Hi, and welcome back to the next part of my story. Once the diagnosis was official and the chemo plan was locked in, the reality of my “new normal” really started to sink in.
If you missed the previous parts you can find Part 1 here and Part 2 here.
The Count Begins
In part 2, I talked about how much I absolutely hated getting IVs. My treatment regimen was R-CHOP, which meant receiving Rituxan on day one, followed by the CHOP medications on day two. We repeated this cycle every 21 days, assuming my blood work looked good. Looking back, my track record included six rounds of chemo, five hospital stays, three CT scans, and three PET scans. By my count, that adds up to about 23 IV pokes. I had many blood draws as well, too many to remember the exact count. To this day, dealing with needles and IVs still brings back a wave of anxiety and trauma.
Tracking the Lows: My Energy by the Numbers
With the specific treatments explained, I want to describe what the days in between actually felt like. Imagine the ocean’s depth. With treatment one, you’re floating at the very top. By day ten, you sink ten feet down. As treatment two approaches, you float back up near the surface, but you don’t quite break through.
After treatment two, the pattern repeats, but worse: you sink twenty feet down, and only make it back up to the ten-foot mark. By treatment three, you’re halfway to the bottom, recovering only a quarter of the way up. This exhausting decline continues until the sixth treatment, where you are hovering right above the ocean floor. On day ten of that final cycle, you hit the very bottom. It’s like a roller coaster where each climb gets lower and lower, and the ground gets closer and closer.
My husband was incredibly supportive and truly became my rock during this time. Summers are always a whirlwind for our family; Kevin works a lot of overtime, and the kids are busy with summer ball. In our normal routine, I’d take the kids to their games while Kevin prepped dinner so they could finish their chores, shower, and get to bed on time.
When I was admitted to the hospital for a week at a time, the entire burden fell on Kevin. He had to handle his regular work schedule, the cooking, the sports schedules, his daily cattle chores, and still find the time to drive up and see me every single day. On the days I was home, Kevin encouraged me to just do what I normally do. To keep from drowning in housework, I had to run two loads of laundry every day. Because we hang our clothes to dry in the summer (I’ll explain why in a future post!) we had to adjust the routine. My son would carry the heavy basket of wet laundry out to the clothesline. Once the clothes were dry, I was able to carry the basket back into the house myself; I’d be breathing heavy, but I was still able to complete the chore.
To be clear, this level of fatigue isn’t the same as just being tired. It’s not a matter of sitting down for a moment, catching your breath, and getting up to continue with your day. For instance, I woke up one morning feeling wonderful. I took my shower and did my makeup, but immediately afterward, I was dead tired. My energy was completely depleted. I couldn’t just sit a bit to recover, because the reality was that my body simply didn’t have enough red blood cells left to carry oxygen where it needed to go.
When it came time for my sixth and final round of treatment, I simply did not want to go. As I was stepping out the front door, I literally doubled over, dreading what was to come. It was so incredibly difficult to force myself into the car. My daughter, Erika, was in high school at the time, and I called the school to excuse her for the day. While I could have managed the drive to the hospital, I knew I wouldn’t be able to drive myself home after the treatment. Erika drove me and stayed by my side for both days. She was an absolute angel.
The Ripple Effect on the Kids
I always knew my cancer didn’t just affect my husband. It took a heavy toll on the kids, too. Early on, I informed the school about my illness and asked the counselor to check in on them from time to time. Around that time, Erika had a high school assignment to write a paper about her future career choice. She actually asked my oncology nurse if she could interview her, explaining that she was considering entering the field herself. The nurse gladly agreed.
Erika never brought the paper home to show me, and honestly, I never thought to ask her about it at the time. It turned out the paper was with the counselor before it was ever returned to Erika to bring home. After my final chemo treatment, the school counselor asked if I had read Erika’s paper yet. When I told her no, she handed it to me to read. The essay opened with the words: beep, beep, beep. I really wish I could have saved it. If it hadn’t been for that counselor sharing it with me, I would have never known.
The News from Dr. Andersen
Then came the big appointment day. The moment I would find out if I was finally in remission. When Dr. Andersen walked into the room, the first thing he told me was that he would be leaving the hospital to practice in Portland, Oregon. My heart completely sank. He looked at me and said that out of all his patients, I was the one he worried about most when breaking this news. If you remember, I had specifically asked him early on if he would stay and see me through my entire treatment journey.
To make matters worse, I wasn’t in remission yet. Dr. Andersen explained that my SUV uptake (the measurement used on the scans) was at two point something, and that number needed to be two or below to officially be in remission. Because of this, he recommended that I start radiation.
I ended up having 25 “glows,” as I liked to call them. I had always heard that radiation was awful, but honestly, for me, it was a breeze. During the setup process, the technicians marked my skin so they could perfectly align the radiation beams. The absolute worst part of the whole experience was just a mild sunburned feeling on my back.
The Result
A month after my very last radiation session, it was time for my next oncology appointment. I had been treated by Dr. Soule a few times on Dr. Andersen’s days off, so she was a familiar face. She was the one who got to deliver the incredible news: my SUV level was well below two. I was officially in remission!
Thank you for sticking with me through this part of my journey. I know it was a long read, but there was so much to share. In Part 4, I’ll be talking about the incredible people who surrounded me during this time. I’ll share some of the questions and comments I received from family, neighbors, and friends, and look back at the amazing ways they stepped up to help me through it all. See you in the final chapter!
Yesterday is today’s memory.
Be sure to capture your memory today!
All the best,.
Debra Ellen
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