Sorry, it’s been so long since my last post! Between the daily commute to radiation, work, and trying to maintain a somewhat “normal” home life, all while battling side effects, there were not enough hours in the day. However, just in time for Thanksgiving, this is a post for which we can all be thankful.
The radiation phase of my treatment had a two-pronged approach. Daily rounds of targeted radiation in addition to morning and evening doses of oral chemotherapy.
Let’s start by talking about the chemo portion. The poison of choice this time was Xeloda, a not-so-scary looking pink tablet that came in a bottle labeled “wear gloves when handling.” Handle with gloves, and then shovel four of them into my mouth and swallow, got it. Similar to the 5-FU I got during infusions, this drug works by not allowing cancer cells to heal themselves after being destroyed by radiation. I had to take eight of these pills a day (four tablets in the morning and evening) each day I had radiation. For the curious type, these pills typically retail for about $20-80 per tablet. I know this all too well because I had to pay out of my pocket for the last 24 of them… #InsuranceDrama
The chemo pills had fewer side effects than the infusions but were harsher on my stomach, imagine that. They also added to the numbness and tingling in my fingers and toes, which is still very much there as I clumsily ham finger my way through writing this. The neuropathy should go away over time, but it may take several years before it finally disappears. Worst case scenario, the numbness, and tingling stick around indefinitely, and I learn how to cope with it.
Now let’s move on to my daily ritual for five-and-a-half weeks. Each morning after breakfast, I’d start my day by popping ~$150 worth of chemo. After working for a few hours, I’d make the 45-minute commute to the university hospital. On my drive, my mission was to drink enough fluids to fill my bladder by the time they called my name for treatment. They have you fill your bladder to shift things out of the way from the radiation beam. Side note, I promptly learned there is a fine line between having your bladder filled and feeling like you are going to wet yourself.
After navigating the parking ramp and being greeted by one of the friendliest receptionists I’ve ever met, I waited my turn to get called back to the radiation suite. I received treatment in the same room every day, usually by the same radiation techs. In the suite, my identity was verified (you don’t want to radiate the wrong body part), I was ready to shed my pants and hop onto the machine.
As you can imagine, getting in the correct position is essential, as to not expose any unnecessary areas to radiation. So, after laying on the table, I placed my feet into the mold created during the simulation process. It ensured my legs don’t move during treatment. I also had a neck pillow to guarantee I didn’t flop my head around while being zapped. Finally, I was given a green ring that resembled a dog toy, which I held at chest height to ensure my hands and arms stayed out of the way. Now my job was to lay as still as possible while the technicians positioned me by sliding me around with sheet I was on. Using the three tattoos (one on each hip and one, inches above my manly bits), they aligned me with the laser beams coming out of the walls and ceiling. They also ensured the X, Y, and Z coordinates were correct on the table position. Once I was in place, they turned up the music and left the room to start the treatment
During the first part of the treatment, the machine took a CT image, allowing the technicians to ensure exact positioning by remotely tweaked the position of the table. During my first session, I wasn’t expecting the table to move, so I was a bit startled. “Luckily,” I had 27 more sessions to get used to it. The CT also let them spy on my bladder to ensure it was full enough. With positioning complete within a few millimeters of accuracy, the actual ionizing radiation session could begin.
The machine rotates around you as you lay still on the table as it delivers radiation to prescribed areas. My treatments began with the machine somewhere near the six-o’clock position. Before the actual radiation beam turned on, I heard a series of mechanical noises as the machine adjusted to ensure the correct beam pattern. The device does this by changing its shutter to a specific pattern model created during the simulation session. The best description of what this looks like is one of those pin art toys that were popular when I was a kid. Except this “pin art” toy is made with lead baffles to block radiation, allowing it only to escape through the patterned openings.
