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This is not a story about death.
It is a story about one couple's journey of acceptance, love, and internal awakenings. Kelly and Joe met by chance, but were bound by fate. One morning in the summer of 2010, Kelly Boedigheimer, a thirty-nine year old man in good health, discovered what he thought was yet another ingrown hair on his chin. That was the first step on the life-changing journey he would share with Joe Peterson, his life partner ...
This is not a story about death.
It is a story about one couple's journey of acceptance, love, and internal awakenings. Kelly and Joe met by chance, but were bound by fate. One morning in the summer of 2010, Kelly Boedigheimer, a thirty-nine year old man in good health, discovered what he thought was yet another ingrown hair on his chin. That was the first step on the life-changing journey he would share with Joe Peterson, his life partner since 1998.
Months later - following three surgical procedures, where each was more aggressive than the last - Kelly and Joe faced the inconceivable: Kelly was diagnosed with melanoma.
In early 2011, Kelly met with a team of specialists at the Mayo Clinic in Rochester, Minnesota. Another surgery, this one more wide-ranging than the others, removed a section of skin from his chin and a portion of his cheek. A graft from his arm provided new skin for those areas. Highly concerned about this aggressive melanoma, doctor's proceeded quickly to save and protect Kelly.
Here, Joe lovingly and painfully recreates Kelly's final nine months through journal entries, e-mails, blog posts, texts, and more. Their relationship was tested as too many are; in this visit back to those days, Joe unfolds an inspiring telling of the power of love, optimism, and hope.
This is not a story about death. This is a story about love.
Monday, February 7, 2011
The night before, Kelly and I celebrated because we were anxious to begin this journey yet nervous about the unknown. We drove to the Mayo Clinic in Rochester, Minnesota, and prepared ourselves for the following day's appointments.
We met with several doctors, and they confirmed it was melanoma but Kelly would not lose his jaw. They felt a large removal of skin near his jaw, outside and inside, was the best treatment. Because of the severity of the trouble melanoma can wreak, the doctors found it necessary to remove more tissue, which allowed less chance of leaving behind any of the cancer. They told us they would try to stretch the skin on his face to cover the hole left from the removal. If they were unable to achieve satisfactory results, they would remove skin from his inner left arm, which was the closest skin match, to patch the area. We knew Kel's face would be altered, but we believed he wouldn't be changed.
Kelly had three scans—CT, MRI, and PET—and each came back negative, which meant the cancer had not spread elsewhere. Kelly hadn't been told what stage the cancer had reached, but we hoped his surgery scheduled for Thursday would be the only necessary treatment. Kel was told he would be out of work for six weeks, and his full recovery could take up to one year.
I was feeling confident and secure about Kel's life, but the terror, fear, and wondering had set in for Kel. It was really difficult knowing his heavy burden hadn't really been lifted. He had new realities weighing on him. I believed Kel would be as good as new and even better because of this experience. I also felt Kelly and I would become closer. It became my responsibility to encourage and support him as we both became enlightened by life's experiences.
Tuesday, February 8, 2011
Even though we got home late the night before, Kelly went into work. He was dedicated and wanted to make sure he wasn't leaving anyone with potential problems or unresolved issues. His focus on getting healthy began after everyone's needs were met. When I called him, he was very positive and upbeat; his fears seemed minimal. I felt his confidence through his positivity. He took control and sought regularity.
February 9 and 10, 2011
We drove back to Rochester Wednesday evening and spent quality time together. Both of us were anxious for surgery to be over, but Kel was also very nervous.
Thursday morning, Kelly's spirits were high as we walked to the surgery check-in desk. After we checked in, the prep nurse referred to Kel's surgeons as the "dream team." She admitted that she got goose bumps from their achievements. How could we not feel blessed? I felt ecstatic and was confident Kelly was sharing my optimism. Throughout the morning, we laughed and made light of everything around us. Others responded and reacted to our joy and laughter, and we realized again that life is to be celebrated. Before the nurse wheeled him out for surgery, she checked his blood pressure and pulse. They were at resting numbers. Kel was in the moment and obviously comfortable in their care. We, as a whole, were a team.
