Temozolomide (temodar, for short) is the type of oral chemotherapy that I have been taking since May 2021. It’s a chemotherapy drug used to treat certain brain tumors, including oligodendroglioma. I did a 42-day daily course last May and June, and then started my ‘5 days on / 23 days off’ cycle at a higher dosage last July. For individuals with my brain tumor grade and type, it seems that I fall into a standard of care that is somewhat common - surgery, followed by chemo and radiation, followed by this ‘maintenance chemotherapy.’
This weekend, I finish my 5th day of the 5/23 cycle, meaning that effectively, I’ve made it through 10 rounds of monthly chemotherapy. My own monthly schedule looks like this:
Day 1: Desensitization process, where I take my medication in micro-doses across the span of seven hours to reduce my body’s allergic reaction
Days 2-5: Take medication in the evening
Day 21: Get blood work done
Day 28: Get blood work done, then cycle back to day 1
What does this look like each month? While the schedule above looks strikingly straightforward, there are can be different bumps along the way, including the side effects. My energy levels have been different each month, and the allergic reaction has also varied in intensity over the past half-year. For a little insight into my own chemo experience, here are a few of the moments that stuck out this time:
April 11th (Day 21): We went to get my blood work done at a clinic in the afternoon about three miles from home. This was one of the quickest visits ever - no line at arrival, very quick process, in and out of the clinic in just over 15 minutes. I know the drill well and the technician I see often knows that as a left-handed person I prefer to get blood drawn from the right arm. The whole process took just about an hour from home to the clinic and back.
April 12th (Day 22): UCSF notified me that all is fine with blood work and that we’re ready to process my monthly temozolomide order.
April 18th (Day 28, one day prior to cycle beginning): I call my pharmacy to ask if the monthly medicine is ready for pick-up. The pharmacy notes that it isn’t, even though I’ve been told by the delivery service that the medicine is already at the pharmacy. Several calls and lots of time on hold ensue. Note, calls are all polite, but this is stressful. Finally, medicine is confirmed as available. Whew! Medicine management can be tricky.
This cycle just happened to coincide with my MRI at UCSF’s Brain Tumor Center, and a meeting with my doctor a day prior to starting medication. So first, after work on Monday the 18th, we drove across the bridge, parked at UCSF Parnassus campus, and I checked in and changed for my MRI right on time. Though I’ve had quite a few MRIs done over the past year, I forgot about getting an IV placed in my arm prior to the procedure. Luckily, it was smooth as can be, and the nurse who put a pillow under my arm for comfort while arranging the IV wins the prize for patient consideration. After my MRI, I met with my doctor, who’d already had a chance to review the results. No noticeable brain tumor progression as per the MRI. Fantastic news! Since I was already at UCSF, I was able to get my lab work done onsite. Prior to driving back home, we picked up takeout from Loving Hut for dinner. Wonderful vegan food just a few short blocks from UCSF - this will definitely become a tradition! As my sister just happened to be in the area, we commuted home together. Beautiful views of San Francisco while crossing the Golden Gate Bridge. Thought back to all the times I've passed that bridge over the span of many years. That evening before bed, I started taking antihistamines to help relieve my allergic reaction to the medicine.
April 19th (Day 1): I woke up and took more antihistamines prior to beginning the desensitization process. I map this process out on a piece of paper, as over the course of chemo day 1, I take a total of 33 pills in sequential order. It’s very easy to get mixed up or thrown off on the timing. I made my schedule for pills from 5 a.m. to 5 p.m. and was set. I had a particularly meeting-heavy workday but thought that I’d just get through it, even if tired. Tired I was! I had to take a calculated 20-minute nap in the middle of the day, and again at 5 p.m. The antihistamines just make me incredibly tired, particularly on days one and two. Toward the evening, my sense of smell was in overdrive (as often happens to me while in treatment), and all I wanted to eat for dinner was a peanut butter sandwich. So that’s what I had! Took my last pills before bed, and slept very heavily through the night.
Of note, this was the first time in about half a year that after the desensitization process, my body hadn’t broken out into super itchy red spots! This felt like a major win. What wasn’t a win was that I didn’t make my 10,000 steps for the day - broke the streak for the first time in months. That’s OK - there’s always tomorrow.
