It has been a minute since I have updated you all. Life has gone back to busy here in Cotterville. With school, baseball, karate, and church our schedules have filled back up.
I had my second round of AC chemo last Tuesday. All in all, it has been a better experience than the first. My major symptom is fatigue. There have been a few days in the last week where I have slept the majority of the day. Today, we took Eli to daycare. I came home and ate some breakfast and told Chris I was going to lie back down for a few. I woke up at 2! I had no intention of sleeping for five hours, but my body needed it. In addition to fatigue, there have been some nausea. Constipation is a huge side effect and I for sure have battled that in both treatments so far, but nothing too bad this time around.
A few weird side effects that I noticed both times, but more prevalent this time is the loss of taste. The entire weekend nothing tasted good at all. Just bland. The bread was the worst thing I could eat. It was horrible. Along with the taste buds being out of whack, my sense of smell is weird as well. I keep smelling something and the only way I can describe it is that it smells like cigarette smoke. I smell it all the time. At home. In the car. Random other places. No one else smells it. It is just so very odd.
Overall, I am doing okay. The fatigue is hard on everyone. Chris has to do everything and he does it without complaint. Isaac is a great helper and Eli is learning how to clean up toys and such to do his part as well.
I want to leave you with this thought. Every day many people call text or ask in person how I am doing. I greatly appreciate that. It helps knowing how big my support system is. The thing I want everyone to realize is that cancer affects more than just the patient. The entire family is in a battle. The things other members of the family are going through is often forgotten. Their feelings put aside to focus on the patient. It is hard for everyone. Don’t forget to check on all members of the family. I try to do this daily by asking Chris and the boys how they are doing. How they feel about all the changes happening and how they are coping.
We are so blessed by so many friends and family who have stepped up and helped us in the last two months. It has made this journey much easier to navigate. Thank you from the bottom of our hearts!
When I started chemo they told me that two weeks after the first infusion my hair would begin to fall out. They could not have been more accurate. At exactly day 14 I was able to very gently pull or brush my hair and it came out in patches.
I knew that I eventually wanted to buzz it off, but I also knew it was still too thick in the back. Throughout the morning I continued to manually pull it out. That sounds so brutal but there was no pain. It just came with ease. After running a few errands we came home and cut the rest off.
I thought I would be more emotional through this process. There were tears, but in talking about it with Chris and other family members, this is temporary. It WILL grow back. And the fun part is we don’t know what it will look like. It could be a completely different color or curly. Who knows! Below are pictures of my amazingly supportive husband shaving my head along with the after picture.
Through this blog, I have tried to be as real and transparent as possible. I may be smiling but I hadn’t been the whole time. It was hard. The hardest part is more what my kids will think. How will Eli react? As the oncologist told me, this is the most visible sign that you are fighting a battle. Everyone you see me from here on will know.
There have been some fun experiences since shaving my head. I am so much cooler! I seem to be always hot and not anymore. I will save money on shampoo. I can get ready in the mornings much faster.
I also find coordinating my outfit to match my head wrap and earrings are fun!
Through this whole process, I am trying to find the good in every situation. It is weird to put a shirt on and not have to pull my hair out of my collar. It is weird to reach up to twirl my hair and find nothing there. It is weird to lay on the pillow at night and feel the cold fabric against my head. It is all different, but this time next year will hopefully be back! Honestly, I may never go back to long hair. The short hair before chemo was great!
As with the discussion on reconstructive surgery for my breast, cancer has changed me. I always knew that beauty is what is inside, but it’s hard to see that clearly when you’ve lost two things that define you as a woman. A breast and hair, but on the inside, I’m still Carrie.
Some may be wondering how the kids reacted. Isaac did fine. He plans to get his head shaved this evening to match dad and me.
Eli saw the shaving process happen, but when I got down to show him he was a bit overwhelmed. He couldn’t look at me. He wanted away from me as fast as he could. This hurt. I tried talking to him and saying it’s mommy, don’t be scared, but he was. I excused myself and cried a bit more. Once I put my wrap on he changed. He realized it was his mom! By the end of the evening, he was crawling in my lap for cuddles.
I haven’t had a chance to talk to Jordan in great detail yet, but at 18 he’s old enough to comprehend what’s going on. He’s a very strong young man and has jumped on the deep end at college and is rocking his first term. We can’t wait to see him and have him home from Thanksgiving to New Years!
Today has been a down day. Over the last eight days, I would say three have been down. One, yesterday, was a great high. This is a rollercoaster ride and I’ve never liked coasters.
