Siblings Tribute – Jamie and Kristy

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*

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