects girls either, I do feel young boys are taught that they should have that perfect “10” for a girlfriend. This leads to a lot of bullying to those that don’t fit the bill or measure up to the standards that our society, communities and peers place. It is both genders that have this perception of being “perfect” in all realms. There are continually more boys/men that are being treated for eating disorders as well. We see this when we look at the pressure sports puts on our athletes. Telling them they need to be lighter to wrestle or leaner to run faster. It’s another aspect of their life they feel pressure from and one they may feel they have more control over. This plants a seed that weight is the driving force behind their performance. We, as a society, put attention in places where it’s least effective and needed, planting seeds that grow into something damaging. Which begins building forests of judgement and stigma around important and necessary issues such as these.This may not be something that affects everyone, but with millions suffering from eating disorders it is definitely something to be concerned and talked about.

Have you noticed an increase in education around Eating Disorders since Kayla was in treatment?

Yes, it’s getting there. They are now working on requiring teachers to be more educated on the signs that may lead to early detection of an eating disorder. Early high school age is a common time for eating disorders to develop but there is no age limit. Eating disorders have been diagnosed in children as young as five, but people such as Jean, who passed away from Anorexia Nervosa wasn’t diagnosed until she was in her late 20’s. Again, it starts with the conversation around it, just being more aware of it, asking more questions, and being advocates for each other – within the homes and the schools. We are gaining ground, slowly but surely.

*If you or anyone you know may struggle with a possible eating disorder, please know there is resources and help! Please contact any of the following

NEDA (National Eating Disorders Association) https://www.nationaleatingdisorders.org/find-help-support

The Emily Program at https://www.emilyprogram.com/locations/minnesota

Foundations such as these are vital in our communities to help others struggling with Eating Disorders. Just as we help fund many other research facilities, these programs are equally important and often don’t the attention they deserve, due to lack of awareness. Please consider donating to The Emily Program Foundation at https://app.etapestry.com/onlineforms/TheEmilyProgramFoundation/donate.html

**Please share this important story and topic on social media, for you never know who could benefit!**

Siblings Tribute – Jamie and Kristy

/ Revolution.07 / Leave a comment

kristy collage 2

Brynn and Jamie both sent me their responses to the entry on the same night. It was quite astonishing how many similarities there were between their stories. Although the response has been overwhelming in regards to the tributes, it saddens me to know how many people can truly relate to this heartbreak. Either by enduring it themselves or watching someone close to them endure it. It’s painful in all realms, each in their own way. But at the end of the day, our hope is that those reading this have a greater sense of hope in knowing they aren’t alone in their grief, their support or their fight.

*Disclaimer: A box is tissues is recommended – you’ve been warned! 😉

You and your sister (names, background, ages)- who were you both pre-diagnosis?

My name is Jamie (Puetz) Groebner, I was 29 years old when my sister Kristy Puetz was diagnosed with Ovarian Cancer at the age of 37, she fought a miraculous 9 years before passing away by my side on February 21st, 2014 at 4:15 am at the age of 46.

Who were we??  Very stubborn red heads, always looking for a good time!!                  Growing up with 8 years between us, we fought about everything… she was in charge of me a lot since my parents both worked outside the home.  When she was mad at me she would often pinch my cheeks together with her thumb and pointer finger.  I hated it. I usually ran from her, down the street to John Deere where my dad worked as a parts manager, crying my eyes out with sore cheeks. I knew he would let me stay with him until he was off.

As we grew older, we found out fairly early on in our friendship that we did a lot of the same things regardless of the fact that we lived miles apart.  We liked the same music, we sang with emotion in the car, we were passionate about our friends and their lives.  We were social butterflies at heart – we loved to plan a party, loved to be the life of one, and couldn’t wait to hit a happy hour somewhere! And it wasn’t for the fact of getting drunk, it was because being with our friends and laughing was so uplifting and we loved that! We loved making memories with our family & friends.

What battles (disease, metastasis, how many times in remission/relapse) did she endure and for how long?

I worked in the Baldwin Building at Mayo Clinic Rochester at the time of her diagnosis. My supervisor at the time seemed so cold hearted by not allowing me to go to Kristy’s appointments. That day when my pager went off, I picked up my phone and instantly could hear the gasps in Kristy’s voice when she paged me, through crying gasps she breathed the words cancer; and I immediately went into panic mode, I left work and ran down to the second floor to the room she was in with our family physician. I told no one where I was going because at that time none of it mattered, I just needed to be with her. The search began the next day to find the primary tumor. It felt like time stopped after days of invasive tests and biopsies, she was diagnosed with Stage 4, Grade 3, Epithelial Ovarian Cancer. The tumor had grown the size of a cantaloupe on her ovary in her abdomen. Our family hit rock bottom once we were given the grim news. Surgery was planned for March 10th, 2005.

