“In doctor’s-office-lighting, I didn’t tell you I was scared That was the first time we were there … I just pretend it isn’t real I’ll paint the kitchen neon, I’ll brighten up the sky I know I’ll never get it, there’s not a day that I won’t try And I’ll say to you Ooh-ah, soon you’ll get better” – Jack Antonoff / Taylor Swift

ALS is terminal, there is no cure, no chance of survival. We were given 2-5 years. 

When Duane was diagnosed at the end of 2013 there were no treatments. There was 1 pill that could possibly extend his life by 3 months. The combination of the side effects and it being $1200 a month, he decided that the possibility of 3 more months was not worth it. There was scattered information about people living longer, but not much. We knew there was no cure on the horizon and nothing could save him. That was a scary reality.

But we were lucky.

We didn’t spend years in treatment, we didn’t have to “live” in a hospital. There weren’t endless surgeries, or medical trials.

We didn’t have glimmers of hope. When he had a good day we didn’t allow our minds to go to “he’s getting better”, “he’s going into remission” because it wasn’t possible. 

But we were lucky.

We were given the opportunity to live, live the life we wanted while we could, not dwell in the disease. We couldn’t be surprised by a bad test result, negative trial outcome or unexpected progression. 

We had such an amazing life. We lived on our boat, deep sea fished almost everyday, moved to Lake Havasu, Arizona (the place where we always said we would one day be snowbirds), attended 6 weeks of spring break, saw waterless boat races, moved back to San Diego… We had peace knowing we were living our best life possible. 

The last two years of Duane’s life were not easy. They were very hard, but we were able to focus on fun. As long as we kept his pain controlled with could do what we wanted. We fished, laughed and loved.

We were lucky. 

– xoxo Victoria 

 

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