April 30, 2010

komen race for the cure in ISRAEL

i recently learned that the komen race for the cure will take place for the first time in israel on october 28, 2010. although i am not always a fan of komen (particularly their pink ribbon campaigns and some fundraising tactics), they are the "600-pound gorilla" when it comes to breast cancer early detection advocacy.

i read all the web pages about the israel race and mission and would seriously consider going. rik and i were last in israel in 2003 and i would love to go again. plus the concept of racing (or in my case, walking) around the walls of the old city of jerusalem moves me deeply.

i fell in love with israel when i spent a year studying there after high school. every job i've held with the jewish community offered me the opportunity to travel to israel. i have never been to the great crater (machtesh ramon) and rik would love to show it to me. my mother was talking recently about how she and a friend would like to travel to israel together.

and although i am tolerating this chemo well, with minimal side effects, and expectation that it will be very effective, the reality is that none of us knows how long we have. when might i get such an opportunity again?

in the spirit of setting and achieving milestones while living with advanced cancer, and putting out to the universe exactly what you want so that you get it, i am going to say now that i want to participate in this first komen race for the cure in jerusalem.

April 29, 2010

Hear me sing!

I have mastered a new internet skill and uploaded an audio file of the recent Dunava concert. I performed the serbian drinking song Evo Banke. Other than one blunder at the very end, I think it sounds pretty good!

Kudos to the band: Marchette DuBois on accordion, Jane Hall on dumbek, and Dunava's own Dina Trageser on tambura!


Here's a ten, my gypsy, play for me!
I will listen to you, you will play for me.
We'll open a bottle of champagne and drink it up,
and when the moment comes, the champagne will knock us down!

// Evo banke, cigane moj, cigane moj, sviraj mi ti! //

Ja cu tebi svirati
ti ces mene slusati
Evo banke, cigane moj
cigane moj, sviraj mi ti

// Sampanj cemo otvoriti, otvoriti i popiti //

A kad dode pravi cas
Sampanj oborice nas
Evo banke, cigane moj
cigane moj, sviraj mi ti!

April 28, 2010

hear dunava on hold

Starting today Seattle OnHold is featuring the music of my choir, Dunava. The showcase lasts three months and plays on 10,000 city phone lines and the free Seattle OnHold podcast. Scroll down the page to Dunava. There is also a link to purchase our cd at cd baby and a link to download via itunes!

WellPoint routinely targets breast cancer patients

this is why our country so badly needs health care reform. shame on wellpoint!

click to read this article published on april 22, 2010: WellPoint routinely targets breast cancer patients.

here is a follow up article from yesterday's los angeles times: WellPoint and Blue Shield of Calif. to stop dropping sick policyholders.

make your outrage known by contacting WellPoint directly. help get them to reinstate the women with breast cancer whose coverage they dropped and to pay all unpaid expenses of these former clients.

WellPoint, Inc.
120 Monument Circle
Indianapolis, IN 46204
(317) 532-6000

elbow update

i saw the orthopod yesterday and dr. w says my elbow is healing just as he expected. all the skin abrasions have cleared up, including the one that was most recently open. he set me some additional exercises and told me to return in three weeks. (i hope by then he will clear me to drive.)

the exercises include --
- raising my left hand to my mouth (i'm at the shoulder so far)
- with my upper arm on a table, lifting a can of soup as i bend my arm
- straightening my arm
- turning my hand palm up and down

i do 10 repetitions, four times a day.

dr. w also told me i could start getting out of the brace as much as i wanted as long as i am not too active. i can type without it, read, watch tv, even sleep. last night i took it off for about three hours and it felt great. that should help improve my lymphedema too. unfortunately i can't put the brace back on unassisted, so i can only remove it when i know rik is here to put it back on.

still, this is a step in the right direction!

new york times article by long term mets survivor

if katherine russell rich can live 17 years with metastatic breast cancer, then so can i!

read her article: 17 Years Later, Stage 4 Survivor Is Savoring a Life Well Lived

April 27, 2010

you feel like hell. you don't have to look like it.

check out this site some facebook friends told me about -- ChemoBabe

day after first chemo

the first chemo went as well as we could expect, given that --

1) the onc never faxed over the orders. we had to wait an hour for this to happen. thankfully the swedish cancer institute has plenty of abraxane on hand.

