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.

Old friends

Today was my once-every-four-weeks treatment with Zometa, the bone strengthening drug I have taken for the past five or more years. It's given by IV infusion and takes about an hour. The whole time I have been on chemo lately, I've received my Zometa as an additional drug, given after the chemo. Since I am on a short chemo break for three weeks, I took the opportunity to see my friends, the Ambulatory Infusion Center nurses at Swedish's Cherry Hill campus. These are the women who have cared for me since I fell and broke my left femur in 2002, eight years ago this week.

Everyone was pleased to see me doing so well after my three-plus months on chemo. Nurse N chatted with me about everything in our lives and double checked that my hands are indeed recovering nicely from the hand-foot syndrome. Nurse J, the charge nurse who has cared for me the longest, noticed my hair loss but told me I looked beautiful in my pink flowered scarf and dangly earrings.

Seeing these women was good for my soul. Being treated at the Cherry Hill was good for my body also. Not only did they have my Zometa ready when I walked in (no waiting here!). Because I hadn't eaten lunch, the hospital provided a meal, not a cardboard sandwich. I ordered from the in-patient menu and enjoyed a taco salad with cheese, salsa sour cream and guacamole, small vegetable plate, iced decaf mocha and a small bottle of Perrier.

I am so glad that Dr G is flexible enough to let me receive treatment at Swedish instead of in the Minor and James infusion center. Should the opportunity to get Zometa at Cherry Hill arise again, you can be sure I'll ask to go there and see my friends.

Lymphedema

I was so worried that my lymphedema would flare up with the hand-foot syndrome and thankfully that has not been the case. I have been continuing to wear nothing during the day and to bandage at night.

A few weeks ago I ordered (through a medical garment provider) a Caresia bandage liner to wear at night instead of wrapping. It's a big blue padded garment, very soft, with foam and stitched channels like quilting that break up edema. Unfortunately, when it arrived it was too big in the upper arm and perhaps a tad too tight in the hand. So the provider, Donna Martin of Martin Medical, will return the Caresia liner and recommended I get a similar but custom made-to-measure garment from another manufacturer.

It's too bad. I was sleeping really well with the Caresia garment, and it was very easy to put on and take off. But because it provided no compression above the elbow, it's not a good choice for me. I hope Donna will be able to return the unusable garment, negotiate successfully with the insurance company to pay for the custom garment, and get a new one to me quickly.

Staying on fentanyl

I got smart and called the oncologist's office this morning to ask a nurse if I should continue to stay on the fentanyl patch. She asked good questions:

How long had I been on it already? (2 patches x 3 days each = 6 days)
Did I have any breakthrough pain? (some itching where my hands are healing)
How affected are my hands? (almost every affected area has opened, the dead skin has come off and those areas I've covered with bandaids)
Have I had any side effects? (a little constipation, easily addressed with prune juice)

The nurse's recommendation was to stay on the fentanyl patch for another two weeks to be sure that I have completely recovered and that I have no pain while recovering. To be sure, she is going to check with the oncologist covering for Dr G while he is on vacation and will call me back by the end of the day with whatever the doc recommends.

I'll see Dr G in two weeks anyway and he can supervise my slow reduction off fentanyl.

This was a great customer service experience. The receptionist was able to connect me with a nurse right away and the nurse listened to my concerns. That's one reason why I like my doctor so much -- he hires good people!

Healing hands

The dead skin on my palms where the blisters developed is starting to crack and come off. I have trimmed some of it away as well and sport bandages on my left thumb near the tip and at the base, and on the tips of the first two fingers. My right hand was not nearly as affected as the left. There is only one area that may split and peel off, at the base of the right thumb. Dr G instructed me to keep the open, new skin covered. It is pink and healthy in appearance but some of the blisters were so deep that it may take days for enough layers of skin to re-grow.

I still experience some tingling in my palms, even while wearing the fentanyl patch. This might be the itching sensation I associate with healing. I intend to wear this second fentanyl patch for the full 72 hours and then evaluate if I have recovered enough to stop using it.

The trimming of blisters reminded me of my high school and college years, when I used to dance barefooted every week at Israeli and international folk dancing. In the summer we danced outdoors on a cement plaza. My feet blistered every time, and on the following morning I would trim off the dead skin. Then I'd repeat the whole thing again the next week. I was young(er) and stupid(er) then.