I think back to the morning of surgery. At the time, my husband Ryan and I were living in Mazeppa.  Kristy and I talked on the phone most of that evening, as she packed.  I met my parents and her at the hospital the next morning, and immediately started taking pictures of her because at that time, her Oncologist told her she had maybe a year, if not less to live.  I started documenting everything that day. The updates, the calls, the pacing, I remember that feeling of my stomach turning inside out, sort of the way it feels writing this, complete torture. The worst part – I had to attend a mandatory meeting with HR at work or I risked losing my job. In the middle of that meeting I started crying, I couldn’t believe I was sitting there and not with my family. I said something along the lines of ‘while all of you are worried about who’s doing what at work, my sister is in surgery’, (I may have said a few other not so appropriate words as well) but I was so upset. I walked out, ran back to Methodist hospital, thinking for sure I was going to lose my job.

I just made it back to her room when the resident surgeon came up to talk to us. They opened Kristy up from sternum to pelvic bone and searched through her entire cavity to make sure they got as much cancer as possible. My first reaction was to hug her, that’s when the tears fell. My parents and brothers were there, each of them walked away engulfed with their own emotion.  We heard the elevator chime… I can still see her rolling down the hall at 6pm. She was so swollen, the largest I’ve ever seen her, all of it fluid. We were warned she would look like this, however it was so hard to see her look so different, (in the operating room they inverted the bed to help with the positioning of her intestine so they could work on detecting all of the cancer) little did we know this would be the new norm of her many hair and body changes.

I started talking to her right away, telling her I loved her, and that they got it all… I’ll never forget her eye opening just a little and tears fell… she heard me loud and clear. That night I slept in a chair, not a recliner although I wished for one, it was a wooden desk chair, but I kept telling myself, the pain I feel from getting a bad night’s sleep is nothing compared to what she is going through.

The next day I asked for a bigger room and by the third day we upgraded to a larger room, and I finally got a sofa sleeper. We watched so many movies, when it was nap time she always told me to put in Legal Eagles with Robert Redford in it…. that usually had us both sleeping in minutes! I never left the hospital during her stay. I helped her shower which may have been a true test of sisterhood. 😉 She had 3 drains coming out of her abdomen and it took her a while to be able to stand up without excruciating pain. Until she had the drains removed and enough strength to stand on her own I would get part way in the shower with her to wash her while she held on to her drains, shaking in pain, crying for me to hurry. My tears silently falling at the situation in front of us.

She even had me make a photo guest book of all her visitors, taking each person’s picture as they stopped by or as flowers and gifts were delivered. I had them sign a get well note on each page where their picture would be, and we put it together after she was dismissed and before she started chemo. Through it all, there were lots of tears, and lots of laughs too. She made the best of it, and never let people think it was as hard as it really was.

Kristy started chemo 6 weeks later, in April of 2005. From there it was recurrence in 2009 revealed through a liver biopsy, followed by a different regimen of chemo. In January of 2011 it was discovered that she had mets to liver and in the right lower quadrant. That round of chemo had to be discontinued due to severe dermatitis. Then it was hospitalization for a small bowel obstruction, which was the first of a few to follow. By November of 2011, the Ovarian cancer showed up again in the CT of her abdomen and pelvis. More chemo, more hospitalization, more operations, more nausea, more struggles, more tears, more heartache, more fighting. This roller coaster continues on and off with multiple hospital admissions until there were no more options.

Explain what impact this had on you personally and how it changed both of your lives/perspectives, good and bad.

I lost my best friend. The first half of our lives we argued and acted as if we hated one another…actually I drove her crazy, yet all I could think of was being just like her. When it changed, we had a connection like I’ve never had with any friend. Only sisters know what I mean when I say that, and I don’t mean to say it in a bad way because I have some truly great friends who I care about as if they were my sisters.  But it does not compare to the bond I had with Kristy, one that was built long ago. The bond that holds our past, our childhood, our family trips, our countless phone calls, and an understanding of one another, our bond, was solid as any iron or stone. Unbreakable.

The treasures are the countless strangers, physicians and nurses who became our friends and the connections she made at the chemo, which is more like a gas station really. The countless beds and chairs stationed in one area where everyone checks in to get filled up on poison. Kristy though, she changed the tempo on Gonda 10… if you ever visited her there, you always had an idea of what room was hers. It was always the loudest!  And she didn’t like to sit in the chairs much unless she was only going to be there for an hour or two. In and out she’d say, I want to hit happy hour at Jonnys! And if her cycles ran longer than that she usually asked for a room with a bed, because the pre-meds would make her tired. After her nap you would usually find her up walking the halls with her IV pole checking on others she had met the week before. Sharing a joke, there was always laughter  or, her calling maintenance to come fix something she seen was wrong. Everyone loved her. She brought social hour to chemo and she made it better by just being there.  She yearned for hope from others yet she gained so much more.

