Radiation can kiss my ass
I know, I know… it’s been over a month since my last post. I tried to make time and write several times and chose to nap instead. I hope you understand, although it’s a tough thing to explain unless you’ve been through it. This severe fatigue that has plagued me for the last year became so much more frustrating since I returned to work, but I know it will get better soon. I’m officially done with treatment! As of last Friday, I completed 17 torturous rounds of radiation. Every weekday I would drive myself to the hospital at about 4 or 5pm after working a full day, nearly falling asleep at the wheel on more than one occasion. It was hard and stressful and unpleasant and scary and now I’m done. I had wanted to document the process as I was in it, but I just couldn’t find the energy to get the words out. Now that I’m done, maybe I’ll have a good perspective on the experience.
So, I went in on Wednesday 4/21 for my “dry run”. This was the first time I got to see inside the radiation rooms. If you recall from my last post, there are 3 radiation rooms - Tranquility, Serenity, and Harmony. That first day I was in Harmony for my practice run and immediately felt like I was in a spaceship about to get probed by aliens or a zoo exhibit where people would come and stare at me from the other side of the glass. It was all very surreal and foreign. That first day they walked me through the process - I would check in, wait in the sad waiting room with the other baldies and sickies to get called back, then I’d get led to one of the 3 rooms where I would need to verify my birthday, check my name on the computer screen, and they would look at a picture of me on their monitor to make sure they had the right patient. Just before entering the room is where the technicians would be with all of their computer screens with various scan images and x-rays of my abdomen with lots of buttons and switches like a NASA control room. Then I would walk into the spaceship pod and take my shoes off and lay on the bed. Under me would be the beanbag mold they made of me so I would slide my feet into position and shimmy my pants down (below the cheeks) so they could see the markers they put on me. Over the last year I’ve become very comfortable with being uncomfortable - there’s no room for modesty during cancer treatment! I never imaged so many people would get to see me bare-assed on a hospital bed, but here we are. Next they measured where they had put the temporary markers - one on each hip and one on my lower belly. They lined me up with the lasers that were coming from each side and one coming down from the ceiling. Next they left the room and flipped the switch to start the machine. The giant robot would rotate around me and an x-ray would come down to take more images so the technicians could make sure it was lined up correctly from their control station. Once they determined they had me in the right place, they came back in to give me some new tattoos. Now, I have several tattoos by choice, so I wasn’t really worried about this part, but I was confused when I didn’t hear the calming hum of a tattoo gun. Turns out, you can also administer tattoos with a needle filled with ink. This is far more unpleasant for some reason. They have to pierce the skin to get the ink deep enough so that the tattoo dots will stay visible throughout the course of the treatment. I can barely see them now, but when they were done it hurt a lot - maybe because of the location. I have dots on both hips right where my leg meets my torso - right on the underwear line, and another two dots going vertically on my abdomen just below and to the right my belly button (my right not yours). They bled a lot and hurt for the first few days, but now I have to really look hard to even see them.
The next day, Thursday 4/22 was my first official day of radiation. I returned to the radiology center at the Kaiser hospital in Anaheim each weekday for 17 straight weekdays finishing my treatment on Friday 5/14. Each day was very much the same - check in, sit in the sad lobby where HGTV was always on, wait for someone to yell “Patten”, follow a masked technician back to my space pod, check name on screen, state my birthday, verify terrible shiny-faced photo of me, shoes off, hop on bed, shimmy down pants, get jostled around by technicians to get into place while I played dead to not interfere with their positioning (I found it best not to try to help - they know what they’re doing and I clearly do not), then they’d leave the room and flip the switch and I’d lay back and listen to music blaring over the buzzing and whirring of the giant robot, and in a few minutes it was all over. When the technicians came back in, that was my queue to pull my pants up and hop off the table, slip my shoes on, and run away as fast as I could without making eye-contact with anyone in the waiting room. Then I would drive in rush hour while listening to murder podcast to ease my nerves, return home to finish work, eat dinner, sometimes go with Eric and the kids to Taekwondo if I was up to it, and then hopefully get to bed early to start the process all over again the next day. Some days were worse than others. Some were almost enjoyable. Somedays there would be good music in the radiation room and I would feel inclined to take a car selfie and post the song that played while I got probed, and other days there would be no music and no pleasant conversation with my technicians. I had a lot of the same techs regularly which was nice. There was one guy named Eric (naturally) who would talk to me about weekend plans and kids and work - I tried to get him to buy a Taco Bell in Kentucky with no luck. It felt good to be treated like a human and not like a cancer patient - I’m sure it’s not advisable for them to get too friendly with us - they must see so much death and loss and I can’t imagine being on that end of it.
Highlights from the radiology pod song selections: “I Can’t Make You Love Me” Bonnie Raitt, “Who’ll Stop The Rain” - Creedence Clearwater Revival, “Careless Whisper” - George Michael, “Pale Blue Eyes” - The Velvet Underground, “Low” - Cracker, “How Much I Feel” - Ambrosia, “Hook” - Blues Traveler, “The Lady Is A Tramp” - Frank Sinatra, and my favorite, “I’m Not In Love” - 10cc. A real weird mix, but I think everyone can agree there were some real winners in there too.