2) dr. g had told me there would be no pre-meds. his actual orders included decadron (a steroid that wires you), reglan and compazine (to prevent nausea) and ativan if needed for stress. lynette, the wonderful chemo nurse, successfully negotiated with him in removing the decadron. something gave me the twitches for about 15 minutes (she thought it was the reglan and/or compazine) but a little ativan took care of that.

he also ordered some take-home meds from the pharmacy -- compazine and zofran (for nausea) and more ativan (for stress, nausea, and even pain relief)

my terrific lymphedema therapist p came to the cancer institute to give me some manual lymphatic drainage massage and review my elbow. every day i have a tiny bit more flexion in the joint, so that makes me happy. but i was so woozy from all the drugs that i could barely interact with her.

the good part about going to swedish for treatment (instead of at my onc's office) is that there are many chairs spread out all over the floor. there was enough room in my bay for rik to have a seat and for the nurse to work while he was sitting there. some bays are shared by two or three patients. there are also private rooms. it's all first come, first served, unless one has a medical need for a bed to lie on.

i went home and napped for a couple of hours. a friend from synagogue brought over dinner (chicken schnitzel, rice, salad -- very israeli). it was delicious. rik and i watched a bit of tube and he fielded some calls from family and friends. others calls went straight to voice mail.

i woke up with rik at 610 am today after a reasonable night's sleep. we did the usual shower/dress/exercise dance together, he walked the dogs and i had breakfast, then took my morning nap.

all in all, i feel about the same this morning as i did yesterday morning.

still praying the mantra:
this chemo is effective
it has minimal side effects
i tolerate it well

join me in this mantra, won't you?

April 26, 2010

what i wore to chemo today

chemo today

it's a few minutes before we leave for my first treatment of abraxane. i confess i am nervous about the whole thing. even though i have received an infusion of the bone strengthener zometa every month for the past 7+ years, and i know what to expect with regard to hooking up the port etc., i am still at a loss as to what to expect from abraxane.

i've read about it online, talked with friends who have taken it, and still don't feel like i have enough information. those of you who know me well understand that i function best when i have LOTS of information.

of course i am also nervous about how i will respond to abraxane, how quickly i will notice side effects, whether it will be effective, even if i should have insisted on being enrolled in a clinical trial. (the trial recommended to me, for a drug called dasatinib, is not available in seattle. my onc would have had to become a trial investigator and that takes lots of time. he really wanted me to start treatment asap.

this is my chemo mantra:
- it should be really effective
- it should be easily tolerated
- it should have minimal side effects

i say these three things every time i talk about the chemo. i am putting these specifics out to the universe in the expectation that we get what we ask for.

April 24, 2010

another death to mets

i am sad to report that my friend w died last night of metastatic breast cancer. she was 35 years old. about four months ago, w and her husband became first-time parents to a newborn infant via surrogate. zichrona l'vracha, may w's memory be a blessing to all who knew her.

w and i met at a young survivors retreat in las vegas a few years ago. we had another opportunity to meet in seattle more recently and bonded via email and blogging. w was vivacious, smart, funny, a committed teacher and a giving, loving friend, daughter, sister, wife and mother.

her death hits especially hard today. as i look to monday's chemo, i can't help but face my own mortality. again.

