Guest Post: Cancer Caregiving Is So Many Things

I remember all the kindness. The meals, the cleaning, the hugs, the forgiveness, the laughs, the tears, the people, friends, friends of friends, family who kept us whole when life was hell. Every piece is a permanent part of me.

Julie and Peter

Peter and I walked down the aisle at Oceancliff mansion in Newport on a crisp September afternoon in 2004 with the ocean breeze at our backs and the warm sun on our faces. In front of family and friends, we said our vows- and we uttered ​in sickness and in health ​ just like everyone else, not fully comprehending what the sickness might one day look like.

On Pete’s 40th birthday, I got to surprise him with an ultrasound of not one, but ​two babies. I will never forget the look on his face- we had a 13-year age difference and he could not believe he would finally have a family of his own. He had been a bachelor for so long, he had figured he just might not ever get married or be a father. Yet in the span of just a few short years together, here we were, building a little life together.

We had everything we needed. A home, careers we enjoyed, a crazy black Labrador retriever, friends, family… and now these two little faces, Luke and Olivia, who were our minis in personality and looks. We had challenges like any new parents, but we were working so hard together and were learning and growing. Our divide and conquer routines fit- he was a night owl and could take care of late-night parenting duties and work down in his office, and I was an early riser up at 5 to start the day. I would feed the dog and kiddos, get them ready in the morning, and he would sleep until 8:30 or so.

In December of 2008, I started to notice a strange, sweet smell in the bedroom when I’d come upstairs to wake him. I asked him if he could smell it, he said no. I thought I was losing my mind. Morning after morning, a sweet smell permeated the room, and my gut sent me to all-knowing Google to search. It is amazing what you can diagnose with Google searches, right? Options that came up were liver issues, diabetes, oral cancer. It was time for a round of check-ups. I was so afraid of people I loved getting sick, I worried all the time. It was a joke between us. He used to laugh at me when I would freak out at every freckle on his back and “diagnosing” him with melanoma. “​Juge,” (that’s what he called me) “you are nuts, and my skin is fine, but I’ll have the doctor check it next time I go, I promise.”

Maybe my gut was overprotective for a reason. Maybe it was just that the stakes felt so high now that we were parents. In January 2009 I was in my classroom running a social skills group with another colleague, when Pete called and said the dentist saw a concerning white patch on his mouth and that he was headed for a CT scan. I just stood there holding my white office phone with the curly cord, looking at my office of happy chattering students, locking eyes with my friend’s concerned face as mine went dark. And that was it. That was the beginning of the unraveling of cancer. Tests, doctors, treatments were next steps. What do you do when you know your life is about to fall apart? You somehow go back to the table and finish Lunch Bunch with seven kids with Autism. And you lean on colleagues who would hold you up for the next year of hell.

The following week we visited the Ear Nose and Throat doctor, who would ask a lot of hard questions (and eventually biopsy Pete’s cancer on the ​same day ​ she removed our baby girl’s adenoids and tonsils and placed middle ear tubes. Two patients, same family — one stop shopping! She looked at Peter directly and said “​Have you ever chewed tobacco?” He lowered his head. “​Well, sometimes when I play golf, and I did it when I played sports in high school and college.” A million thoughts went through my head and flashed to a tin of Skoal that I had seen in the garage. I thought it was old. I grew up in a home where my parents smoked, I worked with cancer patients as an intern at the VA, we had had many discussions about tobacco and how I was so fearful of it. He was afraid to talk to me about it.  I had no idea about his tobacco use as a frequent thing. As I sat there listening, I felt mad that he chewed tobacco, mad at myself for being unapproachable because maybe I could have helped him, mad at everything.

This part of my story is hard to tell. He was not proud of chewing tobacco at all and he was so ashamed of himself. But this is important, because maybe someone out there will feel the seriousness of the effects of chewing tobacco, that it can and will take lives and that it is never too late to stop.  My anger toward him and cancer that was caused by a substance he put in his body was part of my grieving process. I made peace with it.

In early February 2009, he had his biopsy. The doctor pulled the curtain closed in the hospital recovery room, then drew a diagram of a tongue on a small piece of scrap paper on her clipboard. Then she made another line around the edge of the drawing. She paused, put her glasses on her head, and looked up at me. She pointed to the small perimeter margin and said: “​I’m so sorry, but I need to be very straight with you, so you understand the gravity of this. This is the piece that ​doesn’t ​have cancer cells. The rest is cancer, and there is also some lymph node involvement in the neck.”

“This is considered Stage 4.”

Everything just stopped in that moment. The noises, the lights, everything around me froze.​ ​The next thing I remember is going into the dark, one-stall bathroom, closing the door in the pitch blackness, and splashing water on my face over and over to stop the tears, until eventually someone knocked on the door. There was now a ​before cancer ​and​ cancer ​on the timeline of our life.

The next few months were spent focused on treatment. There were so many appointments and consults, researching treatments, trips back and forth to Dana-Farber for chemo and radiation. Pete went from 215 pounds of a solid, boisterous guy, to about 180 lbs in a matter of weeks. (He joked that he was in the ​best shape of his life as his jeans hung off his waist and he pulled his belt to the tightest notch which was still too big). Pete was a ​larger than life ​guy. He was loud and crazy and hilarious. He played air guitar and steering wheel drums in the car and I would have to tell him his singing would wake the babies sleeping in their car seats. It was so hard to see him look tired, with sunken eyes, and mouth sores. Chemo was horrible, but Pete was a superhero. He made jokes, smiled, and the nurses and doctors adored him.