The first incision was made at 9:11 a.m., and I believed Kel was very much aware of all the positive energy being sent to him. By 1:15 p.m., I received the second update. He was doing very well. They were prepping the neck region and getting ready to remove the flap. The flap, tissue taken from Kel's left inner forearm, was used in rebuilding his facial area. I was grateful for the physical support from our families because my mental state was slowly weakening as I visualized the surgical process. Another update at 3:45 p.m.: surgeons were establishing circulation in his arm. A major artery was removed with the flap to ensure an adequate source for blood flow. Tendons, muscles, and veins were exposed after the flap removal, and a graft from the top of his left thigh was stitched over the area. The major artery for the flap still needed to be attached to another blood source in his facial/neck region. Finally, at 4:50 p.m., I was told they were closing him up.
We had many reasons to celebrate after surgery. Only a small part of Kel's inner cheek had to be removed with the mass, so surgeons were able to close the inside of his mouth using surrounding flesh. All of the lymph nodes were negative. The main facial vein was unaffected by melanoma; therefore, Kelly's muscles would be weak but able to regain their functionality. Kel planned on wearing the battle scars with pride, and I was proud of him.
Kel's mom, sisters, and I waited in the hall as the staff rolled him to his room. I said, "Hey, Bucko, how are you?" His eyes opened so wide I thought I scared the shit out of him.
He said, "Hi," which was drawn out and sounded more like "Hiiiiiiiiii." He shut his eyes and then opened them again, looked at me, and sarcastically said, "Nice shirt!" It read, "Everything Alters Me, but Nothing Changes Me," and every time I wore it, he'd whine and ask me to change. There was a rich meaning within the words, but Kel liked fun clothes and he thought this T-shirt was dull. I had always found strength in the words, and during this cancer reality, he was slowly finding a soft spot for the words as well. He proved he still had a sense of humor and knew I wore the shirt just for him.
I wasn't prepared for what I saw when they rolled him by. Kelly was not bandaged, and I was fearful for what his own reaction would be when he saw himself. The skin from Kel's arm was stitched onto his face in a two-by-two-inch square. The color match was close, but the lack of facial hair threw me a little. His face was very swollen, and tubes seemed to be coming and going everywhere. The bandages he did have were blood-soaked, and he was in pain. The best part of all: when I looked at him, his eyes pierced my heart just like always! Altered but not changed.
Friday, February 11, 2011
Doctors visited Kelly in the morning and repeated that all the lymph nodes had come back negative. From what we had learned from previous appointments, surgery was the only procedure needed, and we were ecstatic it was over.
Before visiting Kel, his family and I sat in our hotel lobby, making a pact to avoid discussions of his appearance. Before seeing any visitors, Kel used his bathroom and caught a glimpse of himself in the mirror. Though it was a brief peek, he shared his initial thoughts with us: "Great, I look like a freak show. I look like I've got my ass on my face." We were relieved his humor was intact and he was doing excellent: aware and alert. It was amazing how much the swelling had gone down in a matter of hours, and I began to investigate his surgical sites. Kelly got annoyed with me and told every visitor that his mom and I were poking around and checking things out. While waving his uncast arm in the air, abruptly and loudly, he said, "I'm gonna start charging dollars! Get your peek for dollars!" He even told me to shut up so he could try to sleep. I never felt so happy to hear his sarcasm; I loved it. Kel was constantly watching everyone's eyes. As people stared upon him, he attempted to interpret the stories their eyes told.
