Hello, it’s me again, back from my unescapable hiatus. Let me tell you something, Taxol is a sneaky mother fucker. I’ll back up a bit, last Monday was my first treatment of the new medication which as I have heard has the potential to be much easier than the AC medication. Even my dad on multiple occasions has asked the question “Is it easier?” to pretty much anyone who would listen, I think at this point he even asked the lady who empties the garbage at Sloan; Hi, do you happen to know if Taxol is easier from the time you’ve spent here at Sloan? Everyone has pretty much nodded in agreement yes, it’s easier. BOY KIDDOS WERE THEY WRONG. I have never been more miserable in my whole life, I sit here typing this to you in utter fear of my next treatment because I know what it will bring. Not only are the side effects immensely worse but the treatment itself sucks the big one. Last Monday we were literally in Sloan ALL DAY and for those of you who know me, no I am not being dramatic, we were literally there from 9AM to 5PM if not later. I can’t really remember exact timing though; my chemo brain has been so bad lately that I barely remember what day it is, the only thing that keeps me on track is my yoga schedule, Thursday is barre day! I went in for my bi-weekly blood work, saw my doctor and then sat in the treatment waiting room. I have thankfully been getting my own private room for the last few treatments which has been a dream, especially for this last once cause I slept like a princess. Getting ahead of myself. Anyway, I had a new nurse this treatment who looked exactly like Brienne of Tarth, for you Game of Thrones fans out there. I was so enthralled by her that I was staring at her open mouthed the whole time since I recently became a GOT fanatic. Well she was definitely exciting to see, I felt like Brienne of Tarth was literally standing in front of me in scrubs. Brienne might be an excellent swordsman but she really sucks at finding veins. If you look at my hands right now I still have two gigantic bruises on both hands, she stabbed me multiple times. And let me explain this now so you all don’t think I’m just being a gigantic baby. These needles are not small, let me take your blood needles, they are GIGANTIC LONG THICK ASS NEEDLES that they shove deep into your hand, like deep sea diving deep. I can’t even explain to you what the pain feels like and I hope none of you ever have to experience it first-hand (get it… hand). In all seriousness, it hurts and to have it happen multiple times before the treatment even starts is pure misery. After her 45th attempt, just kidding it was the 4th, she found the vein and we started with the hour of pre-meds, then came the Benadryl. This was something I wasn’t looking forward to either, in all my previous encounters with Benadryl I have taken it and become a wide eyed insane person. I’m not a normal human and take Benadryl to pass out, I take it and start bouncing off the walls so this was exactly what I was expecting. I was so confident that I even told the hand murderer. Well the Benadryl came and all of a sudden out loud I exclaimed I’m feeling very woozy IS THIS NORMAL!! Yep! When I bring this moment up to my mom she still hysterically laughs cause I was literally high. I was laughing uncontrollably, or as my mom likes to say, I was giggling uncontrollably. To be honest, this is the only part that I’m looking forward to now, since I haven’t drank in 3 ½ months this is the closest thing I’ll get.
After the Benadryl came the 2+ hours of Taxol. I was knocking in and out of sleep the entire time but all I wanted to do was catch up on GOT! Well we ate, I slept, I tried to watch GOT and then it was time for my Lupron shot (which is the shot to shut down the ovaries). With that there is some good news, I think my body has finally figured it’s shit out and my hot flashes have calmed down a bit. Is that good news though, or does my body just literally think I’m a 45-year-old woman? I don’t know, but either way I’m glad I am no longer always on fire. After treatment we went home and ate some more and I knocked out. The next day I was feeling pretty ok with occasional pains in my back and stomach but me and my mom were able to make it to Kings of Leon at Jones Beach! I started getting tired and annoyed at the awful people in front of us so we left early but we were glad we got to see them for the first time. Back story, me and my mom have been trying to see KOL for YEARS and every time we have tickets to go, something happens. The first time we tried to go see them we planned to see them in Boston for the weekend but unfortunately my mom’s aunt passed away and the funeral was the same day as the show so trip cancelled. The second time we tried to see them the whole band got in an accident on their tour bus and the drummer broke his ribs. It happened a few days before they were scheduled to come to NY and they had to cancel all their upcoming shows. This was very upsetting as it was another time we would miss one of our favorite bands! This time KOL obviously had to fall the day after chemo so we decided if we couldn’t make it this time we were not trying to see them ever again cause it was bad luck. But I guess third times a charm!
