I finally got approval back from the insurance company about my next surgical procedure. Hopefully soon I will have the UVV surgery to help me to get some real sleep at night.
Last day of soccer tomorrow, and it can't come soon enough I need a break.
I finally got the appointment times / dates for my annual transplant evaluation (two months LATE). The jury is still out on the new direction that heart / lung transplant dept. in has taken, I might start looking toward the other transplant team for heart / lung at the other transplant center for lungs in Dallas.
Friday, April 30, 2010
Healthy Spirits: Midnight Sun and More!
The new stuff.
1. Hoevebrouwers Toria Tripel
2. Brouwerij De Dochter Van De Korenaar-Courage
3. Brasserie de Cazeau Tournay
4. Brasserie de Cazeau Black
5. Midnight Sun Panty Peeler Tripel
6. Midnight Sun Meltdown Double IPA
7. Midnight Sun Sockeye Red IPA
8. Midnight Sun Kodiak Brown Ale
9. Midnight Sun Arctic Rhino Coffee Porter
10. Valley Brewing Company IPA is back!!!
11. Valley Brewing Company London Tavern Ale is back!!!
cheers,
dave hauslein
beer manager
415-255-0610
1. Hoevebrouwers Toria Tripel
2. Brouwerij De Dochter Van De Korenaar-Courage
3. Brasserie de Cazeau Tournay
4. Brasserie de Cazeau Black
5. Midnight Sun Panty Peeler Tripel
6. Midnight Sun Meltdown Double IPA
7. Midnight Sun Sockeye Red IPA
8. Midnight Sun Kodiak Brown Ale
9. Midnight Sun Arctic Rhino Coffee Porter
10. Valley Brewing Company IPA is back!!!
11. Valley Brewing Company London Tavern Ale is back!!!
cheers,
dave hauslein
beer manager
415-255-0610
Healthy Spirits: BEER OF THE MONTH CLUB MAY 2010
...is now ready for pick-up.
cheers,
dave hauslein
beer manager
415-255-0610
cheers,
dave hauslein
beer manager
415-255-0610
See?
I had my blood counts checked today, and my hemoglobin was a robust 12.7. I give credit to the iron-rich Rice Krispie treats I've been consuming. Oh, Perfect Brownie Pan, is there anything you can't do?
i bought a swimsuit
And I posted about it for BlogHer.
I won't say the search wasn't traumatic:
I rejected suits that didn't cover my scars, that were two big, too small or both at the same time. I worked up a sweat trying to get tangled bathing suit straps over my shoulders, often resulting in a look that was reminiscent of a wrestling uniform. I cried a little bit. Regular suits left me feeling too exposed and mastectomy suits bagged on the chest when I was not wearing a breast form.
You can read the rest of the post here. I even posted a picture of myself, wearing the swimsuit.
I didn't get to far on my to-do list this month but these are accomplishments (the doing and the writing) of which I am proud.
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.
No Blog ‘Till May ~6
Gone to Philadelphia to attend the metastatic breast cancer conference ... so no new blogs here until I get back.
Thursday, April 29, 2010
Perfection
One of WCK's favorite TV shows is called Busytown Mysteries, a cartoon featuring the cute animal characters from the Richard Scarry books. The show is on CBS on Saturday mornings, and all of the commercials are infomercial-type commercials. I didn't think WCK paid much attention to the commercials (because I am stupid), until the day she asked me, "Mama, do you ever start out taking a shower (dramatic pause) and wind up taking a bath?"
She was, of course, directly quoting the infomercial for the "Turbo Snake", a commercial that demonstrates in very vivid, graphic detail how the product will clean giant, hairy clogs out of all of your drains. I discovered that WCK is also an expert on "Shoes Under", a shoe-organizing system that slides under your bed. One day when I was having trouble finding a matching pair of socks, WCK informed me that I needed to buy "Shoes Under" so I could organize my socks. "You can also use Shoes Under to organize belts and accessories," she told me soberly.
Don't think that she is easily persuaded to think every single product is great, though. WCK never hesitates to voice her disdain for the "Your Baby Can Read" system. The "Your Baby Can Read" infomercial drives WCK absolutely insane. "THOSE BABIES CAN'T REALLY READ!!!" she'll tell the screen. Most of the time, I have to fast-forward the TiVo through "Your Baby Can Read", because WCK just can't take it.
The one product that interested both of us, however, was The Perfect Brownie Pan. This is a baking pan that has a metal divider in it, so you get 18 thick, perfectly shaped brownies every time. You set the pan on a little metal stand, and the brownies pop right off. WCK and I knew we had to have The Perfect Brownie Pan. Every time the commercial came on, we'd talk about it. Finally, Jay and WCK bought me The Perfect Brownie Pan for my birthday.
I have to tell you: This is the greatest invention in the history of humankind. Sure, indoor plumbing was nice, but it can't beat 18 thick, perfectly shaped brownies. I finally tried out the pan last week, and now I am addicted to it. In the past week, I've made perfect brownies, perfect cornbread, and perfect Rice Krispie treats. I probably don't need all of these baked goods in my life .... or do I? Chocolate has antioxidants, corn is a vegetable, and I found out that a serving of Rice Krispies provides 50 percent of your iron needs for one day. I have to think about my health.
She was, of course, directly quoting the infomercial for the "Turbo Snake", a commercial that demonstrates in very vivid, graphic detail how the product will clean giant, hairy clogs out of all of your drains. I discovered that WCK is also an expert on "Shoes Under", a shoe-organizing system that slides under your bed. One day when I was having trouble finding a matching pair of socks, WCK informed me that I needed to buy "Shoes Under" so I could organize my socks. "You can also use Shoes Under to organize belts and accessories," she told me soberly.
