Radiation, Again: Not the Journey We Expected

Radiation…again. This was not the journey we expected, especially as we approach the holiday season. And yet, here we are, orchestrating our days again around daily treatments. But, this time, it isn’t for me but for Dave.

It took months to get to an accurate diagnosis. I won’t go into the nightmare here right now, but the short version is that the skin cancer on his ear had been misdiagnosed for the entire year. Finally, at the end of August, he got the real diagnosis.

It was extensive skin cancer that had infiltrated through all layers of his skin, cartilage, and perhaps into the back of his ear.

Wounds don’t close when they are cancerous.

Cancer Decision-Making & Planning While on Vacation

It didn’t matter what we felt; Dave needed to make a decision. As frustrated and angry as we both were on the journey to a diagnosis, there was no way to go back.

Many hours were spent on the 405 getting down to his new care team, unpacking the treatment options, and living from moment to moment, never knowing when the latest bit of bad news was going to come via MyChart or over the phone.

His options were surgery in the operating room because- it was too extensive to be treated with Moh’s or radiation. For some types of skin cancer, radiation can be curative.

The surgeon recommended that Dave seek a second opinion with the radiation oncology team and see if that would be another treatment option. Before we left for France, he had two consultations with the radiation oncology team, who were very confident in the effectiveness of that treatment plan.

After those consultations, Dave was leaning towards surgery. We left for our vacation to France with a surgery date on the calendar.

Then, we kept noticing more changes on the skin. More areas were bubbling and bleeding. Was the cancer more widespread?

We sent photos and messaged his team from France. With the possible increase in the scope of his cancer, he needed more appointments and possibly more biopsies.

Communication was disjointed and hampered with the time change. We needed to get on the phone several evenings to schedule appointments and get our questions answered.

Once the appointments were scheduled, there was nothing more to do except enjoy our vacation (and try not to have too much cancer anxiety)

The Change from Surgery to Radiation

We returned from vacation, relaxed, jet-lagged, and dove back into cancer decision-making.

The cancer was much more widespread than it had appeared to be. Instead of removing a small section of the ear, leaving a pathway for reconstruction, the surgeon intended to amputate the top two-thirds of the ear to remove the cancer with clear margins.

There wasn’t going to be anything left to reconstruct.

We were horrified.

As Dave discussed possible reconstruction options with the plastic surgeon, it became clear that radiating was the only way to preserve any cosmesis.

We left the appointment, rode the elevator downstairs, and let the radiation team know that he’d decided on radiation.

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From Treatment Decision to Radiation Mapping in Less Than 24 Hours

We had just returned home after slogging through LA traffic when Dave’s phone rang. The local radiation office, where he would be treated, had a mapping and planning appointment the following day.

Less than 24 hours after making a treatment decision, he was lying down on the radiation table getting his mask fitted.

There was no more cancer-decision anxiety but plenty of shared treatment anxiety to go around.

Reflections on the Radiation Journey So Far

As we have been walking through this, I’ve been reflecting on my social media accounts (@mmejendouglas).

Here are some of my radiation reflections thus far.

On the Eve of Treatment:

Cancer doesn’t take a vacation. As we were enjoying our time in Nice, we were also dealing with cancer decisions. Tomorrow, Dave begins radiation treatment for skin cancer on his ear. It will be a long treatment regime, as the cancer is widespread and has penetrated much of his ear, including the cartilage. He will have 33 treatments.

Radiation offers him the opportunity to preserve the ear. The surgical option was an amputation. As I navigate the waters of caregiver and not patient, I remember my own radiation experience. The anxiety is present and real. So is the sleep deprivation.

Tomorrow, Dave’s treatment begins. Cancer is hard. The decisions are not easy. Neither one seemed like a good choice. It took many appointments for Dave to unpack the options and make his choice. Now, his treatment journey begins.

Day One:

It’s been five years since my radiation treatment. Today was day one for my husband. His treatment will go for a total of 33 treatments. This is going to be a long haul. I am exhausted & weary. My lived experience reminds me the side effects will be cumulative. Cancer is hard.

Week One Reflection:

About this week… It was hard. So much about Dave starting radiation was activating. I remember what it was like to be alone in a room while the radiation hit me. Doing it over and over again seared both my skin and also my soul. It’s hard to watch him experience it. The impact on his skin, his body, and his mental well-being is real.

As we began to settle into a new routine this week, I realized my repeating calendar events weren’t serving me. I’m not really sure when I’ll be up to writing or laundry or other things. Rather than having those reminders of pre-treatment life sitting on my calendar, talking to me, I threw them out. Right now, we have a different pace. And that’s what life needs today.

Slower. Gentler. Calmer. One week down.

Five and a half to go.

Week Two:

Week 2 of radiation treatment is done for Dave. We are settling into a routine, and he is tolerating the treatment. Unfortunately, the office was running behind schedule for most of the week, so the round trips took longer…

It isn’t fun, and the skin impacts are real. This week was full of non-cancer challenges (a blocked sewer drain), which added complexity and challenge. We are already emotionally drained and then to have the house problem on top of it wasn’t fun. It got fixed quickly by our awesome plumbers, and we moved on. I’m grateful for the quick resolution to a frustrating problem.

Watching the Dodgers win the World Series was amazing! I am a huge baseball fan and watched almost the entire Dodgers postseason. It was such a wonderful and joyful moment to share with Dave and Ken! We are heading into the weekend, which means two days off treatment! Yay!

Week 3: Day One

The week has begun again, and so does treatment. I woke up with a feeling of dread, knowing that he has five more to go this week. Today will mark one-third done.

So many more to go.

The journey continues.