May 30, 2011

Pain relief

I finally got adequate pain relief today. While waiting to get Avastin and Abraxane, the current chemo combo, I spoke on the telephone with Dr G. He decided to treat me with Lidoderm (lidocaine trasndermal5% topical patches. These are patches that distribute medication directly through your skin. The fentanyl patches are similar.

The wonderful pharmacist at the Cancer Institute, Lanny (I don't know how to spell his name), walked over to deliver the box of 30 patches to me. Our insurance coverage through Premera charged only $20 for this medication. I put one on in the middle of treatment at Dr G's request to see how well it might work while I was still in the chemo chair. Evidently the Lidoderm works extremely well, because Rik and I had a busy afternoon.

We went to the new Skillet Diner for lunch. It was not as good as I had hoped. My hamburger, ordered medium with a specific request for pink on the inside, not red, arrived overcooked and dry. There are few chances to eat poutine in Seattle, and I always jump at the chance (and am usually disappointed). Poutine is three things: fried potatoes, gravy and fresh squeaky cheese curds. The fries were terrific! The gravy, made with chicken stock, had plenty of herbs. But given that the local Beecher's makes really good cheese curds, I was disappointed to find melted cheddar cheese on Skillet's poutine. Maybe they think Seattleites don't know or care about authentic poutine?

Here's a shot of my poutine.
At least it came as a side to the burger and so wasn't an enormous helping.
After lunch, we picked up some bagels at Eltana. A tragedy was averted just in time -- we had run out of bagels this morning!

Nordstrom was having their half-yearly sale for women, and I really wanted to stop by while I had Rik to drive me. I did find a cute pair of black flats at a really good price. They might be a half-size too big, though, and I'd have to go to Alderwood Mall to find the smaller size. I will wait and see. Of course, while we were at the mall, I shlepped Rik into Macy's where there was also a sale, and I picked up a summer belt patterned in small squares of colors and a new purse, again in multiple colors patchworked together. It was a lot of shopping, but Rik was gracious about taking me, and I found such lovely things at good prices. Rik is the one who found the purse, and it is truly a keeper!

We came home and I watered the garden (we had two days of sunshine in a row!) while Rik mowed the lawn. Then I made us dinner of spinach and mushroom enchiladas suizas, rice and sliced fresh mango.

It's now after 9 PM and I am done for the night. I just took off the 12 mcg Fentanyl patch (it had been on for 72 hours) and removed today's Lidoderm patches. It hurt to remove them!, but we will see if I maintain good pain control overnight with the bedtime doses of valacyclovir and gabapentin. I will report to Dr G that I removed the small dose Fentanyl patch.

It felt totally terrific to be this busy for the first time in a week. I haven't cooked a meal in more than five days, ran an errand or driven the car in more than a week, or even been off the sofa this much in ten days. I know I may have overdone things (that's the trouble with pain patches, you feel good so you don't realize you do still have pain and it's easy to do too much). I may pay the price tomorrow, but there is only one item on my agenda, and I can do it from home if need be.

Time for a good night's sleep!

May 29, 2011

Sunday Folklife update

I hada wonderful time at Folklife today. As I read in this morning's Seattle Times, one of the highlights to look for today was Radost. (Too bad for Radost fans that the newspaper got the time wrong, but it was not printed correctly in the Folklife schedule, and I assume that's where they got the information.)

Although we arrived 90 minutes before the set began, there was no time allocated for a sound check for Orkestar RTW and Dunava (I guess we weren't as important as some of the other groups). We did our own rehearsing, dancers, singers and musicians together, in the large amphitheatre-type room we were  assigned to for a dressing room. Then as we were called to places, waiting in the stage right wing, someone said, "This is what it's supposed to be like." It was a perfectly true sentiment, and sadly, only those of us who had performed in large ensembles could relate to it.

Our first number went off without a hitch, despite no sound check. Dunava actually opened the entire all-Bulgarian concert with our powerful rendition of Zheni me mamo and Sevedelino malaj mome. In the hour between our first and second sets, I went outside for a late lunch with two other Dunavites. The concert had already begun, and there were more than 100 people standing in line.

After an hour or so we performed our second set. This piece had even more resonance of "the way it's supposed to be." The dancers flew around the stage, we sang with great verve, and the musicians were whisking us all away. I simply couldn't resist the impulse to yip throughout the piece. Yipping with excitement was a signature part of my performance experience. The full house was very dark, but I could see the reflection of the dancers in the light booth's glass windows.

It was an emotional moment for me. I teared up over the excitement of sharing the stage with all of Radost, remembering when it was me flying through the air, and yet still performing this ethnic material I love.

All in all it was a long day, and I hit the "wall" and had to go home to crash. Much as I wanted to go to the big Balkan dance tonight, I was too pooped to do so. Remember, I asked to be able to perform at Folklike, not participate in all its other aspects. And perform I did, and well too, I hope.

Photos coming soon, I promise. Tomorrow is chemo day, and if I am feeling well enough, I will download the images Rik took and post a few pics.

Hair

Just a really quick note to say that I still have hair. Indeed, I still have all, if not most, of my newly curly hair. Every day in the shower as I rub shampoo or conditioner around my head, I notice that a more hairs appear on my hands than usual -- maybe 20 hairs each time I rub my scalp. All the popular sites (i.e. not medical ones) say that the average person loses up to 100 hairs per day. Still, I do not appear to be losing much hair to the Abraxane and hope that if anything hair-oriented has to happen, my hair will thin but I won't lose it all.

