ALI UPDATES

Silence is Golden

May 6, 2011

You might have noticed the quiet. We’ve been too busy living to write about this cancer beast. Instead, we shut it all down and went silent. It has felt wonderful to pretend that it’s gone. It’s not. The pathology report indeed found specs of the vicious thing inside her lymph nodes. That threw a wrench in the works and stopped the machine for a while so that we could get our heads around what this news might mean. Second opinions on treatment plans? More chemo, no chemo? More surgery, no surgery? Radiation, no radiation??? So while the experts ponder the path to health and a margins-clear, cancer clean, cancer free life for Ali, she has chosen to begin the second phase of chemo, starting next Tuesday. Unless there is a coming together of the planets, and experts, indicating a change in the prognosis, this blast of chemicals will be administered once a week for 12 weeks. UGH.

But that is next Tuesday. We have from now until then to live like we’re all cancer free! Ali’s off to NYC to visit a dear friend and pig out on Maine lobster! We’re off to celebrate Mother’s Day with Gabby and Drew in NH. Tuesday will come soon enough. Today we’re going to pretend it’s a hundred years away and just live in the moment! Denial, yes. But it works! A silent reprieve.

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On The Mend

April 10, 2011

All our prayers were answered –thank you!. The cancer is gone, and it seems it didn’t travel far while she had it. This was the best news we’ve had in months! She’s recovering slowly. It’s an up and down cycle, with fever sneaking in the back door, along with a headache – slamming nausea. But she’s alive and cancerless! And she’ll get past this soon. Her sister was even hoping to sneak her outside at the hospital to catch a few rays. Sunshine is good for the soul.

Our special thanks this week go to all the hospital staff– the dynamic surgical duo of Dr. Nina Edwards and Dr. Sara Holland— and all the fabulous York Hospital staff—who have given her the very best of care, and especially those whose warmth enveloped us as we watched them wheel her away. Meltdown—we had a complete meltdown, perhaps because we finally faced the stark reality of it all. This was our baby, our first born, our beautiful baby girl. As parents you just want to scream and tell them to bring her back. But of course, that would mean that the cancer had won, and none of us were going to let that happen. So the staff made it as gentle as possible for us to let her go.

Now the healing begins. She needs you now dear friends. An e-mail, a card (PO Box 605, York, ME 03909), a funny You Tube link, and for those friends who are close to her, an hour or two bedside when she gets home?

And then the celebration party on May 20th!! That’s our next goal…and the start of summer….we’ll get there. She’ll get there.

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Say a Collective Prayer

April 8, 2011

“By 6pm tonight the cancer will be gone!”– Ali’s brave words as she faces surgery this morning. Pray pray and pray some more please.
Ali’s Mom & Dad

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A Complete 180

March 28, 2011

Ali shifted gears this week in a major way—she has decided to rid herself of the demon cancer by having the surgery now after consultations with all the players involved. Her thinking is that she wants to be fully healed by summer so she can sail again and the prospect of being able to do that is the brass ring she’s reaching for. So chemo has ended for now. It will recommence three weeks after surgery. In the meantime, she gets to feel good for few weeks and she’s enjoying the respite. We spent the day in NH with her sister and nephew enjoying the warm smells and tastes of freshly made maple syrup! We went to Benton’s Sugar Shack, a rustic old building jammed with families out enjoying the first harvest of the year. We waited an hour for a table, but it was certainly worth the wait! It was nice to be free of the heavy pressure of sickness. It almost seemed like normal. So for now, we’re all taking a breather, as we get ready and rested for what lies ahead. And after the rough seas, the fair winds of summer as promised!

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Kleenex Anyone?

March 13, 2011

Sorry for the delay in adding to this blog. Life at the Goodwin household has been full of activity and managing all of the parts has been a challenge. The smell of food cooking has upset Ali’s stomach, so we’ve been trying to choose foods everyday that appeal to her. Once she has fixated on a “flavor” she has to have it! Yesterday we bought spanikopita and croissants! Go figure! She is much better today.

Last Tuesday the party was in Chemo Room 4. Friends Amy, Kierstyn, and Holly had kept her laughing while the juices poured through her veins. I came upon the celebration just in time to hear an explosion of cheers and clapping. The nurse had just unplugged her port from the last dose of the red poison. This was the “UP” moment — we knew were headed for the “DOWN” shortly. It all went to hell in a hand basket the next day after she received her last shot of Nuelaste–the drug they give her to build up her white blood cell count. She was so sick after that — we were very worried. Up until that point, she had kept a stiff upper lip, but the reactions to these drugs and the on-set of a terrible sinus infection took her to the deepest depths yet. Nauseous, extremely fatigued, barely able to get out of bed — so sick. So frustrated. So ready to chuck the whole thing.