Genetics is a huge factor. After three tries we finally found out why she got it. The Gene mutation BRCA1. If my sister wasn’t so aggressive in her fight and in her curiosity of ‘why me’ … we wouldn’t know.  And with that knowledge she has saved me by making me promise her I would get tested. To think all the while I was trying to save her, in the end she saves me. Wow – that is love!

What did this consist of for you personally – to recall being a cheerleader on the sidelines, observing, but being unable to save them? (Ultimately the trauma of being the survivor).

From day one, I researched, I did everything I could have done to save her. I called all over the world looking for the right clinical trial. Each one would get shot down by different doctors due to a certain chemo she had taken, or the numbness in her feet and hands, the length of her disease, the stage, where it had metastasized. Each time I thought I found one that might work I would send it to a team of doctors I worked with who were my backbone of soldiers with their medical education. They would compare her to the study and we would all determine what the outcome would be.  I, of course would not take no for an answer so I would enroll her, only to find out later she wasn’t a match. I needed concrete information to prove me just what they had told me all along. Her cancer sucked the energy out of both of us. Watching someone I care so deeply get knocked back down after enduring so much. Time and time again she inspired people by keeping that smile on her face, even when deep down, she was miserable.

The illness itself is exhausting. Her only chance was the poison that was pumped into her body, and she had to find the strength and courage to stay alive through fatigue, vomiting, pain and sadness. She just did what any of us would do. Fight like hell to stay alive. Because that is all she wanted, was to live, love and be happy. The worst part, the suffering in the end… let’s be honest – it is what it is right….suffering? The cancer starved my sister. Suffering. It produced road blocks in her gut and her gut stopped working. Suffering. She could no longer eat or absorb nutrients. Suffering. She had a peg tube placed in her abdomen to help relieve the pressure so she didn’t continue to vomit multiple times a day. Suffering.

Do you feel you’re meant to do something differently with your life because of her death? And if so, what is your hope/goal? How do you want her to live on? 

I was in nursing school prior to both my mom and sisters’ diagnosis. I was released on a compassion leave from the program when my mom was diagnosed with terminal small cell lung cancer on March 8th, 2013.  I returned in the spring after her death, however my return date was only a few days after my sister was discharged home on hospice.  I wasn’t able to finish then either and was given my second check mark, meaning I wasn’t allowed to return. If I were to ever be a nurse I needed to start the program over. I felt as though I failed my family, my goals, and it was so stressful, but my heart was broken. School didn’t matter as much as my mom and sister – nothing does when you’re in that situation. Thankfully, I learned enough in school to know how to care for them and understand what was going on with their bodies, and to feel confident enough to be able to follow their wishes to die at home. For years my role was to help Kristy fight her cancer, then I was helping my mom too.

I’ve definitely changed. I was by her side to help her, guide her, and cheer her on, lift her up when she was at her worst, give her hope, and coach her through. When she died my caregiver role was over. I was lost… numb. The pain was like a dagger being shot into my heart and twisted a hundred times.  Over time, when I thought that pain would subside… I would be forced to be reminded it hadn’t… it’s only gotten more bearable. She was such a good person, sister, daughter, and an amazing aunt to my kids, and nephews, and Godmother to my son. For months I felt like I was walking around in a fog. Then I had genetic testing done only to find I was BRCA1 positive too. One blow after another, the hits just kept on coming. Surgery, menopause, patches, depression, wow…

Each day I think about her, and I think about what little I have went through and how awful I feel one day and how great I feel the next. I can’t even fathom what Kristy went through but I will say, I have learned how she put on her mask each day and made the best of it. I return to the promises I made to her that I would stay involved in her fight. I want to continue to help spread awareness to others about this horrible disease.  I hope as time goes on I can actually stand in front of an audience and not cry while I talk about her because I miss her so much. My goal is to continue to be an advocate for others by staying involved in the organizations that she was passionate about.

Kristy was my best friend, my sister, my rock. I thank God each day that he chose us to be sisters…

_______________________________________________________________

In closing I want to share a wonderful note sent to her from a physician friend of ours: it’s pretty powerful so be ready… 

First of all, please accept my condolences for your loss.  It has been a terrible year for the Puetz family.  It just a year ago when Kristy’s mother was diagnosed with cancer and died within only a few months.  Kristy had a different course, living 10 years with cancer but, in the end, it also took her from us. We are here today to mourn the death of Kristy but also to commemorate her life.