This popular eHow site says this about hair loss for the average person:


How Much Hair Does the Average Person Lose a Day?
By Lexa W. Lee, eHow Contributor

As your hair grows, you routinely shed it. The average person loses up to to 100 hairs a day. Normally, new hair grows to replace what you lose.

Growth and Loss 
A single hair typically grows less than half an inch each month, for a total period of a few years. Then it falls out, and new hair replaces it.

Hair Loss Factors 
How much hair you lose each day depends on factors such as how many active hair follicles your scalp has and how fast your hair grows. The more follicles you have and the faster it grows, the more hair you will lose.

Other Factors 
Genetics play a role in hair loss, as does your nutrition, health and stress level.

Reasons for Excess Hair Loss
You may lose more hair than normal (telogen effluvium) due to serious illness, major surgery, inadequate protein intake, childbirth, and medications including antidepressants, retinoids, beta blockers. You may also notice more hair loss from other areas of your body.

Excess Loss Not Permanent 
Excess hair loss usually decreases gradually after the problem is corrected. The amount you lose declines during a six- to eight-month period.


Lexa W. Lee, a writer based in New Orleans, has freelanced for 20 years. Her clients have included WebMD, EverydayHealth.com, "Self", "Central Nervous System News", "Journal of Naturopathic Medicine," and TennisDiary.com. She has a Bachelor of Science in Biology from Reed College, a naturopathic medical degree from National College of Naturopathic Medicine, and was a postdoctoral researcher in immunology.

More on Folklife Saturday

I was sorry not to attend Dunava's special workshop with Tzvetanka yesterday, but my afternoon dose of painkillers (even taken early, at 330 PM) did NOTHING to address my pain. I would not have been able to sit down, much less concentrate on singing, just like my experience on Friday night at our rehearsal with Tzvwtanka, and those were songs I knew ALREADY!

I remember I said to Dr G my goal was to perform at Folklife. He said the same. I never mentioned the workshop, the big concert that continues for several hours after we perform, or Sunday night's  Balkan dance. In my experience, you get what you put out to the universe. I probably should have mentioned the other things, but I didn't want to overload my requests to the system.

I basically got into my pajamas Saturday afternoon and tried to ignore my pain. I have to come up with a better daytime pain management plan. I slept well last night (of course I took a dose of gabapentin at bedtime), but there was a big gap of pain coverage yesterday between 3 and 11 PM. Maybe I should call my doc today at home instead of waiting for when I talk to him during Monday's chemo.

I would like to be able to stay for the rest of this afternoon's Bulgarian concert, and I would like to dance at the big Balkan dance tonight. .... sigh ....



May 28, 2011

Folklife!

We had a great time at the NW Folklife Festival this afternoon. I woke up at 7 AM feeling fine, took some gebapentin for pain control and some valacyclovir, then went back to sleep. We got up for real at 9:00. After a big waffle breakfast, Rik walked the dog for his usual Saturday two miles while I got ready for the Dunava performance.

We had a quick run-through in the Center House lobby and were in place back stage early. Our guest artist was late and so even though we thought we could start our set early, we ended up beginning right on time and had so much material that we ended up cutting one song. (Folklife is sticky about starting and ending on time.) The audience was very responsive and I think it was a good performance. I will try to post some video Rik shot.

After our set, I was very hungry for lunch. We met up with friends and decided everyone should get their own favorite food and gather on the International Fountain to eat. Rik and I ended up with Indian food from a restaurant we often go to (but we're not sure it's the same place, so I don't want to say the name). I had chicken masala over rice and salad with plenty of  extra sauce on the side. Rik enjoyed a chicken kebab over rice. Prices at the food booths have definitely gone up over the years - each plate came to $8, and Rik's mango lemonade was $3.

We caught up with friends in the sunshine, talking about shingles, gamma knife treatment, and other and sundry physical health issues. Then the women decided to shop before getting dessert.

We browsed through most of the market. C bought shoes; Rik and C bought a Folklife t-shirt; G looked for a cool pair of earrings but no dice. As we parted company (some to stay and dance, others to crash), Rik and I noticed three hatters in one general area. I bought a terrific rusty brown raffia hat which is size adjustable. I think it will be prefect for shul this summer. My dessert was a chocolate mousse crepe with caramel sauce and whipped cream; Rik got a friut smoothie.

I had taken the next dose of pain meds and antivirals at 3 PM. Even so, I was completely steeped in pain and cancelled on the 4-6 PM workshop we had with our guest artist from Bulgaria. There is no way I could have learned new music while feeling uncontrolled pain.

Perhaps I am being overly sympathetic to my doctor, but I don't feel that this is enough of an issue to disturb his Shabbat rest. I will take the third doses of everything at bedtime,  which should give me a good night's sleep. If Sunday's pain is again unmanageable around 3 PM, I can call Dr G's answering service. Plus I will speak with him on Monday when I go in for treatment. You can be sure I will report these afternoon tough spots and ask for an increase in the gabapentin (neurological pain med).

