Regular readers of my blog know of the continuing journey of my father, who has been battling stage 4 oral cancer. After much soul searching, we as a family decided to forgo my salary for three months and let me take a leave of absence from work to care for my dad. Surgery was scheduled right as school was about to end. It was the right time to take a break from work and concentrate on family.
So how did I spend that time? I would say the middle was great, but the leave was bookended by mental and physical exhaustion. My leave just a few days before my father was scheduled for a 12 hour maxillectomy surgery. I had to wrap up an affairs my dad had, make sure we had his wishes down before he went under, and kissed him and wished him well as he walked off to the surgery room. That 12 hours was some of the hardest in my life. The surgery went perfectly, but aside from a few updates, we had to sit, and wait, not knowing what was happening.
But my dad did come out. And he came out in amazing shape. He had been told he was going to need to be hospitalized for 10-14 days. But he was up and walking within a day. He was off the trach in 3, and he was eating by day 6. Day 7, he was released home. It was faster than anyone expected, including all the nurses and doctors. He healed quickly and soon he didn’t need as much help physically. There was still much that needed to be done; household affairs and my grandmother to take care of while he rested, cleaning, doctors appointments and tests, etc. But it was not the brutally punishing days that we spent in the hospital where he needed help just to get out of bed.
Meanwhile, on the home front, the kids finished school and did a little bit of camp. I came back home to see my daughters end of camp performance, then whisked them off to New Jersey with me the next day.
When the kids came to New Jersey, that’s when the fun really began. My stepsister had come for a visit at this point bringing her daughter. Our daughters are two weeks apart in age. A language difference had no affect, and the kids had a great time playing together, spending all day in the pool, and generally being spoiled by family. We made it to the beach both locally and in Wildwood. Sure there were doctors appointments, affairs for my disabled grandmother to deal with, and care needed for my father. But it was a fun time, an easy time, a time filled with family and love.
Before the cancer diagnosis I had booked a trip to Bali to celebrate my 40th birthday. As soon as I knew the recovery would be during my trip, I wanted to cancel. My dad said no. He insisted that I take the trip. He felt that I needed to live my life and not put it on hold for him. I wasn’t sure, I had already put so much on hold for him. But his recovery was going well. I only turn 40 once. So, with a twinge of guilt, I left him for two weeks, and went with my family to Bali.
I returned from Bali and before I could even get over the jet lag I was back on a plane to New Jersey. But this time I went without the kids. My other stepsister in Mexico was having a baby and my stepmother was going to be with her. I knew less family meant less babysitting, and with my dad having daily radiation, managing the two would not be possible.
My father had started radiation during my Bali trip and he, so far was doing well. But I showed up and my stepmother left just as the radiation effects were starting to kick in. I knew I was in for a lot of work, but I had no idea how mentally difficult it would be.
My father had handled chemo really well. His recovery had gone great. Everyone had the false hope that radiation would be just as easy. But it turned out to be the most difficult part of this whole battle. The combination of chemo and radiation created a lot of fatigue. He lost his taste buds. He started to develop painful mouth sores. He started to rapidly loss weight due to his lack of desire to eat. The worst part; the doctors really didn’t have encouraging or good news. They continually said that it would get worse. It would be more painful. The taste buds may not come back. The ringing in the ear could be permanent. There were times where we all wanted to give up. When we asked the doctor how we knew it was working they responded “If it doesn’t come back in two years, it worked”. Really? That wasn’t encouraging news.
The worst part was my leave was up before the radiation was done. I could have probably gotten an extension, but my daughter was not doing well. She was fitful, sad, whining, and missing her mom. No one, and I mean no one, was a good enough replacement. My husband pleaded for me to come home. I had spent three months away. It was time to get home back on track.
What did I learn this summer? I discovered how much mental strength I have, and the ability to dig deep when someone needs you. I learned that my kids like NOT having a structure. They enjoyed the carefree summer, and were not that excited about returning to camp at the end. But I also learned that my kids need there mom, and without mom home and present, the house starts to fall apart. I enjoyed every moment I had with my East Coast family, and feel the pain of being so far away more acutely than ever before. I learned that I didn’t need to prove myself in the work place to be a leader, respected and looked up to. That the things I do on the home front are just as important, even more difficult, and test my leadership in a way that work never could. I learned I don’t need work to fulfill me, that there is so much more in my life. I learned that sometimes you need to be faced with a truly difficult challenge to understand your strength and worth.
My dad is done with treatments. After:
- 3 rounds of chemo
- 2 different teams of doctors
- A 12 hour surgery
- 2 more rounds of chemo, and
- 30 radiation treatments
My dad was able to ring the bell symbolizing the end of treatment. It wasn’t the end of side effects. That took another several weeks. I remember when he called to say he could taste salt again and his appetite has returned. The ringing him his ears was going down. He is starting to feel more “normal”.
Three months post radiation, my father did his first pet scan since treatment, and it came back clear of any other tumors. For now, we are safe. We will forever have to live in fear of this returning. That will never go away. But having treatment behind us has given us all a new zeal for life. We as a family decided we were done with the false excuses we put up and added a a dog to the mix. He’s made us complete again. We booked a trip to New Jersey to spend our first Christmas in years with the family. And a giant group of us are all going to see the Rockettes in Radio City Music Hall. Something we said we would do, but never got around to. My husband and I are planning that trip to DC, where we always wanted to take our kids. And we planned a trip to India and a trip to Hawaii. We decided that life is too short to waste and we want to have all the experiences now.
Was this summer hard? Yes, harder than I ever imagined. But it was also one of the best I’ve had since childhood. While I don’t wish cancer on even my worst enemy, I hope that anyone who deals with it has the love and support that we had this summer. I hope you have the chance to take the time to be with your family. And to cherish every moment, because it can end so much quicker than we all imagine.
*Stared photographs taken by Atma Photography