Control

Although deep in my heart I know that control is truly an illusion, I am feeling more in control today than any day in the past ten. My pain is well-managed by the fentanyl patch, my mouth and throat are healing, and I have been able to talk and eat comfortably. Having to be silent because of pain in my mouth has been really hard on me!

We saw Dr G yesterday and he has decided to discontinue the Doxil completely. Instead, after my hands heal, he will start me on doxorubicin (Adriamycin). This is basically the same drug as Doxil, but not in the time-release formula that caused the hand-foot syndrome. I will continue to be at risk for mouth sores and other infections due to low white blood cell counts. Avoiding crowds, shaking hands and hugging people as well as frequent hand-washing during the nadir period will help keep me healthy. The "rubi" part of the name of this drug comes from its bright red color.

After Dr G. we enjoyed a delicious Mexican lunch at Galerias on Broadway. Then we went to my new support group at Swedish's Cancer Institute. Although we had to leave early for another appointment, I am enjoying this group and appreciate both the support I get and that I can offer to others, as someone who has lived with advanced cancer for eight years.

We left group early to see Dr Bufi the naturopath, who will keep me on the same supplements during the Adriamycin treatment: multivitamin, B6 complex, L-glutamine powder, calcium-magnesium and a digestive enzyme.

Although yesterday was a day full of medical appointments, I was pleased that I had the energy to get through them all and enjoy a romantic meal with Rik.

Missing Josh

Because my scheduled ultrasound was cancelled early yesterday morning (even medical personnel sometimes get sick and can't come to work), I had enough energy to attend Josh's funeral. I think more than 500 people attended. Rabbi Borodin did a superb job of coordinating the many eulogies and speaking herself of the tragedy of Josh's death.

Who gave eulogies? Kim's family rabbi from Tacoma. Josh's brother and sister. A congregant who was his summer camp counselor and teacher. A childhood friend, a college friend, and a friend he and Kim met after moving back to Seattle. His wife, Kim. Rabbi Borodin. Another Beth Shalom member chanted El Maleh Rachamim (God full of compassion) and led us all in singing Psalm 23.

I was struck by how every speaker identified Josh as a man who always engaged with people. Josh could interact directly and immediately on topics large and small. Certainly in our conversations over the past few years, he could crack a joke, talk about living with metastatic cancer and preparing for his own death.

Being a writer, it was no surprise to me that Josh chose to write his own obituary. (I have done the same.) His love of family and friends took precedence over everything else in his life. Josh constantly reminded me to live each day to the fullest, no matter how tough the day might be. And from him and the too many other friends I have lost to cancer, I have learned, again, how to be fully present in life, even in the face of death.

Zichrono l'vracha, may his memory be a blessing to all who knew him.

Fentanyl miracle

Our local pharmacy needed a few days to stock the fentanyl pain patch, so I had been continuing on the Vicodin every four hours. Yesterday afternoon we picked up the patches. You unpeel one and stick it high up on the arm, near the shoulder. It has an adhesive backing. Because the patch takes about 12 hours to become fully effective, I continued to take Vicodin until last night. The skin absorbs a constant dose of pain medication, so that your pain is constantly controlled and there are no times when pain increases at the end of one dosing period and before ou can take another pill.

I woke up this morning and my hands felt a little itchy but not the burning, stinging pain I had been experiencing. Even the tender tissues of my mouth and the sore in the back of my throat are less bothersome. I was able to wash without feeling pain while I held the bar of soap, brush my teeth, swallow pills and eat breakfast with much less discomfort. Asking for this pain patch might have been the smartest thing I've done so far in regard to managing the side effects of Doxil.

Josh Isaac

My friend Josh Isaac died yesterday. Here is the obituary from his blog.

Joshua Bondi Isaac 1972-2010

Joshua Bondi Isaac, age 38, was proud of the life he lived. He died on Monday, August 2, 2010 after a decade plus battle against epithelioid sarcoma.

Above all he was most proud of being a husband to beautiful wife Kim Haas Isaac, whom he met in 1991 at Camp Solomon Schechter where they were both camp counselors. They married on August 20, 1995. A source of constant joy, the two had three wonderful children Jacob, Sam, and Sophie. He cherished time with his family and, despite the protracted battle with cancer, he made the most of the last few years devoting that time to his wife and kids. They took many trips together and made lasting memories celebrating all moments of life by living each day as a blessing. Although he was dying, these were the happiest days of his life.