Don't think that she is easily persuaded to think every single product is great, though. WCK never hesitates to voice her disdain for the "Your Baby Can Read" system. The "Your Baby Can Read" infomercial drives WCK absolutely insane. "THOSE BABIES CAN'T REALLY READ!!!" she'll tell the screen. Most of the time, I have to fast-forward the TiVo through "Your Baby Can Read", because WCK just can't take it.
The one product that interested both of us, however, was The Perfect Brownie Pan. This is a baking pan that has a metal divider in it, so you get 18 thick, perfectly shaped brownies every time. You set the pan on a little metal stand, and the brownies pop right off. WCK and I knew we had to have The Perfect Brownie Pan. Every time the commercial came on, we'd talk about it. Finally, Jay and WCK bought me The Perfect Brownie Pan for my birthday.
I have to tell you: This is the greatest invention in the history of humankind. Sure, indoor plumbing was nice, but it can't beat 18 thick, perfectly shaped brownies. I finally tried out the pan last week, and now I am addicted to it. In the past week, I've made perfect brownies, perfect cornbread, and perfect Rice Krispie treats. I probably don't need all of these baked goods in my life .... or do I? Chocolate has antioxidants, corn is a vegetable, and I found out that a serving of Rice Krispies provides 50 percent of your iron needs for one day. I have to think about my health.
CT Scan and Bone Scan Results
It wasn’t long before the door knock came and in walked my Onc. He asked me how I was feeling … do I have pain of any kind, how is the Xeloda treating me? I’m thinking to myself … enough of the small talk, give me the news.
This is sort of how it went …
There are new growths on the liver …. blah blah blah … Xeloda no longer working …. blah blah blah … options are limited …. blah blah blah … chemo …. blah blah blah …. study drug …. blah blah blah.
I’m in shock as he left the room and in comes the research nurse. I ask her to repeat some of what the Onc said …. Seriously, I only heard a few words here and there.
So in short … my options are Vinorelbine by IV or a study drug TK1258 by pill. I’m hoping I qualify for the study drug because it’s a pill and will give me better quality of life.
Well … I’m going to Philadelphia and will deal with all this later.
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!
EVO BANKE CIGANE MOJ
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!
Kudos to the band: Marchette DuBois on accordion, Jane Hall on dumbek, and Dunava's own Dina Trageser on tambura!
EVO BANKE CIGANE MOJ
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!
Wednesday, April 28, 2010
On coming and going, and finally arriving:
Alicia Parlette- I had no idea she existed until I stumbled upon an announcement of her death recently. A writer living in SF who discovered she had sarcoma at 23, Alicia kept a blog about her cancer experience on the SF Chronicle web site.
Our stories are eerily similar. I wish I could have talked to her. The cancer struggle often goes on for years, on and off, and you've no choice but take it all in stride...
Here's her wiki:
en.wikipedia.org/wiki/Alicia_Parlette
Here's her blog:
http://www.sfgate.com/alicia/
On a lighter note, here are a few preliminary shots from my thesis collection:
It's a dress with a tumor; how cancer-centric can I get??
I've decided that if my yearly scan is clear, I'm going to retire this blog for the time being. It is what I wanted it to be- a candid documentation of cancer treatment. It's over now, and I doubt anyone wants to hear about my chronic pain every few weeks.
That said, I won't be a stranger ;)
.
.
.
and if it's back... well, I'll get to take you on a whole new adventure.
Our stories are eerily similar. I wish I could have talked to her. The cancer struggle often goes on for years, on and off, and you've no choice but take it all in stride...
Here's her wiki:
en.wikipedia.org/wiki/Alicia_Parlette
Here's her blog:
http://www.sfgate.com/alicia/
On a lighter note, here are a few preliminary shots from my thesis collection:
It's a dress with a tumor; how cancer-centric can I get??
I've decided that if my yearly scan is clear, I'm going to retire this blog for the time being. It is what I wanted it to be- a candid documentation of cancer treatment. It's over now, and I doubt anyone wants to hear about my chronic pain every few weeks.
That said, I won't be a stranger ;)
.
.
.
and if it's back... well, I'll get to take you on a whole new adventure.
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!
New Lymphedema Glove
Somewhere in March I ordered a custom lymphedema glove that came in and was ill fitting. It was too loose on the top … not enough compression.
Firstly, the reason I need a custom glove is that most gloves are tight at the wrist. I need a glove that flares out a bit at the wrist so that I don’t have the double compression from the overlap of the sleeve and the glove.
Secondly, my hand tends to retain a lot of fluid. Most gloves I’ve tried cause the fluid to pool on the top of my hand. I need a glove with extra compression on the top. Well as promised, the manufacturer sewed in a filler patch on the top of this new glove.
So far, I really like how it feels. I’ll let you know if it does the trick.
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
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!
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
read her article: 17 Years Later, Stage 4 Survivor Is Savoring a Life Well Lived
Tuesday, April 27, 2010
Healthy Spirits: New Arrivals
1. Deschutes JUBEL is back!
2. Alaskan Summer
3. Sierra Summerfest
4. Oskar Blues GUBNA 4 packs
5. We now have a 3 year vertical of Stone Russian Imperial Stout! (08,09,10) available for your drinking pleasure.
cheers,
dave hauslein
beer manager
415-255-0610
2. Alaskan Summer
3. Sierra Summerfest
4. Oskar Blues GUBNA 4 packs
5. We now have a 3 year vertical of Stone Russian Imperial Stout! (08,09,10) available for your drinking pleasure.
cheers,
dave hauslein
beer manager
415-255-0610
Toronado 20th Anniversary Ale Raffle-Winner Announced
We are happy to announce that a winner has been chosen in the Beer of the Month Club Toronado 20th Anniversary Ale raffle!
FRANCISCO GRAJALES was selected from about 60 entries as the recipient of the bottle.
