An onshore flow is washing over the Puget Sound this morning. The mocha-thick fog smells of shoreline and decaying leaves. Fall is wafting in, and it soon will be dark when I get up at 7 AM.
If you detect a bit of melancholy in my words, you’re right. My emotions are foggy. It’s been a week of highs and lows.
Yes, the highs outnumbered the lows. Friend and lung cancer advocate Tori Tomalia (who has the same type and stage of lung cancer as me) gave an inspiring and moving speech at a lung cancer event. Someone found my blog by googling “wonderful late stage cancer blogs.” A Facebook friend said my Stanford Medicine X speech on lung cancer stigma changed her life. And a new lung cancer drug received Breakthrough designation by the FDA for those with ALK-positive non-small cell LC.
But the down came late, and hard: another stage IV lung cancer patient with my genomic mutation (ROS1) died yesterday. Burton, a Harvard grad, was only 26. He didn’t even have time to marry his fiancée, Emily (who’s been blogging about Burton’s lung cancer since April).
Being part of lung cancer community that includes advanced and late stage patients means the community, however educated and motivated, will lose members. I’m almost numb to it by now. But I still feel something, even when the lost member is someone I’ve known only through Emily’s “ros1positive” blog.
For no logical reason, Burton’s death also makes me a bit anxious about my monthly blood work tomorrow. I’ve had so many blood draws over the past 3 years that I don’t really think about them. But now, for the first time, I’m wondering if the blood draw will hurt, or if the nurse will even be able to draw my blood. Last month my power port was seriously misbehaving, so I had to have the PET scan tracer and CT contrast injected into a vein on the flat inside of my left arm. The tracer injection was fine, but the pressured injection of contrast HURT. By the next day, I had a lumpy blood vessel at the injection site, and skin around the vein was angry red. A month later, that section of vein is more black than blue.
My port is misbehaving on most scan days now, and the fibrin sheath I’ve grown over the tip of my power port’s catheter is getting tougher and tougher to remove. It may be time to have my port replaced. Yes, it’s only minor surgery, but it means losing a day to the anesthetic and accepting considerable discomfort around the surgery site for a week or so.
Being good at growing a fibrin sheath is not a useful skill. I wish I could grow something over my emotions when yet another friend who has lung cancer dies.
Every death hits home for me, whether I knew the person or not. When the person is a 20 something, I suffer pangs of survivor guilt; why am I, in my 60s, surviving when that person, who had his/her whole life to live didn’t?
It is tough dealing with the losses for me too. The more involved I have become in advocacy the more women’s lives have become entwined with mine. Too many losses in the past 9 years.
A powerfully honest blog, Janet. Thinking of you and your lung cancer community. Sending blessings and hopes for a pain-free blood draw, as well as good news from the results.
Janet, thanks for the perspective, much of which we all share. I especially am hit hard by the young men and women struck by this illness. It just isn’t fair, for them, or any of us. But it is what it is and we have to keep moving forward, no matter what we are going through, whether it be treatment or the loss of another of our community. Take care.
My doctor didn’t give me a port. “Let’s see how thing’s go” he said. A trip to the lab requires a very experienced tech! When the contrast blows a vein, the scan is stopped, the area accessed and try again. I have a check list of instructions regarding the lump in my arm. So far I have nkt had to go to emergency.
Janet I hope your blood draw goes smoothly and painlessly! Claire
My love of my life only lived 18 weeks after diagnosis. I followed Emily’s blog. Terry died July 30, 2014. Nothing worked. My son is a cancer researcher at Moffitt Cancer Center. He works until midnight sometimes. Having his father die and watching his sharp decline has changed him. He is even more informed about the other side of cancer, the human side. It affected his whole staff. With dedicated workers like Sean we will find a cure. Janet, you are in my prayers. I know you are fighting a battle. Terry never gave up. He had hope until the very end. With love and hope, Bev
Thinking about you today and hoping your doctor’s appointment goes smoothly. Your activism has helped so many people.
I have broken down in to tears after hearing of the passing of an online cancer friend more than once. Sometimes I fear logging on in case someone else is near the end or already gone. But the courage and knowledge and sharing always brings me back. I hope your blood draw is painless and all systems are still a go. I enjoy your writing and all that you offer to other cancer patients.
So sorry to hear about the loss of Burton, especially so young. Hope and pray you get feeling stronger and better.