April 23, 2010

chemo approved

just got a call from the oncologist's office and pacificare has approved my being treated with abraxane. dr. goldberg, seattle's best oncologist, wrote a detailed note explaining why i needed this particular drug. this was a tremendous relief to hear.

i am as ready for monday as i can be.

the better wig experience

today my dear friend g took me to william collier design, where i had a terrific wig fitting experience.

william and his wife judy own the salon and both spent an hour with me. they listened to my cancer synopsis, explained the different kinds of wig options, and tried several wigs on in each price point.

the synthetic wig fit okay but not great. the cap was too close to my ears and would irritate them. the "hair" appears overly shiny in both natural and artificial light and clearly looks like a wig.

i tried two human hair wigs. one had an entirely machine-made lining. the second one featured both hand-tied "scalp" with natural looking coloring (i.e. skin colored) and machine-tied hair. there is also an entirely hand-tied wig. (i didn't try that kind.)

of all the choices, the hand- and machine-tied one fit the best and looked the best. judy called the manufacturer to see if they had one in my color/cut in stock. indeed they do, and she will order it for me to check out -- at no charge and no commitment to me. that's what i call customer service.

the price, however, was much higher than at the first wig place i went to, which also sells human hair wigs but didn't have a sample for me to try on.

in discussing the options my doctor's office had asked me to get from wcdesign the CPT code to submit to my health insurance company. judy explained that they bill as "cranial prostheses for chemotherapy hair loss" under the category of durable medical equipment. we happen to have a DME benefit that would easily cover the cost of this wig, assuming pacificare will authorize it. the cost includes fitting, trimming to suit my head, and follow up appointment to learn about wig care. the first wash and style is complimentary.

apologies to rik, but i am clearly not a blonde. or a redhead if the red is the color of a new penny. the pixie cut is cute, and there was a brown shade with a hint of red that is very close to my natural hair color.

i was glad i already had my hair cut ultra-short, as it gave me a better sense of fit and feel for the wigs. they were warm, a little itchy and somewhat uncomfortable -- about what i expected. but at least when i want to look like i have hair, it will look like my hair.

and if i lose hair while my left arm is still in the brace, rik will have to learn how to put the wig on me. as he says, he didn't know being a woman was so complicated!

April 22, 2010

getting ready for chemo

i am spending the week seriously preparing for monday's chemo. you wouldn't believe the number of things that must be done before they shoot you up with the meds.

many chemos cause mouth sores and dental issues, so it's important to take care of dental business before starting treatment. thankfully i had an appointment last week and saw both the hygienist to have my teeth cleaned and the dentist. otherwise i'd be hoping they could squeeze me in at the last minute.

almost every chemo causes alopecia, or hair loss. chemotherapy destroys rapidly-dividing cells; tumors as well as hair and intestinal flora.

somehow women seem more impacted by this side effect, perhaps because it's more socially acceptable for a man to be bald, even under a hat or cap. you also lose your eyebrows, eyelashes and other body hair.

so on tuesday i managed to see my hairdresser, who did exactly what i asked: she gave me a haircut that is overall only about one inch long. i remember from the radiation to my skull that it felt less traumatic to lose short hair than long hair. i think i look like jamie lee curtis (without the grey).

of course you can cover your bald head with scarves, caps and hats, but sometimes you just want to look as though you have hair. i went for a wig fitting to a place that only makes human hair wigs for (gasp!) $700. the owner is a lovely guy but didn't have a sample for me to try on and i can't envision spending that kind of money on any product sight unseen. it's unclear if my health insurance will cover a wig since it's not deemed to be "medically necessary." maybe if i get the doctor to call it a cranial prosthesis for chemotherapy hair loss pacificare will cover it.

tomorrow i hope to go to the local american cancer society office to see what they have. acs has an online catalog too, and friends who are long out of treatment are searching through their boxes for some caps etc. i can borrow. if i'm going to be bald indefinitely, i want a wide selection of head coverings.

i also saw my great naturopathic doctor at nw natural health who i asked for advice and support in keeping me strong during chemotherapy. since we have no way to know how i will respond to the chemo, or how long i will take it, dr. bufi is a very important part of the process. (for some reason i never saw him before taking the 5fu last year. if i had, i might not have ended up in the hospital for two weeks.)