Thank you to all who participated.
cheers,
Healthy Spirits
FRANCISCO GRAJALES was selected from about 60 entries as the recipient of the bottle.
Thank you to all who participated.
cheers,
Healthy Spirits
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?
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?
Now Here’s a Switch
Last week D burnt the tops of two fingers and he goes for daily dressing changes at a local hospital. Guess what, I now drive him and he calls me to pick him up. Usually it’s me getting some work done and then having to call him on my cell to have him pick me up.
I don’t know … it’s just different. D says he feels the same way.
As for the dog… she is just happy to go for another car ride.
Monday, April 26, 2010
No more Coughing (ALMOST)
I almost made it through the day without coughing. I had only a few minor tickles in my throat but nothing to be alarmed about. The coughing today is mild compared to what I have been experiencing since the day after we took on Six Flags. I rode too many of the rides that respiratory patients shouldn't ride and just being in such a big crowd I probably picked up some kind of bug. I can't believe that it is almost summer time and my little honor roll student will soon matriculate into the second grade while the little one goes off to kindergarten (private because of her birthday).
Oh well it is good to get back to blogging' and helping' my cancer / transplant hommies. Blogging' affords me an opportunity to dump all these words in my head so I can continue on my thoughtless path in search of the grasshopper.
Oh well it is good to get back to blogging' and helping' my cancer / transplant hommies. Blogging' affords me an opportunity to dump all these words in my head so I can continue on my thoughtless path in search of the grasshopper.
Put Your Petro-Points Towards the Fight Against Cancer
As taken off their website ...
It's never been easier to join the fight against cancer. The Petro-Points™ Program and the Canadian Cancer Society have teamed up so you can donate your points.
How do your Petro-Points make a difference?
By donating your Petro-Points to the Canadian Cancer Society, you are helping the organization offer these information and support programs:
By donating your Petro-Points to the Canadian Cancer Society, you are helping the organization offer these information and support programs:
- Cancer Information Service - a national, bilingual, toll-free service that offers vital information about all aspects of cancer to patients, their families, health care professionals and to the general public.
- CancerConnection - a one-to-one, telephone-based peer support service that matches Canadians diagnosed with cancer, or their caregivers, with trained volunteers who have experienced cancer themselves, either as a patient or as a caregiver.
Sessions on CSC Therapeutics at AACR10
There were two poster sessions on Cancer Stem Cell Therapeutics at the 101st Annual Meeting of the American Association for Cancer Research (AACR). The sessions, Cancer Stem Cell Therapeutics 1 and Cancer Stem Cell Therapeutics 2, took place on the morning and afternoon of April 20, 2010 [FriendFeed entry].
Two posters presented in the 2nd session have been highlighted in a news release. See: Alchemia’s HyACT Technology Enhances the Killing of Cancer Stem Cell Populations in Breast and Colorectal Cancer, Business Wire, April 20, 2010 [FriendFeed entry]. One of these is Poster #4293: Evaluation of activated CD44 as a biological target in the eradication of breast cancer stem cells, by Vera J Evtimov and Tracey J Brown [Presentation Abstract]. The other is Poster #4278: HA-Irinotecan targeting of activated CD44 is an effective therapy for the eradication of putative colon cancer stem cells [Presentation Abstract].
Two posters presented in the 2nd session have been highlighted in a news release. See: Alchemia’s HyACT Technology Enhances the Killing of Cancer Stem Cell Populations in Breast and Colorectal Cancer, Business Wire, April 20, 2010 [FriendFeed entry]. One of these is Poster #4293: Evaluation of activated CD44 as a biological target in the eradication of breast cancer stem cells, by Vera J Evtimov and Tracey J Brown [Presentation Abstract]. The other is Poster #4278: HA-Irinotecan targeting of activated CD44 is an effective therapy for the eradication of putative colon cancer stem cells [Presentation Abstract].
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.
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.
The Memory Biz
Cancer Bitch is concerned with memory and its lack, and subscribes to Johns Hopkins' weekly health alerts about that and other subjects. Hopkins presented a Q and A (just one Q, one A) about memory workouts with Peter Rabins, M.D., M.P.H., Richman Family Professor for Alzheimer's and Related Disease'
Co-Director, Division of Geriatric Psychiatry and Neuropsychiatry at Johns Hopkins Hospital. He says, basically, we don't know for sure what will save your brain, but do what you like to stimulate your brain--after all, it couldn't hoit.
I just saw a TV special about a local "memory gym" where people go to work on improving their memories. Are these memory businesses just a fad or is there some real science behind them?
Dr. Rabins replies: Both. Emerging research suggests that remaining active -- cognitively, physically, and socially -- might lessen the risk of developing dementia or at least delay its onset. Doing the definitive scientific study would be very difficult and prohibitively expensive, though, so a clear-cut answer might never be available.
However, I believe the evidence is strong enough that people who want to do what they can to lower their risk of memory loss should consider some type of regular cognitive stimulation. Unfortunately, we have no real information and almost no scientific evidence to provide guidance on specific activities to improve memory. That is, we cannot say whether sudoku is better than group political discussions or trips to interesting and stimulating places such as museums, historical sights or the movies. And -- even more challenging -- we have no idea whether the activities that would benefit one person might not be helpful to another.
Given this lack of information, I recommend (with no scientific evidence!), that people who want to stave off memory loss use common sense. For example, the likelihood seems low that a person who never liked crossword puzzles will do them regularly and over time, so I recommend that people think about what they like doing and try to come up with activities that fit their interests and skills.
For some, the structure, peer interaction, and competition (with one's self or others) of a memory gym, computer program, or regular bridge game would increase the likelihood that they would continue with the activity. For others, the more solitary and less scheduled nature of the crossword or sudoku puzzle would work better. However, to insist that a person do any of these "for their own good" when they do not want to seems inappropriate to me.
