Back on line

I've been off blogging for the past two weeks. Between recovering from the blood transfusion and getting ready for the Pfizer re-visit of Story Half Told, things have been really busy.

About a month ago a Pfizer representative contacted me again to say that they wanted to revisit we five women from last summer's photo shoots. So sadly, Holley Kitchen died in January at age 42, but her husband and young kids were willing to participate in a follow up on life without that amazing woman. I was willing, and I believe Carol, Jen and Khadijah were also. That makes an update on all five of us. It'll be done at a slower pace than this hectic summer when they tried to get all of us during the same month.

Timing is everything. John Frazier, the guy in charge of the PR team, was able to come to Seattle last week and so was Angelo Merendino, the photographer who will shoot all of us this time. We spent Saturday night through Tuesday evening together:

Dinner to get to know one another (at Barolo, a great Italian place downtown);

Brunch with T and S, our friends since I joined Radost Folk Ensemble, who just happen to share the same wedding anniversary date with us, which we've never celebrated together before;

A long talk into Angelo's camera to record some ideas and thoughts on these experiences, my life with metastatic cancer, etc.;

Labs drawn by the Amazing and Wonderful Nurse Jacque;

Lunch at Cafe Presse, my favorite place on Capitol Hill with the best fries ever;

A lovely tea party at J's home, with many of the friends who've taken me to chemo, brought meals, and walked dogs when Rik and I needed help;

A great visit with Rabbi Borodin, which included a review of part of the Yizkor service which we posed for the camera;

Lunch at the Ravenna's Varsity Restaurant (more eggs with hollandaise sauce);

And an appointment with Dr Goldberg, at which Angelo was like a fly on the wall. Dr G and I talked freely.

Lastly, Ang took some photos of Rik and I. First we tried to get me into my wedding gown, which would have fit if we could've unzipped the whole thing but the zipper got caught at the waist and no one could have shouldered into it. I was reminded of my parents' 25th anniversary (I was 15, Susan was 13) and their friends made Mom get into her wedding dress, the dress we used to play in, all stained and torn, for  a mock remarriage ceremony (she wore a bagel as a ring). After the party i the wee hours, we four gathered in their bedroom and my mother was shouting to my dad, "Just cut it off me!" (It must have been tight, hot and uncomfortable.) And of course my dad was trying to be patient and replying to Mom, "Wait, I've almost got it." This was with the original six inch zipper. I'm so glad K remade the bodice for me with a twelve inch zipper, but it still didn't help to have had the dress sit in a box for 21 years.

So I held the dress over my clothing, Rik took up the train, and he wore the veil. It was cute. I hope.

We went outdoors to take more photos in the back and side yards. Then we all trooped back in to warm up and Ang and I recorded more about the past few days. These two recordings will give context to the photos when the exhibit comes together.

They left Wednesday morning and both have called or texted me to see how I recovered. I spent that next day in my PJs doing nothing; went to group on Thursday; and cooked kosher paella for dinner Friday night for C and M (with chicken, halibut, and "soysage"). We had missed his birthday, so this was an impromptu celebration. My nephew was in town to visit his girlfriend and we took them to to brunch on Saturday at Portage Bay Cafe (sorry, even I can't eat eggs with hollandaise three times in the same week). Sunday I ironed all Rik's shirts and we joined G and W for a significant birthday dinner.

It's been a crazy week. I'm still on steroids but tapering off with prednisone. I've gained eight pounds in eight weeks because the steroids just make me want to eat all the time. I hope to start losing the weight in a week or so and get back into more of my clothing.

And soon I will talk about the good results of today's brain MRI.

What's new in CancerLand

I was able to start another round of eribulin last week. At first Dr G wasn't sure that my numbers would rebound in time, particularly my platelet count, but everything came back up by the end of the week.

Dr G also gave me permission to reduce the follow up doses of dexamethasone (daily for three days after chemo). I took only 4 mg per day, and that seemed to be fine. I had enough energy without feeling completely wigged out.

The neuropathy in my feet continues about the same. It's apparently still confined to my toes and the balls of my feet. Occasionally I am in pain by bedtime, with searing foot cramps. Wearing socks to bed seems to have helped that. I think it has to do with keeping my extremities warm. If my feet feel warm, they don't cramp. Taking lorazepam in the evening if the discomfort is intolerable also helps.

I am beginning to feel some numbness in my fingertips and a tiny bit of tingling in the palms of my hands. I'll be sure to report this to Dr G when I see him next week.

Today I took a nap, for the first time in days. Maybe it was the steroids wearing off (today was the third of three days), maybe I was just bored, but one minute I was reading and the next I was snoozing.

And that's the news from CancerLand today.

Hopped up on steroids

I am on day two post-chemo and have been on dexamethasone (Decadron) since my eribulin infusion on Wednesday. This is the steroid that makes me a little hopped up (hah, a litle).

Yesterday I ran a couple of errands, did three loads of laundry, participated in a 90 minute conference call, baked a pecan pie for  Shabbat, made dinner for Rik and I, and hosted rehearsal for my choir. I had to take Ambien to get some sleep even after relaxing for an hour after rehearsal.

Today I went to Dr G's office for my Neulasta shot (to boost my white blood cell count), met a friend for some fun, came home and started more laundry and am now blogging. In a few hours we will go to friends for Shabbat dinner and bring the aforementioned pecan pie along with coffee flavored whipped cream.

My feet hurt, I feel stressed from the steroids, it's impossible to relax. I will try to cuddle with the dog and read a bit while the laundry does its thing. Maybe the Ativan I just took will help me calm down.

Chemo rescheduled for tomorrow

We arrived, as planned, one hour before my chemo appointment for labs, only to learn that Dr G was supposed to order dexamethasone (Decadron), a steroid taken for three days while on Taxol -- the first day being the day before treatment. There was some conversation about whether I should have Abraxane today instead, but eventually common sense won out.

Dr G ordered the Decadron, which we picked up at our pharmacy. I take it twice daily for three days. I will receive the first dose of Taxol tomorrow, the second one next week, and see Dr G the first week in January, all as planned. The Taxol will likely be given once a week for two weeks, and the third week off, so the planned schedule fits this pattern.

Although this mixup basically destroyed plans for two days, I was able to use the time waiting at the Cancer Institute well. I wrote several thank you notes for last week's Dunava concert and Beth Shalom brunch and came home with most of the items on my to-do list checked off. And you know I put things on the list just to be able to check them off!

Rik moved a tall table back into our living room so that I can set up our menorahs for Chanukah, which starts Tuesday night. I don't know if I will feel up to going to dinner at friends tomorrow night. It's too soon to predict how the chemo will hit me or how the steroids will help.