after an hour of conversation and a look at my recent blood work and scalp mets tumor pathology report, dr. b prescribed several new supplements --
a digestive enzyme with each meal to make sure i get the most benefit from my food
l-glutamine powder (2 teaspoons twice a day mixed in water) to counteract and minimize the potential for peripheral neuropathy from the abraxane
b6 complex (for the same reason)
stress arrest (don't you love that name?) to reduce my level of general anxiety
i will continue on multivitamins and calcium magnesium 3:1 for bone health. he stopped the vitamin d supplement since the recent blood work showed a good level of vit. d in my system and the days are getting longer, meaning more sunshine.

of course they sell these items in their office, which is the one thing i don't care for about seeing a naturopath: they almost always prescribe items they sell, thus making a profit on the sales as well as on seeing patient. but all naturopaths seem to do this. i am fortunate that pacificare does cover the services of my naturopath.

other stuff
i am still seeing both the lymphedema therapist and the elbow therapist, although i hope to combine both treatments with one provider. dr. w the orthood approved the lymphedema therapist to treat my elbow but didn't tell his therapy staff. hopefully that will all get worked out today and i can save on at least one copay.

sadly i haven't been able to get to my gilda's club support group in recent weeks. i've had to schedule too many appointments for the same day and time, plus i feel awkward asking for a ride to a two-hour meeting. but if i feel well next week, i have a ride lined up from a friend who was heading in that direction at that day/time anyway.

on top of all this i needed a pedicure. this is the one area of personal care that rik can't quite manage for me, and i certainly can't reach my own toenails with my left arm in a brace. so i went to a local nail salon where for $27 pus a tip they spent about 45 minutes pampering me with a warm foot soak, toenail and cuticle trim, pumice rub on calluses, lotion and foot massage.

now i have lovely orange-peach colored toenails! if only it would get warm enough outside to wear sandals.

April 21, 2010

2009-2010 breast cancer stats

according to the american cancer society's publication, Breast Cancer Facts & Figures 2009-2010, in a chart on page 9, 24.7% of white patients with metastatic disease will live five years.

i have already outlived these stats, and the ones i was given in 2002 when re-diagnsoed with mets.

the same brochure also gives more information about survival rates on page 29:
Five-year survival statistics are based on cancer patients diagnosed between 1999-2005, 10-year survival rates are based on diagnoses between 1995-2005, and 15-year survival rates are based on diag- noses between 1989-2005. All patients were followed through 2006. Relative survival rates are used to adjust for normal life expectancy (and events such as death from heart disease, accidents, and diseases of old age). Relative survival is calculated by dividing the percent- age of observed 5-year survival for cancer patients by the 5-year survival expected for people in the general population who are similar to the patient group with respect to age, sex, race, and calendar year of obser- vation. Relative survival rates are not calculated for Hispanics/Latinos, Asian Americans/Pacific Islanders, and American Indians/Alaska Natives because reliable estimates of normal life expectancy are not available for these groups. Therefore, cause-specific survival rates are presented. Cause-specific survival rates are the probability of not dying of breast cancer within 5 years after diagnosis. Cause-specific survival does not account for stage and age at diagnosis. When referenced as such, 5-year survival statistics were originally published in SEER Cancer Statistics Review, 1975-2006.

Horner MJ, Ries LAG, Krapcho M, et al., eds. SEER Cancer Statistics Review, 1975-2006. National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2006/, based on November 2008 SEER data submission, posted to the SEER web site, 2009.

it's a lot of medical mumbo-jumbo, but basically i have already beaten the odds several times. now we have to hope that vast array of chemotherapies and other targeted therapies will continue to keep my cancer under control.

April 20, 2010

new 'do

this is me with my brand new, ultra short, pre-chemo haircut.

i think i look like jamie lee curtis.

April 19, 2010

new theme song

i thought of this as i was trying to relax after the big news today re chemo. it's my new theme song.
i am not dead yet,
i can dance and i can sing.
i am not dead yet,
i can do the highland fling.
i am not dead yet,
no need to go to bed,
no need to call the doctor
'cause i'm not yet dead!

turn up the sound on your speakers and listen here for an audio clip from monty python's spamalot.

chemo starts monday

i am scheduled to start abraxane on monday (provided the insurance company will pay for it). it's going to be weekly for a couple of hours, indefinitely.

let's hope for a rapid and effective response with limited side effects.

a worthy cause

my friend josh isaac and his family will again participate in the nw sarcoma dragonslayer hike, bike and trike event on april 24. josh has metastatic epithelioid sarcoma. this is what he has to say about participating in such a great event.

you can learn more about team isaac here. to make a donation click here.

