My fourth treatment has been the roughest yet, by a significant margin. The nausea came early and with a vengeance. By Friday evening, a few hours after treatment ended, I was horribly queasy, and nothing helped. I still refuse to take more meds than I have to, so the two bottles of anti-nausea pills remain unopened, but I thought about it.
Evan and I rode the tandem on Saturday and despite still being nauseous, it was great. I’m not sure it actually made me feel any better, but it was at least a distraction. I’m not more or less nauseous whether I’m laying around or moving about, so I’d rather be the latter and at least have other things to focus on. Shannon came over and rode with Evan while I napped and then made us a delightful salad for dinner (which I had to sauté, of course — see my last post about neutropenia precautions), and miraculously it was the only period of time between Friday afternoon and Tuesday afternoon that I actually felt like eating.
The worst part about the nausea is being disgusted by food. I love food and I enjoy cooking, but I tried to make dinner and was nauseated by everything I looked at. I eventually had to ask Evan to make it. I couldn’t even drink coffee for several days post-treatment. I love coffee. My morning cup of coffee is always something I look forward to, but suddenly I couldn’t stand the taste. Everything tasted weird, even water. Especially water. But it’s really important to hydrate and flush all the chemicals out of my system, so I choked down metallic-tasting glass after glass. It was a whole week before water, even flavored seltzer, tasted normal to me again.
I did another ride on the Sunday after treatment before the dreaded fatigue set in — which I now know happens around day 2 or 3. Right on schedule, on Monday the 4th of July, I spent a lot of the day laying around with the exception of a short paddle at Black Mo. The all-consuming fatigue didn’t linger, but it took longer this time for my legs to feel stronger on the bike, and my heart rate consistently was anywhere from 10-20 bpm higher than it normally would be with the same perceived effort level. That concerned me for a while, but within a little over a week it had gone back to normal. I stopped wearing my watch to ride so that I wouldn’t stress about it so much.
I thought I was starting to get the dreaded mouth sores — yet another common chemo side effect because the rapidly-dividing cells in your mouth are among those susceptible to damage — but one cup of baking soda and salt in water cleared those up thankfully.
I found myself in quite a mental funk for most of the week, even once I started feeling better physically. I longingly looked at my friends bike rides on Instagram and Strava. Even though I’m still riding consistently, I miss long, all-day hard efforts. I miss the good burn in my legs. I miss being able to just say yes to things and not worry about the million precautions I have to take to not get sick or get an infection. I miss being a dirtbag and I miss feeling really strong.
This treatment cycle was also dominated by scanxiety. It was time for my interim PET (positron emission tomography) scan, which would show whether or not my current chemo regime is working. For Hodgkin’s lymphoma, the use of a PET scan for staging and then midway through treatment is crucial to determine the best path forward. Based on my initial diagnosis, my oncologist thought I would need four cycles (eight treatments total, every two weeks, so basically four months) of ABVD chemotherapy with no radiation, assuming I was responding well after the first two cycles. If my scan showed that I was not responding that well, if there was still a lot of cancerous activity after those first two cycles, I’d need to potentially switch to a different treatment plan. There is another type of chemo that is used in the treatment of Hodgkin’s that is more aggressive, but also more toxic for healthy cells. There’s also the possibility of using radiation in conjunction with chemo, but with that comes the increased risk for secondary cancers as well as other long-term issues depending on the area of the body it’s being used on. The PET-guided approach allows for the most effective treatment of Hodgkin’s while minimizing toxicity by not giving more treatment than is needed in patients who respond well. Because most Hodgkin’s patients are young (in their 20s and 30s) and it has become a highly curable form of cancer, minimizing long-term issues and chance of recurrence is now the focus of research and treatment regime development.
All that said, I was extremely nervous to find out how I was responding. Especially because this treatment cycle was so much worse than the others, I couldn’t imagine doing something more aggressive. Halfway through, I can start to see a light at the end of the tunnel, but not knowing if that light is truly there is nerve-wracking. And what if I am in that 7% of people who don’t respond at all, to any sort of treatment? There always has to be somebody.
To make matters worse, I got a call a couple hours before my scan was supposed to start that the machine was down and they were going to need to schedule me for three weeks from now. Are you kidding?!? There was no way I could wait that long after building myself up for this. I had fasted for six hours before my scan, eaten an extra low-carb diet the day before and day of as per instructions, skipped my morning bike ride because you aren’t supposed to exercise right before a scan (all these things because it can disrupt how your body is using glucose, and visualizing the cancer’s metabolism of glucose is how the scan works). I was already having a rough week mentally. I needed these results. Good or bad, I needed to know. I called my oncology nurse and asked if there was a way they could help me get an earlier appointment at another facility. I was willing to travel a few hours if it meant not waiting three weeks. Luckily, they were able to get me in at Danville on Friday, just two days away.
