Celebrating Life’s Big Moments

May and June were jam-packed with events this year. When I think about what happened, I realize it illustrates the tension of being the “filling” for a family’s “sandwich” (that is, the person supporting parents as well as a child with a disability).

In early May, my Mother seemed very run down. She’s on her second line of chemo drugs for ovarian cancer. The first-line drugs were successful, but did not create a remission for her. She now is in the midst of using Doxil. This drug allows her hair to grow back, which has been fun. But it seemed to suck more life out of her – or so we thought.

For the first month, her energy decreased, and after the second treatment, the decline was almost daily. She had a recurring fever. She tells me when she told the Doctor’s nurse about it, the answer was it was a side effect of the chemo. But she had a fever every day for six weeks! It would spike two or three times a day. Blood cultures (which she didn’t remember they took), did not reveal anything, nor did a chest x-ray. However, when she could not complete a short sentence without gasping, I started pushing for her to go in. “No, no,” she’d tell me. “It’s just the chemo.” But that gut instinct of mine told me it was not.

Ryan Graduates from WillametteWith my Mother seemingly slipping away, we celebrated – with joyful and proud hearts – the graduation of our oldest son, her first-born grandson, Ryan.

He graduated from Willamette University with two degrees: Economics, and Rhetoric & Media Studies.

What a rush.

I’ve never felt more proud. When the bagpipes walked in, I felt a tug at my heart (I’m a sucker for ceremony) and just a few people back in the line of students…there he was. My baby. I don’t think he understands how incredulous I am that my child is so amazing.

Mom had hoped to attend the Open House we held, but could not. We visited later, so they could have some quality time. I kept thinking I was going to lose her soon, and it was breaking my heart.

After the festivities, she spiked a temperature of 104 a FINALLY agreed to go to the doctor.

We sat for hours, since this was an unscheduled visit. She declined visibly in the time we sat there. Each time a new person would come in to ask their usual questions, she would answer the same way I’ve heard her answer since we started down this road in July 2007. This forced me to begin to butt in and add information.

The conversation went like this:

Nurse: “Do you have fatigue?”

Mom: “Yes.”

Me: “She is much more fatigued than she has been for the past year!”

Nurse: “Do you have shortness of breath?”

Mom: “Yes.”

Me: “She can barely get three words out.
She has no lung power and if pushed, she would be gasping for breath!”

Nurse: “Are you exercising”?

Mom: “I do tai chi when I have the energy” (gasp)

Me: “She can’t walk the length of the house without being exhausted and short of breath.”

Nurse: “Do you have a fever?”

Mom: “Yes.”

Me: “EVERY day, more than once – here is a chart my father put together. They have been journaling her temperatures. It seems chronic to me.”

I love my Mother. In listening to her answers it was clear that she had no idea how bad she looked or that her condition was worse. She just thought it was all side effects of the chemo.

When the doctor came in, he asked her to get on the exam table to listen to her lungs. She looked so frail and unsteady…he offered to help her. She said, “It’s Ok, I can do it fine.”

::sigh:: We’re now working on how to be more descriptive.

He gave her out patient IV antibiotics and sent her to the hospital for an x-ray. In the two days since the last time she’d been there, she’d developed a pneumonia. He let her decide whether she wanted to go home with oral antibiotics or go to the hospital.

She chose home, of course.

And in the course of the next 24 hours, I had to say some of the hardest words I’ve ever said to someone I love. I needed my Mother – my precious, intelligent, strong-willed Mother – to understand that this was very serious. I wanted her in the hopsital. I heard myself say something I never thought I would need to say (it is so harsh!): “pneumonia will kill you before the cancer can.”

Meanwhile, I’m considering cancelling a two week speaking adventure because I’m afraid my Mom will die.

With those words on her mind, she agreed to go to the hospital when she spiked another 103 temperature. She wasn’t ready to die (thank goodness!). Best thing she’s done in months.

She stayed seven days, got four units of blood, 6 days of antibiotics, and oxygen. With all that, I keep asking, why did they not suggest this more strongly?

She was home for 5 days and we, once again, were celebrating a graduation – of sorts! Andy and Dominic Andy, our 19-year-old son who has Down syndrome, autism, and celiac disease, went through commencement from high school. Next year he will attend a transition program for 18-21 year-old students who have IEPs.

Andy is overwhelmed by experiences like this. It would be held at the Memorial Coliseum -a huge building that echoes. And he hates hats. Kinda important to wear the hat at commencement. So he and his teacher practiced and practiced (see photo).

Andy did graduate – the staff did a wonderful job of accommodating him. In the prep room he had his “A-HA” moment when he saw everyone else wearing the silly garb. “Wow, we ALL look stupid!” he seemed to say. For the second time in two weeks, I was filled with emotion – though we laughed until we cried from our nose-bleed section seats as they tried to convince him to sit looking foward (at nothing) rather than turning around to watch the graduates come in and sit all around him.

Two days later, with Mom feeling well, I left on my speaking tour for two weeks.

Just recalling all these emotions exhausts me. These events – health and life events – have sucked all the good and bad emotions from me for a while.

I am drained. Ye pleased by the outcome of all three major moments. Mom is stronger than she’s been iin months. And my heart is at peace. As hard as it was, and as tiring as it is to swing back and forth lke that, all is well.

And such is the life of an open-faced sandwich.

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About Joan

I am first, and foremost, the mother of two amazing young men. One of them has Down syndrome, Autism, Celiac Disease, and uses few words. I focus my work on providing support, training, and creating tools that will create quality lives, quality health, and connected community for him and his peers. It's true. We can all have a quality life, with quality health, and connected communities in which we thrive. Let's go on this walk together! You can learn more about me and my work at www.DownSyndrmeNutrition.com
This entry was posted in Disability-related, family and friends, General, ovarian cancer. Bookmark the permalink.

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