Anyway, I came home that night after the show and of course laid in bed trying to catch up on GOT and all of a sudden, I had this intense awful pain in both my shoulders. I was warned that I could have some bone and joint pain with this new medication so I took some Tylenol and prayed it would go away. NOPE it sure did not. It started feeling like every single bone in my upper body was being broken and crushed. It was so intense I ran into my parents’ room hysterically crying trying to figure out anyway to elevate some of this pain. I couldn’t get comfortable in bed, nothing helped. I took out icy hot and heating pads and more Tylenol and the pain just kept getting worse. I had to lay like I was in in a coffin, if I moved an inch I was in excruciating pain. I sort of cried myself to sleep but was up every time I shifted in my sleep, the pain was never ending. I woke up in the morning so miserable from what I had experienced the night before, I never wanted it to happen again but of course that wasn’t going to happen. The pain had moved from my upper body to my lower body. I had severe pains in both my hips and knees and shins, it was awful. I could barely get out of bed. As the days went on the pain was less and less with the occasionally shooting pain in certain parts of my body. I’m feeling more like myself again today but the anxiety is slowly killing me. I know what’s coming and I’m terrified. Also with the next treatment I have to once again get the Neulesta shot to increase my white blood cells, thankfully this only happens one time with the Taxol treatment. I was already warned by the nurses that this one is going to be the killer. The Taxol mixed with the Neulesta which also causes bone pain is apparently a nightmare. I want to break down in tears just thinking about it. There’s medication I can take for the pain but my body is already so messed up with all this stuff I’m on I don’t really want to put anything else in it.
Another fun thing that happened with Taxol was my allergic reaction! HUZZAH! Apparently, a small percentage of people get a reaction from Taxol within the first 10 minutes of getting it, so they actually get it while they’re sitting there in the treatment chair. The nurses are trained to tell when this is happening, you usually get hot and get a weird taste in your mouth. Then they stop the treatment, give you more Benadryl and you continue with the treatment as if it didn’t happen. This did not happen to me. Instead I woke up the next day with a very puffy red, tomato like face and it was itchy as all hell. We went in to see the nurse to check out what it was and from there had to make an appointment with the allergist. Now I am on even more medications to prep me for my next treatment. Thankfully it was not a “life threating reaction” as the allergist referred to it, it was just an itchy face which let’s face it is the least of my problems. He did like to end my appointment by prescribing me an epi pen for the chance that he was wrong, which was terrifying so we’ll all see on Wednesday if I have to use it. Stay tuned!
I am really sick and tired of this though. I know there’s an end in sight but in reality, it’s not as soon as I thought it would be. If I need radiation there’s a potential that I won’t be done with this shit until May of next year. That’s one full year of this! I’m ready to call it quits now. There are so many things that run through my mind when I think of that length of time, so many things that I know I can't do for that long. I know I’ve been talking about my yoga body for months now but spoiler alert, ITS NOT HERE. And I don’t think it’s coming. Working out is hard on this shit, I have one good week and one bad week. So, in reality they just cancel each other out. The chemo alone is making me gain weight. I feel so disgusting that if I fell on the floor you could probably roll me down the street. DRAMA. But I constantly think about how long it’s going to take for me to get (back?) into shape once this is over. After surgery, I’m sure I’m not going to be able to jump back into a full gung-ho fitness routine, and I’m sure once I get my full capabilities back it’ll be time for surgery #2. With the whole radiation thing, up in the air I really don’t know when my life is going to get back to normal and it’s beyond frustrating. I just want to be able to do the things I used to do, to feel more like normal me. I enjoy the days where I don’t think about it so much, the past few have been very cancer focused and they’ve just gotten me really down. Also probably doesn’t help that my meeting with my potential plastic surgeon didn’t go the way I planned, but that’s a story for another time.
xoxo
Kim