Tomorrow's schedule includes showing up on time for the Radost concert sound check and being ready to sing at 3 PM. Dunava opens the show with two very short Bulgarian songs; then we accompany the Radost dancers for one number. About an hour later, we accompany the dancers for a second number. Given how I feel this afternoon, I think I will end up at home Sunday afternoon; maybe call Dr G to get his take on pain; and if I feel better, come back for the big Balkan dance Sunday night. This is a perpetual favorite dance and I will forward to seeing friends from all over at it. Hopefully I will see them tomorrow!

May 27, 2011

Gilda's Club Fashion Show

I will model at the Gilda's Club fashion show next week. I've been active at Gilda's Club Seattle for about eight years and am a Friday yoga regular. Please consider attending or supporting this very worthy cause with a donation. 

DON'T MISS OUT ON THE BEST SHOW IN TOWN!  IT WILL INSPIRE YOU AND TOUCH YOUR HEART.
Fashion Show Invite
Tables of 10 are $1,500... single tickets are $150.  Put a group together for an afternoon to remember!  
  
14th Annual Fashion Show & Luncheon
DATE:June 3, 2011
TIME:11:30am - 1:30pm
LOCATION: The Westin Seattle ::MAP
MORE:Visit our website for more
information or to purchase tickets
  
Featured Models
Magarita Andrijic :: Judi Best :: Kathy Burdick :: Delaney Clark :: Jill Cohen :: Sara Cottrell :: Louisa Cryan :: Stacy Eckert :: Jaymee Espinueva :: Steffanie Fain :: Carol Gaouette :: Doneen Jasman :: Jesse Jones :: Victoria Kemery :: Amy Lanum :: Joanie Mass :: Camari Olson :: Norma Phillips :: Mario Prieto :: Pete & Jill Robertson :: Sherrill Slichter :: Lucho Singh :: Mike Walter :: Reba Weiss :: Jenni Whitney

Boutiques Scheduled to SWS FlowerAppear
Alexandra's :: Barneys New York :: Betty Lin :: Brooks Brothers :: Catherine's Plus Sizes :: Champagne Taste :: Eileen Fisher :: Endless Knot :: Jack Straw :: Karan Dannenberg :: La Belle  Elaine's Bridal :: Mario's :: Opal :: Papillon :: Piazza Sempione :: Ragamoffyn's Road :: Rottles :: Sears :: Tatters :: THE FINERIE :: Via Lago

May 26, 2011

Shingles

Believe it or not, this is good news!

I called Dr G this morning about a rash that appeared overnight on my leg and he said to come in before the MRI scheduled for this afternoon. One look, that's all it took -- shingles!

When combined with the kind and spread of pain I'd been complaining about all week, the appearance of red vesicles (rash) enabled him to out all the pieces together. He immediately cancelled the MRI and started me on valacyclovir and gabapentin.

It will take quite a few days for the infection to clear up and perhaps longer for the pain to reduce. Gabapentin will also make me tired and I shouldn't operate machinery (i.e. drive a car) while taking it. I will stay on the fentanyl patches also, since one is supposed to increase the gabapentin slowly to a maximum of three per day.

I had chicken pox as a child and the odds favor that I have carried it around in my body ever since. There's little doubt low immune counts from the chemo caused me to be more susceptible to a flare up. That's also why I couldn't have the shingles vaccination. It's a live virus vaccine and would have put me at risk to develop shingles, which I did anyway.

The Centers for Disease Control and Prevention website says,

Shingles cannot be passed from one person to another. However, the virus that causes shingles, the varicella zoster virus, can be spread from a person with active shingles to a person who has never had chickenpox. In such cases, the person exposed to the virus might develop chickenpox, but they would not develop shingles. The virus is spread through direct contact with fluid from the rash blisters, not through sneezing, coughing or casual contact.
A person with shingles can spread the virus when the rash is in the blister-phase. A person is not infectious before blisters appear. Once the rash has developed crusts, the person is no longer contagious.
Shingles is less contagious than chickenpox and the risk of a person with shingles spreading the virus is low if the rash is covered.

So I will cover my rash, swallow the huge valacyclovir pills (1 gram, the size of my thumb!), and hope the gabapentin controls the pain soonest, plus remember that shingles is NOT MORE CANCER.

New oddities

Bobka the dog perched on my right leg for about 20 minutes last night while I was relaxing before heading off to choir rehearsal. When he got up, the skin felt numb and it's stayed so throughout the day today. In addition, I noticed some small, red dots in a circular pattern in two locations on my right thigh. I called Dr G's office this morning and he is going to squeeze me in for a physical exam before today's scheduled MRI.

Again, we can't do anything to address brain mets until we get the pain under control.

This really sucks.

May 24, 2011

Pain update

Yesterday Dr G put me on 50 mcg fentanyl patch and 10 mg Torodol every 6 hours. This did not control my pain well enough and I call his office several times throughout the day, asking for suggestions on better pain management. Finally at about 6:30 PM he called me and changed the dosages to 100 mcg fentanyl patch, 10 mg Torodol every 3 hours and added 1 mg Ativan every 6 hours. Other than making me woozy, we hope this will control the breakthrough pain. It's been 45 minutes since I made the changes and am still waiting for pain relief. However, the Ativan is giving me a nice buzz.

I had to write down the dosing schedule to be sure I get it right this evening. My goal is to get the pain under control so I can sing with my choir this weekend at our two performances. That's Dr G's goal too. It's always good to be on the same page with your doc.


