Getting ready for Passover

Passover is right around the corner. The first seder is next Friday night and I am already behind in my cleaning and preparations. No doubt I will feel better once at least the refrigerator is clean.

The following cane across my email inbox (now that we am back on line at home). I think you will enjoy both videos. Remember to turn up the volume!

Passover Rhapsody, the Exodus story set to Queen's "Bohemian Rhapsody," from Yeshivah Aish HaTorah,

And a shadow dance interpretation of the Exodus from Denver's Silhouettes, a children's dance team.

Enjoy!

No Internet

Our DSL line has been down since the weekend. Otherwise all is well and my kidney pain has abated.

More on kidney stones

I had severe back pain again last night, the kind that wakes you up at 3 AM. It was accompanied by nausea, although I did not vomit. I got out of bed, took 1.5 hydrocodone tabs, and tried another Lomotil. The pain eventually went away but I didn't sleep too well.

I just did a little research on kidney stones and found the following articles:

PubMed Health on kidney stones

Medline Plus on self care

NIDDK's What I need to know about Kidney Stones

There are four kinds of kidney stones. Uric acid - what Dr G suspects - is one kind. Clearly we have to determine which kind I have.

I am trying to drink more water. Some sources say 6-8 glasses a day. One said 12! I have a call in to my primary care doc, in case she wants to order particular tests on Monday. I wish I'd thought of that yesterday -- she's not in on Fridays. Her nurse is supposed to call back.

Yet another thing to add to my dance with cancer...

Kidney stone update

My kidney pain has returned. On Tuesday night I was uncomfortable but didn't take any pain meds, just thought I might have heartburn (from eating too much dinner at a friend's house) and a sore back. I did not make a connection to last week at all, but these were the same symptoms. It took me until 3 AM to understand that I had real pain, the kind that stops you in your tracks. Other people feeling this level of pain might have gone to the ER even in the middle of the night. At least that's what other people with kidney stones have told me they did. Not yours truly. I have real pain meds right here. I grabbed the glass of water on the night stand and swallowed a hydrocodone pill. When that didn't take effect, I downed a second dose. Within 30 minutes my pain was gone and I felt very dreamy indeed.

Relief from the 3 AM pain meds lasted until noon Wednesday, when my back pain returned. So I started taking the ibuprofen which Dr G had recommended. That was fine until today. By 1 PM today, taking 400 mg of ibuprofen every eight hours was no longer enough medication.

The SCCA folks weren't interested in managing my kidney issue. They said to talk to Dr G or my regular doctor.

While waiting for my Xgeva shot today (the monthly bone strengthener), I asked if Dr G could stop by. He gave ma an actual "you poor baby," and told me I could increase the ibuprofen and take hydrocodone. He also had researched that atropa belladonna helps kidney spasm pain. So Dr G prescribed Lomitil, which contains belladonna. (Must be the stropping in the mix.) Dr G was pleased that I recalled form my high school Latin that bella donna means beautiful lady. He also seemed a bit irked that SCCA, which had originally insisted they would handle everything while I was on the clinical trial, wouldn't step forward to address the kidney concern.

I took some ibuprofen and a dose of Lomitil, and it kept me pain-free all afternoon. But now I can feel the beginning of some pain tweaks, so I am going to take some more ibuprofen and hope that carries me until bed time.

I will see my regular family practice doctor for an annual physical on Monday, and she can take over managing the kidney thing. Dr G is my oncologist, whose job is to treat my cancer. It says a lot about his commitment to patient care that he is more than willing to treat anything that comes up.

Seattle's hidden treasure for cancer patients

Gilda's Club Seattle (GCS) recently celebrated its tenth anniversary. I've gone to yoga here almost every week during the past six years. I help out with fundraising and have tried to model in the annual fashion show several times (health issues always prevented me from walking down that runway).

Although GCS has 20,000 members, it's struggled during the economic downtown. Gilda's Club is one of Seattle best-kept secrets for cancer patients. Why don't more people know about it?

Check out this Seattle Times article to learn more:

Rachel Clark of Issaquah was 8 years old when her mother was diagnosed with cancer. Less than nine months later, Rachel stood by a hospice bed, unable to find words as her mother drew her final labored breaths.

Cancer can be like that.

Jerry Liebermann of Seattle was 22 when a tooth extraction that wouldn't stop bleeding led to the diagnosis of his leukemia. Doctors gave him three years to live. But, while he's had remissions, relapses, rough days and painful moments, he's still around, 33 years later.

Cancer can be like that, too.

Although their experiences are markedly different, Clark and Liebermann both say cancer always will be part of their lives.

They share something else as well: Gilda's Club.

FutureMe.org

I just found this amazing website, FutureMe.org:

FutureMe.org is based on the principle that memories are less accurate than e-mails. And we strive for accuracy.

