I have not been on here in awhile and there is a profound reason why that i hope to be able to adequately explain for everyone to understand. Since i last updated you all i have completed my last two AC chemo treatments, for anyone new these treatments are extremely aggressive and intense. I have struggled with severe reactions during infusion to one of the chemo medications and i have been living with the same residual side effects for weeks.
During infusion i have tolerated the Adriamycin (red devil) fairly well, most struggle with this drug. I however have experienced severe adverse reactions to Cyclophosphamide which has been infused last at every treatment. Only minutes into infusion each time with this drug it feels like all of the chemicals pool directly into my head and face. The instant intense burning and stinging of all of my face and sinus tissue, extreme migraine and nausea that i would happen almost immediately are like nothing i have ever had to experience and hope to never again. The effects of this drug were so severe that it would literally put me into a sleep like state where i was only half conscious. In retrospect i wish the half conscious state could have saved me from some of the suffering. I grew up with severe migraines and i can tell you that the reaction to this chemo med far surpasses anything i have ever experienced before. Tyler will tell you that he could tell immediately when the drug would take hold of me as it would wash over my face. I hate that he has had to relive this and watch me battle each time feeling completely helpless.
Each time during infusion i would have to ring my call button and ask the nurse to stop the infusion immediately, over the four treatments we had to stop infusion repeatedly and slow down the process from being a 30min infusion to a 2hr infusion to try and help my body tolerate the effects of the drugs. Treatment number 3 of 4 was my absolute worst, both the infusion and the recovery. During infusion i had to have the medication stopped and was literally in and out of consciousness in my chair. I had ice packs on my face, and kept getting startled to reality by my nurse and doctors. I am proud to say that i walked into the cancer center each treatment sick with dread but so incredibly strong with resolve. If this is what it takes to kick cancers ass i am here for it. But for anyone who may think it has been easy or i am thriving... well take a seat and keep reading. The power of positivity and strength of will i have to make the most out of every day may be giving people a false narrative that i am feeling great. I want to talk more about my recovery after infusions and come full circle as to why i have not updated my blog in so long.
The chemo and steroids' that are given effect every orifice of your body, just when you think you are feeling "okay" another symptom rears its ugly head. I could go on all day long about all of the symptoms that i have been battling but the WORST is the constant stinging and burning in my face, eyes, and sinuses. It feels like the chemo drugs are stuck in my face tissue, i battle waves of nausea throughout each day when the stinging is particularly bad. Each and every time i feel like i am fighting to not go back into the state i was in during infusion. I also experienced mouth sores that extended down my esophagus, and into my stomach and intestines, the internal burning and discomfort associated with this is something that i wish upon no one. The daily debilitating fatigue that i fight is also something that is hard to understand unless you have experienced it, literally your body is so fatigued that moving your legs to walk makes them feel like boulders. I have a laundry list of other daily symptoms such as severe headache, nausea, no appetite, severe eye burning (like chemical burns in your eyes all day), nose bleeds, severe eye strain (difficult to drive), rashes, numbness and tingling in my legs, ohhhhh and lack of sleep. Yep that's right on top of everything i have not been able to get more than a couple hours of sleep each night. I lay awake utterly exhausted all night but cannot fall asleep, nothing has worked and the bags under my eyes get larger and larger each day. I almost forgot to mention that i am also receiving a shot that puts me in temporary menopause to help protect my eggs during chemo, so i am also battling full on menopause symptoms too! I bet you are thinking wow, this cancer thing is just the gift that keeps on giving LOL.
Do not get me wrong, there have been some good days where i have felt have normal and really enjoyed time spent with Tyler, and my close family. Those fleeting moments of normalcy are what keep me going throughout all of this. I am so thankful that i can have those days, and that truly i really am tolerating treatment EXTREMELY well despite what i have described to you. Each time my body is bouncing back and my blood work has shown a quick recovery, my doctors are raving that my 12 rounds of weekly taxol/carbo treatments that i have coming up should be a breeze for me given how well i have done. One thing that has me terrified is that i will somehow have another rare and severe reaction that i will have to tolerate for not 4 treatments but 12. Another very common symptom with these drugs is neuropathy of the hands and feet that can be PERMINANT. That's right PERMINANT! I have cold gloves and socks that i will wear during treatment to try and keep my extremities in a hypothermic state much like cold capping to try and prevent the neuropathy. Just when you think infusion cannot get any worse or more boring... it does.
One thing i forgot to mention above is how much i have struggled mentally with not being able to do things for myself like i am used to. If an idea or project pops into my brain i am used to kicking ass, taking names, building things, and going like the energizer bunny from dawn till dusk. I have been forced to sit idle when my body simply shuts down on me and depend on others and that alone has killed me more than anything else. I am fiercely independent and have always taken pride in what i can accomplish as well as Tyler and I's partnership where we share all of the labor and projects equally. I think i have felt more angry than defeated because i will not allow myself to sit in any state of feeling sorry for myself. But... it friggen sucks.
This brings me full circle to try and explain to you all why i have avoided my blog and have not updated you all in almost a month. I have really struggled with PTSD due to how severe my 4 AC treatments were. I cannot think or talk about certain symptoms without instantly reliving them, certain smells, foods, activities.. all of it puts me back into the state i was in during infusion. I have developed severe aversion's to things i once loved doing because i did them either during infusion or when i was sick and recovering after treatment. I have learned that i cannot partake in anything i enjoy when i am in that state out of fear it will be ruined for me as i will then relate it with chemo. I have not been able to truly talk about this and when i am asked how i am feeling i can only shake my head because trying to verbalize how i am feeling makes the symptoms worse. Everyone's first reaction is to ask me how am feeling and i have grown to hate the question. It is definitely a trigger and one that i dread overcoming multiple times each day. It sounds silly doesn't it? Maybe ask me what i am up to, or what my plans are instead... that will tell you how i am feeling without me having to describe it time and again. My goal here is not to bitch and moan but to provide raw truth and insight as to my journey and experience. I feel like i can help others navigate with loved ones who are battling cancer. Long story short, I have not been able to get on here out of fear my body will associate blogging with chemo and recoil every time i so much as think of picking up my laptop to talk to you all.
The trauma is real, the PTSD is real, reliving the experience over and over is real. Cancer is no joke, and those that fight it are some of the strongest individuals on this earth.
Keeping the faith,
Meg
Comments