April 18, 2010

lbbc article

a few months ago i was asked to write an article on Achieving Milestones When Living with Metastatic Breast Cancer for living beyond breast cancer's spring newsletter. the newsletter just came in the mail but i didn't realize my article was inside. fortunately i was interested in the supplement on metastatic disease. imagine my surprise when i turned the page and saw our photo!

scroll down to the bottom of the link to read the pdf version. you need to download adobe acrobat reader (for free) to see the pdf.

last night's Dunava concert

yesterday my balkan choir, dunava, performed what has come to be an annual gig at a local unitarian church. the sanctuary has a domed ceiling which creates terrific resonance for speaking and especially for music.

we've been rehearsing for weeks to pull this off, learning new material both as a group and as individuals. we invited two guest musicians to join us on accordion and percussion. d, our director, honored my request (among other's) to perform a solo.

the theme of the concert series was remarkable women. the first half of our performance was divided into themes of work, war, marriage, and love, with a tongue in cheek sub-grouping of songs that compare women to birds. (the women always win.) we wore original and stage recreation costumes.

the second half was the dunava cabaret, with some group numbers and five soloists. we changed into our new skirts and they even got a round of applause!

the audience was so appreciative. we like to divide up the talking, so i introduced all the costumes. later i "set the stage" by asking people to imagine they were sitting in a cafe with a favorite companion, a delicious drink, smelling the aromas of roast lamb, garlic, fresh bread and coffee.

i think my rendition of the serbian drinking song "evo banke" brought the house down. certainly i had fun, and if the audience clapping and singing along is any indication, they did too.

it was easy to find the joy in life last night!

April 16, 2010

arm ok

the orthopod says my skin abrasions are normal and just to keep an eye out for redness and fever. hopefully no chance of infection!

i also got a lovely shoulder massage from the therapist. and a set of exercises to do, 10 reps, 3-4 times a day.

sore spots

yesterday morning we noticed three small skin abrasions on my left arm. it's probably from the brace rubbing against the sleeve rubbing against my skin, and complicated by the lymphedema. still, i can't risk a skin tear and infection. it could be life-threatening and put me in the hospital. so i called the physical therapist who recommended i see the orthopod for a brace adjustment. that's scheduled for later today.

today we saw five skin abrasions. the appointment is at 3 pm and i can barely wait to find out what the doc can do.

April 13, 2010

scalp biopsy

i had one bump on my head biopsied today and it was all over before i could get tense. of course the 0.5 mg ativan i took helped a lot. dr a, the dermatologist, is so gentle. plus he mixes his lidocaine with sodium bicarbonate which takes away most of the sting. must remember to recommend this to my infusion nurses.

biopsy results take a week but doc said he'd rush the cancer or not? preliminary part. the second piece details what kind of cancer, er/pr status etc. maybe i will get a call by end of the week. if not i see the onc on monday.

i think there is a 10% chance the femara i am taking for the second time is working, will know on friday. if it's not, and the bumps are indeed mets, then on to chemo asap.

someone found a clinical trial for skin mets that's right here in seattle: "A Phase II Study of Topical Imiquimod and Weekly Abraxane for the Treatment of Breast Cancer Cutaneous Metastases". maybe i will qualify.

i hate the waiting. at least my relocated elbow keeps my mind off "scanxiety".

we treated ourselves to ice cream at molly moon's afterwards. 1/2 salted caramel and 1/2 scout mint, topped with hot fudge helped restore my equilibrium.