Yes, we don't want people to feel guilty for not doing the day's crossword puzzle. It would be too ironic, anyway; there are people who do the crossword as a guilty pleasure.
Sunday, April 25, 2010
Head Brew Master Greg Hall of Goose Island visits Healthy Spirits
Touring the west coast for the recently available Goose Island beers, Head Brew Master Greg Hall was kind enough to pay us a visit. We salute you good sir, keep doing whacha doing!
Nate
Reporting injustice, one misplaced apostrophe at a time
This one comes to us from Kauffman Stadium, home of the Kansas City Royals.
Only one kid is allowed to shop here:
Only one kid is allowed to shop here:
Eazy Day
I have decided to release the blog post that I have kept private since the time of AM's lung transplant. I will be publishing them over the next week or so...if I am not in the SPA due to a really painful cough that has been bothering me most of April.
Philadelphia in Five Days
So this Friday I leave for Philadelphia for the 4th Annual Conference for Women Living with Advanced Breast Cancer. I’m especially excited because I’m stepping out of my comfort zone by taking this trip and travelling on my own. Cancer has stripped away some of my confidence and this trip is a bit about getting some of it back.
Also … I am so looking forward to meeting some fellow mets gals. I think just being in the same room with other ladies that are in similar situation as mine will be so amazing. I’m almost tearing up thinking about it.
As far as packing goes, I’m pretty well set. When I first registered for the conference, I was planning to bring my laptop and blog while I was there however; I’ve more recently decided to keep it simple and leave the computer at home. I really want to focus on making it as carefree a trip as possible. So no blogging while I’m away.
And … it looks like the weather in Philly should be pretty nice for the weekend. Fingers crossed ... I think I’m set.
Saturday, 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.
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.
Friday, April 23, 2010
The Three Cs: Cancer, Chemo and Colds
Which of these doesn't belong in the group?
After being diagnosed with an advanced stage of cancer and undergoing some of the harshest chemo known to man, I would think that I would now sneeze in the face of colds. Only wimps complain about colds, right?
Wrong. After catching yet another cold four weeks ago, I've been tired, sluggish and grumpy. An active day is followed by a day of recuperation. And it seems that I no sooner recover from a cold or flu that I've caught another bug.
During my visit at City of Hope yesterday, I told my doctor that I now catch colds and flus more easily (I've had two bouts of the flu and two colds since December, with sick days outnumbering well days 5 to 1), that I'm knocked down harder and that it takes me longer to get back up again. He believes that my immune system was battered by the post-stem-cell-transplant maintenance Rituxan that I took every quarter for nearly two years. We cut short the last infusion because he suspected that my immune system was taking a hit.
"It's one of the things that we doctors often debate," he said. The efficacy of Rituxan for keeping patients in remission is uncertain. But the pummelling of the immune system with some patients on Rituxan is certain.
If someone had come to me with these facts before the decision to go with the maintenance Rituxan, I doubt that my decision would be different. I figured only a fool would pass on a chance for a longer remission because of a fear of sniffles.
But as I reach for one more Kleenex and cover one more cough, I'm beginning to wonder.
After being diagnosed with an advanced stage of cancer and undergoing some of the harshest chemo known to man, I would think that I would now sneeze in the face of colds. Only wimps complain about colds, right?
Wrong. After catching yet another cold four weeks ago, I've been tired, sluggish and grumpy. An active day is followed by a day of recuperation. And it seems that I no sooner recover from a cold or flu that I've caught another bug.
During my visit at City of Hope yesterday, I told my doctor that I now catch colds and flus more easily (I've had two bouts of the flu and two colds since December, with sick days outnumbering well days 5 to 1), that I'm knocked down harder and that it takes me longer to get back up again. He believes that my immune system was battered by the post-stem-cell-transplant maintenance Rituxan that I took every quarter for nearly two years. We cut short the last infusion because he suspected that my immune system was taking a hit.
"It's one of the things that we doctors often debate," he said. The efficacy of Rituxan for keeping patients in remission is uncertain. But the pummelling of the immune system with some patients on Rituxan is certain.
If someone had come to me with these facts before the decision to go with the maintenance Rituxan, I doubt that my decision would be different. I figured only a fool would pass on a chance for a longer remission because of a fear of sniffles.
But as I reach for one more Kleenex and cover one more cough, I'm beginning to wonder.
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.
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!
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!
Shout Out to the Breast Friends Dragon Boat Racing Team
As taken off their website …
Breast Friends Society sponsors the Breast Friends Dragon Boat Racing Team of Edmonton. We are women from Edmonton and surrounding communities. We have all had a diagnosis of breast cancer and we train to race in dragon boat competitions.
Breast Friends are from every walk of life, and have varied fitness levels. Each member is a powerful example that women can lead full and vigorous lives after surgery and treatment for breast cancer.
Healthy Spirits: Your Source for Glassware
Our full list of glassware. All listed glasses are in the store now, and available for purchase.
1. Lindemans
2.Orval
3. Rochefort
4. Lost Abbey
5. Maredsous
6. Duvel
7. Chimay
8. Ayinger
9. Ayinger Celebrator
10. Westmalle
11. Affligem
12. Unibroue
13. Unibroue Maudite
14. Unibroue Trois Pistoles
15. Unibroue Blanche De Chambly
16. Widmer
17. St. Martin
18. Hopus
19. Weihenstephaner
20. Schneider Aventinus
21. Baltika
22. Belzebuth
23. Konig Pils
24. Duchesse De Bourgogne
25. Grimbergen
26. Green Flash
27. Tripel Karmeliet
28. Samuel Smith
If there are any other glasses you are looking for, just let us know!
