NET cancer ‘Zebra Movement’
NET Cancer Awareness Day is tomorrow as I write this. This is the third year in a row the NET cancer community has picked one day to really try to get the rest of the country to focus on this nasty piece of work that is NET cancer. There is an effort to get the entire NET cancer zebra herd to come together in a series of events designed to draw attention to the disease.
…the fight to kill NET cancer is an everyday affair.
Walking with Jane had hoped to launch its second Press Package tomorrow as part of that operation. Cancer in several of its other guises has stomped the life out of that idea. We will aim for December 10, the two-year anniversary of Jane’s death, instead. That’s the problem with life sometimes: you can plan whatever you’d like, but someone gets sick or someone dies or a storm comes uninvited up the coast.
But we are still trying to get everyone to turn Facebook into a giant zebra herd by replacing their profile picture with a zebra-themed picture.
The double meaning of NET Cancer Day
NET Cancer Awareness Day falls each year on November 10. It is a date that is particularly hard for me. November 10 is the last day before the madness that was Jane’s death arrived. We went to bed that night believing the next day’s trip to Dana-Farber would be routine. We would drive to Boston, I would drop Jane off at the door, park the car, meet her in the lobby, and go upstairs. There we would check in, have her blood work done, see Jen Chan, get the monthly Sandostatin injection and head home. The only thing out of the ordinary was supposed to be a short meeting with a dietician.
There was nothing left to try.
But drawing blood was more difficult than usual and Jen was concerned about the amount of fluid in Jane’s abdomen. After Jane’s injection we met with the dietician–who was worried about Jane’s albumin level. When she left and Jane got up we discovered she was still leaking clear fluid from the injection site. I wanted to have someone check on that, but Jane just looked at me and said she just wanted to go home. She had that expression on her face that even I could not say “no” to.
NET cancer surgery preparations
The drive home took over four hours. The traffic was backed up for miles. And when we finally got home I had to carry her up the stairs for the first time. I called in sick to work. It was an in-service day, but even had it not been, I would not have left her alone.
The drive home took over four hours.
The phone rang the next morning. It was her heart surgeon. They wanted to schedule the heart surgery for Monday and wanted her there Sunday afternoon. Saturday, November 14, was the last night we slept in the same bed. We had said our “just-in-case” good-byes that afternoon. Sunday, I had to help her off the toilet before we left for Boston.
NET cancer’s heart damage
Had the surgery come even one day later, I do not think she would have made it to the operating table. The six-hour operation lasted 10 hours. The damage to valves in her heart was much greater than expected.
It is a date that is particularly hard for me.
But she was a trooper. She came out of the anesthesia two hours before the expected her to. The heart healed. But the carcinoid attacks kept coming, suppressing her breathing and her blood pressure. December 9 we both stopped fighting. There was nothing left to try. December 10, she died.
The empty space
I am in no mood for a zebra party tomorrow. I want to do something to raise lots of money and make a real difference. But these months from August through December are increasingly difficult. I never finish a to-do list and the tears spring too easily to my eyes.
NET Cancer Awareness Day is tomorrow
I lost a friend last week to brain cancer. His service is tomorrow. Either before or after I will visit Jane’s grave. I will think about the might-have-beens. Then I will come down the hill to the house we built together and begin again this work before me.
For the world, NET Cancer Awareness Day comes once a year. For some of us, though, the fight to kill NET cancer is an everyday affair.
