The weeks following the last chemo can be summed up in 2 words: awesome & frustrating. Awesome because I could finally clear all the prescription bottles off my nightstand. Awesome because I don't dread Thursdays anymore. Awesome because there are no more throbbing pains, migraine eyes, headaches, bloody noses, mysterious bruises and waves of nausea. Awesome because every day I feel a little bit better.
The frustrating part is that even though I started to feel better every day, it's only marginally better everyday...like 2% better. And about a week after chemo, I hit an all new low on the energy level. There were days that I could barely summon up the energy to shower. And once I did shower, I had to lay down for a half hour just to get the energy up again to get dressed. That was a low. I'm not there anymore (thank god) but at only 2% more energy a day, it's a slow build...and it's frustrating.
About 2 weeks after the last chemo I was hanging by a thread emotionally. I was sick of being sick, tired of being tired, and just wanted to feel better again....NOW please. I would lean over to tie my shoes, feel tired, and tears would pour out of my eyes. Why did I still have to feel like this? When would this pass? Thankfully I am not there anymore either, but I am still frustrated that currently at 5 weeks out I am still tired.
When I started radiation, 3 weeks ago, I was E X H A U S T E D. I assumed that this was because of the radiation, but when I talked to my radiation oncologist about it at our weekly meet ups, she told me it was still the chemo and my body trying to heal from it. In her experience, the patients that she sees after chemo are at their "peak" for fatigue and by the end of radiation I should actually feel better than at the beginning and every day I should start to feel a little bit better. And it's true...I definitely feel better than 3 weeks ago. But I have either hit a plateau and this is as good as it gets for a while, or else there is a small pause because the last week or so I have not been gradually improving....it's just about stayed the same.
But I'll back up a little bit since it's been 5 weeks (!) since I have posted last and I haven't talked about radiation at all. It all starts with a "planning session" 2 weeks after chemo. In this session you get a cat scan and x rays so that can determine where exactly they want to direct the radiation. You are set up on a simulator and have to lay like a sack of potatoes so that can set you up exactly how they want you to lay for the radiation machine. They make a mold of the upper part of your body so that you are in the exact same position every time. And they give you tiny tattoos (they look like small freckles) as markers to make sure you are lined up in the exact same spot each time. My tattoos are 3 tiny dots - one in between my breasts, and one under each breast. Every morning I go in for radiation I lie (like a sack of potatoes again) as they move me around on the table into the exact spot that they want me and line up my tattoos.
One week after the simulation, I started the treatments. My first radiation date was September 15th. It's every week day (with weekends off) and each session is about 2 minutes. Very very quick. It takes more time to park the car at the hospital than it does to get radiation. I show up every day at approximately the same time (they assign you an exact time - my appointments ranged from 9:36 to 10:36, then just this week leveled out and are now 11:12 the rest of treatment). If I had really bad eye sight (or were slightly delusional) it might almost be like going to spa every day...kind of. You walk in past the reception desk (no need to check in for daily radiation, they want you to walk in "like you own the place"), grab a hospital gown off the shelf, go to a changing room (there are 6 to choose from), undress from just the waist up, put a gown on, lock up your belongings in a locker, then go and sit in the private waiting room (just for patients) and read a magazine. A technician comes out and gets you and then we head back to the room with the machine. I lie on the table in my mold and let the 2 technicians move me and line me up to exactly the spot that I should be. They leave the room, and the treatment starts. It's 45 seconds at one angle, then the machine moves over and radiates another 45 seconds from another angle. The technicians come back into the room and we are all done.
Once a week I meet with my doctor to discuss any concerns and for her to monitor my progress and any side effects. So far it's been very uneventful....my only side effect has been fatigue (which is still much better than the fatigue I felt at the end of chemo). The "sunburn" skin probably won't happen until week 4 (and hopefully it won't be bad) but we won't know until then. In the meantime, they direct you to take preventative measures: washing with very mild soap (I use baby soap), applying either aloe or calendula cream twice a day (I use Baby Calendula cream by Weleda), and you cannot apply anything in the area up to 4 hours before treatment...so no deodorant, no lotions....nothing in the area. I apply the calendula cream immediately after the radiation session and then again at night before bed. So far so good....but again, I probably won't show any symptoms for another week or so anyway. Fingers crossed these preventative measures are working.
Everyone asks how radiation is and my only response has been "good"....which good to me equals "way better than chemo" but unfortunately good is not yet "back to feeling normal" which again is frustrating. Everyone also assumes it must be a big pain in the ass to go to radiation every day....but it's not. I will take 2 minutes every day to 7 hours every other week anytime. So again, I am comparing it to chemo and it is so so so so so much easier. If I hadn't gotten chemo before I might think radiation is a pain in the ass, but to me it's the easiest thing I've done yet.
The one thing that did surprise me was that at the start of radiation, it was harder emotionally than I anticipated. My second treatment, as the machine lined up directly over me, I felt tears well up...I couldn't believe I was doing this. I couldn't believe I was putting more toxins in/near my body. I couldn't believe that again I had to weigh the risks of doing long term damage to my body. It was overwhelming. But as long as I push those thoughts out of my head, I am fine. And ...I have to push those thoughts out of my head. Because even though we don't know if this is working, it's our best shot. And right now, that's all I've got. And I've made my peace with that. A lot of very smart people are doing everything they know to make sure this doesn't happen again. So for now, that is what I have to focus on.
Fall has finally settled in for Portland. The air feels crisp, it smells like rain in the mornings, the leaves are starting to turn. At first I was sad at the transition away from summer...from the long evenings, the warm breezes, eating dinner outside. But Fall is beautiful in Portland, and even though life still feels like it's on "pause" for us, I am looking forward to what Fall is - watching football on the weekends...getting the sweaters and jackets out of storage...planning a Halloween costume for Thomas. It feels good to start planing something again.
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