Also, we are happy to announce that Russian River Consecration is now available for purchase in 12oz bottles.
cheers,
dave hauslein
beer manager
415-255-0610
1. Lindemans
2.Orval
3. Rochefort
4. Lost Abbey
5. Maredsous
6. Duvel
7. Chimay
8. Ayinger
9. Ayinger Celebrator
10. Westmalle
11. Affligem
12. Unibroue
13. Unibroue Maudite
14. Unibroue Trois Pistoles
15. Unibroue Blanche De Chambly
16. Widmer
17. St. Martin
18. Hopus
19. Weihenstephaner
20. Schneider Aventinus
21. Baltika
22. Belzebuth
23. Konig Pils
24. Duchesse De Bourgogne
25. Grimbergen
26. Green Flash
27. Tripel Karmeliet
28. Samuel Smith
If there are any other glasses you are looking for, just let us know!
Also, we are happy to announce that Russian River Consecration is now available for purchase in 12oz bottles.
cheers,
dave hauslein
beer manager
415-255-0610
Back Home!
I am just back from my trip to Washington DC. It was wonderful. I arrived on Friday night and walked several miles in DC on Saturday. I walked to the National Mall and to the Smithsonian Aerospace Museum, the most visited museum in the world. I took a tour highlighting the Apollo space missions and watched an IMAX presentation about the Hubble telescope...I love seeing pictures from the Hubble on-line. Saturday evening I went to meet the family of a patient with appendix cancer I helped four years ago, she is still cancer free and doing great, we talked until almost midnight, I think she will always be a friend!
On Sunday I attended a church service at the National Community Church, then had lunch with Dr. Esquivel at Union Station, it was a great lunch...I admired him before but do even more so now. I am on the board of his new organization, the American Society for Peritoneal Surface Malignancies, so it was a working lunch.
I spent Monday in the PEW headquarters and met so many great people: breast cancer and lymphoma survivors, a 16 year HIV survivor, and a terrific ER physician who is a heart transplant recipient. I also met an ethnobotanist ( Paul Alan Cox) I truly admired; I ordered his book Nafanua: Saving the Samoan Rain Forest. All were people, like myself, who had benefited from drugs derived from nature (except the ethnobotanist, who has helped develop drugs from natural sources). I had some time left over on Monday so did a bus tour of DC...mostly because I love hearing about DC trivia. For example, Washington has an exact replica of the Liberty Bell, but twice the size...in Washington it is called the Freedom Bell. So interesting, the original liberty bell is engraved with the word "Pennsylvania", but it is misspelled (one n and not two)...so to make it an exact replica, the word is also misspelled on the Freedom Bell. There's lots of fun DC trivia.
Tuesday and Wednesday I was on Capitol Hill to help promote the Global Conservation Act, which will help our nation coordinate efforts worldwide to preserve nature and nature's pharmacy. I met with a representative who worked as a police officer for 33 years before entering politics, and who wrote a book about his capture of a serial killer, Chasing the Devil. All of the proceeds from the book go to helping kids born to crack and heroin addicted mothers; I ordered the book the day I met him. I learned of politicians who are truly caring and who truly want to make a difference. Many support efforts to conserve nature. It changed my view of politics and politicians. There are many good people on Capitol Hill who serve us well.
Thursday I had a "free day", and after walking almost 10 miles to sight-see during the week, I decided to just curl up with a book in my hotel room, though I did visit Lafayette Park. Then I spent the rest of the day traveling...to Reagan airport, then to O’Hare, then the bus ride to Indiana, then the 45 minute drive home from the bus stop. Amazing that it's only a two hour flight to DC, but the travel in the end takes the better part of a day (plane was late, of course).
So though I love DC and loved my experience there, I'm glad to be home! But I have lots of good memories and learned so much...and met several people I hope to stay in touch with!
On Sunday I attended a church service at the National Community Church, then had lunch with Dr. Esquivel at Union Station, it was a great lunch...I admired him before but do even more so now. I am on the board of his new organization, the American Society for Peritoneal Surface Malignancies, so it was a working lunch.
I spent Monday in the PEW headquarters and met so many great people: breast cancer and lymphoma survivors, a 16 year HIV survivor, and a terrific ER physician who is a heart transplant recipient. I also met an ethnobotanist ( Paul Alan Cox) I truly admired; I ordered his book Nafanua: Saving the Samoan Rain Forest. All were people, like myself, who had benefited from drugs derived from nature (except the ethnobotanist, who has helped develop drugs from natural sources). I had some time left over on Monday so did a bus tour of DC...mostly because I love hearing about DC trivia. For example, Washington has an exact replica of the Liberty Bell, but twice the size...in Washington it is called the Freedom Bell. So interesting, the original liberty bell is engraved with the word "Pennsylvania", but it is misspelled (one n and not two)...so to make it an exact replica, the word is also misspelled on the Freedom Bell. There's lots of fun DC trivia.
Tuesday and Wednesday I was on Capitol Hill to help promote the Global Conservation Act, which will help our nation coordinate efforts worldwide to preserve nature and nature's pharmacy. I met with a representative who worked as a police officer for 33 years before entering politics, and who wrote a book about his capture of a serial killer, Chasing the Devil. All of the proceeds from the book go to helping kids born to crack and heroin addicted mothers; I ordered the book the day I met him. I learned of politicians who are truly caring and who truly want to make a difference. Many support efforts to conserve nature. It changed my view of politics and politicians. There are many good people on Capitol Hill who serve us well.
Thursday I had a "free day", and after walking almost 10 miles to sight-see during the week, I decided to just curl up with a book in my hotel room, though I did visit Lafayette Park. Then I spent the rest of the day traveling...to Reagan airport, then to O’Hare, then the bus ride to Indiana, then the 45 minute drive home from the bus stop. Amazing that it's only a two hour flight to DC, but the travel in the end takes the better part of a day (plane was late, of course).
So though I love DC and loved my experience there, I'm glad to be home! But I have lots of good memories and learned so much...and met several people I hope to stay in touch with!
