Cancer Diaries: I Rang The Bell Today, Oh Boy

I could've changed into street clothes, but this was me right out of the tube-- with Roland and two techs who helped me for 2 weeks

I rang the bell today, oh boy

Another lucky man who made the grade

You get to ring that bell— 3 times— when you’ve completed your treatment. I just had, my fifth and final radiation treatment in a Stereotactic Body Radiation Therapy machine (SBRT) run by MRI, allowing higher dose radiation fewer times than the older model guided by CT. There are only 10 of the new ones in the country. City of Hope doesn’t have one yet on the Duerte campus where I’ve been getting treated for a decade. But… two hours down the 5 Freeway on the new Irvine campus, they do have one.

When the oncologist and surgeon mapped out my treatment, I didn’t know about the new model SBRT and they decided I would have 20 sessions of radiation— 5 a week for a month. That sounded like torture, especially when they threw in that I would have to take a chemo pill before and a chemo pill after. I couldn’t stop complaining and they finally offered me a “deal.” I could go down to Irvine and get treated there, 5 sessions and no chemo pills. There was all that driving back and forth though.

The doctors said it would be safe for me to drive. Luckily, Roland offered to drive me. On the first day, I puked 4 times on the way home and fell into a deep sleep in the car. When I got home I had to decide if I could lift myself onto a couch or just sleep on the floor. The couch won and I woke up 6 hours later when I had to drag myself to the bathroom.

I’ve spent a lot of time in the bathroom over the last two weeks. The 5 sessions are spread out over two weeks. Like I said, today was the last day. Aside from the fewer sessions and the absence of chemo pills, the reason the machine was created and the reason I was in such a panic before I was offered it, was because the old one, I had heard, isn’t always as focused nd precise. This one allows the technicians to target the tumor while minimizing radiation exposure to surrounding healthy tissues (and organs). This MRI-guided SBRT is supposed to lead to a reduction in long-term side effects like urinary and bowel toxicity.

I just finished 4+ months of chemo so I’m exhausted and drained already. I was surprised how horrible this made me feel. And one of the techs said to expect the misery to increase for the next couple of weeks before tapering off. Oh boy.

One of my oldest and dearest friends had a cousin and the husband of a close friend diagnosed with pancreatic cancer ate same time I was. Neither made it. So why did I? I caught it quickly. I reacted to weird symptoms— very dark urine, very pale stool— and called any doctor. Come down here immediately, she said. When? Right now. She saved my life, again. The other problem is that they went to local hospitals instead of cancer hospitals on the cutting edge, the way City of Hope is. Like I said, there are something like 10 MRI-driven SBRT machines in the country. The chance of one being in your local hospital? Exactly zero. It needs a new gigantic, specially shielded room. The main City of Hope campus is building a new building for it. It’ll be ready in 3 years. For all my complaining about the 3-4 hours of drive time, I know how lucky I am to have that Irvine campus so close. People fly there from all over the world.

Other hospitals worth getting to for cancer treatment besides City of Hope:

• Anderson Cancer Center (Houston)

• Sloan Kettering (NYC)

• Mayo Clinic (Rochester, MN)

• Dana-Farber (Boston)

• Johns Hopkins (Baltimore)

• UCLA (L.A.)

• UCSF (San Francisco)

• Penn Presbyterian (Philly)

• Moffitt (Tampa)

I also read that the University of Virginia Health System in Charlottesville has installed an MRI-driven SBRT.

Ringing the bell is supposed to mark the end of something— treatment, pain, fear— but I know it doesn’t really. It’s more like the closing note of a long, strange movement in a piece that keeps playing. I don’t feel triumphant. I feel scraped down to the bone, grateful but unsure what to do with that gratitude. The bell isn’t an exclamation point. It’s a pause. A moment to remember the ones who didn’t get to ring it and a  moment to breathe and whisper to myself: I’m still here. I’m not finished. Not yet. Next month: surgery to remove what’s left of the tumor.