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!

Thanksgiving

I really don't have anything interesting to say about Thanksgiving. You'd think I would, but it seems maudlin to talk about why am I still alive after watching so many friends die of their cancers. So I'm turning over this post to my wonderful husband Rik, who wrote it November 22, 2015 on his Facebook page.

Why I am grateful this Thanksgiving.

Great article from the New York Times today brought it all home. Adding some personal reasons too!

Grateful for Jill being in my life for 21 plus years, and her having the best team of medical care in the world over the last 16 years to manage her Breast Cancer and mets disease, but particularly the last month as she has been hospitalized with two infections, continued chemo, almost finished radiation on four spots and successfully managed Gamma Knife to her brain.

Also grateful for the support of my community of friends, neighbors, and synagogue members who have brought us meals, rides for Jill, company, and of course my colleagues at Roosevelt High for all the support in rides, hugs, good wishes, coffee, coverage of classes for me when needed, and giving me lots of slack, and my students who always are wonderful caring human beings who get that school assignments are not the most important things in life.

See attached photos for Jill in action making the cancer go away!

Jill wears the full gamma knife gear

"What, no second breakfast?!"

And at the conclusion of radiation to four separate spots. That face mask was awful and didn't even look like her.

XRT and gamma knife

Tomorrow is the last day of this round of radiation. It will have been ten days, plus one especially for gamma knife to the brain. Of the four types of radiation treatment, I'll have had three: proton, electron and gamma knife, to five different sites (skin met on scalp, skin met on chest, lymph node on neck, lower right rib and brain).

The gamma knife lasted longer than I recall from my first experience, but of course I insisted on having conscious sedation that time, so I don't remember much. This time I accepted six mg of Ativan instead. The numbing lidocaine injections in their three inch needles (so Rik told me, I didn't see them, thankfully) hurt like the devil, but there's no way around that. At least the pain subsided quickly. I have four more tiny holes on my head, two in front and two in back. Those are covered by hair. They're all healing nicely.

Here are some awful photos. Like my snack and the bubble too? The bubble helps the nurse measure the exact shape of the head. I think the "crown" keeps my head still and must get attached to the gamma knife. They didn't show me that part.

Wearing the bubble

With the "crown" and enjoying second breakfast:
 hot mocha and a croissant 

I sent Rik home once it became clear that the procedure would take hours and he could at least be more productive at home than at the hospital. He didn't want to leave but how awful must it be to sit for so many hours with no involvement in what's going on? And at least he could be with the dogs. Or they with him. Not sure how that worked, exactly.

So, a long day. Dr V gave me a prescription of steroids, tapering slowly down from two mg four times a day over several weeks to none at all. The Decadron disturbs my sleep, but I hope a dose of Ambient will help that tonight. I seem to be fine. That first day afterwards was a bit odd. I think I made many verbal goofs but no one seemed to mind. Much. 

Tomorrow, back to my last session of XRT with the kindest, most respectful technicians since the last time. I gave them some vitamin CH as a small thanks for treating me with such delicacy and caring.

Posing with the face mask for regular radiation

XRT

Today ends the first full week of two for radiation to four spots, otherwise known as XRT (X-ray therapy). I was so fatigued earlier in the week, but I realized this morning that I had tried to squeeze in a blood draw and oncologist appointment on Tuesday and Wednesday, with radiation separated by more than an hour. No wonder I was so pooped.

Yesterday was much more pleasant. I got up early, ate and showered, crashed for a bit and went to XRT. Today the same but I haven't crashed or showered yet. Yesterday's dog walker was a wonderful young woman who instantly fell in love with the pooches, and they with her.

Our synagogue has been providing help through the Mitzvah Corps, a neighborhood group that supports families in need - whether it's a new baby, a death or illness in the family, etc. So far we've had daily dog walkers (and I know not all these people really like walking dogs, but they want to help) and delicious meals twice this week. It's been so wonderful to have this support. It helped us thirteen years ago when I broke my leg and needed assistance with everything, including getting my own lunch.  I fondly remember one friend from Radost who showed up with her mop, bucket and vacuum cleaner to clean our house! I've tried to pay it forward to other families over the years, and now the circle comes around again.

The XRT is first to the skin met on my head, which is doing really well on it, although it will leave a permanent bald spot. I'll have to have a comb over when I grow enough hair. Then to the skin met on my chest, which is bleeding freely when I remove the bandage but which I hope is also healing on this regimen. Then they zap my shoulder and neck lymph node combined. Hard to tell on how well this one is working, because it still hurts. Last is to my right lowest rib, which might have fractured when Bob the dog jumped on it (this happened once before) or is just a new bone met. At any rate, it hurt enough to warrant treatment. The radiation techs are terrific gentle men, who treat with me with dignity and delicacy, worry when I stain my shirt with blood, and actually pick me up and place me down on the gurney to put me in the proper position.

Dr Eulau the wonderful radiation oncologist has actually treated me four times over the years, from my original diagnosis, my mets diagnosis, my ulnae, and now. He is a fabulous, caring physician and I wouldn't have asked anyone else to be on my dream team.

Now it's time for a shower, clothing and more laundry. I actually feel well enough to do all this today!

Radiation etc.

It's been a whirlwind week of doctors but now I know what to expect through the next several weeks. If you remember, I told my mets many years ago that if they were quiet, they could live with me, but if they got noisy, I'd bring up the big treatments. So here we go!