Thursday, April 22, 2010
Senior Cat
My kitty, Garland, is 13 years old. I adopted her when she was just a tiny kitten and I was just 22 years old, one week after I graduated from college. Today was her yearly checkup at the vet. She's in excellent health, and the vet says she'd never guess that she's 13 years old. Still, the vet handed me a rather ominous-looking pamphlet called, "Friends for Life: Caring for your older cat."
According to the pamphlet, at age 13, Garland is a "senior" cat. This is older than a "mature" cat, but younger than a "geriatric" cat. To put this into human terms, she's about the same age as all of the people sitting around us at the Bon Jovi concert: Young enough to haul herself up all of the stairs at the Sprint Center; old enough to look really ridiculous doing it.
The pamphlet went on to describe all of the horrible illnesses that are about to befall my "senior" cat, and that I need to watch out for dozens and dozens of terrible symptoms, including "drooling", "less-elastic skin", and "forgetfulness". (Yes, the people at the Bon Jovi concert definitely had skin that was less-elastic.)
I'm wondering how you can tell when a cat is forgetful. If she doesn't send me a card on my birthday, is it time to put her down?
Anyway. I read the entire, horrifying pamphlet, right up to the last page: "End-of-Life Decisions." Huh. I can't believe they left out the section on "Miracle Cats Who Never Get Sick and Live Forever and Ever", because this is the category Garland will fall into. I'm just sure of it.
According to the pamphlet, at age 13, Garland is a "senior" cat. This is older than a "mature" cat, but younger than a "geriatric" cat. To put this into human terms, she's about the same age as all of the people sitting around us at the Bon Jovi concert: Young enough to haul herself up all of the stairs at the Sprint Center; old enough to look really ridiculous doing it.
The pamphlet went on to describe all of the horrible illnesses that are about to befall my "senior" cat, and that I need to watch out for dozens and dozens of terrible symptoms, including "drooling", "less-elastic skin", and "forgetfulness". (Yes, the people at the Bon Jovi concert definitely had skin that was less-elastic.)
I'm wondering how you can tell when a cat is forgetful. If she doesn't send me a card on my birthday, is it time to put her down?
Anyway. I read the entire, horrifying pamphlet, right up to the last page: "End-of-Life Decisions." Huh. I can't believe they left out the section on "Miracle Cats Who Never Get Sick and Live Forever and Ever", because this is the category Garland will fall into. I'm just sure of it.
Building My Stamina Up
Next week I’m off to a metastatic breast cancer conference ... so I thought I’d try and build up some stamina by walking a bit more and/or just being on my feet a bit more. So the last couple of days I’ve been quite active … spending time at the mall and such.
What I found is that my stamina is pretty good but the bottoms of my feet are sensitive. It doesn’t take long for them to feel like they are burning up. I had thoughts of sticking them into a bucket of ice water to get some relief.
Way back when, my Onc suggested I get some gel insoles for my shoes, so today I picked some up. I’ll let you know how they work out.
I should mention, today is the last day of my Xeloda pills so I’m thinking the side effects should start tapering off. In the mean time, I’m going to give my feet a bit of a break.
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.
dentist
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.
haircut
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).
wig
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.
naturopath
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 --
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.
dentist
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.
haircut
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).
wig
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.
naturopath
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 foodi 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.
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
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.
all clear
I got my CT results yesterday - via a very casual voice mail message:
"This is A. calling from the Cancer Centre. Your scans were normal. Thank you."
So there you have it. That's almost three years clean now.
And now on to making two birthday cakes (D. is 7 today), cleaning the house and doing the myriad things one needs to do before going away for a few days.
I'm not living the life I imagined for myself, but I'll take it.
Wednesday, April 21, 2010
Chiropractor Appointment
This morning I saw my chiropractor. I had previously decided this would be the last appointment for my lymphedema arm for now. Between his deep massage therapy and my daily exercise and stretches, the swelling had gone down quite a bit. Not only has my mobility improved but the sore ach has pretty well disappeared.
Knowing this would be the last time I’d see him for a while, I had a couple questions to ask him. Firstly, I wanted to ask him about what stretches or exercises I could do as I was still having some difficulty putting on jackets. My arm just didn’t want to bend that far back. He said no problem, he pointed out which muscles were weak and showed me the stretches and exercise I needed to be doing to strengthen those muscles. Excellent, I said! Secondly, I asked him if he had any advice for me as I was going on a flight next week. He said, for the flight … make sure to wear my sleeve and glove and wear support socks for my feet.
He did some deep massaging and stretches on my arm … and away I went.
really random news
1. According to an article in the Globe andMail, women and men respond very differently when they are on the recieving end of an apology:
“Women who are starved of an apology for rude or hurtful behaviour suffer an increase in blood pressure which can raise the risk of a heart attack or stroke, a study found,” The Daily Telegraph reports. “But those who hear a well-timed ‘sorry’ calm down more quickly, with their blood pressure returning to normal 20 per cent faster, the research showed. Conversely, a man’s blood pressure takes 20 per cent longer to recover after an apology – suggesting men become more worked up after hearing an admission of guilt.”
2. My sister sent me an article from the CBC web site this morning, about a colossal cookbook typo with the subject line "Oops." I've made some pretty big errors by not proofreading properly but this tops it all.
3. My friend, O. posted a story to Facebook today, with the headline "Woman with parrot perched on face arrested after throwing inhaler." Note to self: Don't throw an inhaler while a parrot is standing on your face. You will be arrested.
4. I'm still waiting for my CT scan results, which could be why I'm letting myself be distracted by all this silliness.
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:
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.
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.