I met her through Jamie around the time of Kristy’s cancer diagnosis and over the years have had the privilege of being her friend. We talked about many things but more than any subject was about how cancer affected her life. She was treated initially with the hope of cure but when the cancer came back the first time she realized she would never be cured. Being told one has cancer is an enormous shock because it is our expectation that our bodies will keep on working. When young, we don’t even think about our health.  We have injuries, infections, and so on but we always assume it will be ok and we will recover. Being told one has cancer changes this forever because the body failed us in a way it was never supposed to. Even when cancer is treated successfully, we are never the same.

Kristy handled her cancer better than anyone I have seen. She seemed to always look at the better side of life and, although she had her down days, she went on with the expectation she would be well.  Some people put their life on hold thinking they will resume it when the cancer is cured. They forget to live when they should be celebrating every day they have. Kristy did this; she had an illness but she was well.

I ask my patients if they have a spiritual part of their lives. What gives their life meaning? For some it is their faith but for others it is family, work, health, hobbies, volunteerism, pets and so on.  Each person has a different answer, but the basic question is “Why do I get out of bed each day?”  Because we “have to” is not a good reason.  We get out of bed to do something, see someone, accomplish something; we look forward to the day.  When health and other life changes occur, what we have relied on to give us meaning may no longer be possible. This may be a crisis because these things serve as our energy supplies and are the reasons should want to get better. The ability to find new reasons when the old are no longer possible is resilience. Kristy was amazingly resilient and why she is an inspiration to many. She found new reasons to live as long as her body would allow.

Funerals are for the living. We honor the dead by coming together to mourn our loss but also to celebrate their lives, remember what they mean to us and to tell their stories. Funerals should also remind us that we too are mortal and someday people will gather to remember us. We all should live our lives with this in mind in all our dealings with others, in our coming and going, in how we behave, and determining what will our legacy will be? We need to live mindfully which means being mentally present each day. Some people spend much of their time thinking about the past with regret or anger. Some spend all their time thinking about the future worried about what will happen and our inability to control it. We don’t, however, spend much time thinking about the present, yet it is the only thing we have.  I think this is best said by Jesus in the Sermon on the Mount in Matthew 6 25-34.

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Who of you by worrying can add a single hour to his life ? 28 “And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

We also need to live our life remembering it is not our own. Our life is a gift of God and we need to be ever mindful of Him.  We should live our life seeking Him and his righteousness because some day we will answer to Him about what we did with our life.   

I am sorry I cannot be there with you today but my thoughts and prayers are with you in this time of loss.

Larry Bergstrom

_______________________________________________________________

This is a speech that Kristy had written for the Corn on the Cob Day Pageant.

This is a shortened and modified version to bring out some of the humor that Kristy brought forth in her every day life. While highlighting some of her own strength and bravery – that she worked so hard to bring forth during her own trials and tribulations. I have no doubt it was God’s will to help her help others during their journey, along with her mindset and attitude – is what brought her far beyond that original grim diagnosis of less then a year to live. To be the light through the dark, the humor through the pain and the rock through the unsteady waves.

“I always thought when I lost my hair I would be devastated.  Well that wasn’t so bad….the thing I missed most about losing my hair was losing my eye lashes.  I just felt naked without them….the best part was I didn’t have to shave my legs and my skin was so soft! I know there really isn’t any “best” part about cancer but if I had to pick one that would be it!!

Cancer is scary, it’s a scary word to anyone and living with it isn’t easy, but I tell myself that I am not going to let this cancer change me or anything I liked to do.  IT WAS NOT GOING TO CONTROL MY LIFE!

 I was told that my life would be like riding on a roller coaster.  The cancer would be active then dormant, I’ll go on a break and so on and so forth.

Cancer is devastating………………………..to everyone touched by it.

I have learned a lot throughout this journey.  There have been a lot of tears but there has also been a lot of laughter.  I’ve met so many people, and shared my story to others who get diagnosed so they know what to expect… or what to try that has worked for me – even though each case is different.  And if you know me, or follow my caring bridge page, weird things tend to happen to me and all you can do……….. is just laugh! Because I try to live my life to the fullest each day, and I try not to let this disease or anything else bring me down.

The theme for you is “home of the brave’ … and each of us is brave in our own way, my bravery comes from deep inside myself knowing I’m not giving up…..knowing I have an enormous support system in my family and friends.

For the girls sitting up here tonight…. Courage and bravery are not just about facing risk, but also, afterward, about going back to the people you love, your community and sharing your experience, and encourage them to be strong.”