See, usually, it's the future that will reflect back on the present. We here at FutureMe think it's fun to flip that all around.

So send your future self some words of inspiration. Or maybe give 'em swift kick in the pants. Or just share some thoughts on where you'll or what you'll be up to in a year, three years...more? And then we'll do some time travel magic and deliver the letter to you. FutureYou, that is.

I wrote a private letter to myself. And then I searched for breast cancer and metastatic breast cancer, and found some public letters. I decided to write a public but anonymous letter about my dance with mets in the hope that it might help someone else with a similar diagnosis to cope. That one is set to deliver on my mets-iversary, August 20.

Who knows what I will think or where I will be when Future Me gets these letters?

Kidney stones

The answer to the tummy pain etc. appears to be kidney stones!

Dr G says that given my recent improved PET scan, this is the likely scenario. When tumor cells die, they produce uric acid. This settles in the kidneys and forms stones. 

My symptoms and areas of pain match the clinical diagnosis of kidney stones. The clincher was when I described yesterday's pain and held my hand over the lower left side of my abdomen -- the stone passing?

I also awoke this morning with much less pain which has now dwindled away to almost nothing. 

Today's ultrasound did not show a stone, and since my pain is gone, that also points to kidney stones as the culprit.

Dr G posted his diagnosis in my electronic patient record at the U, and sent email to Dr Gadi as well. I haven't heard back from SCCA yet.

This is why I so love Dr G. He thinks outside the box on a regular basis.

Dr G double checked himself on all of the above, and then prescribed NSAIDs instead of opiates for pain (400 mg of ibuprofen three times a day if needed).

Whee!

Happy anniversary to us

Today marks our 17th wedding anniversary. We don't usually do much to celebrate, but we do invariably buy art.





Starting with an art glass bowl we bought to celebrate our engagement, we've added to our personal "museum" over the years.







I'm not sure what this year's art will be. On more than one occasion it's been a rock, such as this amethyst geode. (An amber necklace also counts as art.)

   

Then there was the print we fell in love with while in Paris. We walked past that gallery daily on our way to and from the Metro. Finally on our last day we stopped inside to ask about it.








Last year Rik framed these photographs he shot a while ago.

 

It might be music this year..... Who knows?

Achy belly

Since last Sunday I've had aches in or near my belly, constipation, gas, bloating, pain in my (left) side and along my back, and a weight gain of three pounds. After several sleepless nights, and a recommendation from Dr G's office that I call SCCA first, I finally got through to Dr Gadi's nurse on Friday. (Although someone checks her voice mail on Thursdays when A is not in the office, it turns out that whoever does so only returns urgent calls. I guess I didn't sound sufficiently urgent on my two messages).

A was pleasant on the phone and said she'd tell Dr Gadi about my symptoms. At around 1PM Friday she returned my call and asked if I could come in to SCCA, have some blood drawn for labs, and then wait for the results. Since I was already on Capital Hill, I did so.

The lab was extremely busy and I waited more than thirty minutes to have my port accessed. I waited about an hour for the lab results. A spent some time with me, talked through my symptoms again, did a brief physical exam, and told me that my belly was soft, my bowels sounded fine, and that my labs had all improved since my previous visit. Not only that, but she printed out my PET scan reports and each area of concern regarding tumor uptake of glucose injection had improved since the last scan. The only difference in my situation since my previous visit with Dr Gadi was that I had started Femara (letrozole). He prescribed generic letrozole, which may be a culprit in my discomfort.

I waited again while A talked to Dr Gadi. Their best recommendation was to take a baseline measurement of my rib cage and belly on Friday when I got home, take another measurement over the weekend, and see if anything had changed. Dr Gadi also wanted me to have an ultrasound of the area, and since it was already 3:30 on Friday afternoon, A didn't think she could get me scheduled for that same day. I already have an appointment on Monday to see Dr G, so at my request, A spoke to Dr G's nurse, who was able to order an ultrasound for 6:45 AM Monday. (Oy. I am so not an early riser.)

I felt well enough to cook dinner for our guests Friday night. But after getting into bed I was restless with discomfort, so much so that even with Ativan and Vicodin I gave up trying to sleep at 2:30 AM. I got out of bed, made a nest on the sofa, half sitting and half lying down, and eventually fell sleep. Rik got up with the dog at 7:30 and I crawled into bed, where I stayed until after 10:00.

I sat around the house all day Saturday, trying to relax my belly and back. I nibbled on a cracker, drank some soup, and ate the remains of Friday night's salad. So far today I've managed to eat a small piece of French toast and a couple of bites of fruit. I even went for a walk with Rik. But I am still bloated, my belly and back still hurt, and my weight is still up from normal.

