I’m back in action after my little hiatus. I’ve been dealing with some emotional issues as well as some awful physical side effects from the mediations so I’ve kind of curled myself into a ball to pretend it wasn’t happening. But then I remembered that’s not what I signed up for with this blog, so I’m back to tell you all about the happenings of the past few weeks. I started radiation on November 29th after some scheduling issues and to be honest that part has really been fine. Truly the first day feels like forever ago. My mother, glued to my hip as always, has refused to let me go in by myself. We took the train for the first few appointments but it got all too much and we’ve been driving in every day. The drive in is really not TERRIBLE, traffic on the way in is a nightmare, but we make it home in about 45 minutes once all is done. We’ve survived worse.
Every time I go in for radiation I wish I had a go pro on my head so you could all experience exactly what I do. I sign in, sit down, and then get brought into the “changing area” by the same few techs every day. I get changed into this blue gown, which is a step up from the hospital ones, it has three arm holes which is very confusing to explain but it covers you a lot more than the other hospital ones I’ve worn. I sit in the waiting room while my mom converses with everyone around me and I wait to be called in. The tech then comes to get me from the changing room and we walk back into the lab where I have to look at a disgusting photo of myself every day and say “Kimberly Clabby DOB left side” as I walk into the room where they do the radiation. I walk in, whip off my robe, lay down with my arms up over my head. They’re kept in place from a mold that was taken the day my mom had her mental breakdown. The thing I lay on moves, as well as the machine that does the radiation. It depends on what tech I have but sometimes I move smoothly from one place to the other, but one of the techs is a little rough with the remote and I feel like I’m on a roller coaster. Once they set me up by taking meticulous measurements and marking me up with a sharpie, they leave the room and a large metal door slides shut behind them. The large machine then moves around me stopping in 4 different places and making a loud beeping noise for the radiation. Then the door opens and the put some additional piece onto the machine and move me around again and radiate me once more. I have had days where I legit fall asleep in there and days that I am up having straight up panic attacks trying to stop myself from crying. I’m constantly nervous that the radiation is going to do something that could affect me forever. On Monday’s I meet with my doctor, who once again reassures me that nothing is going to happen, but the problem is that they won’t know. There’s no imaging that can be done to indicate if there’s a problem. My doctors PA said that in 70 years if I have heart problems, there will be no way to tell if it’s from the radiation or not. SUPER. This fear I have was cemented today when I went in, I’ve been having a sore throat and I thought it was just cause my immune system is still down so I figured I was getting sick again. I noticed yesterday that it was only on my left side though and it’s so painful to swallow when I’m eating. (No, this hasn’t kept me from eating) I asked if this could be from radiation and of course YES cause they’re treating near my esophagus. So, for some reason I didn’t inquire any further on this matter and hopped up on the table to be radiated. Then I panicked that this was going to be permanent, and what if I lost my vocal cords and I couldn’t talk. Would I be able to learn sign language, I don’t have the patience to learn sign language now! So, inevitably today was a day where I tried not to cry the entire time I was on the table. Shocker, this is not permanent and they said it should go away in a week, but if it doesn’t to let them know. They gave me some wash to use 3 times a day and they said it should help with the pain. I only have 14 more left so I’m praying nothing else goes wrong during this time. Cross your fingers with me.
