June 29, 2011

CA 27.29 drops!

I asked for the results of last week's tumor marker test while getting a blood draw today. It had dropped by more than 125 points from the previous test, about a month ago, and had fallen from April's high of 299. This bodes extremely well for the Abraxane-Avastin combo, if the numbers are still low after a month off chemo while dealing with the shingles. I will see Dr G tomorrow and get the results of today;s test as well. Here's hoping for more falling tumor markers!

Toronto trip

Here's a quick-and-dirty recap on our trip to Toronto.

Feathers B&B
We arrived Thursday night and after getting lost trying to find the intersection of Bloor and Bathurst from the airport, finally made it to Feathers B&B. I read about it online -- it's a lovely Victorian home with a gracious host. May keeps up the house beautifully and does lay a yummy cold breakfast spread. The house is a bit on the shabby side (after all, it's very old), the beds and pillows were soft, but everything was very clean.

We spent Friday buying Rik a new Tilley hat, visiting a friend from my days in Washington DC and relaxing a bit. Rik's parents showed up from Montreal around 6 PM and after changing clothes, we all went north to the Shabbat dinner hosted by friends of the bar mitzvah boy's family. Imagine big hellos all around, with me trying to remember who is who from the last time, four years ago. And of course everyone trying not to notice that my head is wrapped in a shmateh.

On Saturday morning we went to the synagogue early because Rik was honored with the Kohen aliyah (he did a great job). Services were at Chabad at Flamingo, a new, large Chabad congregation a few blocks from the family's home. I am not sure if the family belong to this shul or if they just attend services there. Things in Toronto seem more fluid in this respect than in Seattle, where almost no synagogues permit a celebration for non-members.

Mum and I sat upstairs in the women's balcony, on comfy chairs with very high headrests. Sad to say, not one woman wished me a good Shabbes or even said hello. The rabbi made his way upstairs with the Torah scroll and he was very pleasant, clearly recognizing who was not part of his regular attendees and welcoming us. He also spoke for more than five minutes before every one of the seven aliyot (oy!) and also gave a kind of rambling, twenty minute sermon. I enjoy services, have reasonably good Hebrew and go to our Conservative shul every week. This service was chaotic in the typical Chabad style and lasted from 9:15 AM to 12:50 PM. By the end, one lone man was trying to say the mourner's kaddish while around him, everyone else was taking off their tallit and talking loudly. I really did not enjoy the service. To his credit, the bar mitzvah boy read the entire kriah in excellent, clear Hebrew as well as the haftorah.

After lunch and a Shabbes nap, we went to visit Mum's girlfriend of 60-some years. Her daughter, son-in-law and grandson (and girlfriend) joined us for a marvelous sushi dinner, and our visit lasted several hours.

On Sunday morning we met other cousins of Rik's for breakfast, and then Mum, 'tB and I walked along the main drag on Bloor shopping and browsing, while Rik met up with his high school photography teacher, who had driven from Montreal just to see Rik for the first time in many decades. We all enjoyed the afternoon, came back to the B&B to nap, and then changed for the bar mitzvah party.

The party was very east coast and kind of over the top for what we experience in Seattle. In the lobby of the big Conservative synagogue they had rented, there were hors d'oeuvres, an open bar, a photo station (get your printed photos at the end of the evening), a trio if singers and LOTS of people. We arrived at 5:30 PM to be in a formal photo with the family and the doors to the main room didn't open until 7 PM.

Us at the party -- me in the wig
The room was decorated with a baseball theme, a large stage with an enormous video screen showing a special video of the boy plus highlights of major league baseball. (Did I mention that the dad is a photographer?) Twenty tables of ten each -- lots of kids -- plus a long table for the immediate family at the back of the room, facing the stage. A DJ, dancers, and piped music. A horah introducing the boy, with plenty of dancing. I tell you, it was hard not to get up and dance, but in addition to trying to keep myself from shaking hands, hugging and kissing all weekend, I'd been warned that the boy was running a fever of 103 degrees. I asked the gentleman sitting next to me, in what respect does this differ from a wedding? His answer: the decor is probably different.