The point of tomorrow's ultrasound is to check for ascites, an accumulation of fluid in the abdominal cavity. If I have this, it likely relates to liver metastases. But based on last week's scan my liver has improved, and my lab results from Friday say the same thing.

I think all I can do is  hope that somehow my discomfort is due to that generic letrozole, that one of my doctors will recommend changing to the brand name drug, and that the insurance company will approve it even though I still have three weeks' supply remaining of the generic drug. I really can't face three weeks of not sleeping well, belly aches, etc.

Otherwise, who knows what might be happening?

Rainy, wet Seattle

While the rest of the country has global warming, with temps in the 60s and 70s, we get global weirdness -- pouring rain in Seattle for several days straight. It's coming down so hard now that Bob the dog couldn't handle a walk around the corner. He got soaked and so did I, despite my knee-high rain boots and supposedly waterproof jacket.

Purim has come and gone and it's almost time of Passover. The local grocery store began stocking its shelves with matzah, etc. a few weeks ago and I hoped to do some shopping today, but it's so wet outside.

For the past few nights I've had a number of odd symptoms: what feels like heartburn, bloating, gas, constipation, and such pain along the left side of my waist that it wakes me up in the middle of the night. I've also gained three pounds in the past week.

I don't think it's liver mets (the liver is on the right side of the body) or appendicitis (the pain isn't constant). But it's pretty darn annoying, not to mention painful.

So at 8 AM this morning I placed a call to Dr Gadi's nurse at SCCA but haven't heard back from anyone yet. (It's only 10:30.)

Dance the night away

A few days ago I went to the first annual Balkan Night Northwest. It was a huge mash up of Balkan bands from around the Pacific NW. Dunava participated and despite being without two singers (one had to work; another got a terrible cold at the last minute) and a third feeling extremely ill, our show went on. We were well-received by a packed room in the kafana (club). It was one of our few performances using hand-help microphones, and they made a big difference from sharing mic stands.

Next door was the main stage with 14 bands lined up. I lasted until the zournas came out. These wild, screechy instruments always make a me a little crazy, and after being on my feet for five hours, I was pooped.

But before I left I had the best time EVER! I caught up with friends I haven't seen in ten years or more. I danced my favorite dances with my dance friends from our days in the Radost Folk Ensemble. The Croatian dances were particularly fantastic -- thanks to G, J, another J, E, S, N and next generation dancer A. Like homing pigeons, we found one another from across a very crowded dance floor. Our drms circle spun so fast, the room blurred.

I danced more and visited more until the room got so crowded that it was tough to move. I began to actually feel my feet again, and they were telling me to sit down. Rik came to pick me up just as my ability to cope with such a crowd began to dissipate. Turns out 800 people attended!

A stretch on the sofa that night, followed by doing nothing the next day, put me back in order. But what a great time! It was worth the price of crashing afterwards.

What its really all about

Life with metastatic cancer. I live it, and yet sometimes another perspective can bring me to my knees.

I watched this video: Rachel Cheetham Moro. If you watch it, think about what it means to live with advanced cancer. Then please do something to bring about the systemic change needed. The world can't afford to lose another Rachel, Stephanie, or Josh.

Rachel Cheetham Moro died on 6 February 2012 from metastatic breast cancer. She was 41.

She will be greatly missed by her beloved husband Anthony, her family, her friends, her dog and the thousands of people who read her sharp, angry and witty words on her blog where she challenged mainstream breast cancer culture:cancerculturenow.blogspot.com/

Rachel's family have asked for you to support the two memorial funds set up in her name.

METAvivor Research and Support, Inc - who called Rachel 'the most influential blogger in the metastatic breast cancer community'.metavivor.org/METinmemory.php?Rachel

Breast Cancer Action - who say, 'we will continue to carry Rachel’s torch in moving beyond the “pink razzmatazz” to systemic change that will end this terrible epidemic'.bcaction.org/2012/02/08/in-memoriam-rachel-cheetham-moro/

To hospice and when

This is an issue that every patient with advanced cancer faces at some point. When will I know that I've had enough treatment, that my life would be better spent with hospice support, pain management and no more crappy chemo side effects?

I'm not in this place of deciding now, but I know it's coming some day.

Why Doctors Die Differently
By Ken Murray 

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. It was diagnosed as pancreatic cancer by one of the best surgeons in the country, who had developed a procedure that could triple a patient's five-year-survival odds—from 5% to 15%—albeit with a poor quality of life.

What's unusual about doctors is not how much treatment they get compared with most Americans, but how little. 

Charlie, 68 years old, was uninterested. He went home the next day, closed his practice and never set foot in a hospital again. He focused on spending time with his family. Several months later, he died at home. He got no chemotherapy, radiation or surgical treatment. Medicare didn't spend much on him. 