1. I met with Dr Sandra Vermeulen, the gamma knife (targeted radiation) specialist, and she says she can zap my brain mets. Maybe only some of them, but some is better than none! She's going after the ones on the top of my head, where most of them live. Then she's going after the three largest in my cerebellum. We actually had a chat after our talk about where to zap, and she's not a chatty lady. Go Dr Sandra!

2. Then I saw Dr Stephen Eulau, my general radiation oncologist. He's treated me several times over the years, from the very beginning in 1999. He's an incredibly sweet, kind man, just the type of person you want on your care team. Now he will treat the two skin mets (the one on my head, the one on my chest), the enlarged lymph node on my neck, the newly diagnosed left shoulder bone met and the also newly diagnosed right lower rib bone met. I had a simulation last week and have to wear a plastic mask each time. It's got holes for my nostrils, eyes and mouth, but still it's icky. I get zapped for ten days, thirty minutes at a time. I didn't like the face mask at all, but a little Ativan helped relax me, as well as some yoga breathing and remembering to keep the top of my head touching the inside of the mask. It's pretty awful but I am tough. Tough enough to deal with a two inch round permanent hair loss. I'll just have to have a comb over like The Donald.

3. I spoke to the wonderful nurse Sally at the Cherry Hill Wound Center and she told me to stop wearing the plastic-ey Tielle bandages and switch to a gauze bandage attached to my skin with tape after I start radiation. I will be sad to lose the Tielles since they work so well and I can wear them in the shower with no extra covering, but Sally told me I can either remove the gauze bandage or cover it with Cling Wrap in the shower. Either way works fine.

4. Dr Flugstad the orthopedist was so happy to see me. It had been two years since our last visit. He's the amazing guy who fixed my left leg and kept me dancing all these years. Dr F confirmed that my left shoulder was not in immediate danger of a fracture (yay!) and that I also have some arthritis in that spot (boo). I guess not a surprise, since I have occasional off-and-on pain from arthritis in both thumbs. He also looked at the recent X-ray of my right rib and thought radiation would be fine for that spot, but noted that I have multiple bone mets in my ribs anyway. Then he watched me walk and confirmed that with the lift in my left shoe (and they were pretty amazing ankle boots) I could walk and stand without issue.

5. Then last and of course best, I saw the Amazing and Wonderful Nurse Jacque. She had to send me over to the lab for a blood draw, since I don't have a PICC line anymore. We shmoozed a little and Dr G came in for an exam.  He still wants me to see someone at SCCA for a second opinion. The only issue I have there is that they think inside the box and Dr G clearly thinks outside the box. But as he says, they know what's coming up next in the research and that can only help. So he will contact Dr Julie Gralow's scheduler. When I spoke with them she couldn't see me until January. Maybe Dr G can do more. And while I was sitting with him, he took a call from a doctor at interventional radiology about putting a "passport" in my right arm. He called me not a patient, but a close friend who is a patient of many years, gave him all the reasons I couldn't have another port-a-cath. From memory. I was so pleased to be in the room while he spoke to this doctor about me and let me overhear the details. This is why Dr G is clearly the doc for me (with apologies for the awful rhyme).

6. I also went to my weekly support group. When I gave my update -- I hadn't seen them in two weeks, since my collapse with shakes and fever while there -- four people offered to help while I was in radiation. Walk the dogs. Drive me to or from. Bring whatever I needed. It was so lovely to have friends new and old step up to help, even while they deal with metastatic cancer. Luckily when I scheduled the radiation, almost all of it will be at times when Rik can drive us both.

7. On Friday I had my latest dose of Alimta (pemetrexate), the new chemo Dr G wants me to take. I ran into a friend and we managed to get the nurses to put our chairs close together. She was alone but I had a friend and the three of us enjoyed a really good visit. This is my second dose of Alimta, and other than feeling like crap when I got home, I spent the day today lazing in bed. Dr G wants me to take Decadron on the day of chemo and for three days afterwards, but it's a very light dose for home. I hope not to have the midnight shopping mania so frequently associated with this steroid. Alimta is given once every three weeks.

That's a lot to report but it should take me through the next two weeks. I will write about how the radiation goes. Onward and upward in every direction!

On to November

Pinktober has ended and I personally am glad. Although I figured out the best way as a metster to "celebrate" it (by spending time in the hospital), I am so glad that the end of pink products and pink washing may be over. To learn more about pink washing, go to Think Before You Pink.

A friend told me on Saturday that it may take a week to recover for each day inpatient. Since I was at Swedish for six days, I am going to try to take things easy this month.

Last week I saw the brain radiation oncologist and she says she can treat my multiple brain mets with gamma knife radio surgery. She did this once before when I had only four bran mets. Now I have more than twenty but she is confident.

Today I see the radiation oncologist. Tomorrow I see the orthopedist, just in case something in my shoulder might break. I have a new met(s) there, and on my lowest right rib. I don't want to risk a fracture when I turn over while sleeping or other such event.

Today's rad onc will look at the left shoulder, right rib, enlarged lymph node on my neck and my two skin mets. I hope he can treat them all since I am so tired of complaining about the last three items for months and not really being heard.

When I have more to report I will check in. I might wait until I know about everything.