We were served an appetizer of a crepe with mushrooms in sauce; then salad. Plenty of speeches. By 9 PM they were serving dinner (roast chicken AND roast beef, vegetables, potatoes). Around 9:30 we four gave up. The music was too loud for any of the adults to talk to one another, we had been there for four hours, and I'm not crazy for parve kosher desserts. (If it doesn't have real cream and butter, I really don't want it.) We left and learned that the family didn't go home until 12:30 AM. That includes both sets of grandparents, who must have been in their 80's.

Rik eats a smoked meat sandwich!
On Monday morning we joined the close family and out of town friends for brunch. The boy was still highly feverish, and so we left on the early side to ramble around the city before taking the 'rents to the train station. Rik and I napped and in the evening went to Pancer's deli for Montreal-style smoked meat sandwiches. So delicious, and not salty the way I remember the smoked meat from my last trip to Montreal. (The other choice would have meant taking yet another drive north to Thornhill, and Rik had already driven there twice a day, every day during our stay.) We crashed early and made our way to the airport at the crack of dawn on Tuesday. Everything again went smoothly on our trip back to Seattle, and we were happy to be in our own home, with Bobka the dog, again.

June 28, 2011

Back on line

We've been away to Toronto for a family bar mitzvah. We had a wonderful time, and I promise to tell all about it in the coming days.

I think it's safe to say that I recovered nicely from the gamma knife radiosurgery. We hopped on the plane two days after I was treated, and I had no troubles with swelling or even in decreasing the steroids to zero. There are still two healing marks on my forehead (and probably on the back of my head, but I can't see there) where the frame was attached.  Given that I am practically bald from the chemo, although eyelashes and brows are still holding on for now, I don't worry about how quickly these marks will heal and fade. They're covered nicely by hats, scarves, etc.

I see Dr G in two days and will likely get the news if my tumor marker continued to fall or has been at least stable during the month-long chemo break to treat the now-healed shingles. I imagine he will have some kind of plan for a next step. Personally I am holding out for enough decrease in my liver tumors that we can consider cyber knife for any remaining liver tumors and maybe try a maintenance estrogen fighter, similar to what worked for me for so many years. But who knows.

In the meantime, if you have been following today's news on FDA hearings about Avastin, know that I had just started Avastin in combination with Abraxane. Although we saw good early results, it's impossible to say which drug is responsible for those results. I've had three or four doses of Avastin, certainly not enough to call it a lifesaver. Still, I would be in favor of the FDA approving it for use in advanced breast cancer, if only because ii appears to work for some women and we all want to keep as many options open for as long as possible. But who could possibly afford $88,000 a year in drug payments if insurance companies stopped covering Avastin, should the FDA rescind approval for its use in treatment of metastatic breast cancer?

Why should women have to die because of the price of a drug and the manufacturer's need for financial compensation? Genentech, get with it and stop seeking over-the-top profits.

June 22, 2011

Gamma knife the day after

I felt really well today Ran a bunch of errands, had lunch with a friend, went to an afternoon meeting, came home and did the ironing, made mac and cheese for a choir potluck, went to the choir potluck, and am now ready to crash. (Actually, I was ready to crash at 8:30 PM in the middle of a song, but a slice of "white Russian" cocktail flavored cake perked me up right away. Especially the Kahlua flavored whipped cream...)

I think the gamma knife didn't slow me down too much but I also think I will try to take it easy for the next few days. Don't be surprised if I decide not to blog for a bit.

June 21, 2011

Gamma knife

As requested, they did give me both two mg Ativan and some Versed. Here's what I remember about the procedure:

We arrived on time, checked in at the main info area, and went back to the gamma knife office, waited until someone eventually realized we were there. Nurse Beverly took good care of us, brought us to my personal waiting room with a big medical "throne" for me and some chairs for others. There was a nurse from Bellevue assisting Beverly so that she could learn about gamma knife up close and personal. Because I had been told it was okay to wear my own clothes, just no zippers or metal, I didn't have to put on the yucky hospital gown It always makes me feel more in control if I can wear my own clothes.

After conforming my name and birthdate, Beverly walked us through the day, so to speak, and told us what to expect.

Not me but another patient
getting the framework attached
First they gave me two mg Ativan, which hit full relaxation stage in about 30 minutes. Then the nurses helped Dr Foltz, the neurosurgeon, drill holes in my head for the framework, placing the framework on my head, and tightening it to perfection. I remember this clearly. The lidocain used to prevent pain while inserting the framework did not actually prevent pain, although it made it more manageable.

