They say you never forget a number. 17 was mine. Day 17 after my first treatment is when the clippers came out and we shaved my head. Several family members had been down for the weekend and it was great! I was feeling good and got to spend some great time with some of those closest to me.
But when Sunday rolled around, it was time.
Every time I was trying to style my hair, more and more hair would end up in my hands. It’s something you KNOW is coming, you KNOW it’s inevitable, but yet you keep trying to push it back and gain the control of a situation that is so beyond controllable.
(rewind…I had originally thought I would go through a process known as ‘cold-capping’. It’s where you basically wear ice on your head for several hours prior to your chemo session, all during your chemo session and several hours after your chemo session. It has shown great results at helping people keep their hair during chemo. After a lot of thought and feedback from my family, I decided against it)
Kaleb, my husband, did the honors…
I can’t imagine what was going through his mind as he had to do that for his wife. The pure strength and courage he had to have while also continuing to make me feel beautiful was incredible. I know he had to be crumbling inside, I mean who wouldn’t? But he persevered. I know that not all women who face this battle are as blessed as I am with a partner like I have, and I realize that and will NEVER take that for granted. I was and am SO grateful.
My son wanted to shave his head too, so we let him. I mean let’s be real, this whole thing has TOTALLY put into perspective that it’s JUST hair! So he shaved his and it was awesome to see the light in his eyes as the two of us were ‘twinning’ our hair styles.
Kallie seemed to take it harder…she had to go inside at one point. I could see the sadness in her eyes as the process continued. And I get it! It’s now visible on the outside what my body has been fighting on the inside. Now I really am sick. It’s for real now.
The same story for the next few months…chemo every other week followed by a full week or more of recovery.
I tried hard to workout when I could. Many thought I shouldn’t but it was the one way I could feel normal. That plus being at the kids events and being present with them…it’s all I wanted. Just some sense of normalcy. A few excerpts from my personal journal during the journey with AC chemo (aka RED DEVIL)…
“It’s 4:30am, I’ve been up since 3:00am and not able to go back to sleep. I’m so tired but just can’t fall asleep. Nausea has hit me, so I took my meds and have sprite and crackers to try to calm it down. I am hoping this round of side effects are less! I can take the fatigue but the nausea and constipation are miserable!”
“Today I was just DONE. Done being tired, done feeling sick, DONE! That’s when the tears and sadness and frustration all come in. I also had to shave my hair shorter. I was getting bald spots so it was looking pretty funny. I mean I can’t believe I’m even sitting here in bed writing this, just seems like it’s not real. But it is SO real. Sometimes I don’t know how I will get through 2 more of these Red Devil chemo treatments, it’s just awful. But deep down I know I will…I have to.”
“I’m coming to realize that 7 days post chemo is going to be my normal. I was trying so hard to be OK after 2-3 days and it just wasn’t happening the way I hoped or wanted, which has been super frustrating. BUT I had a light bulb moment yesterday…I’m wanting to feel NORMAL after 3ish days like so many other people tell me the ddi and I would. I had heard others were back to work on Monday following a Thursday chemo. I have been trying SO hard to fit into that mold and have that expectation!
What I realized is that my ‘normal’ is not what everyone else’s is that I ’m comparing myself to.
MY normal is working out as hard as I can, being hands on with my kids, teaching classes, coaching people online, growing a business and never sitting still. Maybe other people’s normal is just feeling good enough to get to a desk and make it through the day? Who knows? So from this point on, I’m allowing myself the grace and expectation of a FULL 7 days to recover and to just be ok with that.
Yesterday was Monday, one week since treatment #2, and I woke up feeling good! No nausea! AND I got to go workout! It was hard and I couldn’t go the speed I usually do BUT I was there and I was moving…bald head and all :)”
“I’m angry today…no reason just super on edge and irritated at the world. It started yesterday and today was even more so. I want that peace back, but it’s weird. When I feel like this, it’s so hard for me to pray and feel close to God…it’s almost like I just WANT to be mad and feel this way. Yet I really don’t and know that! Just feel stuck…SO DANG STUCK!
“Round 3 today, and my dad’s birthday. He came down this past weekend and it was the the first time I’ve gotten to see him since all of this cancer mess. It was a great visit and I was so grateful to have him here. I’ll never forget seeing him as he walked in and I got to hug him. His smell and his strength yet also his weakness as his daughter fights for her life. I can’t imagine what must have gone through his head as he first laid his eyes on me. Last time he saw me I was healthy and strong…now I’m weak and bald.”
