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.