She made it through, but I’m not sure I would have been so brave. I’m pretty sure by that point I’d have said “ENOUGH!” and MEANT IT!. But she knows she can’t — she has to endure all of this. The cancer has to be banished, and this is the way it’s done. To any and all of you reading this who have survived this terrible ordeal — BRAVO! What courage it must have taken to get through it. You are heroes and heroines all.

Once again, on behalf of the Goodwin family, thank you to everyone — those we know and those we don’t — who are making Ali’s journey with her, and for your generous contributions of time, talent and resources. Ali is lucky and blessed. So are we.

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Gone With The Wind

February 13, 2011
Gone with the Wind. All of it. Every strawberry blonde lock of hair, GONE. For me, this was the hardest thing to face so far. I had to shave Ali’s head bald. What is it about hair that makes it so difficult to lose? The color, the way it shapes your face, what? But she is as gorgeous without it as she was with it. By the end, we turned the sobbing tears into fits of laughter and then exclamations of amazement, that she still looked so beautiful! The truth–it is her smile and her blue eyes that shape her face. And they were still there when it was done! And she’s still here, and that’s what this chemo is all about—to keep her here! The hair will grow back. And another truth—we can make it through anything—even this hard, hard task.

Ali is managing her reactions to the chemicals much better in this second round. She knows when to call it a day. Infection has become an issue. She took a quick trip to the emergency room with an eye full of conjunctivitis Friday night. Friends and family continue to give her strength. Today’s mission—a walk on the beach with her dog Asher and her 5 year old nephew Drew. It’s Sunday…a day of rest. And so like Scarlet O’Hara, we’ll worry about the rest tomorrow….

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Downward Dog

January 29, 2011
It had her in it’s clenches by Thursday — a full day in bed, asleep, no appetite. Tingly, sizzling skin. Aching bones. Nausea. It ran the gamut. Friday morning, a short burst of energy prompted her to make breakfast for the family, and then she announced that she’d take a shower and be off to work. By end of shower, the plan had changed. Too tired to drive, I agreed to pick her up after work and run some errands, get some air, change the scenery. I knew she was under its spell when she begged me to pull into MickyD’s for fries and a cheeseburger! Yoga Ali — what have they done to you?? Now she was starving — steroids — ugh! But cheeseburgers sounded delicious and quick, so we made a stop at The Meat House for some great ground round, and then wound our way back home. She stood over me as the burgers sizzled, and scoffed hers down without ceremony. That calorie overload sent her straight to her PJ’s and bed!

By Saturday she was bouncing back, but still skittish that the fatigue might hit at any time. The arrival of her nephew late in the day caused her to rally, and she made plans to go to the Press Room with her sister to hear a great band and meet up with a dear friend. But as the clock ticked on toward nine, the reality that she didn’t have the strength to go sunk in. She reluctantly made her apologies, and again, crashed in bed.

Today has been much better, so we’re beginning to understand the ebb and flow of the chemo. By mid-week, she should have more energy and accomplish more in a day. That alone will make her feel better. So, we’ll enjoy the UP time, before we have to face the next downward spiral a week from Tuesday.

Our thanks to all for your support and encouragement, for your donations to the cause and your love. It is the pillow of comfort on which we all rest our heads at night.

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Chemo Rock Star

January 25, 2011
Day 1 of Chemo: Rock star! Except for the first few minutes when her one foe appeared at the entry door of the chemo center wearing a nurse’s uniform OMG, she handled it with poise and humor—who would expect less? It was 5.5 hours of bag after bag of creepy stuff, and lots of trips to the rest room. The only reaction came at the very end when she began to feel a tingling, sizzling feeling in her face, and in her fingers, which had turned a scarlet red (from the deadly “red juice”). It only lasted 15 minutes or so, but it was proof positive that indeed, the dye was cast. Fatigued, perhaps more from the anticipation than the actual procedure, she’s now resting in bed (4pm). There was a continuous parade of people from art therapists (no, really!) to the lunch lady and lots of others in between. Neither of us were able to get any computer work done as we had planned. She did, however, leave her oncologist in fits of laughter when she threatened to pee red juice into the new fallen snow—and then TAKE A PICTURE OF IT!!! (Her mother put a stop to that behavior right out of the gate! There will be no peeing red in the snow at Dave’s Plaza on my watch!) And so the long journey begins…