MRI machine
Dr Foltz lefts and I was taken to the MRI area by wheel chair. Mostly I remember getting onto the MRI bed and trying to arrange myself  they way they wanted me. I must have spelt through the entire MRI, since the last thing I remember is the nurse placing a washcloth over my eyes so I wouldn't be able to see in the MRI tube. The narrow, enclosed tube is what gives many people claustrophobia,

After the MRI we went back to my waiting room while Dr Vermeulen, Dr Foltz and a physicist coordinated my treatment plan, based on whether my three brain mets had changed in any way.  (I neglected to ask if they had changed.)

Gamma knife machine
Once all three practitioners agreed on how to treat, it was off to the treatment area. I recall a large white machine with a bed extruding from it on top of a round floor, maybe a round room. They asked me to get up on the bed and wiggle into the proper position, which was surprisingly tough given the three pound framework on my head and my being loaded with Versed and Ativan. Eventally I made it into position, because I don't remember the rest of it at all.

I must have been wheeled back to my waiting area, where Nurse Beverly and her assistant in training successfully removed all the framework. Again, it hurt some but was not overwhelmingly painful. My head was left very numb, kind of like what you experience when going to the dentist and one side of your lip and jaw feel funny when compared to the other. It felt like I was wearing a plastic cap on top of my head. They placed bandaids on each of the front two insertion spots, but just used antibiotic ointment on the back two spots.

I am on a slowly reducing plan of steroids to prevent swelling at the insertion sites and at the spot which got zapped. I go in for a follow up in one month and will get another MRI at that time to really see what's going on.

I'm told to expect some fatigue and sleepiness today and should be fine tomorrow. I've already had one major nap on the hammock Rik set up in the back yard. I will keep you posted as things develop.

June 20, 2011

Remembering Dad z"l

Last night and today marked the third yahrzeit, or anniversary, of my father's death. Last night my mother, my sister and I all lit yahrzeit candles, which burn for a little more than 24 hours and remind us of Dad whenever we walk past the candle. Today I woke up very early in order to attend morning minyan. Since today is a Monday, we read from the Torah, and as the daughter of a kohen and someone observing a yahrzeit, I received an aliyah to the Torah. I also held the Torah while I sang El Maleh Rahamim, God full of compassion, traditionally sung at funerals and on occasions when we remember our dead loved ones.

I took that moment to talk a little but about my dad. Since I had eaten the first real tomato of the summer season just this past weekend, I reminisced about how proud my dad was of his home-grown tomatoes, which he planted where the dryer vented hot, moist air outdoors, kind of like a mini-greenhouse. For a city boy who was born and bred in the Bronx, he sure took to suburban life in Cincinnati and loved his garden. (I chose not to mention how he often made us bacon, lettuce and tomato sandwiches on Sundays after we came home from religious school, and never saw the irony in eating bacon after learning about Judaism.)

My dad would have been proud of Rik and I preparing orange juice, bagels, cream cheese and lox, and a little chocolate for everyone to nosh on after services ended. Dad loved to feed people, the more the better. I remember one year when my Young Judaea group put on an Israeli cafe, complete with authentic food. Dad had never been to Israel, never eaten falafel, but he could tell we were struggling to get it right and stepped up to the range to demonstrate the finer points of deep-fat frying to a bunch of teenagers. As I recall, everything was delicious.

But even surrounded by Rik, friends and my synagogue community, I felt strongly that I wanted to be with my mother and sister today. It's been more than two years since Rik and I were back for a visit, although my mother has come here regularly. My sister and I haven't seen each other since the unveiling of my dad's gravestone, and that's a long time. We talk on the phone and catch up via Facebook, but it's not the same as a family visit. I am looking forward to when we all get together later this summer.

From the OU:

O God, full of mercy, Who dwells on high,
grant proper rest on the wings of the Divine Presence -

in the lofty levels of the holy and the pure ones,
who shine like the glow of the firmament -

for the soul of (...)
who has gone on to his world,

because, without making a vow,
I will contribute to charity in remembrance of his soul.

