The first five weeks after Mathew was diagnosed with Stage 4 Desmoplastic Small Round Cell Sarcoma,
I was in typical caregiver mode, all the focus was on getting the medical information and seeing that everything was being done, all with the goal of getting to the other side, for Mathew to be cancer free and moving on with his life. But somewhere, right now I don’t recall exactly at what point, I realized that this was our lives. That the time we spent in hospital rooms, or waiting rooms or in the car traveling back and forth was our lives, our time together, a chance to make memories. I was in constant caregiver/warrior mode and at the same time, I learned to be in each moment with Mathew. We spent a lot of time talking. Talking about his wishes for end of life and his funeral. His observations on Bob Dylan’s lyrics. Ways to work around the neuropathy in his hands. That may be why this time is so vivid to me still.
Many things, other than medical care went on during this time. Many of them were small things. Small daily routines, routines when we were at Moffit or at home.
What types of candy Mathew liked to help with ‘chemo palette’. Hard spree and cinnamon discs.
The type of donut he wanted from Dunkin Donuts when I was on my way in from Dade City and stopped for coffee. Strawberry frosting!
The music he listened to. The music that stayed with me. This journey has a soundtrack. Even the ringtone he had on his phone. “Simple Math” by Manchester Orchestra. When I hear that song I am flooded with memories.
Mathew’s favorite meals I loved making for him. Spaghetti was one of them.
Little sayings we had.
Sounds other than music or spoken words. I suppose I am a bit OCD or something because I can fixate on the way something feels, patterns or sounds. One of the sounds I used to listen to, was the sound the tubing or caps on the IV lines made when attached or changed out.
Every sense was involved. That’s how life should be. I want to touch on these because everything was part of the journey and our memories. My memories.
For myself, one of the things was the gift shop in the main lobby. It was small compared to most hospital gift shops, but I think it was the most interesting one I have ever been to. And I have been in quite a few hospitals.
One of the things I liked looking at were the handbags. I’m not much of a shopper or fashionista. But the handbags were beautiful. I even took some pictures and sent to my friend Sandra. They are also pricey, at least for me. I used to think, that when Mathew was better and through with chemo I would treat myself to one of those handbags. And the first few stays at Moffitt, I would go in and make a choice from the always changing inventory of handbags. It gave me the same feeling as pouring over a favorite catalog and first marking off all the items I would like and then with each go through, paring down to just the best ones.
A few times, I bought candy for myself and Mathew, or a toiletry I needed and once I bought a Get Well card for Mat, one with a cat on it of course. But as the months passed my interest in the beautiful handbags diminished and eventually, I knew there would be no victory treats of celebrations for Mathew and so many things that used to be important or interesting lost their luster as far as I was concerned. I still feel that way, not too much is important really. Something that has no importance, such as shopping at the mall for things we don’t need can have a lot of meaning if you are doing that shopping with someone you love because that is what is important.
Those handbags are something I haven’t thought about much in the past few years, but working on this blog brought them to mind. So many small memories and events are woven into the entire journey.
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