Day three post-Adriamycin

My personal engine has been revving practically non-stop since receiving 12 mg of Decadron (a steroid) before Monday's chemo. I slept fitfully on Monday night, had plenty of energy on Tuesday to attend four hours' worth of meetings and talk on the phone all evening. I slept better on Tuesday night but woke at 3 AM and was unable to get back to sleep until about 7 AM, then slept until past 9:00. I will report this to Dr G and ask if he will consider reducing the steroid dose back to 8 mg, which is what I received with the Doxil.

I expect some kind of a crash later in the week as the steroids and the long-acting anti-nausea med wear off. I will take the third of three doses of Emend later this morning. If I experience any nausea tomorrow or later, I do have plenty of other anti-nausea meds, plus ginger ale and ginger tea, on hand. I've started carrying the anti-nausea meds and ginger tea bags in my purse again, just in case.

In the meantime it's been pleasant but weird to feel a more normal amount of energy. I have been talking and typing extra fast, although chemo brain still insinuates itself on occasion when I can't think of the specific word I need.

The sun is out after a whole day of cold and rain yesterday, I took a walk with Bobka the Dogka, and hope to have lunch with a friend. That's a good day.

First Adriamycin

Today was my first treatment of regular Adriamycin (doxorubicin -- I've been spelling it wrong. As a grade school champion speller, this distresses me.)

Everything went much faster than I thought it would. I received pre-meds of 12 mg Decadron (a steroid which might cause some insomnia tonight), long-lasting anti-nausea drug Emend and a long-lasting version of the anti-nausea drug similar to Zofran called Aloxi (palonosetron), all via infusion. This took about 45 minutes.

The Adria itself is given via IV "push." Instead of being attached to my infusion pump, the nurse gowns and gloves up, spreads a sterile field over the little table on the side of the chemo chair, and slowly, a few milliliters at a time, pushes the injector of the tube containing the Adria through tubing connected to my port. It took her about 20 minutes, during which time Rik and I chatted with a friend. Then the nurse de-accessed my port and I was cleared to leave. I felt fine all this time -- not talking at the speed of light from the Decadron, and not woozy from the anti-nausea drugs.

Of course we had to stop at the pharmacy to pick up the second and third doses of the Emend, where we learned that my doctor had not requested a pre-authorization from Pacificare, my health insurance company. The pharmacist filled the script anyway, asking that we pay the co-pay and that if Pacificare refused to pay up, we would pay the remaining balance. Since I need this drug because I am allergic to the other anti-nausea pre-meds, I was happy to do so. I'll get on the phone with Dr G's office and Pacificare tomorrow to straighten things out.

Then we were hungry, so we went to Cafe Presse for a delicious Parisian style lunch. Rik had three prawns served over Moroccan couscous with cantaloupe, I had a salad of zucchini, tomatoes and red onion with feta cheese, we shared frites and their delicious baguette. I was supposed to help prevent mouth sores by eating and drinking cold things, so I ordered some incredible house-made chocolate ice cream for dessert. It was too much to eat, and we brought home the remaining scoop.

Later, while Rik ran errands, I sat in the sun reading, too a short nap, and generally relaxed. I feel fine so far, no doubt due to all the drugs. Rik brought me home some juice-only popsicles, and I think I'll spend the evening enjoying them as I ice my mouth.

My favorite household task

It's silver polishing time again. Twice a year, before Rosh Hashanah and Pesach, I take on my favorite household chore and polish the silver. (That's also when I make chopped liver, but more on that later.)

Some might laugh, but polishing the silver is like ironing: you start out with a tarnished (or wrinkled) item, and with a tiny amount of work, your item becomes bright and shiny (or crisply pressed).

When I was a child, I used to ask my mother, "Can I polish the silver? Please??" She, of course, was happy to have me take on a chore, and thus began my life-long live affair with silver polish.

This morning I went to the synagogue to polish the silver. Three of us spent an hour shining up the Torah crowns, pointers, breastplates, and other assorted items. Now I am home and about to start on our silver: trays, candlesticks, tea set, serving pieces, even a pair of earrings in need of a shine. I'll wear rubber gloves to keep the polish off my skin.

Too bad we're not hosting a holiday meal this year so I can show off my bright, shiny silver.

More chemo

Today we saw Seattle's best oncologist and got the results of my recent ultrasound and bone scan.