May his resting place be in the Garden of Eden -

therefore may the Master of Mercy
shelter him in the shelter of His wings for Eternity,
and may He bind his soul in the Bond of Life.

Hashem is his heritage,
and may he repose in peace on his resting place.

Now let us respond: Amen.

June 19, 2011

Ranger Rik rescues his chick's mitts

We have a built-in section in our closet with shelves for shoes and a rod for clothing to hang from. Late in the afternoon of this day-long comedy of errors, I realized that I had dropped one of my fingerless gloves down behind the top shelf onto the floor. Of course, it fell into a practically invisible and hard-to-reach corner. Ranger Rik to the rescue!

After duct-taping a small hook onto the end of a yardstick, Ranger Rik managed to pull up a dust covered glove. Then he saw something red. Is it the missing red cashmere sock? I take a look. No, it's one of the pair of Canadian 2010 Winter Olympics mittens I bought in Vancouver this year. On sale even. So Ranger Rik manages to pull up the mitten.

Well, if there's one, where's the other one? I look in every coat and jacket pocket -- no mitten. They both must have fallen behind the built-in and onto the floor.

Using all his ingenuity, Ranger Rik clears everything off the top shelf and hoists himself up so he can really see. Sure enough, there's the other red mitten. Unbending a wire hanger (my idea), he manages to grab hold of the missing mitten and bring it up, covered in dust from wrist to fingertip. (I did originally suggest he use a hockey stick, but that would be sacrilege.)

Hence the title of our story -- and did we need a giggle after all the things that went wrong today:

Ranger Rik rescues his chick's mitts!

Hair loss

I woke up this morning with hair loss that is so spotty, I looked like a clown, all tufts and patches of thinning hair that don't quite cover the bald places. It was so disheartening to realize that yesterday was the last day I could get away with nothing on my head -- and it was Shabbat, so I wore a hat to shul.

I don't know why hair loss is so powerful for women, but can be traumatizing. Somehow I thought I could avoid it, even when my hair has been thinning for weeks. I guess I wanted to have one more week with my own hair. But now it's entirely clear that in order to look like a normal human being. I have to start covering my head with a scarf or a hat or my wig.

It was a very emotional morning. I snapped at Rik when I thought he wasn't being supportive enough. He suggested that maybe he was offering solutions when I didn't want them. We worked it all out but it was a frustrating few minutes for me, between freaking out at the hair loss, trying to decide what to do about it, and wanting (and getting) emotional support from my hubby. That's why I married him -- Rik always comes through for me.

Then I called Cherie at Essence Salon, who last year buzzed off my hair as it began to fall out. Rik and I remembered how tough that was for me, so I asked Cherie if she could just trim up the wispies instead. She did a great job, and I now feel as though I have a really short haircut with a few bald patches. It's short enough to go hat-less around the house, but I feel it's more under my control this way. And bless Cherie; she wouldn't accept any payment. This is her mitzvah work, her charity project for the American Cancer Society. Next time you need a hair cut or other salon work, please consider going to Essence. You'll be happy with the result and you'll be supporting a business owner who does the right thing for cancer patients losing their hair.

We took out my wig, tried it on and fluffed it up. It looks OK, not great -- it certainly looks like a wig -- but this way I have the option of looking like I have hair if I want it.

I pulled out all my scarves and put them in the big basket on my dresser, so I can find exactly the one I want for the day when I get dressed. And I pulled out the cute black and white polka-dotted cap my sister sent me last year.

I guess I am as ready as can be to face the world bald again.

June 17, 2011

Busy bee

I've been extremely busy this week. Two synagogue meetings at night; choir rehearsal (which I bailed on, couldn't be out three nights in a row); a number of medical appointments and even some errands. They all combined to make me totally pooped.

Tuesday's and Wednesday's activities led to me crash on the couch at 7 PM Wednesday and not moving until almost 10 PM. Yes, I fell asleep in front of the TV, waking up at random moments and falling back asleep again.

That gave me some energy for Thursday (today). I had only one appointment, needed to stop by Dr G's office, and had one errand to run. Somehow that turned into hours on the road.

