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!






February 14, 2016

Another setback

I saw the dentist on February 2 and she pulled that annoyingly loose tooth by my ONJ spot. Thankfully, it no longer hurts but there is a big gap where the tooth was and it might never heal.

On February 5, I was curled up on the sofa (something I hardly ever do). When I got up, my ankles and knees hurt. The next day, they hurt even more. And so on, throughout the next week.

I went to chemo on Monday Feb.8 and reported this pain to the nurse. She spoke with Dr G's office, but with a substitute nurse. I'm not sure the message got through to Jacque, but when I sent her a message on Feb. 11, we spoke the same day. Dr G recommended taking ibuprofen to bring down the inflammation. The next day I went in for a special blood draw to confirm the widespread inflammation. By now the pain had been going on for a week. Dr G approved taking ibuprofen around the clock, more than the bottle says, and it seemed to help. But my other labs showed I was very anemic. That explained why I was so tired! I guess I'll hear on Monday if Dr G wants me to have another blood transfusion.

I did nothing this weekend, but in the wee hours of this morning I googled "what to eat when you're anemic." Many sites all recommend the same things: peanut butter, meat. poultry, eggs, legumes. Some places also list pomegranate juice and other super foods. I ate some peanut butter before going back to bed.

Today Rik went to the grocery store and picked up some goodies for us. We have a freshly roasted chicken for dinner with which I'll make some mashed potatoes. D & P brought over apple cake and stayed for an hour's visit. I had hard-boiled some eggs and ate one on toast for lunch. I hadn't had energy to talk with friends for a week, and it was great to have company.

All in all, this setback meant another week of doing almost nothing except lying in bed. I hope that by Thursday, when I see Dr Julie Gralow at Seattle Cancer Care Alliance for a second opinion on next steps, I'll have energy to get there and have an interesting talk.

And that's the news.


January 29, 2016

Inpatient and out (or there and back again, with apologies to Tolkien)

Big news  -- I spent much of the past two weeks inpatient at Swedish Medical Center. I had been complaining of mouth pain from my ONJ spot and then I twisted my back and was really in terrible pain. Rik got me to the ER just in time for a major crash on my part. I was admitted immediately, sent up to the 8th floor (close to ICU, 1:1 nursing) and then was moved up to 12 East, the oncology unit.

I experienced my own "perfect storm:" over-dosing / self-medicating for pain; residual issues from last November's radiation treatments, including gamma knife for the brain mets; pneumonia left from last October's admission; even the most recent chemo plus all my medications.

While I was on Planet Jill, my own private universe, there were days when I couldn't say more to Rik than yes, no and help. It was so frightening for him after 13+ years of relatively good living with mets to have more than one mental issue to deal with and to have to manage everything about my care. Thankfully we had already had a health care / end of life discussion many times and he knew what I wanted. And that Dr G always said he'd be totally honest with Rik. So when asked if this was it, Dr G said, maybe not today but could be soon.

And then my friends D and C walked me around the halls and we sang. They managed to reach me in å way no one else could, with music and other languages, not English and conversation. Other dear friends were able to draw me out as well.

By the 10th night I was almost fully recovered. I finally understood why I was a fall risk; why the bed was alarmed (the chair had been too); how to sleep even with all the light (I hadn't slept more than four nights total). I made a deal with this night nurse to really ring and wait if I had to get up to use the toilet. She in †urn explained all this over and over again until I really got it. The next day I went home.

This private trip to my own universe was frightening. I've never been happiest alone in my head. I've always been an extravert, getting my energy from other people. I knew I was not connected to the rest of the world, but I didn't know how to re-connect. And so I suffered and think I was an obnoxious patient, insisting that I didn't need the level of supervision they gave me. I was wrong, of course, but I didn't know that. And so the positive experience other cancer friends have had on 12 East passed me by. I was miserable, sick, out of my head and unable to express myself.

Eventually NP Joanna diagnosed the troubles, pulled all my medications, and added back each, one at a time. I couldn't even express that I still had pain in my mouth and feet. She had pulled the gabapentin for my neuropathy and concentrated on the other issues. She ordered many tests, including CTs, MRIs and even a bronchoscopy to determine the extent of my pneumonia. When I couldn't sign my name to the release form, but could remember to tell the anesthesiologist about the ONJ spot in my mouth plus the loose tooth, things began to come to together for me. And that was my last night in the hospital.

So I want to apologize to the wonderful nursing staff on 12 East for being such an obstreperous patient. And I want to praise three women in particular -- NP Joanna, traveling nurse Kristina, and a wonderful Filipina NAC whose name I could never even pronounce, much less remember. Joanna saved my life, plain and simple. Kristina reached me most effectively as a person and handled my discharge swiftly and easily. And my precious Filipina NAC helped me shower, helped me with joy, and helped me relax and be okay with depending on others.

I am so glad to be home and able to get to the bathroom without having to ask and wait for help!

January 12, 2016

Trying even hard to hope

This morning when I opened Facebook, the first post I read was that Holley Kitchen, another one of the "Pfizer Five" (my nickname), had died during the night.

Holley had been on a clinical trial which was too strong for her, and just a few days ago her oncologist told her she could try one more chemo or live without treatment for as long as she had left. Holley leaves behind a husband and two young sons. She was in her early forties and had much more life to look forward to.

Holley was in so many ways one of the the first new advocacy voices for metastatic breast cancer. In June 2015 she posted a video on Youtube which quickly went viral. Cancer organizations and media outlets both helped spread her voice near and far. She was loud and loving, organized and challenging.

When you express your sorrow over David Bowie's death at age 69, please remember that Holley, and more than 100 Americans like her, DIE EVERY DAY from metastatic breast cancer.

This is why Pfizer's commitment to sharing the realities of mets means so much to me. Not too many others promoting living with mets and doing research. Can we have more research asap please? Where else can our tax dollars better go than into saving the lives of our citizens?

Zichrona l'vracha -- may Holley's name be a blessing to all those who knew her, even virtually.

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