With everything in place, it was time to be blasted. I heard a few final clicks and then a somewhat high-pitched buzz for about three seconds. That was the first short burst of radiation. I felt absolutely nothing, no burning, tingling, itching, nothing. Then there were more mechanical noises as it created its next pattern, followed by more clicking and a high-pitched buzz. After four times, the machine rotated clockwise, clicking and buzzing its way through nine different positions. Yep, I counted each location and number of cycles. There isn’t much to do when you are laying completely still, making sure your balls don’t get nuked. Overall the whole radiation treatment only took about 10-15 minutes. After the techs came back in and lowered the table, I’d hop off, throw on my pants, and make a mad dash to the men’s room to empty my poor bladder. The final part of my daily routine was taking my second dose of chemo, and boom went another $150.
After my first week, I felt no side effects from the radiation. The chemo was giving me an upset stomach and some nausea, but that was about it. I met with my radiation oncologist after the first t few sessions; it was concise since I had nothing of interest to report. Weeks 2-3 were also uneventful in terms of radiation side effects; however, the chemo increased the amount of numbness and tingling in my fingers. Then we hit week four, and the side effects train came arrived like clockwork.
After my radiation session on Monday of the fourth week, things were going ok until we were getting ready to head off to an event with our kids. Suddenly my stomach began to cramp with a vengeance, I knew I’d be staying home. After 10 minutes of awful cramps, I had to run to the bathroom. Some of the side effects of radiation treatment for rectal cancer include cramping, diarrhea, nausea, skin burns, and so on. I was hitting stops one and two on the side effects express in rapid succession. After many trips to the bathroom, I headed to bed, waking up at any sign of stomach trouble. I had officially entered “never trust a fart” territory. Radiation side-effects are cumulative, much like those experienced by chemo.
The next day, I felt somewhat better, and most of my stomach discomfort went away. I’m glad the side effects stayed away for the first three weeks; this gave me time to build up a friendly rapport with the radiation technicians. It made it easier to go in for treatment each day, but it also made it easier to discuss side effects without feeling highly uncomfortable. I let the technicians know about the cramping so they could put it in my chart. That’s where the friendly rapport came in handy because they joked with me about understanding what it feels like to be a lady during certain times a month.
When I met with the radiation oncologist the same day, she said the cramping was a common side effect. She suggested Imodium for diarrhea and some Ibuprofen for the cramping. With that advice in hand, I began my journey home. I made it about 90% of the way home before having more cramps again. Of course, we live in the country, so there is absolutely no place to stop to use the restroom. Increasing my speed a bit, I embraced my new empathy for females and practiced my childbirth breathing techniques. About 99% of the way home, I was already planning out how to clean my truck seat when I finally pulled into the driveway. With milliseconds to spare, I made it to the bathroom. It was then I realized I needed to pack an “oops I crapped my pants” bag for my truck.
I gathered a backpack and threw in a complete change of clothes, nitrile gloves, wipes, and Imodium. I didn’t want to be caught unprepared in the future. The rest of week four was reasonably uneventful. I discovered that if I only ate small amounts of food before traveling, I could usually avoid a poop emergency. During week 5, this didn’t really hold true.
I found myself getting tired after my commute home, so my father-in-law volunteered to drive me to one of my appointments. Since my treatment was close to lunchtime, we stopped at a fast-food place on the way. I ordered a burger, obviously ignoring my small meals rule. After we finished eating, we hopped in the car to complete the last 10 minutes of the drive. You guessed it, about 5 minutes away from the hospital, my body went into CODE BROWN mode. I’m relatively calm under pressure, so I asked my father-in-law if he could use the valet so I could tuck and roll when we got there. Luckily he agreed, so as we got closer, I gave him instructions on where to meet me inside the massive hospital. Then I switched into full don’t shit in your father-in-law’s truck mode. As he pulled into the valet, I grabbed my oops I crapped my pants bag and bailed out of the truck. Speed walking my way to the bathroom, I felt sorry for everyone along my path. At this point in my treatment, I lacked enough muscle control to contain any gas. Somehow by the grace of God, the one stall was opened when I Van Dammed the door to the bathroom opened. I made it just in the nick of time.
After that episode, I took two Imodium to calm things down so I could make it through the treatment session without any incidents. Luckily, they were running a bit late, so the medicine had time to kick in. Fortunately, the drugs did the trick, and the radiation session went off without a hitch. Thankfully the rest of the week went reasonably smooth, and I avoided further CODE BROWN incidents.
