Tag: melanoma

You can’t get your old life back, but you can build a new one.

WARNING: I swear a little/a lot, and make references to Marvel Comics characters. If you are sensitive to language or not very nerdy you may be offended or confused.

Thirty-six months ago my husband told me “I have a swollen lymph node but I’m not sick and it doesn’t hurt”. My first thought was “he’s wrong, and I can make it hurt”. He pointed out a walnut sized lymph node in his left groin. I knew it was walnut sized before I touched it, because I could see it bulging under the skin. I poked it hard and asked if it hurt. He shook his head “no”. I knew he had cancer.

A year prior to that Garry had developed a knee to groin blood clot in his left thigh. He had no risk factors for a DVT (deep vein thrombosis) so much so that I decided it was an impossibility and stupidly said so as the ultrasound tech rushed out of the room to notify the radiologist of his giant DVT. We spent the better part of the next year trying to figure out how a non-smoking, active, thin, 39 year old male who was obviously not taking birth control pills could develop a DVT. The only reasonable assumption could be that he had a genetic clotting disorder. We knew cancer can cause hypercoagulation. My dad had multiple clots in his lungs during his battle with Melanoma just a few years prior. Garry even asked “could I have cancer?”. The answer was always a “no” without hesitation.

Garry always said he’d stop rafting commercially when he was 40 years old. He developed the DVT the spring before he turned 40, and because he would have to be on blood thinners decided it wasn’t worth it to raft that summer, but he’s never forgotten his stolen final summer on the river. A year latter he was gearing up to take that summer back. He decided he would go off his coumadin and try to thin his blood with fish oil and aspirin. He would raft. I agreed with the stipulation that he would consult a hematologist before he put his plan into play. He already had the appointment with hematology/oncology when the lymph node made its presence known. I told him to show her the lump.

After that first visit it was decided that we would wait a month and see if it changed. It didn’t, and a biopsy was scheduled. Garry had a pre-op appointment with the surgeon the following Wednesday. I did not plan to go with him and had meetings and a training that afternoon. Garry is the oldest of five boys and his love language is largely based on teasing. If Garry fucks with you, it means he loves you. He loves me a lot. He started texting me that the surgeon thought they lymph node was superficial enough that he could remove it at the pre-op appointment in his treatment room. I was certain this was bull shit and pretty much told him so. What I didn’t know is he barely had a signal and his texts were going out but he was not receiving mine. I continued working because I figured I was being had, but still worried he might actually be getting cut open at the same time. I finally told my boss who said “go to him!”. I told her I thought he was messing with me, and she said, “what if he’s not”. Irritated I finally got a hold of him as I pulled into the parking lot. He was already done and out and walked up to my car. I rolled down my window and said “you pulled me out of a meeting, did you really have surgery?”

“Yes” he replied.

“I don’t believe you. Prove it”

“You want me to drop trou in the parking lot”

“Yes!” I said emphatically.

*****Nurses are great empathetic caregivers until we’re not. I have friends who didn’t believe their kids had broken bones and made them suffer for days before going to the ER. I knew I had appendicitis, but was so worried I’d be the girl in the ER with gas that I suffered all night until the pain localized to my left lower quadrant. Admittedly we are not always to best caregivers even to ourselves. This was not my best moment.*****

Garry dropped his pants in the parking lot and sure enough there was a nice surgical dressing on his left groin complete with shadow drainage of blood through the gauze. “You married an asshole” I told him and he agreed.

    I didn’t think we’d hear back from pathology for a week. I fully expected a cancer diagnosis, but had convinced myself Garry had a nice treatable follicular lymphoma. At work we were going live with a new electronic medical record (EMR) and me and our IT person were running point on the project including moving all current patients from the legacy system into the new one. The first week in a new EMR is always a nightmare. It was the Friday after Garry’s biopsy and our go live was Monday. When Garry called me that Friday, I was in my office just off our education room. My boss and three or four other coworkers were in the education room working on transferring patients into the new system. What happened after that is foggy and incredibly clear. Time stopped and sped up all at once. I’ll do my best with the recollection, but I make no guarantees that any of it is 100% accurate.

    Garry never called me during work. I figured maybe it was about the biopsy, but remained unworried, because I felt prepared for manageable bad news. I shut my office door and answered the call.

    “The doctor called. Are you sitting down.” I could hear the stress in his voice and started rehearsing my comforting speech in my head.

    “I’m sitting.”

    “I have melanoma. It’s melanoma. They want me to come in at 3pm.”