Everything is supposed to help with the pain..this will help with the pain…take this it should help with the pain…yadda yadda. HUGE SIGH. I’ve been dealing with some intense pain in my hands and feet and it just keeps getting worse. Like I said before, my doctor told me this could be a delayed side effect from the taxol, but being told that I assumed it would get better with the passing of days but it has only gotten worse. I started taking the Exemestane, which is supposed to help block the hormones so I don’t have a reoccurrence, and once I started taking this everything started getting worse. As of today I was only on it for about 3 weeks but it felt like forever. Even typing this out right now my fingers are killing me. To take you through a day might be better to explain. I wake up every morning and my middle finger on my left hand is legit stuck, I have to bend it with my other hand to start it moving again. After that I then have to stretch out both my hands to get some of the stiffness out. Then I hope out of bed like a normal person and remember I can’t walk. My feet are so swollen and stiff and painful. I have to do what I like to call the penguin walk all the way to the bathroom. This pain goes away after a while of constantly being on my feet. This of course is not good for me cause once I’m up I’m back in the car for two hours on my way to radiation. Some days my hands are better than others but I am constantly rubbing and moving my fingers to try and help with the pain. Once we get to the hospital I know exactly what’s coming. Thankfully we’re at a hospital so I don’t feel so weird hobbling my way inside. The pain doesn’t move from a 9 to 7 until we’re about at the radiation suite. I go through my radiation schpel and get back into the car. We drive home, I hobble my way back into the house and continue on with my day. Recently I’ve been spinning and it’s shockingly not painful during. I went to boot camp on Monday and that was VERY painful on my feet, jumping up and down did not agree with me. It also definitely didn’t help that I’m so freakin out of shape. Pre-cancer Kim would have NEVER even thought about doing the modifications in a class like that, post-cancer Kim wouldn’t even attempt to do half the things she said. I would do one and immediately be like NOPE, I will not be doing that weird burpee squat thing you just did. I’m going to pick up and put down my knees like I’m in a bad 80’s work out video. I also make sure I’m far enough in the back that even if I squint I can’t see myself in the mirror. Anyway, so after I had a day full of hobbling I get into my bed and try and get comfortable even though my hands feel deformed. Most nights I can’t fall asleep for a few hours because I can never find a comfortable position to lay down. From one stomach sleeper to another, sleeping on your back never gets any more comfortable. I even got a pregnancy pillow which has made it slightly better but I still always wish I could flip over and starfish out on my stomach. The day I am able to do that I will cry tears of joy and probably sleep for 24+ hours.
The pain and swelling started getting really bad last Thursday so I called my doctor and of course she was at a conference along with every other oncologist apparently. I waited for the doctor on call to call me back, which never happened. Then my mom started freaking out at night cause she said it looked like my ankles were getting bigger so she called the emergency number and the lady on call told us not to worry and she’d send a message to my doctor. No call back again. The next day I was in for radiation so I called my doctor’s office again to see maybe if someone could see me. The lady on the phone was legit the nicest person I have ever encountered during this whole thing, she was so aplogitic that I didn’t get a call back and legit RAN around the hospital to see if there was a doctor who could see me. Finally, she got me in touch with a doctor who worked with mine and they met me at the entrance of the hospital. They didn’t want me to have to wait til she had office hours so she literally gave me an exam in the middle of Au Bon Pain. Literally there were people next to me eating as she told me to take my shoes off so she could look at my feet, SORRY GUYS. She told me not to worry and that she’ll call my doctor to make sure I get in on Monday. After radiation on Monday I went in for some blood tests and for them to check me out. They said the joint pain is normal but the swelling isn’t so common and referred me to a rheumatologist. They were able to squeeze me in for an emergency appointment yesterday and I had more blood drawn. Since I was only off of the Exemestane for a short period of time, she said it’s hard to determine whether or not this was the cause but doesn’t think so since this pain has been constant long before stating this medication. They took blood to rule out that it’s not Rheumatoid Arthritis but I won’t have the results of that for up to two weeks. She said it could potentially be carpal tunnel and gave me splints to wear at night to try and gauge how that goes for the next two weeks. She also gave me a medication that she referred to as prescription strength advil but it shouldn’t give me the side effect of swelling. Hopefully this will help and I’ll be better in the next few weeks.
I just feel numb to it all, it’s really hard to describe. It’s just day by day, limping, going in, laying on a table, having a machine zap me and it all starts over again the next day. I know I have an end date for this portion to be over but it’s still tough to deal with. These side effects suck and they really do get to me mentally. Some days I’m upset, some days I’m happy and some days I’m angry. Survivors guilt is real people. There are truly days where I’m angry at the world for doing this but then I truly feel guilty that I’ve had it so easy in comparison. I see all these other terrible awful stories and then I think back and realize I’ve only been going through this since May. To some people, this is forever and it will never get any better and that’s not fair. “Why me?” has never rang truer on both ends of the spectrum.
I’m totally not in the Christmas mood, we literally just put up the tree and I was so involved that I slept through the whole thing. I keep telling my parents over and over again “we’re not doing gifts this year!” I mean it, so again mom & dad in case you forgot, I DON’T WANT ANYTHING DO NOT BUY ME ANYTHING. Next year will be better. Everyone keeps saying “the hardest part is over!” but this part doesn’t feel easy either. The side effects and the emotions I’ve been bottling up on a daily basis have been pretty brutal. So, if this is easy, I’m not sure I’m ready to do this “easy” for the forseeable future.
Until next time
xx
Kim