The ultrasound indicated five liver lesions. This is a good baseline number for testing the chemo's effectiveness in the future. The CT scan I had in July indicated seven liver lesions. Since these two types of scans show different information, it's not possible to say for certain that two of the seven liver lesions are gone.

The bone scan revealed increased activity on my many sites of bone metastases, as compared with the last bone scan taken at this facility in 2005. There are mets in my skull, cervical spine, scapulae, humeri, forearm, thoracic spine, ribs, lumbar spine, sacrum, pelvis and femurs. (Apparently I light up like a Christmas tree.) However, there don't appear to be any new spots of disease, and Dr G would not recommend radiation at this time. He doe not think I am in danger of a fracture.

My tumor markers have consistently decreased since starting chemo in May, so something has been working.

The current plan is to start me on Adriamycin (doxirubicin) once a week for four weeks beginning next Monday, and then re-evaluate. On this low dose regimen I am likely to experience more mucositis (mouth sores). Dr G will try to prevent that side effect with some other meds such as L-glutamine powder (also prescribed by my naturopath), calcium phosphate rinse, Neulasta, chlorhexidine gluconate rinse, vitamin E, Gelclair and "Magic Mouthwash" (xylocaine viscous solution, Zovirax® (alcohol-free), and Maalox® or Mylanta®). Dr G told me I should suck on ice chips while receiving treatment.

I'll also be at risk for infection due to low red and white blood cell counts and will probably experience more hair loss. Hopefully I won't have more issues with hand-foot syndrome.

Rik and I have already decided on a plan of action if the mucositis prevents me from eating. He will feed me milkshakes, smoothies, even Ensure "lattes" -- anything to get calories into me. I dropped five pounds the last time this happened and although Dr G praised me for keeping stable weight, I don't really want to lose much more.

Another good visit

We had another good visit with my mom this past week. It may well have been the best one ever. Mom dealt beautifully with my bald head, saying that "you still look like you." We reminisced about my dad and other family memories.

Mom read to me a love letter that my dad wrote to her two years before they were engaged or married. They must have had a tiff, because in the letter he apologizes and says that she is the only girl for him. I never knew my dad was such a romantic!

I shared a letter Dad had written to me in 1978 when I was studying in Israel for the year. It's something I had kept private from the rest of the family all this time. Mom took home my letter and will share both with my sister.

I leapt right back into meetings, appointments etc. but had a good day. Now I am off to the onc and will report in on his recommendations soon.

Feeling good

The past few days I have felt a little better each morning. Today I noticed that my hands are almost completely healed, with no new areas of dead skin. Although I continue to take a nap every afternoon, I've also had the energy to take a long walk, shop at Costco, and enjoy my visit with my mom.

I see the oncologist later this week and will know more at that point of how effective the chemotherapy has been. Until then, I plan to take it easy, sit in the sunshine, and cuddle with my dog and husband (not necessarily in that order).

Happy mets-iversary to me!

Eight years ago today I got the terrible news that my cancer had returned and spread to my bones. I went home on crutches, fell and broke my left femur. It was a long recovery but I am incredibly pleased to say I am still here, eight years later.

It's an odd feeling to outline mortality predictions. At the time, in 2002, 50% of women with metastatic breast cancer lived one year (I asked my oncologist). I've outlived that prediction many times now. Someone has to be on the far end of the statistics curve, and I think I should be one of those folks.

My mother arrived for a week's visit and we are holding a dinner party for our closest friends tonight. The menu, of course, includes three of my favorite foods: champagne, whipped cream and chocolate. (I couldn't figure out how to include the potato chips.) We'll have champagne to toast, challah, zucchini minestrone, ramen salad, roasted green beans with Marcona almonds, halibut in garlic-parmesan topping and conclude with homemade tiramisu.

This delicious meal, plus celebrating with family and friends, should be just the "pick-me-up" I need!

Bone scan saga

Bone scans have been a regular part of my cancer experience since the day I broke my leg in 2002. I don't remember that one (I was sedated) but usually they go something like this:

1) Have port accessed by specially trained nurses at Swedish Cherry Hill Ambulatory Infusion Center
2) Go to bone scan location in hospital basement and receive injection of radioactive dye
3) Head back upstairs to have port de-accessed
4) Drink lots of water, get a snack and amuse myself for a couple of hours
5) Return to bone scan location
6) Use the toilet and
7) Lie on scanner bed, get strapped in and covered with warm blankie for bone scan (duration about 60 minutes)

Luckily, they always let me listen to music during the bone scan. Before the days of iPods I brought CDs; now I just set the iPod to "shuffle" and enjoy random music for the duration.

