Cancer is my day job

And sometimes I just have to call in sick.

I take this blog seriously; so much so, that even though there is no time card to punch and no pay check at the end of the month, I really feel bad when I don’t show up.

Almost three weeks ago David and I were guests at the Xalkori launch. It was a magical couple of days and I really need to get a post up about it. I will, later this week. November is also Lung Cancer Awareness month and I sort of feel as If I should be writing every single day. If not now, when?

Truth is, I’m still digging out from a bit of a natural disaster/existential crisis.

On Saturday, October 29th, David and I accompanied Peter to the MIT campus for a Camp Kesum reunion. While Pete partied, we two grown-ups happily wandered the halls, where even the bulletin boards are super smart. And smiling down from one of them was a familiar face; my hero, Dr. Alice Shaw!

Peter had a great time and when the festivities wrapped up we headed to Flour for some yummy roast beef sandwiches to go. It was raining pretty hard and as we headed north, it turned to snow. Arriving home a little after six, the lights were already starting to flicker. At seven, they went out for good.

We are no strangers to power outages. They were commonplace growing up in Colorado, and I have fond memories of my mom lighting kerosene lamps. Once, when living in California, we had no power for four days. But that was a temperate climate, and we still had water.

This storm was different. On Sunday morning we awakened to a frigid house. An apple tree lay sideways across the patio and sizable branches were down all over the yard.

We own a noisy gasoline fueled generator which was wheeled to the breezeway and awkwardly accessed by a utility cord through an open door with towels and rags stuffed in the cracks. It ran a few hours at a time to power the heater in Pete’s 55 gallon aquarium (also swaddled in blankets) as well as a freezer in the garage. All the food from the fridge was stowed in a snowbank, and we wore our coats inside and took turns warming up in front of the fireplace. On Monday I had to go to Boston for labwork, and the last of the water from our electric pump powered well was gone, so I melted some snow (fortunately our gas stove could still be lit with a match) for a sponge bath.

By noon Tuesday it all sorta went to hell. Several leaks had sprung in the ceiling and smoke was seeping from  some heretofore undiscovered crack in the chimney. Already chilled to the bone, surrounded by piles of unwashed dishes and laundry, I now had to worry about the air quality.

I stood there silently weeping and then I played the C card.

Evidently many people had bitten the bullet and secured a hotel much earlier, as the closest available room was an hour away in Amesbury, Massachusetts. I hurriedly packed and the guys came too, for a shower and a hot meal. Clean, I hightailed it into Boston for the Shine A Light vigil at the Prudential Center.

It was, as always, a powerful yet bittersweet evening.

The next morning I had the runs. And an itchy rash of unknown origin (contact dermatitis from the bleach in the hotel sheets? Trial drug related?). I was miserable but also so very glad to be warm and with access to a fully functional bathroom.

On Wednesday David and Peter again drove an hour for showers and we grabbed dinner at the Friendly’s next door.

It turned out to be a very meaningful evening (I’m getting to the existential crisis part now).

The filter on the aquarium had gone kaput, and Pete was discussing what he felt to be the urgent need for replacement (to the tune of about $160).

Money has always been a potential source of tension in our marriage. I left the salaried workforce before Pete’s birth, and in truth my annual contribution was never great. My husband feels a lot of pressure as the sole breadwinner and occasional caretaker, and I harbor some resentment regarding my own perceived financial inequality in this partnership. I would like more than anything to shift the balance of power, but my prospects are not promising at this point in life.

We quibble about small purchases, and any big ticket item requires great negotiation. A GPS has been on my personal wish list for some time. Several weeks ago, after getting hopelessly lost on the way to my friend Melinda’s house, she lent me her Garmin. I love it. It has upped my day to day quality of life more than I could have imagined. No longer am I lost or lonely enroute, as the soothing voice ‘recalculates’ any wrong turn. I really would like one of my own. I would go so far as to say I need one.

When I brought this up (again; I’ve been dropping hints going on a year now) my husband responded jokingly, ” if you’re a good girl, maybe someday you’ll get one.” I did not see the humor in this comment. And then he added, “and as for the filter, Pete has his own money”.

It’s true. We pay Pete for jobs around the house. David’s boss pays David. I, however, remain uncompensated.

On a roll now, I mentioned my perception that perhaps the welfare of the aquarium had been taken more seriously than my own. Pete protested that the fish were very vulnerable to changes in temperature and water quality, that they could die within hours and that he really cared for his fish. It was not admirable, but too easy to do:  I drew a direct metaphor between those fish and myself, pointing out that I too was vulnerable to changes in the environment, was certainly not impervious to mortality and, as his mother, was hopefully cared for.

Cancer is often referred to as the elephant in the room. In my family, it has become more like the mouse; always there, but generally unnoticed. Because I neither look nor act like someone who is sick; it is rather easy for my family to take my own physical challenges very much for granted. I, however, am constantly aware of how close to a physical edge I am. It was not that big of deal for a fourteen year old boy and healthy middle aged man to forgo heat and water; to relieve themselves in the woods and to warm themselves in front of a smoky fire. And our golden retriever was totally on board with the whole camping-in-the-house experience. Thanks to the generator, the frozen food stayed frozen and the fish got along swimmingly. For me though, the entire experience was more than a bit taxing. And, as I explained to them that evening, didn’t need to happen. That there were ready solutions to (some) of my problems; that it was possible to keep me warm and comfortable and hopefully healthy. And that with a little help, (thanks Melinda) I could even figure out where I was going.

It was a difficult conversation, but a necessary one. Sweet Pete reached across the table and took my hands. As we left the restaurant, they both hugged me goodnight and told me they loved me.

I checked out of the hotel the following morning and we had power again by the afternoon. That was Thursday. Friday morning Alice called to tell me Evan had died on Wednesday. So many emotions; anger, hurt, grief, humility, perspective. And ultimately, gratitude for every single moment; no matter how difficult.

PS:  Happy 27th birthday Jemesii! Love you so (and still can’t believe you’re 27!)