For those who live in the greater Seattle area, check out my choir Dunava at the NW Folklife Festival:

Saturday 5/28 at 12:50 PM in the Center House Theatre. Get there early to find seats, it's a small venue and we are the second or third group in the set.

Sunday 5/29 at 3 PM. We open the all Bulgarian concert with the Radost Folk Ensemble and Orkestar RTW. Again, arrive early to get good seats.

You can also hear Dunava on last year's limited edition CD, Roots and Branches: Live from the 2010 Folklife Festival. Copies will be for sale at the Folklife Store, in the Fidalgo Room at the corner of Republican Street and First Ave N, by the Key Arena.

Abraxane #3 plus comedy of errors

I was scheduled to have the third dose of Abraxane yesterday. I'd been complaining of low back pain and pain in my right leg all weekend, so on Monday I didn't feel dafe driving myself. What if I had more mets and was in danger of a fracture? I'd already been lucky the first time that I experienced the pathological fracture while at home and not walking the dog, driving the car, or out and about elsewhere.

So Rik drove me and I arrived extra early at 8 AM (for my 9:30 lab appointment). The lab saw me pretty quickly, but again there was a computer problem with the orders Dr G wrote and "signed" electronically while I was sitting in the room with him. The SCI nurse called his office more than a few times; his staff paged him but he didn't answer; and in the end it was almost 1 PM before they could start any of the treatment. Thankfully my friend T was there to keep me company the whole time. We got some lovely borscht and pieroshkies for lunch and eventually I got everything: Decadron the steroid, Zofran for nausea and Abraxane.

In the middle of all this I was of course still in pain. On Sunday I had taken the maximum permitted amount of Vicodin with really limited pain relief. On Monday to took two Vicodin at 8:30 Am and two more at 1:30 PM but the pain only got worse. Dr G wrote orders for morphine but I recalled that morphiine didn't help too much with pain last summer. So I ended up taking intravenous Dilaudid. Between that and a hot compress, my back pain soon eased.

The Dilaudid made feel both loopy and me nauseous and I vomited several times by the time I finished the Abraxane. So I got some Ativan for the nausea. T gave me a ride to Dr G, who wanted to see me about the pain issue. (Thankfully no vomiting in the car.) Rik met us there.

I explained all the Dr G and he sent me off for immediate spinal xrays. Given that it was 5 PM by this point and he couldn't reach an in-house radiologist, he viewed the films himself. There is an ambivalent area in my sacraum (where we already know I have mets). My pain was radiating from the lower right to the right leg and even making the skin tender to the touch, much in the way that pain from the sciatic nerve behaves. So it might be sciatica or it might be mets. Dr G wrote prescriptions for Fentanyl patches and for ketorolac (Toradol), a non-steroidal anti-inflammatory, and we went into the Minor and James pharmacy to get them.

While we were waiting, in runs Dr G. He'd reached a radiologist at Swedish hospital who confirmed that there was no danger of an immediate fracture (which would have been the reason not to send me home). He'd placed a call to my orthopedist, Daniel Flugstad, and promised to contact me today with Flugstad's take on things.

We had a mutual hug fest right there in the pharmacy -- Dr G hugs Rik, Rik hugs me, Dr G and I look tearfully into each other's eyes. No hugging, it's not frumkeit for unrelated men and women to touch outside of the doctor-patient examination. For him, not for me. But the tearful glances of relief more than make up for any lack of hugs.

Rik and I finally arrived home around 6:30 PM. I stuck the first Fentanyl patch on my arm, got undressed, ate a snack and went to bed. With Dilaudid, Ativan, and now Fentanyl in my system, I could barely stand upright. I slept well all night and woke up rested this morning.

And now for the latest news. I still have back pain. I wasn't sure at first, as it's been creeping up on me slowly all morning. I felt fine in the shower, eating breakfast, even walking the dog for a few blocks. But sitting at the computer typing and talking with the health insurance companies about bills, I've notived an increased in pain, even through the FEntanyl. So I took one of the ketorolac pills and will hope that takes care of any breakthrough pain.

I still don't have any more news about an appointment re gamma knife, but Dr G said his staff would take care of it. I learned this morning that Dr G has spoken with Dr Flugstad and am waiting for a call back from him with an update. I will, of course, report this morning's breakthrough pain. I called my primary care physican to keep her posted on all of the hoohah. And I will keep all of you posted as this comedy of errors continues.

May 22, 2011

Dunava at Folklife


My choir, Dunava, hasn't been singing much in public lately, but we want you to know that yes, Dunava will be part of the 40th annual Northwest Folklife Festival in Seattle next weekend. This year, Folklife has a special focus on Bulgarian music and culture, and since that is right up our alley, we will present a mostly-Bulgarian program this year.

You can see us twice!

Saturday, May 28, from 12:50 - 1:15 p.m., in the Center House Theater (downstairs of the main stage/food court, by the Children's Museum). It's the same venue we've sung in in the past two years, and it gets packed! We definitely recommend coming early to get a seat. We're third in a line-up of four fabulous choirs; the first starts at 11:40 p.m. 

The amazing Bulgarian singer Tzvetanka Varimezova will join us on a couple of songs next weekend at Folklife. She's visiting from L.A. as a special guest of the festival, and as far as I know this is her first time performing in Seattle. We are very excited to have her share the stage with us!