It's not something that we like to talk about, but doctors die, too. What's unusual about them is not how much treatment they get compared with most Americans, but how little. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care that they could want. But they tend to go serenely and gently....

Read the full, great article here.

End of the first round of Vorinostat

Today was my second PET scan in two days and the end of this first round of Vorinostat. Rik woke me at 6:30, I rolled into the shower, dressed and went off to SCCA. The FDG PET scan is done fasting, so I didn't have so much as a cup of weak tea before getting scanned.

Afterwards I went to the Portage Bay Cafe at the South Lake Union location. (Normally we eat at the original restaurant on Roosevelt.) This site has an even better breakfast toppings bar! In addition to real maple syrup, brown sugar, sliced almonds, dried currants and what must be the largest bowl of whipped cream on the planet, the fruit here is fresh, not frozen as on Roosevelt. I chose from among piles of fresh raspberries, marion berries, blueberries and strawberries to top my buckwheat pancake, which was the size of a dinner plate. With a mug of coffee (topped with whipped cream, of course), I refueled for the day.

Yesterday's FES PET scan went well also. It's much less stressful when I don't have to fast. But it was scheduled for the end of the day, and so by the time I finished at 6 PM, I was in no frame of mind to cook. Rik ordered a pizza, we drank the remnant of a bottle of red wine, and I crashed on the sofa for the evening.

Tonight I begin the six weeks of Femara!

End of vorinistat round 1

I thought I was supposed to take my last dose of Vorinostat tonight, but have been asked to continue for one more day. I won't be sad to stop the vorinistat. It's been tolerable, although I have had both constipation and diarrhea, as well as some nausea and fatigue. But as I said originally, I think I can manage almost anything for two weeks.

Tomorrow I begin the second round of PET scans and I think that has something to do with continuing vorinistat for one more day. I have the FES PET scan on Monday and the FDG PET scan on Tuesday.

REFRESHER: The FGD PET scan is done while I am fasting, to measure the uptake of glucose to - presumably - malignant tumors and metastases. The FES PET scan measures the uptake of estrogen to the malignant cells. I'm taking the vorinistat to re-sensitize my cancer to estrogen. On Tuesday I will start taking Femara, an aromatase inhibitor, for six weeks. It's job is to begin reducing the number and size of metastases.

I took Femara at the very beginning of my life with metastases in 2002 and I think it worked for about two and a half years. When I saw Dr Gadi last week, he told me he wanted to use either Aromasin or Arimidex for the next trial step of aromatase inhibitor. I asked if it made any difference that I'd been on Femara the longest, and he consulted with the clinical trial coordinator. Lo and behold, I will start Femara.

Femara worked for a long time, and was very tolerable. Let's hope it will do so again!

Happy heart day

March 1st is also the anniversary of Rik's surgery to replace his aortic valve. Ten years ago today he received a shiny, new artificial valve.

This was the one time in our marriage where I was the caregiver for an extended period of time. I am sad to say that after a few weeks, the little patience I had would fray. I really didn't understand why Rik tired so easily, and I had already been through treatment for early stage breast cancer. Even my own experience did not prepare me for the tasks of taking care of someone I loved.

And of course only a few months later I was diagnosed with metastatic breast cancer, and our roles reversed again.

I'm pleased to say that Rik continues to do well. He doesn't like to make a fuss about himself, but I do enjoy celebrating special occasions. So tonight's dinner includes lamb chops, baked sweet potatoes, roasted asparagus, some lovely red wine and one of Rik's favorite desserts: cherry pie, made with the sour cherries I bought last summer and froze until needed for a winter festivity.

Happy March!

Chestita Baba Marta -- happy Grandma March day!

Bulgarians celebrate March 1st as "Grandma March Day" with best wishes for good health and joy as spring approaches .

Grandma March Day is a holiday celebrated in Bulgaria (and Romania). It is celebrated on the first of March. Martenitsa are worn on that day to symbolize warmer weather and well being. Old Bulgarians call it Birch Month, because it was around the time when birch trees start to grow leaves and give sap. There is a large amount of folklore connected with Grandma March. 

Martenitsa (Bulgarian: мартеница /mar.tɛ.ni.ʦa/, plural мартеници, martenitsi) is a small piece of adornment, made of white and red yarn and worn from March 1st until the 22nd March (or the first time an individual sees a stork, swallow or budding tree). The name of the holiday is Baba Marta. "Baba" (баба) is the Bulgarian word for "grandmother" and Mart (март) is the Bulgarian word for the month of March. Baba Marta is a Bulgarian tradition related to welcoming the upcoming spring. The month of March, according to Bulgarian folklore, marks the beginning of springtime. Therefore, the first day of March is a traditional holiday associated with sending off winter and welcoming spring.