Kristy

*If this resonated with you, feel free to share on Social Media – not only to raise awareness but to bring hope to any who may be struggling*

Siblings Tribute – Brynn & Jaime

/ Revolution.07 / Leave a comment

Blog-tributebrynnnjamie

There isn’t anyone that doesn’t know of someone that has battled a disease at some point in their life. Whether it be cancer, mental illness, eating disorders, cardiovascular disease, Alzheimer’s, alcoholism, or addiction – to some degree, disease is disease. Some have triumphed over their struggles, while others fought the battle until the end, only to lose the war.

Although we lost our siblings to different diseases, we still watched them endure hardships while fighting against something that, in the end, was stronger then them. We, as family, were forced to sit on the sidelines, unable to make their physical, emotional or mental pain cease. From various forms of chemo, radiation or surgical treatments to different anti-anxiety and anti-depressant medications- they were forced to put their mind, body and soul through some excruciating pain just to be able to add another day to the calendar.

While we all know of these people, we don’t really, truly know these people. We’ve all heard of stories pertaining to disease and death, however, it’s rare that we hear or see what happens behind the scenes. The lasting impact it has on both the patient and the family and the roller coaster of emotions that take place along the way. From the fight to the triumphs and back to defeat, from what seems like never ending decision making, just to hope it was the ‘right’ one, just to doubt it and yet be forced to trust it all at once. From the overwhelming support of those around you, only to feel so alone in the crowd of supporters. From the distress on so many levels, only to hope it’s worth every ounce of energy put forth by everyone. From the tears to the triumphs, from overwhelming sadness to finding laughter in the little moments, the heartache to the joys of the smallest things you never noticed before, from the heaviest of guilt weighing on us down to trying to see the bigger picture through the diluted veil. From watching them in pain in every realm, to one day being forced to feel much of that same pain. This is a journey that so many – too many – experience, but one that often times doesn’t get brought up in the rawness in which is truth for many. And I want to bring forth that rawness, that truth and the awareness behind it.

I feel truly honored to be able to share this ‘Siblings Tribute’ with 3 other strong, brave, compassionate and determined souls to bring forth both their siblings stories, as well as their own. Our hope is that this can offer a sense of peace for those who are struggling in any way – to know that you aren’t alone on this journey, whether you’re the one who’s in the ring for another round to fight, or the cheerleader on the sidelines – your story matters! This is Part 1 of a few entries and I am truly so grateful they agreed to do this with me! Although these entries were excruciating to write – I’m excited to share both of their stories, as well as their sisters battle against a disease we’re all well aware and hear far too much about – cancer.

*Disclaimer: a box of tissues is recommended – you’ve been warned 😉

Jaime collage 2

“Sisters from the start, friends forever from the heart.”

You and your sister (names, background, ages)- who were you both pre-diagnosis?

My name is Brynn Ashley Soderlind. I was 31 when my sister Jaime Teresa Gartner was diagnosed with breast cancer on October 14, 2011. Jaime was only 32 years old. I was 8 months pregnant with my first child as I sat in the waiting room of the doctors office. My three year old nephew, Jaime’s son Jameson, sat on my lap on a blue upholstered bench. He was such a patient child. He held my hand and we sat there mostly in silence. It seemed like years. We waited and waited and waited. Finally, three hours later, Jaime came down the dark grey hallway. Her dark brown long hair framed her beautiful face like a picture. I remember her brief eye contact with me and then her eyes quickly fixed on her son. Tears were pouring down her face as she opened her arms to meet his little body. He fell into her with relief. She looked to me and smiled as she wiped her tears quickly from her cheeks and shook her head “no”. I knew right then that the massive lump in my sisters breast wasn’t a cyst or an enlarged lymph node. My throat felt tight as I swallowed hard. My sister had cancer.

We grew up with a strong sense of self. We lived out in the country on a hobby farm with our loving parents and grandparents, some goats, chickens, pigs, dogs, rabbits and a blind cow. We had great company each day with our siblings- Ericka, Ian and Seth- and the neighborhood kids our mom babysat. We loved to hike on the land and explore the 132 acre woods that we lived on and absorb all that nature provided to us. Jaime and I loved to take our Red Ryder BB guns out and shoot targets that Ian would set up for us. Life was easy. Life was so good. We loved to go to Whitewater State Park and as teens we would spend most of our summer hiking and swimming. We also loved to travel and took several road trips together and with friends. We did almost everything together. Where there was Jaime, there was likely Brynn.

We would end up moving to Colorado together in 1999. We loved the mountains. We loved the experience but eventually we ended up back in Minnesota together.

