Here is Rik as he votes in his first presidential election:
(In Washington state, we now vote exclusively by mail.)
October 29, 2012
Rik votes
My Canadian-born husband decided to become a US citizen on the evening of the last presidential election. As soon as the California returns had come in, and we knew that Barack Obama would be the next President of the United States, Rik downloaded the citizenship application, completed it and mailed it the next day.
Here is Rik as he votes in his first presidential election:
(In Washington state, we now vote exclusively by mail.)
Here is Rik as he votes in his first presidential election:
(In Washington state, we now vote exclusively by mail.)
Dr G says:
Today I received Avastin and had a lovely visit with my friend R. Afrerwards I saw Dr G in an actual office visit, when he told me the following:
My kidney function is normal. Yay! I'll just finish that dose of antibiotic he prescribed.
He will reduce the eribulin dose and we hope I will tolerate it better. My next dose is Wednesday.
Although my blood pressure is going down nicely, I should stay on the diuretic and potassium supplements for as long as I receive Avastin, if not longer.
He agreed to look over a number of clinical trials I found (while surfing the web one night when I had serious insomnia).
When I need to move to another treatment, Dr G will consider prescribing Xeloda. Xeloda is an oral form of 5FU, which was so hard on me a few years ago. However, Xeloda is supposed to be more easily tolerated than 5FU and have fewer side effects. It's a mainstay of metastatic breast cancer care and I've never been on it.
All in all, it was a most satisfactory visit. Tomorrow, the eyebrow tattoos!
My kidney function is normal. Yay! I'll just finish that dose of antibiotic he prescribed.
He will reduce the eribulin dose and we hope I will tolerate it better. My next dose is Wednesday.
Although my blood pressure is going down nicely, I should stay on the diuretic and potassium supplements for as long as I receive Avastin, if not longer.
He agreed to look over a number of clinical trials I found (while surfing the web one night when I had serious insomnia).
When I need to move to another treatment, Dr G will consider prescribing Xeloda. Xeloda is an oral form of 5FU, which was so hard on me a few years ago. However, Xeloda is supposed to be more easily tolerated than 5FU and have fewer side effects. It's a mainstay of metastatic breast cancer care and I've never been on it.
All in all, it was a most satisfactory visit. Tomorrow, the eyebrow tattoos!
October 28, 2012
Better, better, better, better ....!
I have been feeling much better these past few days. I have plenty of energy and my feet hurt less from the neuropathy. My back still occasionally gives me a twinge. The jury is still out on how well the kidney infection is healing.
I still, however, have terrible insomnia. I get into bed and I simply cannot fall asleep. Last night I decided that I couldn't afford another restless night, when I had to get out of bed to rest on the sofa after tossing and turning for hours. So I took some Ativan and it did eventually relax me enough to fall asleep. Otherwise, after trying to sleep on the sofa, I would desperately need a nap in the middle of the day, and the whole pattern would repeat again. So I will stick with the sleeping pills again tonight and ask Dr G about it tomorrow.
I still, however, have terrible insomnia. I get into bed and I simply cannot fall asleep. Last night I decided that I couldn't afford another restless night, when I had to get out of bed to rest on the sofa after tossing and turning for hours. So I took some Ativan and it did eventually relax me enough to fall asleep. Otherwise, after trying to sleep on the sofa, I would desperately need a nap in the middle of the day, and the whole pattern would repeat again. So I will stick with the sleeping pills again tonight and ask Dr G about it tomorrow.
October 24, 2012
No chemo again
I went for chemo today as planned. My friend T joined me for a visit and we talked about our mutual but differing chemo experiences. I think T found it very interesting to be in another facility.
I reported to nurse Sam that for a few days I'd had pain in my flank (the area between your shoulder blades and waist, where the kidneys are located). So I peed in a cup and the sample showed that I have a urinary tract infection. Since I started on diuretics a week or so ago, I have not experienced any of the symptoms usually seen in a UTI: pain when urinating, urge to go but no urine, etc.
Dr G came in and within five minutes he'd written a scrip for an antibiotic to treat the UTI (no chemo until that's been taken care of!), said that he would consider reducing the dose on the eribulin, and agreed to write a note approving my request for a cosmetic eyebrow tattoo. (Mor eon that later.) I am to go back next week so we can try chemo again.