April 12, 2010

the jointed brace

i saw the orthopod today and he was pleased enough at the way my elbow is healing that the nurse removed the splint and i got to scratch my skin for the first time in two weeks.

just removing the splint felt weird. my arm felt so naked! i had to place my left arm on a pillow and, supporting it with my right hand, walk to the xray room. then after the doc's exam, he had me lose the pillow and support just the hand while we walked over to the therapy room.

my arm hurt a bit and ached a bit more, like when you bang your funny bone and the "echoes" continue. i felt very fragile, especially when dr w told the therapist that my elbow was still unstable.

dr w assures me my edema doesn't seem to be any worse than anyone else's with the same injury. the therapist placed a stretchy tube of material over my arm. it provides minimal compression but seems to be a good first step. then she helped me put on my glove so that any edema didn't back into my hand. she helped me back into my zip-front top and then put this contraption on over it.

she told me the four buckles lock into place like ski boots do. since i don't ski, that meant nothing, but rik recognized the idea. there are two buckles above my elbow and two below, locking my arm into a 90 degree angle. in two weeks i will return for a checkup and to hopefully have the angle increased from 90 degrees to a wider angle. thus, incrementally over the next 4-6 weeks, my arm will be allowed to straighten out to its full length.

i will wear the brace 24 hours a day for the first week, even in the shower. (we'll continue to put a plastic garbage bag over it to keep it from getting wet.) i will be able to wash my arm gently with a cloth and put lotion on, an important part of lymphedema skin care. after a week, dr w wants me to try sitting on a bath bench and cradling my naked arm against my belly while showering. i am so thankful we re-did the bathroom last summer! the walk-in shower, second, hand-held shower head and teak bench have all made this unpleasant experience a bit easier.

i will wear the glove during the day and bandage at night to maintain compression in my hand.

from the doc we went to costco. look, when you need toilet paper, you need toilet paper! we also picked up fresh mushrooms, dried cherries, maple syrup, smoked salmon, tissues, vanilla, salty marcona almonds, dishwasher AND dishwashing liquid soap, "he" perfume and dye free laundry detergent, gassed up the car and each had a hot dog for lunch. i also found a cute purple cotton jacket-y thing that buttons up the front so i will have a third clothing option for the next six weeks.

because the brace weirded me out for the first few hours. i felt a bit like dr frankenstein's monster. after all this i did a little sleep therapy (i.e. took a long nap) and woke up more in touch with everything. by the end of the day i was able to wrap my brain around the concept. and of course rik has been very patient with me as i adapt to each new change.

tomorrow it's off to the dermatologist to have the bumps on my head biopsied. these days when asked what i do for a living, i answer: "i'm in health care management -- my own!"

April 11, 2010

we'll build our house and chop our wood and make our garden grow!

(that's a quote from leonard bernstein's candide, only one of the best musicals ever written. it's playing at seattle's 5th avenue theatre soon and I CAN'T WAIT!)

today farmer rik planted the early spring part of our garden. he seeded chard, spinach, mesclun lettuces and radishes. the potatoes will have to wait a bit. the tomatoes go into pots in late may. i have given up on growing tomatoes from seed here in the not-quite-sunny-enough pacific northwest.

rik had assistance from the junior and senior canine supervisors, bob and pumpkin. my role was to sit comfortably on the chaise drinking a can of cold seltzer. it was a gloriously sunny and warm afternoon, the first such in weeks.

later i went to choir rehearsal where we also sat outside and attracted the attention of the neighbors.

all in all, it was a great day, with limited worries about dislocated elbows and cancer. more news tomorrow when i see the orthopod. here's hoping i am healed enough to progress to a jointed brace right away.

