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!

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.

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!

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.

Checking in

Just posting to say that all is mostly well here in CancerLand. I am fine, but I lost a dear friend  in December. I've got a lot to say and hope to post more in the next few days.

Healthline blog nomination

I got this email today:

Hi Jill,
Congratulations – Your blog, Jill's Cancer Journey has been nominated in Healthline 2015 Best Blog Contest! You can see the contest here: http://www.healthline.com/health/best-health-blogs-contest

Each year, we recognize and honor the top health blogs of the year with our annual Best Health Blogs Contest. The contest shines light on those blogs that have really made an impact on their reader community and provided them with valuable information and resources to help them live better, healthier lives. We are happy to let you know that you have been nominated in the contest!

The contest started this Monday, December 21st and will run through January 21st. We will award cash prizes (up to $1000!) for the top 3 blogs with the most votes.

Please share the page with your followers and ask them to vote for you. Users can vote once every 24 hours, so please continue to share and encourage your followers to vote!

You can create a badge for you site that recognizes your nomination and encourages those to vote for you here: http://www.healthline.com/health/contest-badges
I’ll be happy to answer any questions you may have!

Congrats and good luck!

Nicole

Nicole Lascurain | Assistant Marketing ManagerHealthline
660 Third Street, San Francisco, CA 94107

www.healthline.com | @Healthline

Staying hopeful

Last week my friend J died after only a few days with hospice care. I saw her on Thursday at our support group and days later she died. On Sunday Rik and I attended her memorial service. And tonight I went with friends to a shiva minyan at her home. The mourners? Her wife, her college-aged daughter, her sister and other family members.

Joanie, like me, had lived with metastatic breast cancer for more than a few years. We shared many struggles and difficulties, but I think we both approached living with advanced cancer in similar ways.

Sometimes it sucks.

Other times it's just life. Or as our friend D from group puts it, the glass is full.

No, my nickname isn't Pollyanna. My life isn't all smiles and good cheer. It's just that I'd rather find the joy in each day if I can.

Even when I was hospitalized recently and shaking with fever and chills, after the shaking stopped, I tried to relax and practice my yoga breathing. The next day, if I could eat, I wanted some vitamin CH (that's chocolate to the rest of you). 

I don't know how, even in this aftermath of yet another friend's death from advanced cancer, I can still smile. But somehow I manage to find joy in every day.

You might find this article from CURE Magazine of note: Hope in the Face of Death: Living With Metastatic Breast Cancer. The author notes that there are long-term outliers living with mets, naming me and others among them. 

Every click on the article results in a donation to METAvivor. And if we don't give now to fund research into metastatic breast cancer, then when?

The Martian (movie) and cancer

My brilliant oncologist, Dr Sheldon Goldberg, writes several blogs on top of treating patients, staying current with cancer research, reading more than 100 RSS feeds daily, studying Jewish texts and raising a family. His brain must be bigger than most people's, and he can store and access so much information.

Recently he saw the film "The Martian," in which one astronaut is accidentally abandoned on Mars after his colleagues believe he died in a storm. It was a great book and a good movie. Dr G blogged about it here and asked me to share his comments on my blog. His take on the film was wholly different from what I expected, and yet it makes perfect sense to me as a cancer patient.


medical philosophy

Friday, November 27, 2015

The Martian: How much is a person worth?

Recently, I saw The Martian, a movie about a man accidentally abandoned on Mars. The movie is about the struggle for survival, the marshaling of forces to allow the survival of that one man, the sacrifice of compatriots and the politics of rescue.

 
Cancer patients, and the people who care for them, can feel like they are abandoned on Mars. The feelings elicited by this movie are similar to those we, who care for cancer patient patients feel. When do we call the situation hopeless? When do we give up? How much can we put into the effort for one patient? How much can we spend?

In the movie there is no limit. Billions of dollars are spent, scores of people work without rest, people give up years, in the prime of their lives, to attempt to rescue a single man. In our real, medical world the money, the time, the energy are all limited, The resources are shared by thousands of patients. This places every part of the medical system in the position of distributing a limited, precious resource. The doctor must balance the chance of benefiting the patient against the cost to the system, which could mean denying another patient an equal or better chance. Doctors differ in their approach to this problem.

