Waiting Game or Just Living?

So, you were diagnosed with cancer and then underwent a course of treatment. For J, treatment included surgery and chemotherapy and for many other cancer patients it can also include radiation or immunotherapy. Whichever it was, your treatment is now complete, and other than following a super healthy anti-cancer (pro life) diet, which may or may not have been part of your before cancer diagnosis  (BCD) life, you are back at it. At life, that is. Back at work, back at taking care of the kids, back at volunteering in your community, back at reading novels instead of only anti- cancer books, back at keeping up with the news, back at whatever it was you were doing BCD. You are living your life. It may be a new and richer life in many ways due to your unexpected detour into the cancer world, but, if you’re fortunate, it still largely ressembles your BCD routine. For many cancer patients (like J) and their spouses (like me), we often dreamed of our old routine back when J was undergoing treatment. There’s something oddly comforting about a routine, even if you’re a spontaneous person like me. It’s kinda’ like a school uniform. You may not like the uniform that much, but having to wear one sure simplifies your life by taking the decision-making out of the “what to wear” column.

During chemotherapy, not only did J have to shuttle back and forth to the doctor’s office more than he liked, he also needed more naps during the day and more sleep at night, and I’ll admit that sometimes I was more exhausted than he was–from the emotional toll rather than a physical one–but, either way, we were both worn out and craved our regular old suburban life routine. Oh, I can’t wait to get back to “normal”, we’d say to each other as we crawled into bed.

Though we looked forward to getting back to our old routine, we also found that we settled into a new routine that was centered around chemotherapy treatments. We determined when J’s energy level would be at its lowest and when it would be at its highest during a typical chemotherapy round, and learned to plan activities around those as much as possible. J’s treatments were on Thursdays from 11:00am-3:00pm, followed by a visit from the in-home nurse who would administer his “slow drip” chemo that would last 47 hours, which was then (after the first few rounds of chemo, due to low white blood cell counts) followed by a dose of Neulasta. Think of Neulasta as a self-driving car, only the car is on your arm and sits in park for 24 hours before it blinks and makes a little noise to alert you to the fact that it’s going into its self-driving mode. Honestly, it’s a creepy white little robot that injects you with its venom. I’d have to read the label again to recall exactly what’s in Neulasta, but I’m pretty sure it’s vile! I’m the “all-organic” girl, but I couldn’t exactly wear that proud moniker during J’s chemo treatments, now could I? But anyway, we found that J’s energy was at its nadir on Sundays. He still had the energy to go to church most weeks, but needed longer naps and an earlier bedtime if he was going to get to work on time the next morning! And so he did.

After 9 months of treatments, J had one month completely “off” before undergoing a second surgery–a laproscopic HIPEC treatment–that kept him in the hospital for a couple of days and required several weeks of recovery before he felt back to (relative) normal. All in all, J was essentially in treatment for 10 months. June and July were the big recovery months, August was our big travel month, and September was the month we–you guessed it–went back to our normal routine! Or, as I prefer to phrase it, we bounced forward to a new normal!

Here we remain, living in our new normal in our after cancer diagnosis (ACD) life. Life as we knew it BCD, spiced up with a fuller awareness of our mortality and the preciousness–or precariousness–of our normal family life and its un-noteworthy, but very meaningful, routines.

When someone offhandly says to me “Oh, is Jeff still in remission?”, I cringe. Well, is he? I mean, how do I know? If he never experiences a recurrence, will his whole long life be referred to as a remission?  No, I think his obituary (sorry, don’t mean to sound morbid) would say “J was diagnosed with small intestinal cancer in 2015, and went on to live a long full life to the ripe age of 135.” The key word being “live”.  J is living; I am living; we are living in the full expectation that our life will be rich and full and long and are no more defined by his bout with cancer than we were BCD. Or are we?

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For our family, if it’s February or March, it’s Girl Scout cookie-selling time!

That’s our normal!

What’s yours?


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