Friday, January 15th was my last day of radiation. I guess this is to be celebrated, another milestone in this ‘journey.’ In fact, I did receive a nice certificate commemorating the achievement (see figure). However, I have been resistant to any form of change since 10/29/15. I felt the same way about starting radiation. Maybe it’s just marking the passage of time (3 month survivor!). Or maybe I just feel like I had completed first line therapy but wanted to keep doing something. I feel okay — let’s keep irradiating this thing (okay, that would burn a hole through my skull). Fatigue, my primary side effect, has a great, low cost remedy: an afternoon nap. Nausea has Zofran, headaches have Decadron, other pain has narcotics, but I just needed a good nap with Mia. I sometimes wonder if I exaggerated this symptom in order to justify increasing the dose and frequency of my naps. Sometimes Staci joined me, preventing a deep sleep, but kept my on the very local Staci Protocol.
My radiation was going well. The morning trips to radiation became a routine, usually with Staci, not infrequently with Uncle David, a couple of times with friends, and finally with my PCP. Although I could drive, Staci insisted I went with somebody. My head has been irradiated 30 times over the last 6 weeks. Most of ‘radiation’ is travel time. I would drive (or be driven) through EGR and East Town to the “Medical Mile.” Uncle David enjoyed taking every possible route, where I have just turned right on Diamond Ave and left on Michigan for years. After the drive, we would park (valet, of course, I have cancer), check – in, gown up, and wait. They are quick at radiation, so the wait is not long. Once they called me back, they might as well have called the valet to bring the car back up. I would lay on a table, head pinned down, gowned with that warm hospital blanket for only about 10 minutes. For all the discomforts of receiving medical care, the warm blanket is a medical breakthrough. You put these bland, thin, cream colored blankets in an oven for about 10 minutes, and out pops pure comfort. The recipe could not be easier, but I advise making sure your own blankets are oven safe prior to trying this at home. I told the technologists to just put it into my file: Craig Alguire is a 39 year old man, he has brain cancer, and will accept a warm blanket every time for radiation.
Figure: Left, Uncle David and me. He was a “Healthy Visitor” that day according to his sticker. Right, trying to figure out who would fit into the midriff gown. Always go long.
Okay, back to the nuts and bolts of radiation. I wondered laying there (with my head screwed down, under that warm blanket) if I could actually feel the radiation. Is it that tingle on the scalp? Some burning sensation? The brain is amazing in that you can focus on a body part, and then become acutely aware of sensations generated from that area. Try it. Think about your scalp. Your brain is bombarded with input, but can mostly block out redundant input. I could hear the Rapid Arc radiation machine make adjustments, take aim, and fire with an ominous, high pitched beam somewhere toward my head. Without the auditory cues, I would undoubtedly have no idea if the whole ordeal started. The mask was so tight, I could barely open my eyelids to see anything, anyway.
After my daily dose of ionizing radiation, we would reverse the process: gown off, shirt on, check out, valet, drive home. If with Staci, we would pick Mia up from the Susan Wolford’s daycare — very difficult to get in to this free daycare with its 1:2 ratio. Uncle David would drop me off, scraping the car along the bushes I never got around to trimming. Otherwise, I may go out for breakfast with family or friends. I wondered through it all if 7 days a week would be superior, but no clinical trial would compare 5 days of therapy vs. 7. Who wants to know that? Keep the weekend the weekend. The patients need them, too. We are practical in research.
I have a radiation badge at work that serves to measure my total exposure each year. A cumulative geiger counter for the year. It ensures that I don’t receive too much cancer causing radiation through exposure in cath lab (not there very much) or nuclear lab. I have gone over it by a thousand fold at this point. The beam was targeted right at my left frontal lobe, right at the sweet spot. It is odd that, once you have cancer, you double down on radiation. Minimize exposure if cancer free, but blast away once it’s there. A cause and a cure of cancer.
It took a while to feel at home at Lemmen Holten, Spectrum Health’s cancer center. I walked by it for 5 years, never entering. The Meijer family was the largest donor for the building, but the Fred and Lena (yes, I affectionately call them by their first names around the office, but never met them) probably did not see the value of having another building with their name on it in town. A bit ostentatious for their style. So, the Meijers donated the money, and their friends Lemmen and Holten donated their name.