April 09, 2010

finding joy

my friend wynne and i met in 2007 at a retreat in las vegas for young women with metastatic breast cancer. sponsored by young survival coalition, it was the first such activity ysc did for women with mets. (it happened during the same week elizabeth edwards was diagnosed with mets and people magazine interviewed me in a sidebar article.)

those who attended the retreat laughed and cried together. strangers at first, we bonded quickly and started our own list serv after we went home.

wynne came to seattle about a year ago and we reconnected. we've been in e-touch ever since and read one another's blogs to stay tuned. she's back in the hospital again and found a piano available for patients' use. (now that's a hospital!)

this video, of wynne warming up and playing her beloved chopin, brought tears to my eyes. it's so easy to be lost in one's own pain and can be so hard to find joy. wynne's playing reminded me how grateful i am that i can still dance a bit, sing with my choir, dunava, and lead services at synagogue. that's where i find my joy.

so i am going to sing my heart out tonight when dunava performs at the radost folk ensemble fundraiser. and do the same next weekend when we have our annual spring concert.

if you find joy in the little things, you will always be surrounded by joy.

April 08, 2010

to my readers

i am touched that 46 of you regularly follow my blog. the blog started as a way for family and friends to know what was going on. most of those folks check often but haven't signed up as official "followers." i never expected random people to be interested in what i have to say.

i feel honored that so many of you who i have never met care about me. you inspire me to write frequently, honestly and with candor. thank you for sticking with me!

head bumps

saw the dermatologist yesterday and he suspects the bumps on my head may indeed be scalp mets. evidently skin mets are not unusual in breast cancer, although the only person i know with scalp mets has a completely different kind of cancer.

i managed to negotiate successfully NOT have a biopsy that moment but to wait for dr a and dr g to talk about next steps. my plate is overflowing with medical stuff right now and the last thing i wanted was the pain of lidocaine while he numbs my head, two punch biopsies, stitches in my scalp, a headache and maybe bleeding afterwards. dr a is a good doc; he listened carefully and since this isn't life-threatening, agreed to talk with dr g the oncologist.

the most likely scenario i can predict is that dr g will start me on chemo immediately upon his return. of course we will see what my latest tumor markers indicate, but chances are good that they have continued to climb, indicating that the current drug isn't working either. maybe i can negotiate a short reprieve while i recover from the dislocated elbow but that would be it.

you know i don't look forward to chemo (now that's an understatement) but my cancer has basically not been effectively treated for almost a year. it's been relatively quiet, but scalp mets void the bargain i made with my cancer 7+ years ago. if it was quiet i would give it room in my body. but if it gets out of hand, then we pull out the big guns.

chemo, here we come.

April 07, 2010

post-pesach feast

rik and i feasted on our traditional end of passover meal -- pizza and beer. oh, the joys of yeast! we went to pizzeria fondi and partook in the pizza per due 2 for $20 special. we shared a medium salad with candied walnuts, apples and goat cheese over frisee lettuce and arugula, then split a vegetarian pizza. the deal included two beers; we chose the amber lager.

even after all that chametz i still wanted to celebrate so it was off to trophy for his and hers cupcakes. mine was peanut butter/chocolate and his triple coconut.

what a delicious way to end eight days of matzah (burp!).

pt report

i saw the physical therapist yesterday and when she measured my left hand, the swelling at the finger, across the knuckles and at the wrist was just about the same as when i started seeing her in february. this is good news in that it seems to indicate my hand is not swollen out of control by the elbow dislocation. of course, we have no idea what my arm is doing under the splint....

she did some mld massage and we scheduled more appointments for after i see the orthopod next week and he (hopefully) removes my splint.

April 06, 2010

yizkor again

several times a year jews remember our beloved family and friends who have died. we light the 24 hour yizkor candle at yom kippur, sukkot, pesach and shavu'ot.

a few weeks ago i was asked to lead the short yizkor service on the last day of pesach. i was honored, having only done this once before, last fall for yom kippur, and hadn't felt i did such a good job then (plus was overwhelmed by so many people in the congregation).

i practiced diligently but after last week's fall wasn't sure i could do it. thankfully my good friend s gave me a ride to synagogue today. i arrived 30 seconds before yizkor was supposed to start: services were moving faster than the rabbi anticipated.

i felt more confident this time. no doubt having fewer people present helped as well. i was able to slow down, concentrate on each note and really be in the moment, so much so that i was caught up in the emotion of those present and my own memories of my father, zichrono l'vracha, may his memory be a blessing.

yizkor can be very powerful. where else do you sit in a roomful of people who are crying, blowing their noses and wiping their eyes while they remember their dead?

i was moved to be able to move others so and help provide a relief for our collective grief.