I do need a new lift for my left shoe. Either my leg has shortened  or the nine year old lift has compressed too much from my standing on it all this time. I am trying out a new, 15 mm lift. If it doesn't work, they'll make me another 3/8 inch lift (the former size). The new lift feels higher in my shoe and will take some adjusting. I don't know if it will fit at all in  my dress shoes. I think I will need to bring my new shoes back to Nordstrom and ask them to exchange for a larger size. Luckily, Nordstrom has the reputation of providing such good service that I should be a happy customer.

I had to pick up a prescription at Dr G's office and take it to the in-house pharmacy. This simple task ended up taking half an hour.

I did manage to eat lunch at Cafe Presse. I particularly enjoyed the chocolat chaud, so thick a spoon can stand upright in the cup and served with an even more generous blob of freshly whipped cream than I could manage to eat. If only I could have taken the leftovers home....but they would have melted in the car. Did I mention it was a nice day and the sun was shining?

My one errand of the day took me to the MAC cosmetic store in the U Village, where some kind of sidewalk sale was happening. Of course I had to check out everything, from shoes to clothes to kitchen ware. Nothing spoke to me, but just being there consumed almost an hour.

I stopped at shul to read something and ended up spending almost 45 minutes talking wit the rabbi and the executive director.

I finally arrive at home at 4 PM, having left the house at 9:30 AM. I crashed on the outdoor lounge chair and actually slept for an hour. Then I folded laundry, made up the bed with clean sheets, called my mother, and heated up something to bring to Shabbat dinner. I don't know who taught me this, but I learned from someone: never go anywhere empty-handed.

Now we are home again, it's finally getting dark, and I am about ready to go to sleep. I can't tell you how many times I felt my eyes closing today, even when driving the car. I am simply too tired to be trusted, and I need to listen to my body.

Laila tov, bon soir, good night to one and all.

June 14, 2011

Happy Birthday to Rik!

Lucky guy, he got a Harvey Wallbanger cake.

For those of you not in the know, this cake was very popular in the seventies and one of Rik's childhood favorites. It's a plain yellow cake made with orange juice, vodka and Galliano liqueur. Since I prefer to bake from scratch, and this cake was usually made from a mix, here is the (parve) version I developed.

Parve Harvey Wallbanger Cake
(or should we call it Jill Wallbanger Cake?)

For Cake:
1 cup sugar
1 cup oil
3 large eggs
2 teaspoons vanilla extract
3 cups flour
1 ½ teaspoons baking powder
½ teaspoon salt
1 cup orange juice
¼ cup vodka
¼ cup Galliano

For Glaze:
1 cup powdered sugar
¼ cup orange juice
½ teaspoon Galliano

Preheat oven to 350 degrees. Grease and flour 12-cup tube  or Bundt pan.

Using large bowl in a stand mixer, beat sugar, oil, eggs and vanilla to blend. Mix flour, baking powder and salt in medium bowl. Stir together orange juice, vodka and Galliano in small bowl. Stir dry ingredients alternately with liquid into sugar mixture, beginning and ending with dry ingredients. Pour batter into prepared pan.

Bake until tester inserted near center comes out clean, about 45-50 minutes. Cool cake in pan on rack about 10 minutes.

Whisk together all glaze ingredients in small bowl to blend. Turn out cake onto rack. Spoon glaze over warm cake. Cool cake completely. Slice and serve. (Rik liked his with vanilla ice cream.)

June 13, 2011

Shingles and chemo, the final word

Today I saw award-winning infectious disease specialist Dr Martin Siegel and he affirmed what Dr G said: be careful about chemo and shingles. So I am decreasing from 1 g valacyclovir 3x/day to 500 mg 2x/day FOR AS LONG AS I AM ON CHEMO. Dr S says he has lost patients who restarted chemo too soon after shingles, hence the long term use of this medication now that my shingles are healing and beyond.

No, I am not eligible for the shingles vaccine, even to ease another outbreak. If I get shingles again, I'll just have to live with it. 

Because I knew Dr S would want to examine me, I never put on a lidocain patch today, and even this late in the day I feel fine. Some itching, but nowhere near the kind of pain I'd been having, even as recently as last night. I am still wearing a Fentanyl patch and will talk to Dr G about decreasing the dosing. I still have plenty of lidocain patches and Vicodin for breakthrough pain, but it appears I am healing. Dr S says the itching is a sign of healing. 