My buddy, my buddy
I've said it before: Only super cool people get myeloma. I really think doctors/scientists should look into this theory. Something in the Super-Cool Gene just riles up those myeloma cells. Just check out these little guys, created by fellow myeloma blogger Feresaknit:
Aren't these the cutest things EVER? They're called "Myeloma Buddies". She's selling them at her Etsy shop, and all of the profits go toward myeloma research. You can get them in whatever color you want. I placed my order last night; I had to get one for WCK as well as my two nieces and nephew. Technically, my nephew isn't quite born yet, but he'll have a Buddy waiting for him when he arrives.
Now I'm wondering if I should have ordered my own buddy just for myself. I could always use a buddy at doctor's appointments and things. Maybe I'll have to steal WCK's. I can't wait for them to arrive.
Aren't these the cutest things EVER? They're called "Myeloma Buddies". She's selling them at her Etsy shop, and all of the profits go toward myeloma research. You can get them in whatever color you want. I placed my order last night; I had to get one for WCK as well as my two nieces and nephew. Technically, my nephew isn't quite born yet, but he'll have a Buddy waiting for him when he arrives.
Now I'm wondering if I should have ordered my own buddy just for myself. I could always use a buddy at doctor's appointments and things. Maybe I'll have to steal WCK's. I can't wait for them to arrive.
Tuesday, April 20, 2010
Are you positive it's negative?
I've always thought that the challenge of the pathology report was understanding it. I'm talking about my challenge as a patient. Now the front page of the New York Times tells us that the tests are shaky that determine whether a tumor is HER2 negative or positive, meaning whether it has extra copies of a protein called HER2. If it's positive, the tumor should respond to Herceptin. The problem is that tests are not uniform. The patient profiled in the times is a doctor, and her tumor was tested four different times with four different HER2 tests. The first test was positive, the second negative, the third positive, the fourth negative.
My tumor was fed by estrogen--or was it? Tests for estrogen sensitivity are wrong 10 percent of the time. I will have to think about this and figure out if there's anything I can or should do about this. Get the tumor tested again? I did send it to a pathologist at Vanderbilt who came to the same conclusions that the doctor at Fancy Hospital did: that the whole breast needed to be removed. But I don't think he re-tested the tumor.
Just because a tumor hasn't been inside you for three years doesn't mean it can't still cause trouble.
[The photo above is of a low grade fibromatosis-like metaplastic breast carcinoma chosen only for the color of the dye.]
Healthy Spirits: Whoa!
What a great day for beer. First we get an extra few cases of Two Turtle Doves a few months after I was told it was totally gone, then we get a nice big delivery of lambics and gueuzes. Here's the list.
1. Bruery Two Turtle Doves.
2. Anderson Valley Boont Amber Ale (in cans!)
3. North Coast Old Stock 2010
4. Cantillon Rose De Gambrinus 11.2oz
5. Cantillon Kriek 11.2oz
6. De Struise Black Albert
7. St. Louis Peche
8. St. Louis Kriek
9. St. Louis Framboise
10. Pripp's Carnegie Porter
11.Lost Abbey Angel's Share (Bourbon Barrel Version) 11.2oz (special carbonated edition)
12.Oud Beersel Framboise
13. Oud Beersel Gueuze
14. Lost Abbey Glassware!!!
And...Boom Goes the Dynamite.
cheers,
dave hauslein
beer manager
415-255-0610
Too thin for a DIEP flap?
I've spoken to several ladies recently who have had the same misconception about DIEP flap surgery. They were scared they were "too skinny". The truth of the matter is that you don't need to be overweight to be a candidate for DIEP flap surgery. What matters is the distribution of the fat that you do have. Unfortunately that can't be determined over the phone. Sometimes it can't even be determined by emailing pictures.
I can say that we have successfully performed DIEP flap reconstructions on women with BMI's of 20 and even less. In instances where the reconstruction ends up too small, many women are candidates for autologous fat grafting. This involves liposuction of fat from another part of the body, purifying this fat, and then re-injecting it into the reconstructed breast for additional volume.
We used to occasionally place a breast implant under the DIEP flap in women who needed more volume. Unfortunately the patient is then exposed to the risks of breast implants like capsular contracture (hardening of the implant and breast) and even deformity.
Fat is not free of issues either though - some of it can become reabsorbed or form little pea-sized areas of hardening (fat necrosis), especially if the fat grafting is not performed in a meticulous way. There were fears for a while that the injected fat could cause calcifications on a mammogram that could look like or even mask a new breast cancer. Several studies have since proven that fat grafting is safe though some plastic surgeons are still reluctant to perform the procedure because of these previous fears. Even though fat grafting may not be 100% predictable, it has served our patients very well and we now prefer it to implants in these situations.
If you'd like to know for sure whether you're a candidate for a DIEP flap please visit with an experienced DIEP surgeon. It's the only way to really be sure.
*****
Dr Chrysopoulo is a board certified plastic surgeon specializing in advanced breast reconstruction. Learn more about your breast reconstruction options and connect with other breast reconstruction patients here. You can also follow Dr C on Twitter!
*****
I can say that we have successfully performed DIEP flap reconstructions on women with BMI's of 20 and even less. In instances where the reconstruction ends up too small, many women are candidates for autologous fat grafting. This involves liposuction of fat from another part of the body, purifying this fat, and then re-injecting it into the reconstructed breast for additional volume.
We used to occasionally place a breast implant under the DIEP flap in women who needed more volume. Unfortunately the patient is then exposed to the risks of breast implants like capsular contracture (hardening of the implant and breast) and even deformity.
Fat is not free of issues either though - some of it can become reabsorbed or form little pea-sized areas of hardening (fat necrosis), especially if the fat grafting is not performed in a meticulous way. There were fears for a while that the injected fat could cause calcifications on a mammogram that could look like or even mask a new breast cancer. Several studies have since proven that fat grafting is safe though some plastic surgeons are still reluctant to perform the procedure because of these previous fears. Even though fat grafting may not be 100% predictable, it has served our patients very well and we now prefer it to implants in these situations.