And then, Sunday, May 29, from 3 - 6 p.m., is the "big Bulgarian concert" in Bagley Wright Theater, featuring artists from here and afar: Ruth Hunter, Mary Sherhart, Ethel Raim, Eva & Aurelia ("Ash"), the Radost Folk Ensemble, and Tzvetanka Varimezova and her family. Dunava will sing with Orkestar RTW to accompany the Radost dancers. Radost goes on first, so arrive early to get a seat for the 3 p.m. start.

What a great weekend ahead!

Remember: Folklife is free, but very much relies on the contributions of festival goers. So be sure to drop them a little (or big) contribution when you go, and ensure the longevity and fabulousness of this big event.

Dunava is Dina, Christi, Hila, Jill, Jody, Meg, Meredith, Ramona, Tedy, and Valerie.




May 21, 2011

Komen Race for the Cure

Okay, I registered for the Komen Race for the Cure. Despite the sea of pink and my issues with Komen's lower of support of research (25% of dollars raised locally) vs. focus on early detection (75%), Rik and I will walk with the Hadassah Heelers on June 5.

You can make a donation on my personal page by clicking here

Almost as soon as I posted the news to Facebook, I got a notice that I had already received one donation! Thank you M for your support. All others: I do really believe that there are better places to donate that fund larger dollar amounts and percentages to breast cancer research for a cure. (See my post Pinktober.) But Komen is the 600 pound gorilla of breast cancer advocacy, and they are worth supporting if indeed they can find a cure.

Especially in time for me to benefit from it.


May 20, 2011

Middle of the night reflections

I was so tired last night but found it hard to relax and fall asleep. I took a Vicodin for back pain and Ativan for stress reduction, and while I was waiting for everything to kick in, my mind wandered over many topics.


I remembered the day we lost Pumpkin, how stressed we were that we didn't help him faster and so he had to suffer, because I had to go to chemo early in the morning before we could take him to the vet. I imagined Pumpkin and the Kitzel and even Dunky my childhood dog all running to greet me as I crossed the Rainbow Bridge.

I thought of my dear friend Charisse z"l, whose yahrzeit is coming up in a couple of weeks, and how much I miss her company and would have benefited from her wisdom while going through cancer treatment all these years. The night Charisse died, her husband told me he was cuddled in the hospital bed with her. At one point she sat straight up and said out loud, "I have faith!" When he awoke the next time, she had died. She knew she was dying (we had spoken only days before to say goodbye).  I wish I knew what Charisse meant, what she had faith in.

I recalled the Red Queen from Lewis Carroll's "Through the Looking Glass," who raced so fast just to stay in place. It's like dancing with cancer. You have to keep moving as fast as you can just to stay on  top of it.
"Well, in our country," said Alice, still panting a little, "you'd generally get to somewhere else — if you run very fast for a long time, as we've been doing."
"A slow sort of country!" said the Queen. "Now, here, you see, it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!"
To those of you who say to me that I always seem so on top of things, I always reply that's because you don't see me when I get the middle of the night heebie-jeebies. Well, this is what the middle of the night is like. Even Rik and Bobka the dog, who were sound asleep next to me, didn't know what was going on.

Eventually I relaxed from all the drugs and fell asleep. I hope to get to yoga today, and will focus on the relaxation pieces. The sun is shining yet again (three days in a row!), I have a few more plants to put into the garden, and I hope a nap is also in my future.

May 19, 2011

Brain mets update

I ran into Dr G while dropping off a form at his office, just long enough to say hello. His wonderful nurse Jacque told me that Dr G had spoken with Dr Stephen Eulau, my radiation oncologist. I called Dr Eulau and he said that he thought I'd be a good candidate for gamma knife.

Why gamma knife? Because it's supposed to be more effective at pinpoint treatment inside the brain. (Evidently cyber knife is better for other lesions in the body, such as in the liver.) I asked Dr Eulau what he thought about treating my liver mets with gamma or cyber knife and he recommended I speak to the specialists when I see them.

So hopefully I will set up an appointment soon, ask my questions, and be considered a good candidate for this very high tech treatment.

On another front, when I got home and let Bobka out, he limped back inside, favoring his left front paw. Many of you remember when Pumpkin's leg broke last June, the day before I was scheduled for chemo. The poor dog lay in his bed all day Monday until we got home from the Cancer Institute and once the vet diagnosed a pathological fracture, likely related to a metastasized sarcoma, we had to decide to euthanize him immediately. It was a terrible day.

I was so freaked out by Bob's limping that I called the vet, got an immediate appointment, carried him to the car and drove over. The vet examined him carefully and said he might have torced his leg while romping outside or even been stung by a bee, causing him to favor the leg. At any rate, she said there was no reason to suspect a fracture or anything more serious, gave Bob all the treats he could munch on, and sent us home with some doggy anti-inflammatories and the suggestion to keep him quiet for a day or so, monitor the limp, and if it doesn't improve, call her again.

This one incident caused my anxiety level to rise dramatically. I'm not normally anxious, but my heart was racing and I felt extremely stressed and barely able to cope. I've taken some Ativan and will try to get a nap, or at least try to relax. While I may feel as though I am handling the brain mets news, clearly at some level it bugs me tremendously and that came through in my concern over Bobka.