That spring, Peter got a feeding tube because radiation wrecked his mouth and because of so many burns, he could barely even swallow water. It was really heartbreaking to watch him eat food in a tube, because of all people, Pete truly appreciated great food. He grew up with good food at home and loved a great meal. He was a hell of a cook and he taught me so much. Every day, the cans of milky liquid were poured into the syringe for his feeding tube, and he would grin and say, “​Juge, look at this big juicy steak! Yum!”

We drove to Dana-Farber multiple times a week, friends and family helped with Luke and Olivia, and we just kept moving forward with the hope that one day cancer would be gone. It​ had ​to be gone. We had too much living to do. It went on like that for months. Waiting and watching and scanning and praying in the little hospital chapel. The team told us that the tumors were just not responding how they had hoped. That was when Pete finally broke down and got angry and said he was sick of the pain that treatment brought. We sat in the exam room at Dana Farber waiting for his doctor to enter and just felt defeated. Months and months of suffering and biopsy surgeries and it wasn’t gone? How?

We decided to take a break from treatment and try alternative medicine. Pete was depleted, his mouth was full of radiation sores, and we were beat. We went on a family retreat for a month in Florida and just enjoyed the sun. I will never forget that month and I’m so grateful for that time. There were no hospitals, just positivity and happiness and just the four of us together. We even made it to Disney for an overnight, where he rode around on a scooter carrying the kids. He was so exhausted, but he visited Disney anyway, for us. Family and friends raised thousands of dollars to send us there, the outpouring of support was indescribable.

In November 2010, the twins turned four and celebrated their last birthday with their dad. Pete had been in bed for weeks. He was so frail, but he came down from his bed and helped them blow out their candles surrounded by friends and family. It was the last time that many people saw him. November to January was the quiet ending of his life here on earth.

It took one whole year from diagnosis to death. We watched him suffer yet be a superhero all at once. He wanted so badly to make it and raise our family that he persisted through the pain. Even in his hardest times, he would tap the side of the bed and the kids would climb in next to him. He would smile and watch them play Legos until he fell asleep. By the end he was often too tired to speak, so he would write in a little blue notebook to me, which I still have to this day.

In January 2010, hospice came almost every day. One afternoon we quietly sat together on the edge of our bed and Pete held my hand and looked up and whispered.

“Juge, I’m just so tired”.

I knew what he meant. He was tired of living this pain-filled cancer life. I read somewhere that one of the best things to do for your loved ones is to give them permission to go and to reassure them you will be okay so that they can go in peace. So I did.

We talked about how the kids and I would make him proud and that it was ok to go home to God. To go watch the Red Sox in heaven with his grandfather, and play pass with his amazing dog Neko, and just be​ pain free ​in heaven where all the good food, all the poker, all the golf was, and there was ​no cancer. That night, he left this earth and the tick mark on our life timeline now looked like this: Jan 19, 2010- Became a Widow. ​Widow, Widow, Widow. I just said the word to myself in the mirror that night in disbelief. I hated the sound of that word.

Many people ask me how we made it through that year. So much of it is an absolute blur. The twins’ milestones between age 3 and 4 occurred somehow, but I don’t remember much. Cancer caregiving is so many things. When you’re in it, you wear a hundred hats all at once, on top of the other hats you already need to wear in your life. Jobs you’re not qualified for and definitely did not apply for. But you do them because ​there is no choice. ​And you somehow believe if you just do this or that, the cancer will be cured. The exhaustion and depletion of all mental, physical, emotional, financial resources is so extensive you don’t know where to begin. But somehow, by some miracle, just like your sick loved one, you keep going, until it comes to an end, and then you have new obstacles of memories and grief that never leave.

I was fortunate to work as a speech language pathologist in a school where people came together to donate their sick days to me, and a school system that let me continue my health insurance during family leave. Other cancer caregivers are not as fortunate.

They lose their jobs. Many are self-employed. As the the primary financial provider, or the secondary breadwinner, finances are crushed. Cancer caregivers still must feed their families and take care of their homes while caring for the very sick someone they love dearly. And the patient is devastated that he or she can’t contribute within the household. I was fortunate to have friends and coworkers put Stop & Shop gift cards in my mailbox or make us food. I was fortunate to have friends that would take my children and love them and spoil them to somehow help them forget that their home life was destroyed by cancer.

Many children don’t have extended family to brighten their days. The house continues to run and break with or without finances to support it. When our boiler broke, I was fortunate to have a kind, teary-eyed technician shake my hand and tell me that there would be no charge. When the daycare bill was due, I was fortunate to have my children’s day care let me “pay what I could,” but that is not always the case. I was fortunate to have friends and family come by to clean my house when it was turned upside down while the family moved in and out of the hospital. Other caregivers are not so lucky or blessed. As a caregiver, there is a monumental load to bear, day after day, on top of watching your loved one slip away.

As I sat to write this to share with you, the JAF community, I went through a mental journey of remembering all those who supported us. It has been over 11 years since cancer touched our family and even though that time in my life is a blur, I remember all the kindness. The meals, the cleaning, the hugs, the words when I needed them, the forgiveness, the laughs, the tears, the people from near and far, friends, friends of friends, family who kept us whole when life was hell. Every piece is a permanent part of me.

Also, a part of me are the dates of surgeries, dates of results, moments that are written in indelible ink on my brain and heart. For me, certain times of day and year, a song, dates, times of day, sitting in traffic in Boston, smells of certain soap — ​anything really — will bring back vivid memories, even 11 years later.

The journey was hard. It still is at times.

It is hard to watch Luke and Liv grow into adults and not have him here physically to be part of it. But I’m grateful for this journey, and now, through JAF, I share my story in hopes that it helps support others going through a similar, devastating time.

Peter John Martin was a force in life, and I am forever grateful that he picked me to help him build our family.

– Julie (“Juge”)