Since I appear to be healing, Dr S thinks I may be lucky and avoid post herpetic nueropathic pain. Let's hope so. 

In other good news, Drs G and S agree that I should stay off chemo while awaiting gamma knife (scheduled for Monday 6/20). I won't restart chemo for at least another week after that.

June 12, 2011

Trying to stay balanced

I felt so well on Friday that I did too much, including wearing my contact lenses for twelve hours. The backlash on Saturday was awful and preventable. I need to balance my meds more effectively.

Although I spent an hour or so at shul, I should have come home. I only used half of a lidocain patch and it wasn't enough but I was too stubborn to add more later in the day when I can only wear them for twelve hours. I should have done it anyway.

I took some Vicodin but it didn't kick in soon enough and most of the time I was zoning out. I should have taken my daily dose of Ritalin but hadn't. So much for balance.

I napped in the afternoon, then took my mid-day meds. Pain was really making me cranky! I put on my pajamas around 6 PM, ate some soup and tried to enjoy some Graeter's ice cream. I was so cranky that even more Vicodin around 7 PM barely took the edge off the pain. It was the 0.75 mg of Ativan that made the evening bearable. Again, so much for balance and for recognizing the pain symptoms.

I slept most of the night but my shingles pain also manifests with night sweats. After that middle of the night awakening, I took some more Vicodin and tried to sleep through the dog's begging to go outside. I lasted until 7 AM (which I thought was 8 AM), got up for real to let Bobka out, feed him breakfast, let him out again and type this post.

I might go back to sleep now; it's a quarter to eight in the morning and I could use a little extra rest. I already took my morning meds, minus the Ritalin, because I really do want some more sleep.

When I get up for real (for the third time), I will take the Ritalin, use more of the lidocain patch, drink coffee with breakfast, and aim for better balance so I can enjoy my day.

June 10, 2011

Hair loss

I am losing more hair than a few weeks ago. As I stand in the shower, it now comes out not quite in clumps, but certainly in the dozens instead of in the single hairs.

I'm not sure why this is the case. My last treatment was on May 30th, Abraxane and Avastin, when I had already started valacyclovir for shingles. At that point (dose four) my hair was still only slightly falling out. The next dose was scheduled for June 6, but was cancelled due to low counts from the shingles outbreak. Dr G told me that same day he'd recently read about a cancer patient who died after her bout with shingles conflicted with active chemotherapy treatment. Not for me, thank you!

I see the infectious disease specialist, Dr Martin Siegel, on June 13. I assume I won't have chemo that day, since my appointment is in the afternoon, but you never know. He is the doc who is supposed to clear me to get chemo again. Maybe he will clear me for treatment later that week, even though Mondays ae my preferred chemo days. On the next Monday, June 20, I am scheduled to have the gamma knife treatment. Can I guess no chemo that day, which starts at 7 AM?

That might mean a chemo break of about four weeks, which would certainly make me feel good. No word on how it will affect my hair loss, or what impact it will have on my cancer. But I think all the docs will agree that treating the brain mets is the top priority.

Shingles pain

I think I've finally found the right breakthrough pain combo -- two 5/500 Vicodin and up to 1 mg Ativan. A tiny 0.25 mg piece of Ativan helps remarkably and doesn't make me sleepy. 

But I had more serious night breakthrough pain again yesterday. I needed the full dose of both to get back to sleep. When the shingles pain hits me like that in the middle of the night, it's like my back and leg are on fire.

I complained of lower back pain for months and we thought it was mets on my sacrum, even had a scan to determine if there were more mets. I wonder if maybe this was early warnings of shingles? Every adult, unless immune suppressed, should get the shingles vaccination ASAP! See this article on why people don't get the vaccine.

June 08, 2011

Sounds of Dunava

Folklife recorded Dunava's set at the Festival's Slavic Choir Showcase in the Center House Theatre. You can listen to it here. The Dunava set appears about 2/3 of the way down the page.

I apologist that there were no really good pictures of our Folklife shows.

Here is a link to a home-made YouTube video of the Sunday performance with Radost and RTW. 

Here is another link to a YouTube video of our performance with Tzvetanka 


And remember, our entire CD is on CD Baby! At CD Baby, you can preview individual tracks, download the CD, and order a real physical copy (or two). Click for the link to CD Baby.

