Episode 135: Dysfunctional at the Oncologists Office

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Transcript

Do you have moments when you realize you have a particular thing you do with your loved one that only makes sense to the two of you?

My husband had his first appointment with a new oncologist and we realized we might look a little dysfunctional. 

Let’s talk about when the back story takes too long to tell for it to make sense. 

We just recently moved to Chicago and as you might expect finding new doctors was a stressful process for me. If you’ve listened to some of my earlier episodes you’ll know that when my husband was diagnosed with cancer we had a quick separation of responsibilities. He took responsibility for staying healthy and fighting cancer. I took on the administrative duties necessary to get him to where he needed to go. In essence his cancer assistant. 

Since learning as much as I could about his cancer and in trying to be as informed as possible in the beginning was important to me I may have had more questions than others in my position at the time. As time went on and I carried around my moleskin notebook with all of his tumor sizes and lab work numbers written down I was quick to compare notes and follow up with any questions or issues we might have or see in the future. Mostly because he got cancer before MyCharts existed and I just keep doing it. Although being able to screenshot a graph of a specific blood test is pretty satisfying. 

My husband is a very intelligent person and quickly learned that he didn’t need to worry about knowing anything before going in… he had me. And why waste effort that could be devoted to something else. 

I have to be honest sometimes my quest to understand could have been overkill but I have also been able to ask question in real time in stead of having to go back home after an appointment and research things and then follow up 6 months later. It’s made our conversations much more effective and efficient. 

I knew about trials before we had the conversation about the possibility of having to consider those medications and have thankfully see some of them FDA approved as of late. I also know how people feel when they take them because I am part of groups that share these things. So I not only knew the drugs existed but what that would possibly mean for my husband’s quality of life. 

That also means that I do a lot of the talking in his appointments and the doctors very quickly fall into this arrangement with us with very little problem. My husband is always the one who decides what happens next and he trusts that if there is something he should know about and consider I’ll be able to tell him or help him figure out. 

He lives with cancer… I work for him to be able to do that. 

Now it’ been a while since we’ve switched doctors and I was especially nervous because the person we left behind when we moved was my most least favorite doctor we’ve ever had and cause me many times to fear his disease was not taken seriously because his cancer is not currently threatening his life. He wasn’t an exciting case to be given when his oncologist retired and that did not sit well with them. 

So having a little of that trauma I hoped for the best. 

I am very aware that the power dynamic between the two of us in doctors offices, at least at my husbands appointments, can be odd or off putting. So I went in planning to ease this new doctor into our world. 

It was a positive start when we got there. The staff was so warm and happy. It really felt comfortable to be there. But sometimes I feel the front staff has taken a “how to act happy for cancer patients” class before working there. There was nothing to worry about because the doctor mirrored what we felt from the nurses and front desk staff. 

We started with introductions. Then he started to ask us about just moving into the city. Then we worked our way into learning about my husbands health journey. That all went fine.

But then came the questions like, how many surgeries has he had, when did he have them, what were his last blood draw levels for specific tests and each time he was asked a question that needed a data driven answer he’d turn to me to ask. 

I have to be honest.. I kinda enjoyed watching him squirm a little. You see once we’ve been with a doctor  for a while they’ll ask him a question and then most times turn to look at me for an answer. Almost like he was the only one that can hear and I’m the only one that can speak. It was the perfect combination. 

But then the new doctor asked a very specific question and I pulled out my notebook and rattle off the tumor length or the historic change in cancer markers. 

The doctor took a pause and that’s when my husband says to him … yeah I’m focussed on not dying and she’s focussed on doing everything she can to make that happen. So if there are any specific questions or answers they will most likely come from her. 

We all had a little chuckle from it and the doctor understood but I realized that the way we worked things out in the very start, as a way to cope and try to find a way through what is still the scariest time of our lives and out of necessity become a strong team is the one picture that can show you the past decade of our lives. 

This dynamic between the two of us that in doctors offices can quite frankly look dysfunctional is what actually has kept us strong. 

The early identification and separate of responsibilities that happened instinctually and continued until we were able to name it. 

The team we became and the very easy give and take dancing around that doctor’s office with our words effortlessly. Each one of us knowing when it’s our turn to chime in because that was our wheelhouse. Leaving the doctor slightly confused. 

That’s us. 

It works. 

And as confusing as it may seem to someone outside of our team, as judgmental as someone can get with this arrangement that has carried us for all these years it doesn’t matter… it’s what makes us strong. 

Whatever makes you stronger as a caregiver and in your connection with the person you care for… do it! 

Wether it’s you being the information person and them just striving to live. 

If it’s how you always cook and they always wash the dishes. 

If it’s how on ice cream trips you and your mom can’t commit to one flavor so you both share. 

I don’t care what it is… do it. 

The things that make us… us doesn’t have to make sense to anyone else but the two of you. We spend so much time focussed on fighting to keep someone in our lives as long as possible how can we waste any of it by refraining from doing things that bring you and that person joy, connection, memories that we all need as fuel on the days that feel the hardest. 

Have that thing that no one will understand. 

Do those things that would take too long to explain to someone else. 

Love each other whole heartedly no matter how scary it can be. 

You won’t regret it. 

Thanks for listening.