May 23, 2016

Still slow

The anti seizure meds still make me feel slow. I hardly have energy to shower and dress so spend several days in my pajamas in a row if I don't have to go out. Dr G may have something to recommend to me re chemo. He doesn't want me to take a break although that's what that's what the past two weeks have given me (without more energy).

No more to say now.

May 10, 2016

Seizure update

Yesterday I saw Dr Vermeulen, my radiation oncologist who zaps my brain mets with gamma knife. In November she hit 23 brain mets and was happy with the results. She says the two mets which swelled and caused the recent seizure were not problematic and would likely respond to both anti-seizure meds and steroids. But I won't be  allowed to drive for at least four months until my next brain CT.  This is problematic - no running errands, must get rides or Uber/taxis to appointments, etc. It will put more pressure on Rik and our friends. Thankfully Swedish has taxi vouchers through NW Hope and Healing, a local organization for breast cancer patients.

I feel more disabled than ever before. Not having independence of movement  is really tougher than I could imagine. On the other hand, I also feel reassured by Dr V.  I see Dr G on Thursday and will get his take on the seizure. In the meantime I'll try to enjoy the sun and not freak out too much.

May 06, 2016

More downs and some ups

I had a seizure yesterday in my right arm. First time ever. Must  have something to do with brain mets and reminded me of a friend's recent experiences with TIAs (mini strokes). My right hand made a fist and I couldn't relax  it. My arm pounded against my chest. Tried to use warm water to do so and then my hand  opened and I couldn't lift my arm. The whole thing lasted about 10 minutes. A friend took me to Cherry Hill ER where the neurologist on call diagnosed a focal seizure (one limb affected). I was glad I thought to say I'd had a stroke. I had immediate access to an ER room, nurses, doc, etc. Cherry Hill is still the best.

It was a scary day but I got to go home around 4 pm. My right arm is not working as well today even though I'm left handed things are complicated. Typing for instance - back to hunt and peck with pone hand like in high school. I'm not allowed to drive.

April 30, 2016

Inpatient again

I was discharged yesterday after a week inpatient at Swedish Medical Center.  Shortness of breath brought me in on April 23 in the wee, early hours of the morning. I had a pleural effusion (fluid in the lungs), which was drained the next day, then I stayed for the rest of the week. Not lung mets, thankfully.

So now I'm trying to rest at home, cuddle with Rik and the dogs, and get some energy. More soon.

April 13, 2016

Steroids

I am hopefully tapering off the prednisone completely after this week. It's been more than a month, I've gained 14 pounds (which on my 5'4" body means I can't fit into much of my clothing) and I haven't slept well in weeks.

No matter what steroids do to make you'll better, you can't just stop them "cold turkey" and they have unpleasant side effect, namely: hungry all the time (which means weight gain) and keep you awake at night (which means crappy sleep).

I guess the weight will start to disappear as I feel less hungry at every hour of the day. Sleep is more difficult. I've alternated between Ambien and Ativan, but the Ativan no longer seems to work, which leaves me taking Ambient every night until the weekend. Then no doubt I will develop rebound insomnia and not sleep for a few days from that.

Cancer sucks.

But before I get off the steroids completely, Dr G wants me to have a Cortrosyn (cosyntropin) stimulation test (blood test) to see what my thyroid is actually doing. Apparently this test means multiple blood draws over several hours, potentially while fasting. I don't know but  I guess I'll find out more later this afternoon when I see him.

And then maybe a little shopping. It's the last day of a Macy's sale and there's a pair of sandals I want to try on.

PS No trip to Macy's, because it took forever to schedule everything with Dr G's new front desk staff, who seem seriously undertrained after my years with the staff at Minor and James.

MORE PS'S:

My tumor markers are down by 100 points!

My brain tumors appear smaller and there are no new ones!

I get to stop steroids tomorrow!

Everything is coming up roses at the moment on the cancer front. The Alimta and bicalutamide appear to be working.

March 30, 2016

Some pix from the recent Pfizer photo shoot

At Cafe Presse for the best fries in town!




















Last shots of Rik and I.


Photographer Angelo Merendino sets up a shot.



John Frazier takes a most excellent selfie.



We wait for Dr G. Note my cool Dowager Dame Violet hat.




And one in color just because we had to show off Rik's shirt. 

























































































Thanks to John Frazier of Vital Worldwide marketing for letting me use his photos! 

March 28, 2016

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.

March 14, 2016

A couple of falls

I haven't fallen since the day my left leg broke in 2002 (also the day I learned about the mets and went home on crutches. I'd never used crutches before.).

That's a long time without falls when you have metastatic breast cancer in your bones. But the weather has been so rainy here in Seattle that a week ago I fell while grabbing the walk rail from the driveway to house. I slipped on the mossy sidewalk and boom! went down on one knee. Just a scrape, but it shook Rik and I.

On Friday morning at 4 am I got up to use the toilet and didn't turn on the hall light. This is my usual habit. I tripped on my own feet and went down on my tusch. Not eve a bruise, but again it shook Rik and I a lot.

I went in later that day to see Dr G and he was concerned about a couple of reasons for the falls. Leftover issues from brain radiation? More brain mets? So he put me on steroids (8 mg dexamethasone daily) and then ordered labs. Guess what? I was anemic. So he also ordered a blood transfusion for the weekend.

Rik and I spent all day Sunday from 930 am - 4 pm at the Swedish Cancer Institute. I got two units of red cells and my cheeks were pink by the time we left.

If you are able, please sign up to give blood the next time there's a blood drive in your neighborhood. Or don't wait for a drive but head over to Blood Works NW (formerly Puget Sound Blood Center) and make a donation. For various reasons, Rik and I are no longer eligible to give blood, but we thank and appreciate those who do so on our behalf.


March 07, 2016

Ankles and knees - again

My ankles and knees are painful again. In early January they really bothered me. Last week I saw my podiatrist, who diagnosed plantar fasciitis in my left heel. A few days later, my right ankle began to hurt, as did my left ankle (not just the heel). Then the knees. Could it just be arthritis? And how do you diagnose arthritis? X-rays? Other imaging? Lab tests?

I've asked Dr G to order an X-ray (if it would help) after today's chemo. And maybe we'll learn more.

February 24, 2016

Counts coming up

Both my red and white cell counts are rising enough for me to feel better and go out to be with people. I'm still not sleeping well, which only contributes to my fatigue, but in general things are better.

Dr G plans to reduce my next dose of Alimta, hoping that it won't hit my counts quite as hard. I had a fascinating second opinion with Dr Julie Gralow at Seattle Cancer Care Alliance, and will post about that soon. One of her recommendations was to try bicaludamide again, given my androgen positivity. So I think Dr G will prescribe a lower dose of that as well. And he's agreed to take me off Faslodex, given my years of treatment with it and the scar tissue it has left in my tush. Time for a break.

Here's a pic of Boychik, who follows me everywhere. He's not really asleep, just in "paws" mode while I'm typing. When I stand up, he's awake and following me into the next room.




Bob tried to eat my mouth guard again this morning. For a dog with bad teeth, he sure likes to chomp on things!






Contributors