There was one day when a nice older couple who was sitting across from me, as I feigned interest in The Property Brothers, started talking to me. I could sense from the wife that she was the “patient” and she seemed really anxious. It was her first day there and didn’t know what to expect and had a lot of questions. I walked her through what my experience had been like and explained that there is no pain during the radiation and pretty minimal side-effects, very different than chemo. She let me know that she’s doing chemo at the same time as radiation - something I’m really grateful I didn’t have to do. She went on to tell me she has stage 4 brain cancer. I froze at that info. I didn’t know what the right response should be. I told her I was sorry. She wanted to know about my cancer and what treatments I had and I told her all about the 100 hour infusions and taking the chemo home with me on a pump. I think I wanted her to know that it sucks for all of us in different ways. I really hope our conversation calmed her nerves. I didn’t ever see her again.
Radiation side-effect: Severe fatigue, tender skin in the radiation area, frequent urination (a little burning), and so much diarrhea. They weren’t kidding around when they said they would be radiating my bowels and man I felt it. I’ve been on a very bland diet of bread and rice and imodium with no relief for weeks now. They told me this would start to get better quickly and I sure hope they’re right. It’s been terrible, seriously awful, and one of the worst reasons to have to give to my employer as to why I need to keep working from home.
By my last day, I was so completely exhausted. My technicians congratulated me on finishing treatment and then I went in to see my radiology oncologist where they went over next steps and possible residual side-effects, and then I was sent home. Released back into general population with severe trauma and physical scars and told to get on with my life. I spoke with my regular oncologist that day as well to go over the plan moving forward. I will get another scan in 3 months (CT not PET) - so that will be in August. Then he said depending on the results of that scan they would decide to scan again in 3 or 6 months after that. I told him that I would feel safer getting scans every 3 months especially since my whole tumor grew from nothing to a grapefruit in less than 6 months. He told me that I’m still thinking like someone who has cancer and I need to start thinking like someone who doesn’t. Easier said than done, but I see his point. I’m not quite sure how to move past this though. This illness has consumed the last year of my life - from the excruciating pain to my diagnosis, to chemo and lonely hospital stays, and now radiation - it’s all in the rearview, but still something that will live in my brain rent free forever. This experience and how it’s changed me as a person will never be over. I will forever be a person who HAS cancer - even if the cancer is gone. It’s now a part of me and a part of my family and my friends and will play a part in the decisions I make for the rest of my life. We’re about to move from our home that we’ve had for the past 10 years and into a much bigger (and more expensive) home and I can’t shake that thought in my head of what if I die and Eric can’t pay the rent on his own. It’s a legitimate fear and unfortunately a very real possibility. From here on out there will always have to be a contingency plan for “what if molly dies”.
I think I will become more comfortable with my prognosis once I get past the next few scans. I think the scan in August will be really telling - it will be the first one since finishing all of my treatment and I am desperate to see a smaller deader tumor - or better yet, no tumor at all.
Some non-cancer highlights from the last few weeks: My niece Riley turned 15 and we got to celebrate her out to dinner at Bear Flag Fish Co at Pacific City in Huntington Beach. It was wonderful to see everyone and have a beer or 3 eating poke and tacos watching the sunset over the ocean. Mother’s Day was wonderful - I got to sleep in and Eric and the kids got me Starbucks in bed. Maggie and Harrison have been enjoying Taekwondo and hanging out with their friend Amelie. And our beloved doggy Penny turned 12 and we treated her to a dinner at Lazy Dog to celebrate with her cousin Charlie. Oh and I went back into the office for the first time since Friday March 13th, 2020. It was just to visit and pick some things up, but man did it feel weird being there after so long. I got to see my boss and stop and chat for a while which was so nice. It was hard not to get emotional just thinking about everything that I’ve gone through since the last time I saw him in person. It still feels so strange that I only worked with my team in person for 2 months before going into quarantine and then being on disability for 8 months. I’m so unbelievably grateful for this job and this group of people who keep me motivated and excited about my job. I’m very lucky to have them in my corner. I also got to see and say goodbye to my office manager which was very hard and emotional for me. She was so supportive throughout my leave of absence and often checked in with me to see how I was doing and was instrumental in setting up the meal train when I first went out on disability. I was so sad to find out that she was leaving as she was a big reason why I love my job - big shoes to fill indeed.
As for now, I’m going to try to get back to my life. We have the big move coming up in a few weeks, so I sure hope I regain some energy so I can be more helpful getting packed up. Then the kids will be out of school for the summer soon and we’re hoping to take a trip to Yosemite at some point before school starts again. We have several concerts and festivals already booked for the fall which is amazing and definitely something to look forward to. I’ll keep everyone updated on my progress from here on out too, but maybe less frequently as I move from Cancer Patient to Cancer Survivor :-) Thank you to everyone for their continued support. It really does take a village and I have a great one filled with so much love and loyalty and patience and generosity. Despite it all, I recognize that I’m very lucky.