May 18, 2011

Check out this website

My sister turned me on to this website on brain metastases related to breast cancer. It feels kind of technical but appears to have good information.

A sunny morning helps

After spending more than 12 hours in bed, I awoke today to sunshine and warmer temperatures. Given that I'm a basically balanced person, this should help me return to some equilibrium after yesterday's news about brain mets.

I cried myself to sleep yesterday (after taking some Ativan so I wouldn't stress too much). But in my grief and fear, I remembered that one of the women in my cancer support group has had metastatic breast cancer almost as long as I have, and she's had brain mets almost all that time. I need to talk with C and find out what treatments she's had.

The other thing Dr G did yesterday was administer a longer gross neurological test. He always does the same things: close your eyes and hold your arms out palm up, push against me, pull me toward you. Yesterday he added touch your finger to my finger, then to your nose, then to my finger again (both hands); stand up and hold your arms out palm up; etc. At the end he said my cerebellum appears fine. So my worries of immediate brain difficulties were eased.

For today, I am going to walk the dog, run some errands, get caught up on email, write a talk for this Sunday's synagogue annual meeting, and finish some ironing. Maybe watch a little TV while I iron. I plan to go to rehearsal tonight and basically live as normal a life as I can while we figure out what to do next.

May 17, 2011

Brain mets

Possibly one of the scariest things a patient can hear (after "You have cancer" and before "There's nothing else we can do for you") are the words brain metastases.

Last week's brain MRI showed three lesions in my right cerebellum. They don't behave definitively like cancer, but as the radiologist who read the scan said to Dr G, what else could they be?

So the feeling stupid, making typos and feeling not-quite-vertigo were worth reporting and not related solely to starting the new chemo combo or tapering off the antidepressant (which it looks like I will need to start again anyway).

It's going to take me some time to wrap my head around this news. Here are the brief things I know so far:

1) I will see my radiation oncologist, Stephen Eulau, to get his opinion on whether or not I should have cyber knife or gamma knife treatments. Since these are about $80,000 per lesion, and I have three lesions, the insurance company may not cover the procedure, which Swedish does perform (cyber knife).

2) Dr G is against whole brain radiation, which he says will leave me feeling much more stupid, and prone to make many more typing errors, than I feel now.

3) I will continue on the Abraxane for one more week, and next week's labs will also test a sample of CA 27.29, my tumor marker. If the tumor marker shows a decline, then we might continue the Abraxane/Avastin combo. If it continues to go up, then Dr G will consider changing to Xeloda, an oral chemotherapy which he believes is more proven to cross the blood/brain barrier.

The active drug in Xeloda, 5 FU, is the one that put me in the hospital in 2009 with severe infections. However, if I'm monitored more closely, and given a lower oral dose, instead of a larger intravenous dose, it might not prove so toxic.

Like I said, this is a lot to digest. I'm going to bed now and will write more tomorrow. Those of you who live nearby and want to talk, I'm just not up for it now, but Rik might be.

Abraxane 2/ Avastin 2

Yesterday was another six-hour-long day at the Cancer Institute. One of the doctors was back from a week's vacation and so the lab was hugely busy, even at 9:30 in the morning. After waiting more than an hour, I finally had my port accessed and labs drawn. More than an hour after that, I was called back to the infusion chair, where eventually the nurse confirmed with Dr G that my counts, although a smidge low, still permitted me to receive treatment.

My friend G had been visiting with me until this point, and then another friend came by. We shmoozed while waiting for the pharmacy to prepare my drugs. I ordered us some luch from Mediterranean Kitchen, which J was happy to pick up.

I started the Avastin infusion around 1 PM, and it ended around 2:15 PM. (Next time the Avastin will shorten to only 30 minutes, which is where it will stay.) Then we changed over to the Abraxane (the actual chemo), which only takes 30 minutes. I was unbuckled from the chair around 3:15 and went home to crash.

I slept for three hours on the sofa, at which point I decided to just get into bed. I thought this cocktail was being given with Decadron (a steroid) AND Zofran (an anti-nausea drug), but evidently I didn't get the Zofran the first time, and there were no orders for it this time. So I toughed it out, but I was nauseous by 6 PM. I took some of the oral Zofran I have at home, and will be sure to ask Dr G today about including it in future orders.

I got up again at 9:30 and ate a piece of pizza and drank some water, then went back to bed. I was really woozy walking around the house last night, which was likely due to all the drugs floating in my bloodstream. I experienced a little abdominal pain, which is associated with the Avastin, but nothing else.

I slept until 7:45 this morning and feel better today. I took the dog for a walk and am about to head off to see Dr G and get last week's the brain MRI results. Will post more when I have info.

May 13, 2011

Graeter's ice cream update

I brought a pint of mocha chocolate chip (my favorite) to a meeting last night and offered some to those attending. At first they didn't believe me when I said it was the best ice cream in the world. There were comments about Starbucks coffee flavor, Ben & Jerry's, even Breyer's.

After just one taste everyone agreed -- it's remarkably fine ice cream!

I challenge you, my Seattle area readers, to pick up some of your favorite supermarket ice cream and a pint of Graeter's from your local Fred Meyer. (I heard it's available at the Totem Lake store, maybe others. Call first.) Taste them and let me know what you think. Your taste buds will be very happy you did!