I heard someone wail the word “nooooooo!” and maybe a scream. I remember thinking “who is doing that? That is not helpful”, but also realizing it was me. This defied reason. This was outside any concept I had of the existence of a loving God. God was drunk. He was drunk and had forgotten that my dad died of melanoma less than five years prior. The world shattered. My world shattered. I remember sending an angry prayer to the heavens, “sober up and fix this!”.

    “Where are you?” I asked.

    “At work. They just called.”

    “What are you doing until 3?”

    “I don’t know. I don’t know what to do.”

    “I’m going home. I’ll meet you there.”

I clearly remember packing up my things and walking out of my office. They had heard the screaming and knew things were terribly wrong. Cathy, my boss, stood up. I told them I was leaving and Garry had melanoma. I remember Cathy’s hug. It was a mothers hug. She took my face in her hands and said, “You will be off next week. Let us know when you are ready to come back. We will be fine”. I remember thinking that was crazy. I’d be back on Monday. Cathy was right though. There is no working the week after a diagnosis like that.

I think I called a couple friends on my way home. April and Meghan. I don’t know if I actually spoke with them or just cried into their voice mails. I don’t remember how we spent those hours waiting to see the oncologist. I think we talked about how and when to tell our six year old son, and Garry’s mother.

It’s hard to explain what those first hours and days were like. Agony. It was agony. On diagnosis we knew it was metastatic melanoma, and that is bad. Eventually we learned it was mucosal, and had started in Garry’s gut. This was on some level a relief to me, because if I had missed something on his skin…. I’m a nurse. My dad died of this. If I had missed something. I couldn’t live with that. But on the other hand mucosal melanoma is much more aggressive than its cutaneous cousin, and much less responsive to treatment. If cutaneous melanoma is Ronan the Accuser than mucosal melanoma is Thanos.

The week was spent finding out how bad is bad. There were blood draws and scans and waiting. There was very little sleep and lots of nightmares. There was too much Googling. Ultimately Garry had no metastasis beyond the localized lymph nodes, and that was good. It meant he had somewhere between a 20-30% chance of being alive in 36 months. He would look at me and say “I just want to be his dad”. When given all the choices we decided to pursue clinical trials. We would roll the dice and hope for better odds in the experimental world than in the known world.

So far the gamble has paid off. At Garry’s last scan I asked what were the chances that he would have no more measurable cancer on his next scan. The answer was “It’s likely”. Coincidentally his next scan will be on the anniversary of his diagnosis. Fuck you, Thanos. I spent the rest of the day walking on air. It was a medical miracle. It was not possible when my dad was sick. This was amazing. But then while I was making dinner the rage hit, the gratitude melted, and I was pissed. “Are you fucking serious?” I thought. “Is this it? I want the last three years back! This shit changed me. I’m not remotely the same. He’s not the same. Our son is not the same. This is bull shit. We need payment for the last three years! It took our time and our money and who we were. I want it back. I want it all back!”.

It’s so very human to critique a blessing. To find the flaw in the diamond. Our oncologist can’t give us our life back. It’s not what she does, but she gave us time to build a new one. Maybe a better one, but that is up to us. There is no living like cancer never happened. Cancer casts a really long shadow, but great things happen in shadowy places. Life adapts, we evolve, we thrive, or we don’t. I think it is the creatures who spend their lives looking for a way to return to the place that is no more, who can’t survive. The poor souls stuck in the “I want it back” that fade away. I’m angry. He’s angry. We get to be angry, but we don’t get to be stuck. We have a life to build, and we have the infinity stones. Fuck you, Thanos.

Wouldn’t it be great if it did?

Lucy Kalanithi is a physician and a widow. Her husband, Paul, died of lung cancer. He was diagnosed as he was completing his neurosurgery residency. They had a plan before cancer. She was already working as an internist and when Paul would finish his residency they would have the time and finances to start their family. If you’ve heard Lucy speak you’ve heard this story. They knew he was terminal and discussed the possibilities of going ahead and having a family. Lucy asked Paul “Don’t you think saying goodbye to your child will make your death more painful?” and Paul replied, “Wouldn’t it be great if it did?”.

Nothing has ever made more sense to me. Nothing. I can’t explain why. There is knowledge and there is knowing. Knowledge is explainable it lends itself to language and description. Knowing has no language, because the soul is without speech. “Wouldn’t it be great if it did?” is something I am deeply knowing.

Early in his diagnosis my husband said “This would be so much easier if I didn’t have you and our son”. I was not offended. Easier rarely means better. Having us to worry about, to care for, to fear leaving was not easy, but it was better. It was so much better, and infinitely more difficult.

