Hi Folks -
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Happy New Year!!
I'm so looking forward to 2011. That noise in the background is my *huge* sigh of relief to get the most recent PET scan results. The docs had predicted from the beginning that this tumor (aka "the weasel") would be very chemo-reactive, and it was. During my radiation treatments I actually got to watch the tumor shrink daily.
However, the dehydration and kidney failure that I suffered as a reaction to the antibiotic therapy for my lung infection made it impossible for the oncologists to give me my last three chemo treatments. So, of course, it was easy for me to imagine that those final three treatments were essential and that this PET scan, administered 3 months after my last chemo treatment, was going to reveal that we had missed something.
Whew! No. Cancer lights up the PET scan, and mine was dark as a dungeon - no sign of cancer anywhere.
Woo hoo! Huzzah!
They'll repeat the PET scan every three months for the next two years (my next one is April 7th). This is the scary part: 80% of small cell lung cancer patients who have made it as far as I have and as well as I have will still get a recurrence of the cancer within two years -- and the new tumors will not respond to treatment. So, it'll really be October of 2012 before I can say I've taken a big step out of the woods. Most oncology folks will say that you're not cured until you've gone 5 years with clear PET scans.
Also complicating my recovery is the nasty MAC infection in my lungs. MAC is rare. It's a close cousin of TB. Only 1 in 100,000 people in the US get MAC. The MAC bacteria is everywhere.... in soil, in water, in the air. The only folks who seem to contract an infection from it are those with sharply compromised immune systems - folks with AIDS or cancer and/or undergoing chemotherapy ... and even then, very few of them will contract MAC. Just my bad luck, I guess. MAC "cavitates" (i.e. puts holes in) your lungs. The only treatment is 18 months of daily big doses of really strong antibiotics generally reserved for the treatment of leprosy and TB. My body is FINALLY adjusting some to this intensive antibiotic regimen. The probiotic and homeopathic supplements that Pat Humphries and others have recommended are doing me some good, too. The MAC and/or the antibiotics leave me with a bad stomach, extreme fatigue, and shortness of breath. It looks like the MAC may have also invaded my heart lining and caused mild pericarditis (water in the sac surrounding the heart). We're doing more tests on that in the coming weeks.
Sooooooo, I wish I were out of the woods and ready to start booking work, but it looks like I'm going to be pretty limited in what I can do for the indefinite future. Thanks to your overwhelming generosity, money is not one of my worries right now. Truth be told, I've got more money in the bank now than I have at any point in the last ten years. But since I don't have any income, I'll be running through this nest egg at a brisk clip until I'm able to return to work.
This is a hell of a time to be riding the pine, stuck on the sidelines .... Watching this crazy corporate Congress, the inexorable progression of the war in Afghanistan, the rising unemployment and the widening gap between the rich and the poor, not to mention passing the 50 million mark in the uninsured non-elderly population - it certainly has me wishing I could be out there on the frontlines.
These next several months will instead be a time for me to go through my papers and organize them. I hope it's a time for me to continue the research and writing about my grandfather's life, too. And I hope to emerge from this enforced down-time with a new CD of new songs. We'll see. I get tired just looking at that list.
I am very much hoping to get around to personally acknowledging all of your generosity and thoughtfulness.
Another thing I've been doing is participating in a project that local historian Pat Ulbrich is doing on the history of the women's movement in Pittsburgh. So far we've done 4 hours of video interviews with more to come. And my friend Maria Skoczylas is doing a similar project for her sociology thesis. We spent two hours today doing an interview on feminism in Pittsburgh.
It's been fun to do some of this introspective stuff since I've spent the last 10 or 15 years running from one event to the next without much time to process or reflect.
Many of my labor friends will get a kick out of this news: On January 22nd, Pennsylvania Progressives will present me with the Anna Burger Lifetime Achievement Award. Jesse Jackson will be the keynote speaker at the banquet, to be held at the Sheraton at Station Square. More info at: http://www.paprogressivesummit.org/
My hair has finally started growing. I'm very excited about that.
Please keep your cards & letters & emails coming my way. I miss you all so much, and I love hearing from you. I don't know what I would have done over the last five months without you. And what sweet sacrifices, thoughtful gestures and tender loving care my husband, my kids, my sister, my family and friends here in Pittsburgh have lavished on me ... Despite the cancer and the MAC, I can honestly say that I am a very very very fortunate person.
Love and solidarity,
To send a donation to help underwrite my paid sick days' fund, click on the Paypal "Donate" button on the right, or send a check to:
2240 Milligan Avenue
Pittsburgh, PA 15218