Scalp mets

It was the weirdest thing. Out of nowhere, I touched my head and found blood on my fingertip. The largest scalp met was bleeding! I applied pressure and after a few minutes it stopped.

This happened on Wednesday evening. I called Dr G on Thursday morning, the nurse called back that afternoon and told me he says wait until I see him on Tuesday and he will examine my head. Of course, if it happens again and for some reason won't stop bleeding, then we call.

This largest of three mets has been changing in the past two weeks. It used to be domed, like the others. Now it's flatter on one side and a tiny bit indented. If course I can't see it myself, but to my touch it feels different. Don't know if this is chemo-related and if it is, what it might mean....

Now I am off to get my brain MRI. I get the results on Tuesday afternoon.

May 11, 2011

Graeter's ice cream is in Seattle!

As an expatriate Cincinnatian, I have ordered Graeter's ice cream many times over the years. At first I would stop at the factory on the tail end of a trip home and pick up a few pints packed in dry ice. When that was no longer possible, I would order it over the telephone or, most recently, online. And of course every trip to Cincinnati included a daily stop at Graeter's for the best ice cream in the world. (Sorry, Molly Moon. Graeter's won my heart long ago.)

Mocha chocolate chip!
Imagine my glee when I was shopping at the Fred Meyer on Seattle's Lake City Way. While looking for the coupon special, suddenly several flavors of Graeter's were staring me in the face! I practically danced up and down the frozen food aisle while piling my cart with black raspberry chip, chocolate chocolate chip, vanilla and vanilla chocolate chip. coconut chocolate chip and the quintessential mocha chocolate chip. (Mint chocolate chip is not my thing, but it was there.) 


Graeter's makes its ice cream with a traditional French Pot process, just two gallons at a time. As the website says, 
"Our secret recipe of fresh cream and egg custard is gently swirled along the chilled sides of a slowly spinning French Pot Freezer. As the creamy blend thickens, a blade softly scrapes the sides of the pot, folding the ice cream into itself. Then we add the fresh ingredients to complete our unique flavors.
The gentle folding process prevents air from whipping into our ice cream and accounts for the extremely dense and creamy consistency. Where a typical pint of ice cream can weigh as little as 8 ounces, a Graeter’s pint weighs nearly a full pound! Graeter’s ice cream is so rich and creamy that we have to pack every pint by hand."
(Are you drooling yet?)

I was once told the secret to the chocolate chip flavors is adding the chocolate in liquid form before the ice cream is frozen. As the ice cream churn, the chocolate freezes into uneven sizes and shapes. It's possible to find a "chip" the size of the first joint of your thumb or larger! No other chocolate chip ice cream can compete.

For those who don't believe me, try your own ice cream taste-off. Pick up a pint or two at Fred Meyer. (Graeter's may also be available at QFC, but Freddy's on Lake City is where I bought it today.) Compare it to any ice cream you choose. I am willing to bet that Graeter's will blow your mind, especially any flavor with chocolate chips. And it's kosher under the Vaad Haoier of Cincinnati.

May 10, 2011

No chemo yesterday

My while blood cell counts were too low for me to receive chemotherapy yesterday. I need to stay away from large groups of people to prevent exposure to an infection. My friend D sat and visited for an hour while I waited for the lab results; it always feels better to have company.

After leaving the treatment center, I went straight to Dr G's office to receive my monthly injection of Xgeva, the new bone strengthening drug I've been getting instead of Zometa. I told the nurse about my week of symptoms (stupid, fatigue, runny nose and that on-the-edge-of-feeling vertigo), and Dr G came in to talk with me. Between the stupidity (which sometimes gets call "chemo brain") and the not-quite sense of vertigo, he wanted to rule out the possibility of brain metastases and ordered a brain MRI, which I haven't had in a while.

I did a little research and found that vertigo (also called Benign Paroxysmal Positional Vertigo or BPPV), can be related to treatment with gemcitabine, the chemo I just finished. Read here for more information.

So I get an extra week to recover and feel better, I'll have the brain MRI on Friday, and get the results next Tuesday.

I also learned that the Abraxane/Avastin combo is given in this order:
Abraxane on days 1, 8, 15 (of a 21 day cycle)
Avastin on days 1 and 15 (of a 21 day cycle)

I like having more information!

May 08, 2011

Trying to enjoy the moment

I woke up Saturday morning feeling great. (I think it had to do with the sleeping pill I took Friday night.) At any rate, I visited a friend in the hospital, went to synagogue, came home and CRASHED with a massive nap. Upon awakening, we ate dinner and then did a small sopping expedition. By the time we came home around 930 PM, I was wobbly on my feet again. By the time we got into bed, I was tired but could not sleep until almost 2 AM.

I guess I should report all these symptoms to the nurses on Monday when I get chemo. Maybe they can tell me if the side effects are related to the chemo combo or tapering off the antidepressants. That's been a week now and I still get the not-quite-vertigo feeling when I move my head too quickly.

I feel more energetic today but still have that creepy sense that the world is spinning even when I am not moving. Rik and I worked in the garden together, me mostly trimming hedges and deadheading the early tulips while he added compost to the raised beds and the strawberries. We have both afternoon and evening plans, a rare occurrence, and I am looking forward to living in the moment and enjoying visits with friends. Chemo planned for tomorrow.