Almost a year before her cancer diagnosis, Jaime and I were in Esthetician school together. Jaime and Jameson lived with my husband Adam and I in our condo. Jaime and I had a long history of sames. We had the same jobs, wore the same clothes, loved the same foods, had the same friends, lived in the same cities, read the same books, listened to the same music. Her and I shared a bedroom, secrets, underwear, makeup, cars, lunch money, dreams, aspirations, germs but mostly, we shared genetics. I was encouraged to have genetic testing done shortly after my 33 year old sister had a bilateral mastectomy. I knew that if my sister had breast cancer at 32 years old, I had a pretty good chance of getting it too. When I got the genetic counseling and testing, my daughter was a baby and still breastfeeding. I remember the fear surrounding a positive genetic mutation. What if I too shared the BRCA2 mutation? I knew for me, it would mean a mastectomy and possibly a hysterectomy. That meant no more children. I was ok with that as long as I had an upper hand on controlling the disease.

I had a strong feeling that I didn’t have the mutation. I soon learned that Jaime had the same feeling. Sure enough, I tested negative for the BRCA2 mutation. I cried so hard when I heard the positive news; half of me was relieved and half of me felt guilty. I know it may seem strange, but it was like we had always shared everything and now we didn’t. And I was happy and devastated all at the same time. You see that’s the tricky part about disease and being a caretaker to someone you love so much. The cancer may have taken over my sister’s body, but it also consumed me, differently, but still the same. It completely changed everything.

I thought about cancer all day long. I thought about ways to help heal. I threw myself into research and tried to educate myself as best as I could. I attended every appointment. I quit my job to care for her full time. Her cancer became my cancer. Her life sort of became my responsibility. I’d lie awake at night running through all of the “to do’s” Did she take all of her meds? Did she eat enough? Were all of her appointments scheduled? Did we write down all of our questions? I learned as much as I could about her tumors on my own time. When they told her that her tumors were ERPR positive, HER2 negative, I researched. When they told her that she needed  radioactive Theraspheres implanted into her liver, I researched. When they said there was nothing left to try, I researched. I always wanted to find a way to save my sister’s life. I wanted her dream of becoming a grandmother to come to fruition. I wanted to see her pain-free and dancing in the woods at night like we used to do when we were young. I wanted to travel again, hike, shop, sing, learn to knit and play guitar with her. She always wanted us to take knitting classes and guitar classes together, but I guess we never made the time. I wish we would have figured out how to make it work. Especially guitar lessons. We both loved singing and music so much. I imagine how therapeutic it would have been to be able to play guitar and sing together during her 4.5 year fight against cancer. We both had our own guitar and knitting needles, but never learned. Now, I am ready to take guitar lessons. I will learn to knit this winter. The thing I’ve learned is that life doesn’t wait for us. We have to take advantage of the time we have- right now- today. If there is something you want to learn or experience, go for it. Set goals! Chase dreams! Jaime’s goal was to make it to Mother’s Day. My goal is to make sure that women aren’t dismissed when they find a lump in their breast, at any age. Jaime was dismissed by 3 different doctors before the fourth ordered a mammogram. 3 different doctors! None of them thought she had cancer because she was young and because they told her cancer didn’t hurt, so her lump must have been a cyst or something. It will take me a lifetime to get over the dismissal she received from those individuals. If a 31 year old woman complains of discomfort and has a sizable lump, it should be taken seriously. Mammograms save lives. Every lump should be examined thoroughly.

What battles (disease, metastasis, how many times in remission/relapse) did she endure and for how long? Explain what impact this had on you personally and how it changed both of your lives/perspectives, good and bad.

Jaime possessed a natural ability to find the positive in situations. She never complained about her circumstances. Not one time. She never had a pity party. I’m sure on her own time alone she often struggled, but she never divulged any of those feelings. She made light of the adverse reaction she had to steroids during her radiation treatments. She would joke about how the development of Cushing’s Syndrome was the worst part of the entire cancer experience because she had a 100 pound weight gain which was painful and left her almost unrecognizable. Her skin began to split in areas from the rapid weight gain. Her body ached all over.  They learned that the steroids they were giving her for pain control caused her adrenal glands to fail and shut down. Jaime didn’t mind loosing her hair. She liked hats. She knew she could manage the mastectomy with future reconstruction surgery and prosthetics. But Jaime did not know how to be ok with the Cushing’s Syndrome and her physical immobility and intense pain. In my opinion, the most challenging piece through her cancer journey the rapid weight gain and pain that accompanied it like an orchestra.