I followed all the pre-scan protocols yet again and hopped in the car with Evan on Friday morning to head to Danville. He brought his mountain bike along to ride the Geisinger Trails, which are right behind the hospital, during the two hours that I’d spend getting injected with radioactive material and lying in a tube. After the scan was over, I had a bad feeling. I thought that the demeanor of the tech had changed after she saw my scan — she had been really nice and friendly before but then seemed really awkward, or like she was trying to rush me out. I was convinced it was because she had seen the images and they showed that I had cancer everywhere.
I spent the next three days anxiously waiting, and of course since it was the weekend I wasn’t going to get my results til likely Tuesday or even Wednesday. I was surprised when I got them in the online portal on Monday afternoon. I saw they had been uploaded right before I had to jump on a work call, so I waited to open them. And even afterwards, I was scared to look. I was convinced they would be bad, and then I’d have to wait another four days for my visit with my oncologist to go over them and figure out what was next. Could I handle that?
I also knew I couldn’t handle not looking at the results until Friday, and if they were concerning I wanted time to gather questions to ask at my appointment. I needed to look. I clicked on the link to open the results and closed my eyes. My heart was pounding. When I opened them, the first thing I saw was “Deauville classification 1.” I gasped in happiness. The Deauville scale is used for assessment of response to treatment for Hodgkin’s and some non-Hodgkin’s lymphomas. It uses two different reference organs — the mediastinum (area between the lungs) and the liver — that have a relatively constant uptake of glucose to compare against. If there are areas that have higher glucose uptake than these two organs, they are likely cancerous. For Hodgkin’s lymphoma, a Deauville score of 1 or 2 means a patient has had a “complete response” to chemo — or a “negative” PET scan. Scores 4 and 5 mean that there has only been a partial or no response and the cancer is still very active. Score 3 is a bit more open to interpretation depending on the patient’s individual situation and other factors. In short, a Deauville 1 is the best result there is.
The overall impression of my scan also reads “No abnormal uptake present to suggest lymphoma.”
I did it. I’ve found myself looking at the results several times a day, just to remind myself that they are real.
Treatment is far from over — I’m likely just at the halfway mark. I need to wait until this Friday to talk to my oncologist, but I suspect we will stick to the original treatment plan of four cycles. This is standard protocol and assurance that every single cancer cell is gone (individual cells don’t show up on the scan, just masses of activity), reducing risk of recurrence. As chemo effects are cumulative and this last round was by far the worst, I know it’ll still be a really hard next couple months, but the light at the end is shining bright.
14 Replies to “Scanxiety.”
Hallelujah! Congratulations! You did it!
Whew! Helena, I read the entries from the beginning, afraid to breathe. But this is good, hopeful news, and I feel like shouting, “She’s got this!” ❤️
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Awesome! Your strength>cancer. Keep kicking it’s ass.
I’m so happy about your results. Thanks for sharing your story, emotions, highs, and lows. My heart and thoughts are with you!
So glad that your results are good! And even with the short hair, you are beautiful! It is so good to hear about your motivation to keep active and determined. Thanks for letting your FBF know what was happening!
You are a strong, beautiful woman and I admire you. I had renal cell cancer in 2001 I was given a 10% chance to live. Your father is the one who found the cancer and saved my life and I will be always grateful. I will be praying and thinking of you and waiting and watching for your updates and your stories, which I enjoy reading very much. Sending love and hugs, Barb
Thank you for sharing this Helena. I am so glad to hear that you are facing a more positive outcome. I admire your persistence and respect your strength. May you always have the beauty and awe of nature that shines through in your posts as your foundation and support. Best regards, Joel
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Congratulations. You’re an inspiration.
Congratulations. Great news.
Congratulations! My two worst periods for the PET scans were the very first one and the one right after the first two cycles. The wait for the first PET scan and the results really put me in a dark place. By the time I received the initial results had made peace with my life, that was eye opening. The first PET scan after my treatment period, I had pretty much the same anxiety as you experienced. I believe as fit individuals our bodies respond better to the treatments. BTW, I still can’t eat a ham sandwich 8 months after treatment! There are other foods that I use to eat on a regular basis, that just don’t taste the same. I went through a period were food was either too salty or too sweat. Fortunately, that period has passed. Following my last infusion, it has taken my body about 7 months to rid itself of the chemo aftereffects. I finally feeling like my old self again. Take care and keep riding!
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Thank you for sharing! Glad you are back to feeling like your old self. How many cycles did you do?
That’s great news! Keep the faith!
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Very much enjoy your writing and the emotion that comes with it! Keep pedaling and paddling, what are you paddling these days – would love to hear more about solo canoe!
Evan and I actually went on quite a boat-buying spree this spring… I may need to take a break from the lymphoma content and a post about all the boats!