April 05, 2010

quiet weekend

the dislocated elbow has kept me quiet all weekend. it's just as well that typing with my other hand is limiting, since i don't have much to report.

we went out to shabbat dinner. had a lovely visit saturday afternoon with our good friends on mercer island, including a scrabble game and scrounging dinner together. on sunday i went to choir rehearsal and as the only soprano present, managed to stay (mostly) on tune. rik made roast cornish game hens for dinner and we were in bed by 10 pm.

today he went back to school so we both got up early - him at 6 am, me at 6:15. the ativan i took the night before to help me sleep hadn't quite worn off and i noticed some vertigo after my shower when rik was helping me dress. i took a nap and that seems to have helped.

this will be a week of medical appointments. today the dentist!

April 02, 2010

yay new orthopod!

i saw the new orthopod, dr bill wagner, today. he specializes in hands. dr w says the elbow joint is still in place (took new xrays) and wants to keep me in the splint until 4/12 then move to a jointed brace. no surgery now!

using a powered cast removal saw, the nurse cut off part of the splint covering my hand. she was so careful -- slid a long plastic ruler-thingy under each section and sawed one inch at a time, moving the ruler thing from place to place around my wrist. dr w padded the rough edges and told me i was good to wear my lymphedema glove. (i will bandage at night.) rik was able to slide the glove on for me.

doc and i were equally concerned about skin care on my lymphedema arm and he most gently washed away the plaster residue that had stuck to my skin.

i will see the lymphedema pt on tuesday and maybe she will be able to reduce some of the swelling in my hand, wrist, etc. in the meanwhile rik is giving me manual lymphatic drainage massage in the mornings.

good news for today!

April 01, 2010

ouch my elbow!

it would have been a wonderful start to pesach if, after the first seder, i hadn't slipped on a steep, wet driveway and fallen on my left elbow. i was convinced my arm had broken; it hurt almost as much as the left femur did seven+ years ago. our hosts called 911 immediately. c brought out a blanket and pillow for me (it was wet on the street and really cold outside). everyone else freaked out.

the fire truck arrived first and they rolled me onto a back board. then the ambulance came and after some discussion, the emt's decided not to try to put an inflatable splint on my arm for fear it would cause me too much pain. (a good call.) they took me to swedish hospital's er on first hill where the wonderful medical team cut my purse, coat, dress, t-shirt and bra away so they could access my port, get a better look at the elbow and see if i had any other injuries.

after accessing my port they gave me very strong pain meds. the er team tried twice to "reduce" or relocate my elbow but it kept slipping out again. at about 3 am they reached an orthopedist specializing in hands and he came in, was successfully able to reduce the joint. multiple xrays confirmed that there was no fracture.

my left arm is splinted from the knuckles to the shoulder to immobilize my elbow and the arm is in a sling to support the weight. since they'd had to cut off all my clothing, the hospital sent me home in a gown and sweat pants. we finally got home around 5 am.

since tuesday my pain has steadily decreased. with rik's help i've been able to shower, put on clean clothes, get around the house. he is doing everything -- feeding me three meals every day, doing all the household stuff, feeding and walking the dogs, you name it. thankfully he was home this week on spring break.

i see the orthopod again friday morning and will learn more then about whether or not i need surgery. in the meantime our friends have stepped up to help and the synagogue's mitzvah corps is on alert.

my lymphedema is out of control. (i had to fall on my left arm.) the physical therapist called from her vacation to suggest some tips on reducing the swelling in my hand and fingers from the splint.

sorry for typing all in lower case but it is really hard to shift with one hand to get a capital letter. i will post more as i am able but it looks like i am facing 6-8 weeks in a cast. more tomorrow after we see the doc.

at least i get to dream about all the shopping i will do to replace the raincoat, dress and bra...