Attitude is everything when you’re fighting for your life. In the 11 months since I was diagnosed, I’ve worked hard to stay positive. Usually that includes finding something to laugh about every day and focusing on the here-and-now. After all, I can do absolutely nothing about the past, and the future is a crap shoot right now. So, I guess I shouldn’t be surprised that it was an innocent discussion about the future that caught me up hard and slammed me to my knees. But when it happened, I was wholly unprepared for the emotional gut punch that sent me reeling for weeks.
My husband and I were sitting with our financial planner, shuffling numbers around to ensure we’d be able to pay for my son’s impending college career. Periodically we go through our plan to make sure we have all of our needs covered. (All I can say is Thank God we bought that extra life insurance on me 5 years ago…) Anyway, the planner asked if we were still planning to work to age 65. That simple question set off klaxons in my head.
Sixty-five? That’s 14 years away. Will I be able to work til then? Will I even be here then? Suddenly I was looking full face into my very uncertain future. I’d glimpsed that monster several times during the previous months, but I was always careful to view it from the periphery — never straight on. Now, in the full glare of consciousness, the realization that my time here may be quite short hit full force. It’s one thing to babble about living in the moment, it’s another to actually accept that the moment may be all you have.
When we hit the car, I told my husband about my epiphany. He waved me off and told me I can’t let myself dwell on the negative. He was right, but I was now in the grip of the monster… and I couldn’t look away. A few weeks later, I was in the hospital with my first bout of pneumonia. My body didn’t feel right… my recovery was slow and the reality of my disease kept glaring at me.
I tried talking about the monster with a few others, but I quickly realized it was even more terrifying for them. Right now my family and friends are taking their cues from me. If I’m freaked out about my “future”, well…. So I turned to the only other group I could think of, the PF community on Facebook. As always, they came through for me. But what I found most interesting was how few of them really thought about the future. They are a group that truly lives in the moment. The gist of their advice was to make my plans — sign an advance directive, factor mounting medical expenses into our financial plan — and then focus on enjoying what I can while I can.
It’s good, sound advice. But as I head into the third month of my medical leave, and approach the one-year anniversary of my diagnosis, I find myself mired in thoughts of what’s to come. A year ago, I could sit without supplemental oxygen and needed just 3 LPM when I was up moving around. I didn’t use it at all at work, other than walking to and from the parking lot. Now, I use twice that amount sitting, and pump my Os to 8-10 LPM moving around. I’ve been in the hospital twice in the past 6 months. Making dinner leaves me feeling achy and breathless. What’s next?
Recently I read a book called The Long Goodbye by Meghan O’Rourke, a memoir about a woman who lost her mother to cancer. I read it from the dual perspective of a daughter worried about losing my own mother, and a mother worried about not having enough time to give my children all they deserve before I depart. At first I thought about keeping journal for them… but then I realized that’s a ridiculous idea. My kids are teens — they need me, not stilted words of wisdom to refer to once I’m gone. So, I am concentrating on being as present for them as I can during the moments we spend together. That’s what they’ll keep with them anyway — they’ll remember the times we rolled around on the floor together, laughing uproariously at a stupid joke no one else thought was funny. They’ll remember the feel of the pillow on their cheek, the warmth of my hand on their back as we lay talking about what happened that day. They’ll remember how deeply they are loved and how completely they are cherished, because that’s what I remember when I think of my mom. Life is in the moments, and those moments are more precious that ever.
And so after reading books, sifting through comments and listening to advice from a range of sources, I realize my kids are my “future”. My love fills their hearts, my quirky sense of humor inhabits their smiles, my courage strengthens their resolve to face each day. I don’t know how much time I have, but I do know the only way to make it count for something is to make it count for them.
TIP: Supplemental oxygen can be really hard on the mucous membranes of the nose and sinuses. I’ve discovered that Ayr nasal saline gel really helps. Apply it with a Q-tip to the inside of your nose to help keep things moisturized and avoid nose bleeds. Ayr nasal mist helps relieve sinus headaches brought on by oxygen use as well.