This is our life?! This is our life.

I’ve read it somewhere from another cancer mom that there is this constant oscillation between these two phrases- the question and the statement. And I’ve definitely found it true for me. There are times where I stop and look at all that’s going on around me and simply cannot believe it. And others when someone asks how we’re doing and I say, “Oh, we’re fine.” And then rattle off all the things that are not in any way normal or fine, because that’s just how it is right now. It’s not normal, but it’s our normal. I think one of the only reasons we can find ourselves more using the statement and less the question these days is we are finding ways to adapt. There are SO many ways that a cancer diagnosis changes your life beyond the doctor’s visits and treatments. Slowly, we’ve found ways to adapt and adjust to the things we did not ask for. And in doing so, we’ve made things a tiny bit more manageable.

Whole house intercom system (and walkie-talkies)         

We found early on that we had to have a way for Adeline to communicate with us wherever we were in the house, and we couldn’t rely on our phones since we don’t always have them on us. There was a night in the beginning that Adeline needed our help in the bathroom and her yells weren’t waking us up. I was on a mission after that night to find some way for her to reach us (hands-free) from anywhere in the house. We finally settled on Amazon Echos, using the drop in feature. Adeline can now reach us from any room in the house (including the bathroom). She also purchased herself an Apple Watch. Since Todd and I already had Apple Watches of our own, she can use her watch to walkie-talkie with us anytime. 

Calendars...and lots of them                                            

With so many appointments and meds to take, we have several calendars with Adeline’s protocols throughout the house  Adeline has her own in her room that she uses to track symptoms. We have a whiteboard hanging in our mud room that shows the current week. And I have a monthly/weekly calendar that I write all her protocols in. It helps to have things mapped out, and I think it helps Adeline since she knows what to expect.

Med containers and timers                                               

One of the hats Todd and I wear at home is “nurse,” and it’s our job to ensure Adeline has her meds on time. There are several chemo meds that are administered at home and it is imperative that she receive them on schedule. With some meds having directions like "take only on Friday, Saturday, and Sunday, or take 2 pills M/W/F, and 1.5 pills the other days," we definitely need something to keep us on track. We set alarms on our phones for all meds that must be taken on schedule, and start the week by filling her pill container with everything she needs for the week. This system has only led to one missed dose of her antibiotic, the first weekend we were home and newly diagnosed!

Shower seat and hand-held shower head                        

This is probably another one of those little griefs. Depending on where she is in a chemo cycle, it can be very difficult for Adeline to stand in the shower. That is a freedom I did not want to take away from her. So, we found a shower seat and hand held shower head combo that has given her that freedom back. And with the “Alexa” in her bathroom, I don’t have to worry about not hearing her if she needs my help.

Port access shirts                                                               

This one we figured out after her first in clinic chemo treatment. To access her port for treatment, she was having to undress at least part way. We wanted her to feel as comfortable as possible with this process, and one of the nurses mentioned that some patients wear port access shirts. These shirts zip and unzip so that her port can be accessed easily. We got four shirts and then put some of her favorite sayings on them in vinyl. 

Emesis bags galore

One thing that we can’t have enough of is emesis bags. I stashed these little green bags everywhere when I was pregnant with Adeline and suffered from hyperemesis, and now we’re back full-circle. We have them in A’s room, in my car, in Todd’s car, in Adeline’s chemo bag, in my backpack, and pretty much anywhere else where she might need it. Too many times, I’ve looked in her room to see her working on school with an emesis bag close by.

There are many other little ways that we have adapted to life with cancer, ways we've found to say, "This is our life." And as I was writing, I realized that I'm writing from a place of privilege. How lucky are we to have the resources and support to find all these little ways that make our life manageable?! How lucky are we that we can afford these things that make her life a tiny bit easier?! Maybe lucky isn't the right word. Nothing about cancer is "lucky." In fact, I often tell Adeline that it was just shit luck that led us down this road. But we are grateful that we have found these ways to manage AND that we have the resources to do so. Yes, "This is our life?!" and "This is our life." All at once.