April 14, 2015

Medical update

I've been meaning to post for a week about the latest news on life in Cancer Land.

The skin metastasis on my scalp grew and became very ugly during my first round of Ibrance. I haven't seen Dr G since before Passover but did go to my dermatologist. He biopsied a sample, cleaned up the yucky area, gave me antibiotic goop and sterile bandages. The site remains clean and much less grotesque although still seems to me about 50% larger.

At the same time a fistula developed near my port access area. This slow growing opening has been around for some time but is now an open wound. The interventional radiology PA recommended removing my port. That's scheduled for Friday.

Last, the ONJ area in my mouth began to hurt again. If other parts of my body show signs of infection, it's no surprise that my mouth would act up. The dentist prescribed ten days of antibiotics.

That's more than enough for one post. Additional stuff coming soon.

April 03, 2015

Happy Passover

The other day I surveyed my haggadah and seder notes and created some new activities. Yesterday, in honor of spring's arrival with Passover, I planted some fuchsia starts. Now it's still a few hours before sunset, but my part of the prep is done. I baked all morning:

  • "Miss Terri's" matzah granola (recipe from my sister)
  • gefilte fish (recipe from DB)
  • a pavlova (in honor of Hanah) and
  • matzah almond roca (otherwise known as Jewish "crack"). It's practically the best thing about Passover - chocolate and salted caramel with nuts on matzah.

Now I am sitting down for the first time all day. The house is (relatively) clean after all that baking, and I'm more than ready for the first glass of wine.

Passover isn't only about food, although it can seem that way. This year because friends are hosting, I get to lead the seder without the stress of also cooking and serving the meal.

Our Rabbi Jill Borodin spoke last Saturday about Pesach. To quote, her overall message was that "we all experience setbacks, affliction, trouble, oppression, but overcoming it is possible with God's help, although things might still be incomplete and messy."

This rings with the most truth I've read about Pesach since I can't remember when. Not everyone has metastatic cancer, but to quote another rabbi, everyone has something. Even Gilda Radner famously said this: It's always something." It's a universal truth which can be easy to forget, when you're caught up in your own tsuris (sorrows). Even when things seem better, while we live, life remains incomplete.

So this is my wish for Passover, also a Jewish new year: May we all increase our awareness of others' difficulties, help when and how we can, and lift ourselves up to the best of our abilities while acknowledging life's messiness.

March 27, 2015

Ibrance update

The first three days of Ibrance were full of mild nausea, moderate fatigue, and general ill-feeling. Thankfully by the Monday I felt like myself again. The fatigue has continued, but who doesn't appreciate an afternoon nap? The first two weeks were basically fine.

Today, the beginning of week three, started with more fatigue (i.e., I didn't get out of bed until after 1 PM), and then moved on to diarrhea. So I am still in my pajamas, even though it's lovely outside and I had planned to run errands and do some garden work. Thankfully Dr G gave me great meds to address the diarrhea.

I'll take the Ibrance for one more week (21 days total), then get a week off. Dr G wants me to have labs taken again in two weeks. I'll see him after Passover and hopefully start another Ibrance cycle if my white, red and platelet counts stay high enough.

So I'm taking today off and will nap again in between doing loads of laundry. And that's life on chemo!

20th anniversary photo

March 19, 2015

Happy Anniversary to us

Yesterday Rik and I celebrated our 20th wedding anniversary. We've had many ups and downs over our two decades (decades!) together. We both agree that we have a strong marriage.

I woke up to this glorious bouquet of exactly 20 red roses from Rik. We ate a lovely dinner of fresh, first-of-the-season halibut with rice and Indian-style lentils, roasted green beans and naan. I had bought a split of French champagne and individual desserts (lemon bar for Rik and tiramisu for me). We went to sleep early (new chemo, working hard, etc.).

I'm not feeling overly philosophical now, so let's just say that I married the perfect husband -- for me.

A week with Ibrance

This week I've been getting used to Ibrance (palbociclib). This is the brand new chemo recently approved by the FDA.

I took the first dose last Thursday morning and felt woozy and slightly nauseous all day long. After asking my nurse, I switched to taking it at night. Her theory: if I took it at night, the nausea etc. might not bother me as much. All weekend long I was still slightly nauseous and tired, but by Monday morning I felt like my usual self. That's continued for the rest of the week.

Other side effects have included joint pain in my wrists and elbows as well as in my hips, but hip pain was a chronic discomfort long before I took the first dose of Ibrance. I've felt moderately fatigued, and sleep about 12 hours a night. If I feel nauseous, I take Ativan and it stops the nausea but also puts me to sleep. So I've napped every afternoon as well.

I've had an odd side effect. I've felt a strong need to urinate, combined with low back pain, that caused me to suspect I had a urinary tract infection. Lab tests indicated no trace of an infection, but I still had that too- frequent urge to "go." Nurse J is looking into this as a possible side effect, and a friend who is on the extended trial at Swedish told me that one of those women reported something similar. We shall see. I've been taking AZO over-the-counter to help deal with the pain and discomfort I experience at night. Last night was the first night I slept straight through from 1 AM (the last time I gout out of bed to pee) until noon.

Now it's time for my nighttime snack. Ibrance must be taken with food. Let's see, shall I have a bowl of cereal? Cracker with cream cheese or nut butter? Half a toasted bagel with butter? My stomach grumbled at that last, so bagel it is.

Do send me your ideas for a quick and tasty late night snack, preferably low in sugar. I clearly have to expand my snacking horizons...

March 11, 2015

Ibrance tomorrow

Today is my last day before starting Ibrance (palbociclib). This is the drug the FDA approved on February 3, 2015 -- only five weeks ago! -- that my health insurer has approved as a treatment for me, and for which they are willing to pay $10,000 per month. And it's a pill! I look forward to being much less tied to the chemo chair.

It has the usual side effects, with a special emphasis on neutropenia, the fever accompanying low white blood cell count. I've been fortunate in this long dance with cancer that only a few chemos have had intolerable side effects. I'm hoping that palbo will fall into the majority camp and be both tolerable and effective.

In the meantime I've tried to enjoy my three week chemo break before starting the new stuff.

March 01, 2015

Chestita Baba Marta!

Welcome Grandmother March fromBulgaria!

In honor of spring's approach, here is a photo of my newest martenitsa, a cute hedgehog wearing a tiny spiffy red and white bow.

February 24, 2015

The latest

On February 3, 2015, the FDA recently approved the newest drug for my kind of metastatic breast cancer, Ibrance (palbociclib). Last week, Dr G told me he wanted me to try it. Last week my health insurance company approved one month's supply. Yesterday the pharmacy called to tell me the drug had arrived. Now that's what I'd call fast service.

Dr G wants me to take it because palbociclib was first used to treat brain cancers and I have brain metastases. Abraxane was beating down my red and white cell counts and my platelets, so it was time to move onto another therapy.

According to the website, "IBRANCE is a prescription medicine that is used along with the medicine letrozole for the treatment of postmenopausal women with estrogen receptor (ER)-positive, human epidermal growth factor receptor 2 (HER2)-negative advanced breast cancer as the first hormone-based therapy for their metastatic disease."

You can read more about Ibrance here. I'll be sure to blog about how it affects me. Let's hope again for good tolerance, limited side effects and fast work at reducing my tumor markers!

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I dance with cancer. Oy!