As I said, yesterday was a high. Early in the morning I had an appointment with the oncologist for post-chemo lab work. They took three vials of blood, which I assume will be the normal amount taken each week. I was taken back to the waiting room and told that the doctor would see me when the results came back.
According to the paperwork, it took the lab about 20 minutes to get the results updated. Impressive!
I was taken back and weighed. I was surprised to see I had lost seven pounds in a week. To some this might be alarming and it was at first to me and then I thought about my week. I had been eating but far smaller portions than normal. In addition, all I had been drinking was water or Gatorade. Those two things were good things. I often eat far too much and have Dr. Pepper constantly running through my veins. The weight loss could easily be explained by making those two changes in my diet. The nurse and doctor thought nothing of the weight loss so I assume all is well.
Now onto discussing the blood work. She started off by saying all these numbers are to be expected by someone who just had chemo. There were two main things they were looking at. My white blood count (WBC) and my ANC.
Prior to chemo my white blood count was a 7. Well within normal limits. On this day, it was a 1.3. I was shocked at how low it was and questioned if the Neulasta shot given the day after chemo had worked. She assured me it had or that number would be a zero. What the white blood count means is that my body can’t fight infection. White blood cells are what fight the nasty germs and mine were nearly depleted.
The next value she looked at was the ANC. I am not sure what my value was prior or chemo, but these results showed a value of 200. this puts me at a “High risk of infection”. If it falls below a 100 you are in the “Extremely high risk” category. At least I wasn’t at the bottom!
The doctor explained to me that we needed to watch closely for signs of infection. I inquired about fever being an indicator and was again shocked to find out fever would not be a good indicator for me. My counts being so low, my body would not have the white blood cells needed to even produce a fever. By the time I got a fever it would be a very severe infection. I had absolutely no idea that could happen.
I was slightly bummed by the results. I didn’t feel bad but my blood work showed I was definitely not at the top of my game. I was planning to have lunch with a friend and my soul needed that visit. I told the doctor that I was upset because I would need to cancel my lunch date and she said, no you don’t. What?!? I can go? She then explained that while I am high risk, if I am smart and assume no person or surface is clean, clean it myself, I would be okay to live life. She told me that the lunch was important for my emotional well-being. She asked where I planned to go and I told her to a little sandwich place and we planned to eat on the patio. She said go and have a great time. Yes,ma’am. No arguments here.
That lunch is one of the main reasons my day was a high. Sitting on a patio in 70 degree Texas sunshine enjoying a meal with a very dear friend is exactly what I needed. We talked about life, not just cancer. Sure there was talk about that but we got it out of the way first and then moved on to our kids and solving as many world problems as we could in our 90 minutes together.
The rest of the night went okay. I have been battling headaches off and on for a few days and ended the night, as I had the three previous, with a pretty nasty headache. I went to bed medicated and had an up and down night with not feeling well and Eli having trouble sleeping as well.
This is when it started to go down. We had an early morning wake up call. Our house was going to be cleaned (For Free! Blog coming on that soon!) and we needed to not be here while they did their thing. We loaded up to head to another dear friend’s house to spend the morning. We had to get there in time for Isaac to jump on his first school class around 8. The first part of the morning went well, but around 10 I started feeling very run down, weak, and all over yuck. Thankfully, our house was done by 11 so we headed home.
I got concerned about the way I was feeling along with finding a swollen lymph node under my left arm so I called the doctor. The swollen nodes on my good side (non-cancer side) really scared me. As you might imagine, my thoughts went to the cancer having spread. I knew I would worry so I wasted no time calling. They promptly returned my call and eased my concerns about the new symptoms. She said the lymph system can have this type of reaction during chemo treatment. She then said that based on my lab results the day prior it would be wise to go ahead and start me on antibiotics. we talked about the headaches again and the nurse believes that it may be due to dehydration.
This afternoon I began taking a strong antibiotic called Levaquin. The pharmacist informed me to not do strenuous exercise while on this medicine because it can cause tendons to rupture. Again, what? Noted. And I promise there will be no strenuous exercise happening. My plan for the next few days is to take my antibiotics, drink plenty of fluids, and rest.
I tried to do this my way. I tried to say, I’m fine. I feel fine. I’ve got this, but yesterday and today have shown me that I am not in control. My body is. More importantly, my God is. I need to listen to Him as well as my medicinal providers and allow myself time to not be okay.
The prayer is that my WBC can double by Tuesday so that I can receive my second dose of chemo. That magic number needs to be at least a 3.5. We don’t want any delays in getting this over with!