Jaime was diagnosed in October of 2011. She started chemotherapy quickly. Her lump was so invasive and so aggressive that they feared removing it without hitting her with a cycle of chemotherapy prior to surgery. Jaime had 7 rounds of chemotherapy between October 2011 -April 2012. On May 11, 2012, Jaime underwent a bilateral mastectomy and sentinel lymph node dissection. They inserted tissue expanders inside the chest wall to reconstruct her breasts with implants. The expanders were placed behind the muscle of the chest wall. The idea was to slowly stretch the skin by filling the expanders with air overtime to accommodate an implant.

We moved into her apartment in May after her mastectomy to care for her and Jameson. She couldn’t be alone and certainly couldn’t care for her three year old son by herself. I spent my days with Jaime, Jameson and my 7 month old daughter Poppy. I took her to appointments, cared for her and the children and did all of the normal day to day tasks and errands. I had so much help from Adam at night and on the weekends.  Following her discharge from her mastectomy, Jaime’s pain continued. She had so much pain. She was so weak and tired. Her surgery sites began to show signs of infection. I called the clinic with great concern. I was reassured several times that what I was describing was “normal healing”.  When her pain became unbearable, I brought her into the ER at a different hospital. She was quickly admitted after examination. She went into surgery the next day to  have the tissue expanders removed because she was septic. I felt so angry and so frustrated. I felt like I let her down. I had called several times with concern. I was always told that it was normal. Now she had a major setback in her recovery.

After that surgery to remove the expanders, Jaime never really felt good again. Ever. It was like the infection had gotten into the core of her being. She was so unsure. Her days and nights consisted of doctors appointments and pain management. After that surgery she went six months without seeing a doctor. She moved to Waseca and rented a house. She and Jameson lived right next door to our mom and stepdad. She just never felt good. Mom and Dad expressed concern about the lack of medical care and lack of follow up. Jaime was in a deep dark depression. She seemed to feel like they did everything they could do for her and this was what she would endure. We felt that she should be closely followed with scans and check ups. Nothing was scheduled. She had no desire to go to the doctor. Then in November of 2012, Jaime came to visit us in New Hope. She was in so much pain in her hips and low back that she could hardly walk. The pain was constant and ibuprofen wasn’t even coming close to touching it. Adam encouraged her to go to the ER. After some persuasion, she agreed. The ER dr in Plymouth MN listened to her history and decided that a pain injection of Tordol  to her hip would suffice and he sent her home. No scans were ordered. Her blood work showed elevated white cells and all of her numbers were either a bit high or low in almost every category. They knew she had cancer earlier that year. Why wouldn’t they have investigated her complaints and concerns more thoroughly? She was a 33 year old single mother with a history of breast cancer. I will never understand the lack of care. Fast forward a month later, she has similar complaints of low back pain and hip pain. Adam takes her into the ER again, and she gets the exact same diagnosis and treatment. They say it’s likely menses pain and they encourage a hot bath and ibuprofen. That was in December 2012. A moth later, on January 21, 2013, she fell in the bathroom in the middle of the night while visiting us in Duluth at our new temporary home. Jaime managed to crawl into the living room where she was able to wake us with screams like I have never heard before. After helping her up, Adam got her into our SUV and drove to the ER at St Lukes. At 3am on January 22, Adam texted me that he and Jaime were meeting with a neurosurgeon and likely she needed spinal surgery to fix her broken lumbar. He also mentioned that they were quite confused how she managed to break her lumbar by falling in the bathroom since the lumbar is the strongest part of the spine. After laying flat for 4 days in a body brace, the biopsies revealed that Jaimes entire skeleton had been infiltrated with breast cancer. I remember the look on her face when they told her that her breast cancer was a stage 4 and terminal. She looked relieved. She looked frightened. She looked so young and so lovely. I was engulfed with sickness and anger. Terminal breast cancer?!! How did this happen?

After she broke her back, she realized that St Lukes hospital in Duluth Minnesota was where she was meant to be. She began her care and treatments of weeks of radiation, many surgeries, continuous chemotherapy, injections in her neck and back and pain management. The nurses and doctors were incredible at St Lukes. She felt cared for and loved and validated. Her pain was finally explained! She could finally trust medical staff. She became so close to her oncologist, Dr. Based Goueli and her nurse Terri. They gave her the greatest care and love. She trusted them. I trusted them. We were able to navigate through all of the bad news together and even in her final days, she felt comfort and trust when she talked to Dr Goueli or Terri specifically.