How can we do any less than our best? Our efforts are not like those in the movie. They are not as good as they should be.. The basis for saving the Martian was adoption of a nonstandard strategy, a strategy that would work, in theory, but was not a usual approach. A methodology that involved unanticipated expense and sacrifice.

Currently, the pressure to follow standard procedures is almost overwhelming. Deviation from such standards risks the label of malpractice. Obtaining insurance coverage for a treatment that is not recommended in guidelines, or for a problem that deviates from the FDA approval parameters is a Herculean task - and getting harder. .

Knowledge and Resources are always limited. The Martian was rescued, he beat the odds. It is very expensive and difficult to take on the odds... sometimes it works.

A Story Half Told: Life with Metastatic Cancer

If you have metastatic cancer, or you care for someone who does, you're free on Sunday and you live in the greater Seattle area, please join us at Greetings Gilda's Club Seattle.

When: Sunday, December 13 2-3:30PM

Where: Gilda's Club Seattle 1400 Broadway Seattle, WA

Please RSVP by emailing info@gildasclubseattle.org or calling 206-709-1400. 

For more information, see attached flyer. We hope to see you there! 

Chanukah

Last night our holiday of Chanukah began. It's about "this" important in terms of Jewish observance. Because it's a winter festival of lights and can fall very close to Christmas, the holiday observed by our government and so many people worldwide, Chanukah has come to take on increased importance in the USA and other Western countries.

That said, how can you not love a holiday whose main observance, after lighting candles (which we do on most Jewish holidays), is cooking and eating foods fried in oil? Me -- I never met a fried potato I didn't like.

Last night I did my usual, annual routine. I made my dad's recipe for latkes (potato pancakes) while listening to Debbie Friedman's album Not by Might, Not by Power, singing as loudly as possible and dancing around the kitchen.

While the latkes were cooking in batches, I made the Joy of Cooking's vegan orange cake, which comes together quickly, bakes in 30 minutes, and doesn't require more eggs or even much oil. I use half the sugar called for and cut the orange juice with half lemon juice, so that it's not as sweet as the original recipe.  I spread chocolate chips over half the top as the cake cooled so Rik and I would both enjoy part of it.

I pulled from the fridge the rest of the cranberry chutney I made for Thanksgiving, some salad, apple sauce and Greek yogurt (didn't have sour cream). After frying so many latkes that the house stank from oil, we ate latkes and salad for dinner until we were stuffed. Rik ate six and I ate four. Shouldn't have had that last one (urp). 

Now that's what I call a holiday!

The first three latkes!

Again I will post my adaptation of my father's latke recipe. As my mom and I recalled, Dad would stand at the stove frying while we three sat at the kitchen table. He'd serve up a plate of latkes, start frying another batch, and eat his while standing up. No wonder both his daughters became master latke-makers!

Jill's take on Shellie's Latkes




2 pounds Yukon Gold or russet potatoes, peeled
2 onions, grated
3 large eggs, lightly beaten
Salt and freshly ground black pepper to taste
1/4 cup matzo meal or flour
Avocado, canola or other high heat oil, mixed with olive oil for frying
Applesauce and/or sour cream for garnish

1. Grate the potatoes by hand using the tiny holes in the grater. Or in a food processor use the thinnest grating blade, then whirl with the S blade to turn potatoes from grated strips into more of a mush. Grate the onions in the same way. Scoop up 1/4 cup of potatoes at a time with your hands and squeeze out and discard the excess liquid, then put in a colander and add the onions, eggs, matzo meal or flour, salt, and pepper, making sure that everything is very well blended. Let batter drain in the large colander over a mixing bowl while you fry.

2. Heat about 1/4 inch of oil in a 10-inch pan over high heat. Scoop latkes using a tablespoon and add them to the hot oil. Don't crowd the pan -- four at a time is plenty. Be careful not to burn yourself! Cook latkes for about 5 minutes per side. Drain on a rack placed in a baking sheet with one inch sides (do not use paper towels), and keep warm in a 250 degree oven. Or eat standing up, while they're fresh from the oil.

3. Serve with applesauce at a meat meal or with sour cream or Greek style yogurt at a dairy meal.

PS You can freeze fried latkes in a single layer on a baking sheet. Transfer to a freezer bag or other container. When ready to eat latkes again, reheat in a low oven for about 20 minutes or until warm. If you make them in advance this way, your house doesn't smell like fried potatoes or stale oil when the guests arrive. Thanks to my sister for this great tip!