The final three sessions went great, but the last one was bittersweet. I was thrilled to be done with my course of radiation, but I am going to miss the awesome radiation techs, I had gotten to know over the last month-and-a-half. Having such excellent, personable radiation technicians really made it easier to go to treatments, especially in the final weeks where it got tough. I’m incredibly appreciative of everything they did for me and all the other patients.
Ealy in my treatment, I bought a pair of Bob Ross “happy cloud” socks to bring some personality an make things more fun. The technicians loved it, and so did I, so apparently this became my thing. One of the technicians joked that she didn’t have any cat socks even though she was known to her co-workers as the “cat lady.” So, I went on to Amazon and ordered a pair to show my appreciation for everything she has done. Plus, it’s always lovely to welcome another member to the cool sock club. Based on her reaction, I’m not sure many people give appreciation gifts to radiation technicians. I thought she was going to cry; she was so thankful for the socks. While we are still talking about socks, my wife is awesome. She bought me a pair that says “Certified Pain in the Ass” (very fitting for the situation) and ones I wore on the final day that said, “Like a boss.”
On the final day of treatment, I also brought in some chocolates to share with the entire radiation tech team. My wife is a glass jewelry artist, so we picked some of her blue pieces to share with my radiation techs and the reception team. Blue is the color of the colorectal awareness ribbon, so I thought it was fitting. It’s the least we could do for this team of hard-working folks. I’m genuinely grateful for all the excellent medical staff I’ve met along my journey.
On my final day, I was given the option to ring the end-of-treatment bell in the waiting room. Since being diagnosed, I’ve read a lot of other blogs and articles discussing cancer, cancer treatment, and the emotional roller coaster everyone experiences. It turns out, ringing the bell can be a touchy subject. Those with terminal diagnoses face indefinite radiation treatments to slow the progression of their tumor, buying precious time before the imminent happens. There are a few schools thought, one where folks facing a terminal diagnosis want to share in the joy of others completing their treatment. While to others, hearing the bell only reminds them of the inevitable. I chose not to ring the bell. Not because I didn’t want to celebrate, but out of respect for those patients in the waiting room that may never get to ring that bell.
It’s been one-week post-treatment, and it feels strange not driving to treatment each day or take multiple doses of poison per day. One of the downsides of this is fewer distractions from the side effects. I’m still experiencing cramping from the radiation; however, the most annoying issue is unexpected poop emergencies. The pootastrophies are a result of internal burns and muscle damage from my 5.5 weeks on the fancy “tanning bed.” This also leads to painful bowel movements, I liken this to trying to poop out razor blade coated in peanuts. To remedy this, they suggest low fiber foods and stool softeners; however, this can lead to loose stools. Talk about walking a fine line. Needless to say, I learned the hard way not to venture too far from the restroom this week. I’ll spare you the details of that experience.
I’m only experiencing one prolong side effect from chemotherapy, but its an annoying one, neuropathy. My fingers and toes feel like they are asleep and just started to wake up a cross between numb and pins and needles. My feet are probably a bit worse than my hands. It is bizarre not being able to feel your feet make contact with the ground while walking. On a positive note, I’m still able to type, button my shirt, and perform most tasks successfully. However, I have noticed myself dropping things more often since I cannot tell exactly how hard I’m gripping things. It may take several months for the feeling to come back. There is a rare possibility that the neuropathy may be permanent, but I don’t even want to think about that.
Now I’m in a holding pattern for seven more weeks to give my body time to heal from the radiation treatments. After that, I have another round of CT, and MRI scans followed a friendly scoping. The results of these tests will help ass cancer Jesus determine if surgery is required or if I meet the protocols for the wait and watch approach. I’m hoping for the wait and watch option since it means avoiding a complicated surgery. With wait and watch, I would require frequent scans to ensure my ass cancer remains in remission or they catch any new growth.
So for now, the only thing I need to do is rest, recuperate… and start my new job. More on the whole job ordeal in a future post.