During her battle, she also had to have a hysterectomy. Pathology of her ovaries detected breast cancer. From there, Jaime’s cancer spread into to the liver. Her care team kept up on her treatments of chemotherapy and she was able to fight for another year and a half. Jaime ended up passing away on a beautiful sunny Thursday morning in the arms of me and our older sister and our parents. Jaime had been in hospice care at St. Luke’s hospital for less than a week. Jaime died from liver failure caused by metastatic breast cancer to bones and liver. She had so much trouble breathing in her final hours. I remember feeling like she was drowning and I couldn’t pull her up or give her air. She fought until the last breath. April 14, 2016 was the hardest day of my existence. I lost a big part of myself when she passed. She had been unable to communicate the last day, but moments before she died, she opened her eyes and made brief eye contact with me and began to cry. She quickly shifted her eyes to our sister Ericka as tears fell down her face. Her eyes fixed towards my parents with her last breath.

I remember my mom placed her delicate hand on Jaime’s sweet face as she gently ran her palm down over her eyes to assist them to close. I remember the sound of my dad pulling a bandaid off of Jaime’s arm and throwing it across the room as he wept. I continue to replay these moments over and over- just like the the day she was diagnosed. The connections. The similarities. The tears. The beauty and the tragedy of it all. The brief eye contact that cut like a knife, the tears that poured from our eyes like wine, and the fear and yet the calming sense of peace that embodied all of it.

What did this consist of for you personally – to recall being a cheerleader on the sidelines, observing, but being unable to save them? (Ultimately the trauma of being the survivor).

I am forever grateful that I was able to care for my sister during her fight with cancer. I was able to support her and fight right along side her. I made sure she knew that she wasn’t alone. It’s been a month since she passed. The sorrow and pain really does come in waves. Everyday I wonder if there was anything more or anything else I could have done to help her have more time. I guess there will always be a part of me that will lament over the possibilities of treatments and cures. She ultimately decided that she would fight until the very end and she did. She fought so hard. Now I sit with my sword down and my shield up. I am still at war but all of the enemies are gone. I am less now. I am forever less without her here beside me. I will never understand why my sister had to fight so hard and ultimately die fighting breast cancer.

How has this changed you and your life course? 

Jaimes diagnosis absolutely changed me. I changed because I had to. I quit my job to care for her, we cancelled a move across the country to care for her, and I directed my focus and energy towards her health and healing.

Jaime and I were somewhat different from one another. Physically we were basically opposite. Our personalities, although different, meshed as we complemented each other well. We understood each others sense of humor. We had so many common threads and so much interest in one another. We had our own language and the ability to read one another with little effort. Sometimes we even felt one another’s pain or discomfort when apart. Jaime was 20 months older than me. We were only a grade apart in school. She always joked that I was the “big sister” and she was the “little sister”. I was taller, so that was ok with me. I will remember Jaime as an intelligent, loving, generous, carefree, slightly unpredictable, esthetically well maintained, stylish woman. She always had a big beautiful bright smile and she was always late for everything.

Since her passing, I have had a strong pull towards becoming more carefree and less concerned about details that don’t matter. I’m trying to learn to live in the moments that we are given each day.

I am contemplating my next steps and trying to discover what is best for me and what is next for me now that she is gone.

Do you feel you’re meant to do something differently with your life because of her death? And if so, what is your hope/goal? How do you want her to live on?

Jaime left me with three quotes:

“Be a rainbow in the cloud”  

“Something will grow from all you are going through, and it will be you.”  

 “Don’t worry, No one likes a know-it-all”

I am doing a lot of soul searching and digging deep to find my balance and my purpose in life. I believe that Jaime’s spirit will help to guide me down the best path.

I do feel that I have great compassion and empathy and love and concern for others. Jaime has always encouraged me to become a nurse… but she also wanted me to pursue an acting career and become a professional photographer so I’m a bit confused about her impression of my actual talents or calling. I guess I may be confused as well? I feel like I need to find a vessel that allows me to help advocate for people struggling to find the medical care that they need and deserve. I don’t want one more woman with a lump in her breast to have to go to four doctors just to get a mammogram. I want to bring awareness to breast cancer affecting young women. Breast cancer isn’t only killing post-menopausal women. Breast cancer doesn’t discriminate. Men, women, young and old are all candidates for breast cancer. Screening is key! Early detection saves lives. Genetic counseling helps us to make informed preventative decisions  about our health. Who knows, maybe my sister would still be here today if the first doctor who saw Jaime would have ordered a simple mammogram.

Jaime will live on in the masterpiece she created. Her strong loving intelligent boy Jameson carries her beauty, strength and perseverance. He has her personality and her heart of gold. Jameson is the greatest legacy and a beautiful reminder that my sister still remains.

**If this resonated with you, feel free to share on Social Media to not only raise awareness, but bring hope to any that may be struggling**