Yesterday's bone scan was at Seattle Nuclear Medicine, not at Swedish's Cherry Hill location. SNM has some fancy, new machine that can read your bone scan after less than an hour's wait.

People who don't have ports must have an intravenous line started by a technician. I wanted to use my port but never heard back from the doctor's office to see if they had arranged for the Swedish Cancer Institute (in the building next door) to access it. As I sat down in the chair for the tech to start a line, my cell phone rang: yes, I could get my port accessed.

Well, I was already at the bone scan building, and I will let anyone try to start an IV line once, so I asked to lie down for the experience. Sure enough, my vein collapsed as the tech was trying to start the IV. That was it, I told him to stop and that I wanted to have my port accessed. He was a good technician; he listened to me. I walked over to the Cancer Institute.

After a 30 minute wait, a nurse was available to access my port. She did, I headed back to SNM, and received my radioactive contrast injection. Come back in 45 minutes.

I walked back to the Cancer Institute, which was extremely busy. I suggested to the receptionist that I could return after my bone scan. I went out on the street, found a new crepe place that had been open only three days, and had a freshly-made crepe with bananas, strawberries, Nutella and (sadly) fake whipped cream. I drank a huge glass of water.

Back to SNM. I went straight back to the bone scan room, used the toilet, took off my glasses and shoes and tried to get comfy on the narrow scanner bed. I wear an eye mask for these scans, so I can't see how close my nose is to the scanner ceiling. This scanner was in the shape of a CT machine, like a donut with a hole in the center, so less claustrophobic than others.

I put in my earphones and set my iPod to shuffle. The tech strapped my arms to my sides, covered me with a warm blanket and started the scan.

I actually fell asleep for the first 20 minutes. But after what felt like an hour, I really had to pee again, my back hurt from lying on the scanner bed and I was beginning to get really uncomfortable. I called out "How much longer?" and was told three more minutes.

Those last three minutes felt like another thirty. I had to pee. I wanted to move, or at least wiggle. My back ached. I had to pee! I asked again, how much longer, and heard back "only a minute and 30 seconds." Believe me, I sweated out those last 30 seconds.

The tech released me and I ran into the bathroom. I got dressed and headed back to the Cancer Institute, where all was quiet and a nurse de-accessed my port immediately.

Of course, I got stuck in rush hour traffic on the way home. Total elapsed time, door to door? Four and a half hours. Total aggravation? Extreme. From my doctor's office not calling to tell me he had written orders to get my port accessed, to the collapsed vein, the walking back and forth between buildings and the hour-plus scan duration, this was an afternoon from hell. I was so exhausted I fell asleep for an hour on the sofa.

This is one day in my life in Cancer Land.

Beating the heat

We've had record-breaking heat in Seattle the past three days. It's been in the mid-90s, so hot that I literally could not go outside. I spent most of the weekend with curtains and shades drawn in the house, fans blowing, and wearing the lightest weight summer clothing I own: short shorts and silk or cotton sleeveless shirts. (It was practically too hot to wear a bra, but I had to draw the line somewhere.)

Wearing a scarf or hat on my head became intolerable after about 11 AM. I gave up and have been walking around with my 1/4 inch long hair showing. Thankfully it doesn't bother Rik to see me bald. I simply could not handle having anything, no matter how light, on my head.

We drank a pitcher of strong, sweet iced coffee with milk, just what I used to enjoy in Israel. Of course, in Israel they add some vanilla ice cream, which we did once on Saturday afternoon. That was cooling!

The rest of my eyelashes and eyebrows have pretty much fallen out. It's good that I have several weeks' practice drawing them on with eye makeup. It's the first thing I do after getting out of the shower and using sunblock -- draw on my face.

Tapering down from fentanyl

While Dr G was away on vacation, his colleague Dr Hammond was willing to write a prescription to taper me down from the 50 mcg fentanyl patch. With narcotics, it's especially important not to stop "cold turkey." The plan is to slowly decrease the dose and avoid withdrawal symptoms.

Because I was already at the hospital to get Zometa, I took Dr H's scrip for 25 mcg fentanyl patches to the Cherry Hill hospital pharmacy. They were able to fill it with a minimal wait. The new patch is quite tiny, less than one-quarter the size of the old one. I will replace the patch every 72 hours and then let Dr G decide what else to do when I see him next week.