Dear Family, I'm sorry we were unable to make it to your recent family celebration. Hubby was sick again, and I chose to stay with him. When I told you that we could not make it because he was not feeling up to it, it seemed you were miffed that I would not attend without him. Listen. I work full time, and I take care of everything at our house. I spend a lot of time at work or working in the yard or cleaning the house, grocery shopping, cooking. Forgive me for choosing to stay by his side for some much needed one on one time instead of coming to the birthday BBQ. You had 30 guests, a myriad of germy (sorry) children, and I don’t like leaving him behind when he wishes he could have gone. We do understand, you are a young and busy family, I totally get it. And maybe someday, you will understand our situation. We had a different life BEFORE. BEFORE the diagnosis. BEFORE the treatments. BEFORE the chemo and infusions and radiation and bone marrow biopsies and weakened immune system and brittle bones. BEFORE we realized just how fragile life can become. He wasn't always sick. We used to go to every party, and were very often the last ones to leave. We attended christenings, birthday parties, first communions, anniversary parties, family holiday meals, weddings, graduations. We went out for date night to restaurants, movies, clubs, comedy shows. He ran and played with our kids, swam in the pool, coached little league and softball, went to football games and track meets and swim meets and dance recitals. We drove with our family cross country and saw museums, air shows, the Badlands, Mt. Rushmore, and more. But that was all BEFORE. Now, some days he feels fine. Great, even. We can run a couple errands or go out to lunch, maybe even join friends at Fenway for part of a Red Sox game (we rarely make it past the 5th inning). It’s almost normal. He's almost normal. WE are almost normal. He looks fine, and he is often told how great he looks. But sometimes he does not feel great. Or even good. Sometimes it is all he can do to get up and dressed. Sometimes this lasts only a day. Sometimes it lasts longer. And so we have had to adjust our lives to be very fluid because of it. Because the rest of our lives will be the AFTER. We often decline invitations right off the bat, because we know it will be too much for him. Too many stairs, a venue that is outside on what can be (for him) uneven and treacherous ground, too many small children in an enclosed space which could mean a germ attack on his almost non-existent immune system. Sometimes we accept an invitation only to have to cancel last minute because of his back pain, his stomach issues, or a sudden unexpected event that needs to be brought to his doctor’s attention. We rarely host events because should he feel unwell, which happens a lot, we would have to cancel. This is all part of our new normal, this AFTER crap. But most importantly, please know that part of it is that our priorities have changed. He is my best friend and the love of my life. I will not leave him behind on a day he feels lousy. BEFORE, yes, often I did attend things alone. BEFORE I was always rushing out to go here and there, cutting short our time together because there would always be another day together, right? But now, it is AFTER. And things are different. I will make sure Hubby knows that what I always say is true: I'd rather go nowhere with him than anywhere with anyone else. This is our happily ever AFTER. And I intend to be with him for as much time as we have left TOGETHER.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.