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!

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 ....

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!

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. 

Having trouble viewing all the details below? Click here to go straight to online registration.

DON'T MISS OUT ON THE BEST SHOW IN TOWN!  IT WILL INSPIRE YOU AND TOUCH YOUR HEART. 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 Appear 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

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.

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.