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.

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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?

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