After the initial surgery my cancer was typed and my nodes were checked. I had a micromet in a single node. That meant chemotherapy. My initial plan was not to get cancer, second was to only need surgery. The results made me think that maybe I shouldn’t have opinions about what was going on in my body anymore, it simply wasn’t going along with the plans.
I knew people who had gone through chemotherapy, it was brutal on them and I didn’t want that for anyone, including myself. There was time between knowing I needed it and actually getting it. First thing was to get a port put in place, that required surgery.
Getting a port wasn’t as scary as getting the mastectomy, but still a little scary. It was the perfect time to search online for what I could do to prepare for chemotherapy and how to make it less brutal.
I learned a few years ago that you don’t Google your own symptoms, unless you want to self diagnose sudden onset amyotrophic lateral sclerosis, it really isn’t a thing. A few years before that I learned that you shouldn’t Google your child’s condition. Our oldest was born with shoulder dystocia and our youngest was born with hip dysplasia. It was very easy to pick out the friends and family members who Googled the conditions and those who didn’t. Both daughters are completely and wonderfully free of any trace of their conditions today.
This time when Google-ing I was very specific. I typed in the specific medications and what I could do to lessen the effects and to protect my heart during treatment. It turns out that it was all very similar to what my doctor told me. Stay hydrated, stay on top of medications no matter how good you feel, get plenty of rest and keep moving, it helps get the medicine through and out faster, also be prepared for too fast. There were a few supplements I could take, B complex, vitamin D and omega 3. In addition to the things my doctor prescribed: Claritin, Tylenol, prescription pain meds and Zofran.
The first treatment was on a Friday morning. I sat in the waiting room reading a story on my phone from Facebook about a woman who lost her brother and how her friends helped her. It was so sweet, I was sitting there crying as I read it. My husband wasn’t worried, this was at least a weekly occurrence.
The intake nurse called my name and was worried about my stress level this being my first infusion and all, especially since I was crying. I blamed Facebook. He took my phone away, closed the story and handed it back to my husband, talked with me for a few minutes, took my blood pressure and everything was ok. He looked at my husband and told him to make sure not to let me read any more stories like that for a while.
Another nurse came in to give me my blood results, all good and ready for infusion. That wasn’t surprising since nothing had happened yet. She made sure that I had taken Claritin, used the foam over my port and was well hydrated. I told her about the supplements and she kind of nodded and moved on. She ended the visit and sent me to the infusion center across the hall.
We went to the infusion center, checked in, got a bracelet and I waited without my phone. My name was called. We walked to the back and were put in a little seating area with a couple of comfy chairs and a TV. They gave me a warmed blanket and I watched a video about one of the medicines possibly exploding my spleen, that may not have been the sole intended message, but it was the one I latched onto for some reason. The infusion was about to begin.
Two nurses came to my pod in all sorts of biohazard gear. That is a little intimidating and a little scary to think that they are about to put something in a port that has direct access to my heart while wearing hazmat gear. All of the nerves that I had thought I dealt with successfully came flooding back. I was worried about my husband sitting there in regular clothing. In one moment seeing them in hazmat gear I was completely undone. Thankfully they didn’t need to take my blood pressure right then.
They started with a steroid. I really like the energy from steroids. If you are allowed to have a favorite medicine, mine may very well be steroids. Next was an anti nausea medicine. After that was the first of the two anti cancer medicines. Finally, the last one. They checked in on me between each change of medicine and at the change. Nothing untoward happened. It was pretty uneventful, except they brought drinks and snacks like when donating blood, but different. They put a device on me to deliver medicine 25 hours after infusion, it was kind of cool and it blinked green. Pretty bright at night. Between the steroid and the blinking I didn’t really sleep.
The next day I went about my business, staying hydrated, moving around, I cleaned a little, took my meds as prescribed, took my supplements per directions on the bottle. I started beeping. I was in a half asleep state and wondered where it was coming from, realized it was me and briefly considered that it was my spleen beeping prior to explosion. Thankfully the blinking changed alerting me to the actual source of the beeping. I put two and two together and started waking up a bit.
After it stopped dosing me, I left it on for an hour and then removed it. It was an interesting device, kind of cool, would have been cooler if it was for something else. I wasn’t sure of how to dispose of it, so I completely disassembled it and bent the needle and put it in a lemon rind to not hurt anyone. Briefly considered if disposition was in the video and thought they should put that well before the exploding spleen section so people like me would remember how.
A few hours later the steroids had completely worn off or the new meds kicked in or I just developed sudden flu or all of those or something else. I went to bed. Woke up the next day a little worse, this continued for a couple more days.
I took notes on my symptoms, looked up ways to alleviate them for the next infusion, came up with an adjusted plan and was ready to execute for the next infusion. This routine was repeated twice more. I took notes on the fourth infusion because that is who I am, not to prepare for a fifth–there wasn’t going to be a fifth. I asked my oncologist if there was something else I could do, she didn’t have anything else for me to try. Essentially chemo is brutal, stay well hydrated, stay on top of your meds, get plenty of rest and keep moving despite just wanting to be in a coma for the duration of the symptoms.
That was the first incarnation of Survivor Sherpa. I wanted to open a place where we could keep people undergoing chemotherapy in a coma during the worst days of the side effects. You know, because that is totally reasonable, apparently Robin Cook had an impact on me growing up. Thankfully we worked through the bad ideas and kept going to the good ideas and the version that Survivor Sherpa is today. Where we want to help people prepare for surgery, chemotherapy and/or radiation, whatever their treatment protocol. We want to help them prepare for and get through through treatment so that they can thrive after cancer. You can help make this a reality-visit https://www.supportful.com/survivorsherpa to donate if you would like to help us too.