April 20th (Day 2): Days 2-5 are much more straightforward than day 1 of the chemo cycle. The ‘main’ pills that I take are an anti-nausea pill and just one small but very powerful chemo pill, within an hour from each other before bedtime. I also take medicine to help relieve constipation throughout the whole week at different times of the day, every day.
This week, day 2 was probably the hardest physically. Here’s what I wrote in my journal:
Just extremely tired throughout the day - had to take a quick nap before 1 p.m. meeting, then again after, then again in the evening. All this after just one day of temozolomide. Felt physically ill today and the only way to combat it was to take Tylenol for recurrent headaches and close my eyes. On a bright note, I did make my 10,000 steps.
April 21st (Day 3): Woke up feeling much better than the previous day. Made it through work, and taught yoga in the early eve via ZOOM; also participated in my yoga philosophy study group via ZOOM. I did sneak in a solid 40-minute nap in the middle of the day. Noticed that the allergic reaction is much more manageable this cycle - just a few spots vs. multiple from the past few cycles. What a welcome surprise and relief.
April 22nd (Day 4): I actually felt really good through most of the day today - must be because it was my dad’s birthday! Just took a one-hour nap mid-day. I took my friend’s rigorous yoga class in the evening and though I thought I’d have to take some variations or simply skip some parts during the asana section, was actually able to engage breath to movement in a way that felt nice and natural. We had vegan lasagna and vegan mac and cheese for dinner, and both felt fine on my stomach. My skin was a bit itchy but not nearly as bad as in previous months. Physically felt much, much better than the previous few days.
April 23rd (Day 5): My chemo day 5 falls on a Saturday, and for much of the past six months these Saturdays have tended to be COVID-Saturdays, i.e. staying in or close to home, and little contact with others. However, last month and this month, we’ve had a lot of family celebrations. Baur and I went to San Francisco to meet family members to celebrate my dad’s birthday at a beautiful outdoor cafe overlooking the Pacific Ocean. I felt physically fine from the early morning - did very early 5 a.m. yoga practices and took a walk in the morning prior to the SF trip. Napped for a good hour upon return home from the city. I took my anti-nausea pill in the evening, and my final chemo pill for this cycle an hour later prior to bed. I popped it in my mouth, willed it to please help keep me healthy, and then, glad as I am for the work they do, took delight in seeing this week’s pill containers now empty.
Day 6 Reflections: I woke up late this morning. I took my morning medicine and then let myself sleep a full additional hour, so slept in two hours longer than my regular wake-up time on weekdays. After five days of temodar and other medicines for side effects, my body needed that sleep, and so I listened to it.
My relationship to chemotherapy is complicated. Whose isn't? While I have the monthly process down, I don’t know what to expect physically or emotionally. It’s different every time. I do think that healthy food, movement, and lots of water throughout the week really help, but also taking the space and time to just rest as needed. The power of a comfortable blanket coupled with sweatpants is not to be underestimated!
Chemo affects every individual differently. For me, the side effects that have been consistently present are fatigue, constipation, and associated headaches, in addition to the rash across my body. This rash is apparently rare, and does not happen to many people! Appetite and certain food smells have been an issue, but quite manageable. Overall, I’ve been able to eat well throughout treatment. I’m blessed to work from home, and to have a work schedule that offers me the flexibility to take breaks as needed. I’ve also been blessed with fantastic care teams who help me navigate through the treatment and its complexities.
Temodar round 10 was a little different. I’m nearing the finish line, and just have a few more months to go. The prospects of crossing that line and ringing the bell make the treatment more bearable. Someday quite soon, I’ll be looking back at chemo and it’ll be a memory, not the regular ‘here and now’ reality that it’s been for the past year.
Whether you are in or about to start treatment, a caretaker looking after a loved one, or a friend or family member who might be curious - I hope that posts like this one help demystify some of the experiences associated with cancer treatments.
Additional resource: Please refer to Temozolomide FAQs from UCSF’s Brain Tumor Center for much more about this type of chemotherapy if curious.
Image: San Francisco Bay - flowers, rocks, bay, island, clouds, and birds; taken during an evening walk on chemo day 2, April 20th
#temodar #temozolomide #chemotherapy #cancertreatments #braintumorawareness #braintumorsupport #bewellnow
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