Radiation is strange. You really get to know a place during the process. I was in the same part of the building, moving through the same rooms, everyday for about a month and a half. I got to know the parking attendants just as well as the admins, nurses, techs and others that fill the building. I miss the personalities of two of my radiation techs. I also memorized that machine; its sounds and strange movements. The sound of the gears moving all the plates inside the machine to help shape the beam. And the sound of the radiation beam itself won’t leave my head any time soon, or the flashing red light displaying “Beam On”. As time went on, I feared the sound more and more as my skin deteriorated, and I lay there just wondering how much damage was occurring. The machine I was on, LT 14, is old and hopefully will be replaced at the end of this year. It broke down a number of times throughout my treatment. One day they did my session on a different machine. The room was so nice and the machine seemed brand new. It kinda pissed me off. Why was I placed on the old, unreliable machine? Were they certain it was still providing the same level of treatment? They laughed off these questions the times I mentioned it. Maybe I will ask my radiation oncologist again when we follow up soon. Just for peace of mind. One less thing to not stay up at night and worry about.
Walking those halls was strange. There are warning signs for radiation, lasers and scanners everywhere. All the people I came across were nice, but at times, I couldn’t help but worry a bit about them and their level of exposure to all these devices/treatments and tests. It doesn’t help that it is in the basement. Maybe being in a basement is important, I have no idea. It reminded me of engineering school at UT and all those (kinda depressing) days spent studying in the basement of ECJ. I never understood the placement of the study halls during school and it hit me again during these treatments. Let’s take this group of people who are going to use this space the most and put them in the least desirable location.
I know lots of people fare pretty well with radiation, and I hoped to count myself in that group. I found it harder and much more painful than expected. It definitely zapped my energy, dehydrated me to a level I had not previously experienced, and gave me constant headaches. Then there was the physical burning of the skin. It was the very worst in the armpit area (like with everything else). That skin got very rough and turned a deep purple before starting to peel. They had me do bleach baths three times a day. I would just lay with a towel soaked in a bleach solution on my chest for 15 minutes followed by a quick shower. They helped progress what they called “dry peeling”, and I only ended up with a few raw spots on my chest and armpit area. We had to wait about 10 days for me to heal, with constant skin checks, so I could finish radiation. I had to use ointment on my skin around the clock. It took a toll on my clothing and I don’t think I will ever be able to smell Calendula ointment again. I held my right arm away from my body at all times until last week when it finally started to heal in a significant way. That didn’t do me any favors comfort-wise either. My neck and upper back have been a mess with the very altered posture, making every other slight ergonomic issue in my life more troubling to handle.
I think patience and acceptance are very important during the process, and I have really struggled recently. Finishing radiation felt good and strange. Like everything else, I did it all alone. In the hallway outside the treatment rooms, there is a small gong for patients to hit to celebrate the end of radiation. There is also a proclamation on the wall about ending treatment. But I didn’t have a loved one there to suggest I hit the gong or photograph me reading the proclamation. My nurses did give me a certificate and played the graduation song as we finished my last session. Funny enough, I was kinda bummed I didn’t get to hit the gong. I felt like I earned it. I also didn’t ask. I was doing okay leaving that last appointment. But then, feeling a bit surreal as I stepped into the hallway, I saw an older woman there with a few nurses on her team, still in her gown and robe, reading the proclamation on the wall and sobbing. When I heard her finish and hit the gong, something happened. Tears started streaming down my face and, to be honest, I have been a mess since that moment. My radiation oncologist reminded me it would take weeks (maybe more than a month) for me to really feel normal after treatment.
I started Tamoxifen a week after treatment ended. So I really don’t know if I feel like crap already from that or if this is just residual from all the treatment and trauma over the last almost 9 months. I have cried more the past two weeks than I have since my diagnosis. I am tired and worn down and feel like an emotional mess. A dear friend dropped off some delicious treats the other day. Her visit was unexpected, but I was so happy to see her. She asked me how I was doing and I burst into tears. I felt bad. I wasn’t really crying about anything. I am just a bit of a mess, and I don’t feel good and don’t really know why. All the reasons/excuses of treatment and surgery recovery are gone. So why now? Why am I having such a hard time coping and returning to normal? I very much want my energy and life back. I look at photos of friends having grand weekends and think my body could never handle that. This past weekend we had a fun/eventful Saturday, and after a full day resting Sunday, it was still not nearly enough. And that really frustrates me and makes me sad. This goes against how I am wired and who I am at my core. Halloween is this weekend and I am so nervous about the energy expenditure and price I will pay.
I feel like Jeremy and the girls have been caring and understanding this whole time, but I also feel like they are tired of seeing me so tired and are no longer as understanding. Which to me, makes sense. There is no longer a good reason for me to feel cruddy with very low energy and the constant new flood of emotion.
My oncologist had warned me all along that he suspected I would have a harder time emotionally at the end of treatment. He explained he had seen it time and again with women who, like myself, for the most part stayed pretty strong and positive throughout the real battle. He said the weight of what I had experienced would hit me, and he wanted me to know it was normal and okay and an expected part of the grieving process. I think I hoped he was wrong and that I could just power through. I won't meet with him for a few more weeks, but I am eager to talk to him about how I have felt and how much is from the Tamoxifen. Is it all the Tamoxifen? Is it some combination of what he described and side effects? I felt side effects from it almost immediately. To me that seems strange, so I will be interested to hear what he says. It is very, very hard right now to think about being on this medication, that feels like it is destroying me, for years to come. Hopefully my body adjusts. Maybe there are things that can help. All that is still to be determined. (Update - Jeremy really thinks it is very normal for it to take your body a few weeks to adjust, hopefully that is the case for me.)
A few women with similar experiences that I have spoken to talked about the trauma caused by this whole cancer experience. To be honest, I kinda judged them and felt they were being a bit dramatic when explaining their struggles post-treatment. I owe them all an apology.
The biggest hurdle is figuring out what to do and how to cope. I can’t feel this cruddy and utterly exhausted all the time. I need to sleep better. I need my energy and spirit to recover. The question is just how? I know it will be a process. I just need to mentally be better so I can aid my mind and body in getting there.
I started back to work the same week I started radiation. The timing was a bit rough, but I managed to power through and have been happy to be back at work. The biggest challenge is just time! I was gone for 2-3 hours each day with radiation and still have many other follow up appointments. I keep thinking the appointments will slow down but there always seems to be something. I am also so tired so much of the time just trying to stay on top of being a mom seems like a struggle. Things will get easier I know. I am just ready.
In my mind, like so many times before, I thought after this step I was about to turn a corner and things would finally ease up. Once again, I have been left disappointed, tired and frustrated. Hopefully things will calm down with the Tamoxifen soon and I can start working on “getting back to normal”.