June 07, 2011

Gamma knife a go

Today I met Dr Sandra Vermeulen, the "gamma knife gal." She knows a friend of mine well, and Dr V used my friend as as example of how well people can respond to brain mets radiation treatments. Dr V even explained about whole brain radiation (WBR) and why she felt gamma knife was best in this circumstance.

Together Dr V and I ruled out whole brain radiation at this time. The three lesions are very small and unless they have grown significantly since the MRI, they are good candidates to be zapped by gamma knife. Dr V's group has helped more than 3,000 people with gamma knife..

The prep includes inserting four pins, one each in the corners of my head. (This is done with Ativan for sedation and could include Versed, twilight sedation, if I prefer.) Then they send me to an MRI to be sure the mets haven't moved or grown since the last MRI. Next they check the plan to be sure the rads go in at the proper angles, then the actual treatment, and last, the removal of the frame and pins.. Last they de-access my power port and I go home. The whole thing takes about four hours and my only prep is nothing by mouth from midnight the night before.

I can't say I'm excited, but I am pleased to know that this is all done at one time. We scheduled a date, in the reasonable hope that the insurance company will approve it, and then a few days later, Rik and I can go to Toronto as planned.

I really liked Dr V. She drew pictures, answered all my questions, and spent about an hour with us. Her staff were also terrific, just what I'd expect of people working at the former Providence building. Plus any doc who introduces him or herself as FirstName LastName and can handle the same from me is a keeper.

Pain pain pain

I thought my shingles were under control and healing, when I got whammed by some serious breakthrough pain today.

After a day of pain misery, I have been told to switch back to Gabapentin from Lyrica. I had only taken four Lyrica pills (it was expensive!) but if it doesn't work, I need to find something that does.

I should still use the Fentanyl 50 mcg patch and the Lidocain 5% patch and have increased to two of three permitted three daily. I may try three tomorrow. I am to add two 5/500 Vicodin and 0.5 Ativan for breakthrough pain.

So far the Vicodin has helped a lot, enough to type at the computer.

I'm going to start the Valacyclovir again, on the theory that I may still have active shingles in my body.

My major concern? That all these narcotics will prevent me from driving or being focused enough to do the things I love. I have an appointment to see Dr Bufi the naturopath tomorrow and would like to make it there and back safely. I suppose this is what the Ritalin is for....

June 06, 2011

New plan

I saw Dr G today and he has come up with a new plan while I am still dealing with shingles. First he told me he'd read about a woman who developed shingles during her cancer treatment. She had chemo and the shingles spread and basically killed her. So our new plan takes things easy.

1) Increase the Fentanyl patch to 50 mcg to get better pain management.

2) Stop the Gabapentin and start taking Lyrica (pregabalin). Like Gabapentin, it's used to fight neurologic pain. As I heal from the shingles, I'm told I can expect to continue to have pain.

3) Use up to three lidocaine patches if I need more pain control.

4) Book an appointment to see Dr Martin Siegel, the infectious disease specialist who basically saved my life in 1999 by diagnosing Toxic Shock Syndrome after my original breast lumpectomy. He did the same again a couple of years ago when I was hospitalized with an unknown infection for 13 nights. He's part of my terrific care team and I look forward to seeing him next week. His job is to decide when the shingles has gone away and I can have chemo again.

Tomorrow morning we see Dr Sandra Vermeulen, the radiation oncologist who will talk about gamma knife vs. whole brain radiation vs. cyber knife to deal with my three brain mets. Bet you thought we'd forgotten about them! No, I'm sure they're still hanging out. More news tomorrow.

June 05, 2011

Unmanaged pain

Around 5 PM my pain began to creep up to unmanageable. I've been twitching in my seat for hours. I had to remove my lidocaine patch at 8 PM, took 2 5/500 Vicodin, and hope this will address it. If not, I give up on decreasing the Fentanyl and will put on another ~ 12 mcg patch.


I realized last night that I couldn't find my remaining 12 mcg Fentanyl patch. I was so sure that I had three left: I used two for a total of 24 mcg to step down to from the 50 mcg, and then I'd planned to use the last 12 mcg as an intermediary step before stopping the Fentanyl completely.