Kelly's right arm had been throbbing all day, so an ultrasound was done to rule out blood clots. It appeared to be a muscle cramp caused from surgery. His left arm looked like a wiffle bat; the cast thickness was massive. Kelly had difficulty raising this arm because of the weight. Thankfully, it would be removed in five days. He had some minor pain during the day, but it wasn't until evening that it really reared its ugly head. I was unaware if Kel thought he needed to endure as much pain as possible, but it was obviously difficult for him to request more meds or clearly define his pain level. It was imperative for his personal comfort that Kelly learn to guide and inform the staff of his needs.
Though several tubes were already removed, he still had the feeding tube running up his nose and into his stomach. We were told that if everything continued to heal properly, it would be removed before his discharge. The nurses warned that his leg skin graft would cause much pain, but Kel was walking with little discomfort. After telling Kelly how great he looked, the night nurse proceeded to give us examples of what she had seen after this type of surgery. She painted some monstrous images, and we felt fortunate to have gotten the dream team.
No one wanted to leave Kel's side, and I feared that he would have too much alone time and spiral into sadness. It was difficult seeing him sad, hurt, or crying. I had witnessed these emotions plenty of times over the past weeks. I also knew I needed to let him go through his own process, and, in doing so, he would become stronger. We had a good talk, and we were going to get through this together.
Saturday, February 12, 2011
Kelly finally slept; unfortunately it was achieved in two-hour intervals. He told me he was feeling much better, and I was sure it was due to rest. Though he was getting tired of hearing it, Kelly was looking great. His facial swelling had greatly reduced, and the flap had flattened out around the edges and begun meshing with the surrounding areas. The flap looked like a square piece of fabric hemmed on all sides and stitched onto another piece of fabric. Just one day earlier, it could have been picked by a fingernail as if it were a separate piece of skin, but the flap was now becoming part of his face. With Kel's permission, I began taking daily pictures so the healing improvements would be captured. If we ever doubted progress, proof would be available.
If going home had been based on mobility, Kel would have been released, but he was required to stay until the gadget in his neck was removed. It was embedded near the flap and echoed the sound of blood flow. As long as we could hear it, the flap was functioning properly. If the blood flow stopped, surgeons would have to act immediately in order to save the tissue. There were so many scary scenarios, but Kel's body was accepting everything the way we had hoped.
It was completely amazing witnessing how Kel's body healed, and the only impact was on his attitude and how he treated himself mentally, physically, and verbally. As we embraced the circumstances, we attained confidence, strength, and knowledge. We weren't perfect—just human.
Sunday, February 13, 2011
"Really good," Kel described his present state. Throughout the night, his pain was horrible, but he felt much better after they removed his feeding tube. Before removing his leg bandage, nurses drained the bodily fluids that had pooled underneath. Three extra large syringes extracted the deep red mass. The bandage was removed, and a fresh see-through one was applied over the graft. I took pictures and checked things out, to which Kel said, "Okay, you're close enough!"
Kelly took a big step this day: the mirror. I wanted him to see what had been happening, to witness what my eyes were seeing. I listened as he said, "Eh, I thought it was all the way back to my ear because it hurt so bad. Oh my God is my face fat." He chuckled. "Eh, I can't believe how swollen I am." There was a long pause. "Uuuuuuug-ly! Okay I'm done. That's enough for today." It was less emotional than what I'd prepared for, and (I think) not as bad as what Kel had imagined. The pain he had experienced made him assume the flap had covered an area from his chin to his ear, but it was actually caused by the lymph node removals.
We learned Kel had a rare type of melanoma. It was deep, large, concentrated, and fast-growing. Knowledge about this type was limited because it was isolated to one area, so his case was documented to assist in future education and teaching. We also found out a total of fifty-five lymph nodes were removed during his surgery, and doctors were baffled because each was negative. Because Kel's was such a rare, special case, radiation was advised.