If you'd like to know for sure whether you're a candidate for a DIEP flap please visit with an experienced DIEP surgeon. It's the only way to really be sure.
*****
Dr Chrysopoulo is a board certified plastic surgeon specializing in advanced breast reconstruction. Learn more about your breast reconstruction options and connect with other breast reconstruction patients here. You can also follow Dr C on Twitter!
*****
new 'do
this is me with my brand new, ultra short, pre-chemo haircut.
i think i look like jamie lee curtis.
My birthday is in a few weeks... no, not my legal birthday, but the day I went from living dead to just plain living again. May 1st was my last day of chemo. It's the day I got out of prison... I can't believe it's been a whole year. It feels like just a few months have passed.
Yearly scans May 10th
Graduation show May 7th
Deadline for my senior collection garments: this Friday.
I have been working SO HARD. A whirlwind of work. Stitching still my eyes burn and my fingers bleed (literally!). I pulled an all-nighter, which is requisite college behavior, no? I was able to work through the night but my body retaliated soon after: fever and sweats, a debilitating migraine, and vomiting/heaving for the subsequent weekend. I'm still learning my body's limits, even a year after the fact.
Remember when I was bald? I don't. I can't even recognize myself, it's like I was in utero...
Yearly scans May 10th
Graduation show May 7th
Deadline for my senior collection garments: this Friday.
I have been working SO HARD. A whirlwind of work. Stitching still my eyes burn and my fingers bleed (literally!). I pulled an all-nighter, which is requisite college behavior, no? I was able to work through the night but my body retaliated soon after: fever and sweats, a debilitating migraine, and vomiting/heaving for the subsequent weekend. I'm still learning my body's limits, even a year after the fact.
Remember when I was bald? I don't. I can't even recognize myself, it's like I was in utero...
CT Scan and Bone Scan
Yesterday I went in for my CT scan and bone scan. First the CT scan and getting an IV. Finding a good vein in my left arm is getting to be a bit tricky so the nurse wrapped it with a hot towel, a hot pack and then some fabric to keep all that heat in. A few minutes later she took off the entire wrap. She got a vein first try … good job! She then poured me my one liter ‘contrast’ drink and sent me to the waiting room so I could slurp it up. A short time later I had my CT scan.
After my CT scan, I went to nuclear medicine for my bone scan. When I got there I was asked if I’d like to take part in a study where the hospital would inject Na18F as a tracer instead of 99mTc-MDP. I was not great at chemistry in high school so I’ll just give you the long and short of it … there is a global shortage of the one contrast agent and they are testing this other one in its place. I agreed to the study and filled out the consent form.
When the nurse came by with the injection needle, he walked in caring a small metal box. When he opened the box there was a syringe enclosed in a metal cylinder one inch in diameter. I asked … what’s with the fancy syringe. He said, “Oh that is tungsten metal and is used to shield the staff from the radiation within the syringe. Ugg … I just then felt like a lab rat.
On a side note, Na18F which is the new study tracer is actually made at the Cross Cancer Institute here in Edmonton.
buckets of pink sh*t
If you've been reading this blog for a while, then you know how I feel about corporations selling pink crap in the name of "breast cancer." I even have a "don't buy pink crap" tag that use pretty regularly, especially in October.
There have been some pretty awful pink products sold over the years but in launching "Buckets for the Cure," KFC and Susan G. Komen for the Cure have sunk to what may be a new kind of low.
This stupefyingly bad idea was brought to my attention by Clergy Girl, in a post called "Buckets Of Saturated Fat For The Cure" over at Mothers With Cancer. She writes:
This was a sell-out Komen. Did you ask anyone with breast cancer how they would feel seeing that big pink greasy bucket of chicken? Was someone going to lose their job if you didn’t raise cash quick? I really don’t get it? Research also shows smoking and alcohol consumption are clear links to cancer, so why not team up with Marlboro or Bud Beer? It’s not just about money, and quite frankly, don’t raise money on the backs of research that is clearly linking to cancer promotion. Please!Shame on Komen for lending it's name to this outrage.
Monday, 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.
let's hope for a rapid and effective response with limited side effects.
Scanxiety
I’ve been feeling quite anxious lately. It’s in anticipation of my CT scan and my bone scan which is this afternoon. I’ll get the results back in about 10 days when I see my Onc.
Sometimes I wish I lived in lala land and didn't have to do them.
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.
Sunday, 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.
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!
CSC news links 2010-04-18
For links to recent news items, visit these [Twitter] or [FriendFeed] pages. Examples of a few news items that have received attention:
- Split ends in CML: divergent roles of Hes1 by Catriona Jamieson, Blood 2010(Apr 8); 115(14): 2726-7 [FriendFeed entry][Connotea bookmark][PubMed citation][Full text PDF]. A comment on: Hes1 immortalizes committed progenitors and plays a role in blast crisis transition in chronic myelogenous leukemia by Fumio Nakahara and 13 co-authors, Blood 2010(Apr 8); 115(14): 2872-81. [Epub 2009(Oct 27)][PubMed citation].
- Metabolism and the leukemic stem cell by Omar Abdel-Wahab and Ross L Levine, J Exp Med 2010(Apr 12); 207(4): 677-80 [Epub 2010(Apr 5)][FriendFeed entry][ResearchGATE entry][CiteULike entry][Connotea bookmark][PubMed citation][Full text].
- A hypoxic niche regulates glioblastoma stem cells through hypoxia inducible factor 2alpha by Sascha Seidel and 13 co-authors, including Till Acker, Brain 2010(Apr); 133(Pt 4): 983-95 [FriendFeed entry][ResearchGATE entry][Connotea bookmark][PubMed citation].
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