You can imagine my distress. If I couldn't find the last Fentanyl patch, I was going to be without any pain management for 12 hours starting at 8 PM last night! The lidocaine patches stay on for only 12 hours, and I prefer to use them during the day, so that I have maximum pain management when I am out and about or at least up and not in bed.

Rik had the very creative idea to cut one of the 50 mcg patches into quarters, thus giving me about 12 mcg of drug. For some reason I simply couldn't follow this while I was distraught. We went to a shiva minyan for our friend who just lost her youngest brother quite unexpectedly, and I removed the two 24 mcg patches while at her house around 8 PM.

I began to feel a little twitchy -- every time I though I got a pain signal, I twitched just a bit. After we came home, and I'd changed into my pajamas and settled myself on the couch to watch some TV, I finally realized what a good idea Rik had had. I asked him to cut up a 50 mcg patch, and he did so pretty accurately. I began to fell some pain relief about 20 minutes after putting the patch ion my arm.

On the good side, I took 0.5 mg Ativan at bedtime and slept well for most of the night. Between the dog and some pain signals, I awoke at 5 AM, and then at 6 AM, finally getting out of bed just before 8 AM. I took 600 mg of Gabapentin immrdiately, and as soon as I take a shower, I'll put a new lidocaine patch on my hip and back.

It makes me wonder how I will tolerate losing all the Fentanyl in three more days. I will report everything to Dr G on Monday, and get his take on whether I might be healed enough from the shingles to go to 0 mcg Fentanyl, or if I should stay on my home-trimmed patches.

June 03, 2011


I've been running a low grade fever since Tuesday night. My nose runs constantly (but that could be due to the Avastin, which causes nose bleeds, and there is usually a little blood on my tissue). My temperature hovers around 99 degrees Fahrenheit, and has gone up to 100.5, the point at which I am supposed to call the doctor.

By the time I spoke to Nurse Jacque yesterday (when my temp hit 100.5 during the morning), it had already gone down more than a degree. She told me to take my temperature regularly, and if it should peak to 100.5 or higher and stay there for a couple of hours, I should call her. A steady temperature of 100.5 or higher is likely a sign of infection, and might occasion a hospital stay.

I think I probably picked up something while at Folklife. Two of the Dunavites are sick as well, but of course for me it's more serious than a spring cold. Being exposed to others, like walking in a crowd, puts me at a greater risk for catching something than the average person. But I went to Folklife because it was so important to me to sing with Dunava. I tried not to get too close to people, and if I picked up something, I hope I can manage it at home.

Meanwhile I am taking my temperature every hour or so.....

June 01, 2011

Back to that "new normal"

I actually felt so well on Tuesday that I was able to drive the car; attend a morning meeting and be focused and present for the discussion; run an errand to the dry cleaner and go grocery shopping. That represents a HUGE improvement over the past ten days, when I could barely move my sorry ass off the couch, and needed rides to everything. The shingles are showing a good response to the treatment, but their presence will prevent me from modeling at the Gilda's Club fashion show on Friday. It's too bad, but always better to protect the health of the other models who have compromised immune systems. The third time was not the charm, I'm afraid.

Still no word on whether the chemo combo is doing anything for the cancer. I anticipate getting my tumor markers checked again, maybe as soon as next Monday.

I was truly tired after all the running around yesterday, and noticed that my feet hurt. Not just hurt like I was tired of standing, but numb and tingly all around my toes on each foot. I think this is more neuropathy from the chemo combo. I reported it to Dr G's nurse and was told I could increase the gabapentin up to 900 mg three times a day, which is quite a bit more than I am taking now. It should help with the neuropathy pain.

I also ran some errands today. Went to Dr G's office for a shot of Neulasta to build my white blood cells, then drove north to exchange a pair of shoes (size 8.5 bought at Northgate Mall) to the size 8 (only at Alderwood Mall). I was fine with all that highway driving too.

My nose is a little runny, with a tendency to bleed (that's the Avastin), I am constipated (from the gabapentin), and I've run a very low grade fever of 99.2 degrees for the past the nights. I may be coming down with a something, and so plan to take it easy tomorrow and just go to my support group. They need to hear Jill's great shingles story.