The building is beautiful, staff from valet, clerks, technologists and most doctors have been consistently great. I just felt out of place. Maybe a bit smug at first? Early in the 6 week treatment course, nobody could tell if I or the driver was the patient. I was too healthy to walk among these ‘sick’ cancer patients. Staples were long since removed, and I sported a fine combover, and felt almost back to normal with no neurological deficits (or, at least, unaware of any deficiencies). After check in, I would need to put the gown on. I was proud that the gown would be my only tell.
Figure: Left, the impressive lobby of Lemmen Holten. Upper right, the grand piano that plays with or without a pianist. Lower right, my locker room.
With GBM, I just did not get the social chemotherapy experience at an infusion center. The chemotherapy with GBM is pretty uneventful. Maybe just a nonevent. Have you taken ibuprofen in the morning? Pretty much the same ordeal except you need to be fasting prior and after the dose for about an hour. I wish it hurt more, something to tell me it was actually doing something. I can take more pain to punish these mutinous cells. I held Staci’s hand a few times as a swallowed the Temodar in the AM. “Okay, thanks for being there.” Or I announced to the kids over their Lucky Charms that I needed to take my chemo, swallowed, and then just poured their milk. I took my last dose of that 1/17/16, but will continue taking pulses for 5 days a month or so. And Pembro, which I’ll ride every 3 weeks as long as it works.
But at radiation, I was among the other recently diagnosed. I would check them out, wonder about their story, see the people they bring. Cancer therapy is a real cross section of life. A truly integrated, equal opportunity disease: we are black and white, rich and poor, old and young. A cardiologist, young African American woman attending GRCC with recurrent GBM, old couples holding hands and young parents still in shock as their child was treated. I envied the lovely couples in their 70s. They made it. I wanted their extended timeline. This is normal for them, although they probably feel differently.
The only time I cried at radiation was early in the course. Three males were at check in. They looked like they came in from deer camp. A striking resemblance, but all about 25 years apart. A 12 year old boy in a camouflage jacket, a middle aged man, and a 60 something man. It was their first time checking in, and all 3 walked up to the desk. I truly did not know who the patient was. Prostate cancer for the elder? Lung or rectal cancer for the middle aged man? How was I supposed to make a diagnosis when the patient would not step forward? They were completely serious, and tears were left at home.
“Name please?” And the 12 year old spoke his name and date of birth while his dad and grandfather looked on. I should have known. It was 10 AM on a weekday. Surely he was not skipping school to go to his father’s treatment. I know children get terrible diseases, but I cried because of the 2 generations of support. Stoic support. Just showing up because there was nothing else they could do. Schedules cleared, appointments cancelled. The father and grandfather had one thing in common, and probably hurt more than the 12 year old. It was not natural. I have not seen them since, but think of them often.
We mingled with the patients, briefly but repetitively. At week 3, I was with my people. My hair and pride started falling out in the shower. At first I thought the hair could stay in place if I did not wash it too vigorously, or pull on it, but soon even a strong breeze would suffice. They told me it would be ‘patchy’ hair loss: a significant understatement. I imagined nickel sized areas, not dollar bills. So on Christmas Eve, halfway through my radiation treatment, I shaved what was left. Brother by law John Ackerman got to polish his barbershop skills, and I finished it off with a blade. When I returned to radiation for my last 3 weeks, I was unmistakably the patient. Scar up top, shiny dome. I am the one that has cancer. I’ll take the valet parking and warm blanket, thank you.
Figure: The evolution of hair loss with surgery and radiation. Top left, not too bad. Top middle after a shower starting week 4. Top right, still holding on with combover. Lower left: resistance is futile. Bottom right: shaved.
Over the next couple of weeks, I plan to restart work. I’m mentally and physically ready, and need to start planning on being a long-term survivor. I just cannot process anything else. So, watch me whip, watch me nae nae. Watch me work, watch me be normal again?