In 2017, a few weeks after my daughter was accepted to the college of her dreams and three days after Christmas, I was diagnosed with breast cancer.
2018 started with me facing one solid year of treatment starting with 6 rounds of chemotherapy, followed by another 7 months of infusions, along with surgery, and 31 radiation treatments. When I first heard the plan, I thought “no problem, I will be able to rest a bit after each treatment and then get back to normal”. I’ve heard stories about people having chemo in the morning and being at work by noon.
That was not how my experience went. I was knocked on my rear end and in bed for a solid 5 months. I could barely walk and most of the time I was either sick, asleep or wishing I was asleep. I was really lucky, I not only had great doctors taking care of me, I had a great support system to help me. My husband and daughter were there to make sure that I ate as best as I could and took all the medications that the doctors and nurses asked me to.
In my case, all of the medications I had were to try to help with side effects of my treatments.
I had medication that I had to take for 4 days after treatment, one once a day and one twice a day to minimize bone pain, I had other pain medication, anti- nausea medication, cough medicine, heart burn medicine, and many, many lotions and creams for rashes and reactions. They were all on different schedules! It was ridiculous.
Even with the three of us, it was difficult to remember if I had taken everything and when. The worst thing was when I would take something on my own. I would frequently get confused about the day of the week and time of day, so a few minutes after taking something I was likely to have trouble remembering if I took it or just thought I had. This caused stress for everyone because if it was something for pain or nausea, I couldn't take it again for 4 or 6 hours and we didn't know if I really even took it.
So, early on in the treatment I started to make little labels out of sticky notes, similar to ones I had made in the past to remind me to take my vitamins. I had different colors for different schedules: daily, twice a day and hourly.
Eventually it became a really easy-to-use system that made things easier for all of us. We even used my little sticker system when our dog got an ear infection and needed ear drops twice a day. That way whoever saw her shaking her head in the morning or evening knew if she had already had her ear-drops or not just by looking at the label on the box.
One day I grabbed my laptop and looked online for a pre-made version of something like I had been making. It was getting harder for me to make them but we had come to rely on them. I couldn’t find anything like it. Nothing even close. Just old-fashioned plastic pill boxes in various shapes or really complicated apps and electronic devices. But those things didn’t work for what I had going on.
And, I really wanted to keep everything in its original package so we could have all the instructions and warnings handy if we needed to check something. That’s when tooktake was created. I decided that these labels had helped us so much that they should be available to everyone.
Through the rest of my treatment we worked on tooktake when I was feeling up to it. We tested out different things, figured out what worked and what didn’t. Which things were the most useful to us and why. By the time I was done with my last infusion, Dec. 26, 2018, tooktake was almost ready to go!
For the next 5 to 10 years I still have to take one medication every day to help keep the cancer from coming back.
You think that would be motivation enough for me to remember to take one little pill, but nope, I still can’t always remember. So I still use tooktake every single day. Only now, I don’t have to make them out of sticky notes.
My hope for tooktake is that this simple little thing will help you, your family or your caregiver, and if you are a caregiver, hopefully it will take a little bit of angst out of your day.