He was born and raised in Seattle. A product of the public school system, he graduated from Roosevelt High School in 1990. He went on to pursue his education at Whittier College, where he was active with the Orthogonian Society and Whittier Scholars Program, where he made lifelong bonds of brotherhood with members of his pledge class, the Untouchable 11. He graduated with a self designed major called Images and Thought.

This built on his love for writing and film, which he took with him when he began his career at the Shoah Foundation. He worked there as a librarian helping to document Holocaust survivor testimonies. In 1997, he moved to Baltimore with his wife Kim and landed a job in the corporate communications department of Baltimore Gas and Electric as a writer. While working in Baltimore, he continued his education achieving a Master’s Degree in Creative Writing and Publication Design. In 2001, he moved his family back to Seattle where they bought the house he grew up in from the estate of his parents. He continued his career in corporate communications joining Microsoft in 2002 as a writer and media producer, where he worked until 2010.

First diagnosed with cancer in 1998, Josh endured multiple chemotherapies, radiations, and surgeries over the years including the amputation of his left hand. Josh used his creativity to help deal with the situation, making a documentary in 2007 called My Left Hand, which screened locally and won many honors and awards.

Among his hobbies, he loved creative writing and poetry, sharing his works through poetry readings and on his blog. He remained active in the Jewish community and continually supported Israel, keeping involved with Congregation Beth Shalom in Seattle, the synagogue his parents helped found.

Josh is preceded in death by his parents Walter and Miriam Isaac. He is survived by his wife Kim, sons Jacob and Sam, and daughter Sophie, his brother Marc and their dear family, Suzie, Eli and Rina, his sister Shauna and her husband Alan. He is also survived by his in-laws and close family Henry and Kate Haas, Gerda Haas, David and Sharon Haas, and Sue and Sarah Haas. He also will be missed by the Rozanek family in Bellevue, uncles Hymie and Freddie Rosenblatt and family in Winnipeg, and the Pinsky family in Vancouver. He also leaves several good friends behind too. He’ll be loved and missed by many.

The Isaac family extends their thanks to Beth Shalom Community, Microsoft Corp., and the UW for their unyielding support during this trying time.

In lieu of flowers, contributions may be made to the Isaac Children’s Educational Fund at any Wells Fargo Bank account #9688563676 or to Congregation Beth Shalom or The Northwest Sarcoma Foundation.

Quick update

I saw Dr G yesterday and he decided to treat whatever is going on in my mouth in three ways: continue the anti-fungal meds; take valcyclovir in case it's a viral infection; swish and swallow Magic Mouthwash and GelClair for pain. M Mouthwash didn't work too well. It numbed my lips before it got to my throat!

He also prescribed a Fentanyl patch when I asked. I'm already taking the maximum daily dose of Vicodin and I wanted to avoid the ups and downs of pain relief as it wears off before I can take the next dose. The patch delivers a constant stream of pain relief directly through the skin. I also received a prescription for morphine in case of breakthrough pain.

The hand-foot syndrome is causing the skin on my palms to blister in several places, like third-degree burns. No blisters have opened yet. I really don't want to take DMSO (the chemical solvent) even if it helps with the pain because it is so highly absorbed into the skin. So onc gave me permission to "cream the living daylights" out of my hands. I'm using Udderly Smooth hand cream.

It appears that I will not have chemo again until the hand-foot thing resolves and then when I do, it will either be a lower dose of Doxil or another chemo with less risk for hand-foot syndrome.

Oy.

More pain

My pain from the hand-foot syndrome increased a lot over the weekend and so has the discomfort in my mouth and throat. After spending most of Saturday and Sunday on the sofa and taking close to the maximum daily dose of Vicodin, my plan is to try to get in to see the onc tomorrow if possible. Plus I will call the naturopath. Someone ought to take a throat culture and treat whatever is going on in my mouth, and I'm hoping to get moved onto different pain meds. My left hand is also puffy from lymphedema and the hand-foot thing and I am reluctant to bandage for fear of making the H-F syndrome worse. It's a vicious circle.

Of course my fear is that if I can't manage the side effects after only two rounds of Doxil, how will I handle four more treatments? Maybe I can persuade Dr G to reduce the dose or maybe he has other ideas.