My dad died of melanoma in 2011. He was diagnosed nine years prior. It was discovered in a small black spot behind his right ear. Our family physician removed the spot and sent it for biopsy. Skin cancer was not new to my family lineage, but melanoma was. We were of Scandinavian descent and prone to highly treatable skin cancers. Both of my paternal grandparents had had multiple excisions on their faces and ears, with no additional treatments needed. The cancers were cut out and by nature of their removal cured. Melanoma is a different beast entirely.

Cancer in its simplest form is unmitigated growth. Cancer is not simple, but that is my simplest explanation. There are countless variations and complexities that exist under the formidable umbrella of cancer. Melanoma is one of the uglier ones. Melanoma cells grow quickly and worse still spread to other parts of the body. We call the spread metastasis. When my dad was diagnosed from an initial small biopsy of his skin. We went to Uchealth Anschutz Pavilion to see Dr Renee Gonzales. He was the regional melanoma expert at the regional teaching and research hospital. We were lucky to be living within 70 miles of his expertise. They removed a larger section of skin and a local lymph node. The pathology report came back clean. They had removed all the cancer. The treatment plan was to have annual checks for the next five years to make sure it didn’t come back. We left rejoicing in our good fortune. But secretly I heard the echoes of a nursing professor whispering in the back of my mind, “I hate melanoma. It’s like breast cancer. You think it’s gone but then five years later it shows up in their liver, lungs or brain.”   

I interviewed for my first hospice job on April 20, 1999 in Denver, Colorado. I sat in reception waiting for my interview. The receptionist was busy on the phone because nurses in Littleton were finding it hard to get to their patients as there was a large police presence and road closures around the high school. As I interviewed for the job that would become my passion, children and a teacher were being massacred at their high school a few miles away and because of that I have never forgotten the date. They hired me, and those initial patients of mine have not been forgotten any more than I can forget the events of the day.

One of my first hospice patients was a consummate lady and a consummate Texan. She sat comfortably in the sunny living room of her daughters house. Her family had moved her from Texas to Colorado, as she was widowed and her cancer had advanced. She was dying and needed to be with family for care and comfort. She was impeccably dressed and very at ease. In her slow soft drawl she explained what was already clear in her demeanor, she was not afraid to die but did wish to be more comfortable. Transversely her daughter stood the whole time, ringing her hands and anxiously awaiting an opportunity to get something or do something that might ease her mother. We signed paperwork. I ordered medication and medical equipment. I instructed them on how to give the medications and why. I suggested dietary changes and positioning that might aid swallowing. Finally, I asked if they needed anything else or had any other questions. Her daughter with face tight and desperate eyes asked “have you ever known anyone with cancer before. I mean, not a patient. Have you ever loved anyone with cancer before?”. My answer was “no”. I was twenty five years old and looked eighteen. I understood why she was asking. I knew my answer was disappointing. I didn’t know what she was going through. I didn’t. How could I?

Five years after Columbine and two months before my wedding day my dad developed a weird cough and upper respiratory discomfort. I talked him into getting a chest xray to humor me. They found a spot. It was completely unrelated to the cough, but I had a gut feeling…. They removed the tumor in his lung, but two days before my wedding they found a spot in the liver. They gave my dad three months to live. My mom picked up her phone to call me, and my dad took it away. He forbid anyone telling me until I returned from my honeymoon. It was a huge sacrifice on his part and the best wedding present we would receive. My aunts all cried during the father daughter dance. I found it extremely uncharacteristic. My dad, who never sang, tried to sing the song to me. It was Butterfly Kisses, and his voice kept breaking. I should have known, but I didn’t. I was in love, and in my mind all was well with the world.

He didn’t die in three months. He lived until the day after our fourth anniversary, and passed away peacefully in my parents home. In those last months we spoke about dying. I remember asking “what is the hardest part? Are you afraid of dying?”. He said, “No, I’m not afraid of dying. I’m afraid of the goodbyes”.

My husband would develop melanoma within five years time. Only his diagnosis of mucosal melanoma was much worse than my dads cutaneous melanoma. It’s incredibly rare, highly aggressive and has a poorer prognosis. My husband, like my father choose clinical trials over the normal standard of care, and has been incredibly, miraculously successful. Although he carries a sort of survivors guilt that he is living and thriving when my dad died. He feels guilty that I am living through this disease again, and although its brutal and cruel and I often think God must be drunk. Isn’t it great that it hurts? Because it can only hurt when you have loved deeply and are loved deeply. I wouldn’t have it any other way. Isn’t it great that it does?