“I was able to make it to Kallie’s last basketball game of the summer (after my 3rd round of Red Devil) and am so grateful! That was my short term goal. My next short term goal was to be able to make it through Meet the Teacher tonight and I accomplished it!
I ’m exhausted but I did it.
I only took 1 nap today, I felt queazy last night after the game and today though. My next short term goal is to make it to drop off for the first day of school tomorrow…I will NOT miss that! I want to be able to attend as many things as possible with the kids, it’s so important to me as a mom AND to them to keep life as normal as it can be. Please Lord let me be there.”
“It’s been more than a week since my last round. I don’t have nausea at this point but have just NOT been able to get my energy back. I started working out again yesterday but still just feel so tired. I had my labs today and it makes sense..my numbers showed that I’m anemic and my white blood was down as well as my ANC 🙁 At least I know there’s a reason I haven’t been able to bounce back this time!!”
“Today’s a day I’ve been waiting for and been excited for!
My LAST treatment of AC-the Red Devil.
As excited as I should be, I’m just not. I’m tired I’m mad. I’m sad. Because I know what the next week or more consists of. I know I’m going to be exhausted (heck I already am!) and will feel terrible and I’m full of dread. Which sucks to be honest because I should be happy and celebrating that this part is almost OVER!!!
I met with Dr. Pala and she was pleased with my physical exam, could tell the tumor is shrinking. She said to get an appointment with my surgeon and she would probably do an ultrasound and get my surgery set. I’m hoping to get all of that done by the end of the year! I’ll start Taxol in 2 weeks! She said we would do a PET scan again after my Taxol treatments and before surgery. I asked her if the fact that I didn’t handle AC as well as I had hoped meant that I might not handle Taxol as well either. She told me that her younger patients don’t usually do as well…her older patients know mentally that they have to stop. They go home after treatment and go to bed and rest for days.
She told me I need to realize that my body is on chemotherapy.
Part of the problem is that my brain doesn’t slow down! So my goal this round is to rest. To take the meds I need to help me slow down, to help my mind stop. To not feel guilty for being in bed when I hear commotion in the house, etc. And to pray. A lot. Pray for clarity on this journey and what doors I should be looking to walk through.”
What a FREAKING WEEK! Well, almost 2 weeks actually. That 4th round of AC was seriously no joke! Not only was I totally out of it basically until Saturday-I felt like I was in a coma or fog or something-but then Kolbi got sick with Hand Foot and Mouth!! Pretty sure I got a virus from that…mouth full of sores then a nasty cold hit me on Monday. So last week was chemo coma and this week is left over fatigue and still queasy and a cold. FUN STUFF.
I broke down a few days ago.
I sat on my bathroom floor just bawling-maybe a bit of a pity party, I don’t know but it happened. This journey is just so dang hard for me and it got to me mentally. I mean my mouth has had sores and my tongue feels like it has cuts all over it and my lips feel burned-so it makes eating hard and so uncomfortable. I mean seriously?!?! As if cancer isn’t enough to battle, there are all of these other obstacles in the way. They aren’t ending me but they’re HARD.
Yesterday I did finally go workout-it’s not like I went 100% in but it just felt good to move.
People say I’m a hero or inspiring but they don’t see me on the floor losing it or in bed out of it for days on end. I try to share and keep it real but I don’t know if it really shows what this is like. Gah, I remember when it was all about rallying and gearing up to fight and now it’s just survival.
Some have said that I have brought them closer to God through this. Maybe that’s part of WHY it’s me? That’s my purpose in this? Maybe I’m the vessel He is using? And it’s working, so I’ll look for comfort in that. It’s easy on good days but not the bad ones.”
That last entry was right after Labor Day of 2018.
I remember it so clearly because not only had my 1 year old been home sick, but I had terrible sores in my mouth that were just plain miserable. It was so hard to eat, but when I was actually hungry and not nauseated I WANTED to eat!!! They had given me this magic mouthwash that was supposed to help. It definitely helped but nothing tasted right and it was just uncomfortable.
That’s part of what you don’t know going into this…those side effects that you think are going to come and go, but yet they don’t. The simplest of things are compromised. Eating, going to the bathroom, sleeping, drinking water, etc…all things that as healthy adults we just do without even thinking. But when going through chemo, those things don’t just happen, it’s always a freaking ordeal.