Despite all of the positive successes, Kel had a battle within that no one could understand or relate to. He was having a difficult time and stated he just wanted to wake up from the nightmare. I wanted him to continue sharing what he was feeling and thinking. There was a fear of the unknown, but I believed knowledge would help us grow and move forward. As the day progressed, so did his pain. Before heading to my parents' home, I tried to leave him with happy thoughts and, I hoped, a healthier state of mind. I reminded him of the support within reach and kissed him before I left. My gut told me even after he was physically healed, the emotional healing was going to take more time. I had every belief both would connect and forever bring the value of his true self to light.
Monday, February 14, 2011
It was a rocky night of sleep. The pain was minimal, but Kel's discomfort was not. He slept in but was woken by one of his doctors. The drainage tube was removed from his chin; we couldn't wait until all the tubes were out. Anything and everything acted as a basin for the drainage tubes. They dribbled and dripped everywhere.
Getting up close and personal (again), I realized the incision started at the top right inner ear, where it met his cheek bone, continued one inch above shoulder level, and came up the middle of his chin, where it met the flap. After surgery, Kel was so swollen I couldn't see the incision the way I was seeing it this day. Fifty-five nodes were removed during the procedure, and my stomach churned at the thought. I ended up with nervous giggles. I had been there too long and the reality was starting to get to me.
Kel had a very good day, and we shared several walks in the hospital halls. His pain was as stable as his mood, and we were anxious to get him home. We bickered for the first time in a very long time, and it felt good. I wasn't going to be easy on him during recovery. Just like every discussion, I was expecting him to argue every point. I was excited for our first bickerfest (verbal banter consisting of arguing, fighting, yelling, understanding, and play) and the acknowledgment that followed: our relationship was solid. A big sigh of relief accompanied that thought.
We read Kelly's Caring Bridge site and were emotional. Reading the journal and guestbook supplied us with strength and confidence that had not yet been tapped into. It was strange for me to read along with him because I wrote the updates and now I was going to pay the consequences if he hated my entries. He got teary at some, laughed at others, and rolled his eyes at many. Ultimately, Caring Bridge was a uniting and strengthening resource, feeding the universal energy force meant for Kelly.
Tuesday, February 15, 2011
Hospital smells were making my stomach weak, and the atmosphere was draining. Thank God Kel was getting discharged. It was Kelly Unplugged, and we were definitely fans. The remaining drainage tubes were removed, and the cast was replaced with a splint. He was released, and we headed home. During our drive, we received a call from the Mayo Clinic informing us Kelly would be needing radiation. An appointment was scheduled, and within a week we'd have to return to Rochester. I was so focused on Kel's recovery that the news of radiation and more procedures knocked the wind out of my sails. No matter what Kel had to endure, I would be with him.
The ride home was torturous for Kel. Every bump, crack, and pothole caused painful awareness at each surgical site. We stopped at my parents' home in St. Paul to visit, rest, and get Chaos, our eight-year-old Bichon. Though he missed his little guy, Kel feared his loving hyperactivity. After using the bathroom, Kel rejoined the group and said, "Damn, those lights in the bathroom are bright. I'm not used to seeing everything in the mirror so clearly. I look like I'm storing nuts for the winter." His humor made us laugh and offered comfort.
We began the final two-hour drive home, and Chaos was quarantined to the backseat. Oddly enough, he was bugging me the entire ride. He was stretching his body from the backseat and laying his head on either of my shoulders so I could pet him. Every once in a while, he would go near Kel with his fluttering nostrils, and then he'd retreat. Kel was still oozing from areas where the tubes were, and obviously that odor repulsed Chaos. I felt bad for my boys because I knew how much they loved each other, but their affection was limited. It was a very confusing time.
I wanted to erase this nightmare, if even for five minutes, but I knew we didn't have time to waste on such impossible desires. Every aspect of life had been altered, and Kelly was no longer in a safe zone: the hospital. Challenges waited as he reentered the world, and I became increasingly aware that I had been taking simple things for granted. It may have felt like we were in a never-ending nightmare, but sharing our lives was a dream.
Excerpted from Help Me Live ... As I Die by Joe Peterson Copyright © 2012 by Joe Peterson. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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