My head is so itchy.
Is it all in my mind? Is it itchy because my hair is about to start falling out? I'm scared to scratch it. Scared to pull my hand away and see long strands entangled between my fingers.
Maybe it's nothing. Maybe I'm just itchy.
Oh well. At least today was a good day, for the most part. Radiation was quick and painless, my stomach only bothered me for about an hour or so, and I was able to spend some time with my boys without forcing a smile from the couch. I even took them to get measured for their tuxedos for my wedding! I can't believe they're almost two and a half years apart, but just about exactly the same size.
But yesterday wasn't quite as easy.
The radiation is still pretty uneventful, at this point. I've had a few bouts of diarrhea, but nothing to write a blog about. The new hit actually came from Dr. Sidebotham, my radiation oncologist, in our weekly status appointment yesterday.
After I had changed into my hospital gown, been positioned on the table, strapped down into my mold, counted 10 buzzes of the machine, unstrapped and changed back into my clothes, I was told to wait in the changing area for an appointment with the doctor. Every Tuesday would be check-in day. I would tell Dr. Sidebotham how I was feeling and discuss any side effects I may or may not be having. I texted my mom. "Meet me in the changing room." Had I known about this, I would've given Jimmi the option of coming with us that day. Since radiation is very quick, it's silly for both my mom and Jimmi to take me and they've been alternating. Oh well. I'd just have to fill him in on anything important.
"Suzanne?" My mom and I followed the young, black man with the obnoxiously hot pink shirt and blush pink tie down the hall to an exam room. "Can I get you some water or juice?" he asked. I was really feeling sick, so a water sounded great. I made my request and he left the room to fulfill it. I looked at my mom, sighed, and laid back on the exam bed. When will this nausea go away? I haven't had a chemo treatment in five days!
"Hello!" said a friendly voice as a nurse entered the room. It was Eileen, the one who had all the trouble with the July 11th/July 18th start date so many weeks ago. I tried not to like her because of that fiasco, but I couldn't help it. She really is a nice lady; and yesterday, I almost thought she and my mom were going to leave me sitting there and go out to lunch.
"I just love your hair!" Eileen said to my mom. "I'm trying to grow mine out and I just love yours!" My mom replied, "I'm growing mine out too!" Eileen then showed my mom a photo of her previously shorter hair. My mom commented, "That's how mine looked!" Then the conversation went into a spin of something called a Tony curl and putting cotton in their hair and long sticks and poofiness and..."Hello?" I interrupted, "Do you still need me?" I guess she did since, without missing a beat in her discussion, Eileen grabbed my arm, wrapped a pressure cuff around it, stuck a thermometer in my mouth and wrote down all the information.
Finally she spoke to me. "How are you feeling?" I rolled my eyes and shrugged. "Crappy. But I think it's more to do with the chemo than the radiation, at this point." Eileen nodded in agreement. We continued to talk about my current treasure chest of medications and any malady I had been feeling. Then she said, "I'll page Dr. Sidebotham now."
But before she had a chance, the door opened, and the doctor was walking in. "Hi Suzanne. How are you feeling?" she asked with her familiar, sympathetic eyes. I went through the same conversation I had just had with Eileen, but in finer detail. Dr. Sidebotham gave me hints for managing my nausea. "Don't let your body get to the point of feeling sick," she explained. "I know it's not fun, but keep yourself medicated. Take the mild nausea meds every 4-6 hours, and the severe nausea meds every eight hours no matter what. That way, you're covered. You need to figure out what works now, before the next chemo cycle because, at that point, the side effects from the radiation will really be making you feel worse and you'll want to do whatever you can to keep the sick feeling to a minimum. Play with the medications and see what works for you." Sounded good, except for one thing...
"But I don't want to take the anti-nausea medicines if I don't have to since they're so constipating." Dr. Sidebotham sighed and nodded, "Yes, they really are. But that's why we tell you to take stool softeners. I know you don't want to take even more medicine, but those are really easy. Take 2-3 Colace during the day, and two Senokot each night. That way you'll avoid having to use an enema or something even worse." I can't believe these are normal conversations for me these days. "But won't the radiation cause diarrhea? Should I really take stool softeners?" Again, I was correct. "Yes, that's the problem. You'll finally figure out a system that works, and then it'll be shot by another side effect. At that point, you'll just need to laugh it off and we'll try something else."
Sounds lovely.
We chatted for an unreasonably long period of time about different forms of bowel movements, and ways to fix them before I changed the subject. "Can I ask you about long-term side effects?" Dr. Sidebotham looked well-prepared for my question, until I asked it. "How often does radiation cause people to end up with a colostomy bag?" Her face was a bit surprised, but I could see that she didn't think it wasn't a stupid question. "Almost never," she answered confidently. "That's not something I think you really need to worry about. The biggest issue for you will be sexual function. It will change things, and you need to be ready for that." I nodded, though I wasn't ready to shift gears that quickly. "The radiation will shrink your vaginal canal, as I've explained, and you'll need to really work with the tools we give you to help yourself so you can function at as close to a normal level as possible. You'll have the dilator, and at first, you might need to use it up to three times a day..."
Whoa! Whoa! Whoa!
How did it go from three times a week to three times a day?? I know I don't work outside the house, but, seriously, who has time for that? Will I need to excuse myself from a lunch date with a friend to have a second date with El Plastico in the bathroom?
Ok, get over it. You're already on this path. You just need to follow it to the end.
"But after a year or so," she continued, "you may be down to once a week or less." Ok, focus, Suzanne. "So, when can I start using it?" I asked, wanting to get going on fixing things as soon as possible. "Oh, not until after treatments. You're much too sore now and it's going to be very painful when you start, so we need you to wait." Great. Painful sex toy. Looking forward to that one.
Shit! My wedding night!
"So, what are the chances I'll be consummating my marriage on September 3rd?" Dr. Sidebotham looked down, then back up at me. "You probably won't be doing that. You'll just have to explain to him that..." I quickly interrupted her, "No, no! He's not worried about it! I was just curious."
Ok, so, my goal here is to get to the wedding. But there will be no wedding night nookie, and no honeymoon. It's ok. It'll be ok.
"And one more thing we're going to need to talk about soon, is the possibility of another type of radiation when you're done with the external kind."
Wait, what? No. No more radiation. This is my treatment. Hysterectomy, chemo, radiation. That's it. Nothing else!
"Because the margins were so close to the cuff of the vagina, I might be recommending three rounds of internal radiation 2-4 weeks after you finish the external radiation."
But I didn't even want the external radiation! Why do I need internal now? Can't I avoid ANYTHING???
"I'm sorry I didn't mention this sooner, but I didn't think I'd need to recommend it until after I saw the pathology report. The margins were just so close. The external radiation will get to a large group of cells, but the internal gets right on top of the area and blasts what's left. I think it might be our best chance at making sure this is all behind us."
Ok. Reeling. Don't want to hear any more.
I didn't show any emotion. I just talked to the doctor like the grown-up I'm pretending to be, then my mom and I thanked her and left.
So, here we are again. Faced with another possibility. Another life-altering treatment. Another choice. I'm too tired to think about it right now. Frankly, I'm surprised I stayed awake long enough to even write about it. I'm just doing what I've been told all along. I'm taking it one day at a time. I'll deal with it when it's forced upon me. Until then...
I'll let the roller coaster speed along until it reaches the station.
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