May 06, 2011

Teacher Appreciation Week

Yet another national celebration, today is the last day of Teacher Appreciation Week.  If you know a special teacher, thank them for the work they do. 


I married a teacher: a dedicated education professional whose commitment to teaching and lifelong learning helped him earn a graduate degree in education at age 35; gave him a career in both middle school and high school teaching geography, the subject he loves; and allows him the opportunity to train more teachers through his work with graduate students in education. Rock on, Mr. Katz!


If you have fond memories of a teacher who made a great impact on you, it's not too late to thank them. I reconnected with my high school French teacher a few years ago and took her out for lunch. Merci, Mlle. Cirelli, for teaching me!

Still tired and stupid

I think I may have figured out the tired and stupid feelings. The day before I started the Avastin/Abraxane combo, I also stopped taking my antidepressant. I'd decided to taper down after being on sertraline since last July. It took about six weeks but I finally had the last dose last Saturday. A friend warned me that going from 12.5 mg to 0 mg would be harder than going from 25 mg to 12.5 mg, and boy was she right! So it's possible that my fatigue, insomnia, and feeling stupid is more related to stopping the sertraline than to starting the new chemo combo.

At any rate, having three evening activities in a row this week didn't help either. Somehow I got through everything (still feeling stupid) and plan to do practically nothing today. I will forego yoga so that I don't have to drive while feeling this way. Plus that will allow me to take a nap. I hear the sofa calling now!

May 04, 2011

Is this chemo combo making me stupid?

Okay, maybe I've overdone it the past few days. I had evening activities Tuesday and Wednesday (and more on Thursday and Friday). I'm trying to live my life -- stay connected, run errands, meet a friend for lunch. But I feel as though this Abraxane/Avastin combo makes me both stupid and tired, as though I am running at 50% of normal.

Stupidity

At last night's meeting I had some trouble making coherent sentences. My typing has been a little incoherent, so I've had to redo most of my computer interactions. At rehearsal tonight, I had difficulty concentrating on song words, even for the songs I know by heart.

Fatigue

It seems like I am tired all the time. Not necessarily sleepy at bedtime, but constantly run down. Last night I was so tired I stumbled around the house, trying to get ready for bed, but I couldn't fall asleep. (And then I had massive foot cramps every hour, all night long. Okay, maybe lack of sleep is affecting me too.) I hit a wall this afternoon at 3 PM and fell sound asleep on the sofa.

And Monday's was only the first dose of this chemo combo.

May 03, 2011

Abraxane + Avastin

Yesterday was a long day at the Cancer Institute. We arrived at 9 AM and after a short wait, the charge nurse told us that this very day was the first business day Swedish starting using a new consent form. So we walked over to Dr G's office (avoiding most of the pouring rain by going through the hospital walkway).


Dr G explained about the new form, we both signed it, and then he showed me the Swedish Ca Inst's usual protocol for Abraxane , which included Avastin. I'd never had Avastin, and although there has been recent speculation about its effectiveness against metastatic breast cancer, Dr G wanted me to try it. We trudged back to the Ca Inst, signed form in hand.


About Avastin: because it was studied with other chemos and never on its own, the side effects are those related to chemo (generalized weakness, pain, abdominal pain, nausea & vomiting, poor appetite, constipation, upper respiratory infection, low white blood cell count, kidney problems, bleeding problems), diarrhea, hair loss, mouth sores, headache). We'll see which ones I may get.


Because of the last minute change to include Avastin, I had to have some additional tests to check my creatinine level via blood work, take a urine sample as well. I passed all the tests, but meanwhile had to wait for the results. Then it turns out that when these two drugs were studied together, the Avastin was always given first. Since I gave the urine sample more than an hour after the blood, more waiting. We had a friend to visit with, so it wasn't so bad, but still... Dr G did not choose one of the boxes on the Avastin quantity, so the nurse had to make another call to him to determine the dose.


At 1215 PM, Rik and J went to get us some lunch. I had just taken my first bite of Mediterranean Kitchen's farmer's wings (the BEST!) when the nurses showed up to start the Avastin. I had a 4 mg dose of the steroid Decadron as a premedication. The Avastin was given this first time over 90 minutes. It finished around 230 PM with no poor side effects. Our friend J said goodbye after spending a chatty and very garlicky three hours with us.


Next I asked about the IV Zofran anti-nausea med, which it turns out Dr G had not ordered, so the nurse had to call him again. I got the Zofran, had to wait another 20 minutes for it to provide protection, and finally got the Abraxane. Thirty minutes later, we were able to leave. All in all, I spent almost 8 hours in that chemo chair and had a backache you would not believe. Thank goodness we had my iPhone and Swedish's WIFI as well as books and company!


On the way home I simply had to have ice cream, so a quick stop at Molly Moon for some ginger ice cream with hot fudge put me in a better mood. We came home, I quickly fed the dog, checked email, got into my pajamas and was asleep by 6 PM. Rik walked the dog and stayed up a while longer, but he too was asleep by 930 PM.


I woke up today feeling more energetic, with no ache in my ribs at all, even after some hard sneezes. Now it's time to walk Bob and get on with my day. I've already showered, eaten breakfast, re-ordered new prescriptions, checked email, and blogged here. More news later.

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I dance with cancer. Oy!