My counts have rebounded and I am no longer restricted from being in crowds. So after touring T's office, I took myself out to lunch and for a shopping spree at Nordstrom Rack. I found Rik the perfect blue cords he's wanted, a new jacket for me (which I need to cold weather test tonight), and tried on a fabulous pair of boots. I couldn't bring myself to buy it all, so I am still thinking about the boots. I have to act fast -- things don't stay around long at the Rack!
On the way home I stopped at the grocery store, the drug store, and then crashed for a short nap. I couldn't sleep, but putting my feet up and snuggling with Bob the dog was restorative.
Now it's off to rehearsal. If I don't have chemo, I want to keep up with my commitments.
I reported to nurse Sam that for a few days I'd had pain in my flank (the area between your shoulder blades and waist, where the kidneys are located). So I peed in a cup and the sample showed that I have a urinary tract infection. Since I started on diuretics a week or so ago, I have not experienced any of the symptoms usually seen in a UTI: pain when urinating, urge to go but no urine, etc.
Dr G came in and within five minutes he'd written a scrip for an antibiotic to treat the UTI (no chemo until that's been taken care of!), said that he would consider reducing the dose on the eribulin, and agreed to write a note approving my request for a cosmetic eyebrow tattoo. (Mor eon that later.) I am to go back next week so we can try chemo again.
My counts have rebounded and I am no longer restricted from being in crowds. So after touring T's office, I took myself out to lunch and for a shopping spree at Nordstrom Rack. I found Rik the perfect blue cords he's wanted, a new jacket for me (which I need to cold weather test tonight), and tried on a fabulous pair of boots. I couldn't bring myself to buy it all, so I am still thinking about the boots. I have to act fast -- things don't stay around long at the Rack!
On the way home I stopped at the grocery store, the drug store, and then crashed for a short nap. I couldn't sleep, but putting my feet up and snuggling with Bob the dog was restorative.
Now it's off to rehearsal. If I don't have chemo, I want to keep up with my commitments.
October 21, 2012
Pink accessories divert funding
My cousin sent me this letter to the editor of the Cincinnati Enquirer.
Pink accessories divert funding10/17/12 at 7:27am by Letters Editor
A sea of pink! Baseball players, football players, NASCAR drivers, all wearing pink for Breast Cancer Awareness Month. All well and good. But think of the money spent on pink caps, gloves, shoes, socks, wristbands and headbands - even the lanyards holding the officials’ whistles - for hundreds of players, coaches, managers, drivers and officials for even one weekend. This same money could have done some good had it been donated directly to breast cancer research.
Judith Enneking
Green Township
Naturally I loved that my cousin thought of me and that she gets my frustration with pink ribbon stuff. The comments posted after this letter were not thoughtful responses, so I won't share them here. But there was another letter to the editor that caught my attention on this topic. After reading both letters, I decided to write my own letter to the Enquirer.
I am a 14 year breast cancer survivor (10 years stage IV metastatic disease). My cousin sent me “Pink accessories divert funding” because:
1) Could there really be anyone in the USA who’s not already aware of breast cancer?
2) Buying pink ribbon stuff doesn't contribute a lot to finding a cure.
3) Shoppers could Think Before You Pink.
How did the (mostly?) male viewers of these sports events react when they saw men wearing pink? Toast a glass? Give a dollar? Or talk about the scores?
I’d be satisfied with one more dollar towards research. Only a tiny portion of all USA research dollars funds every kind of metastatic cancer.
The ‘sea of pink’ rarely talks about women living with stage IV disease. It's as if we don't exist in the pink ribbon world. But we're the ones who breast cancer kills.
October 18, 2012
No chemo today
My white cell counts were too low today for me to receive treatment with eribulin. I did get a shot of Neulasta, which should bring the counts up, and was told to reschedule for next week to try again.
Because my white cell counts are so low, I am instructed to stay out of crowds. Even a passing stranger with a sniffle could set off a major infection for me. However, I do get to go to Shabbat dinner Friday night at the home of friends.
Because my white cell counts are so low, I am instructed to stay out of crowds. Even a passing stranger with a sniffle could set off a major infection for me. However, I do get to go to Shabbat dinner Friday night at the home of friends.
Funny (peculiar)
Now I know why they give this chemo once a week for two weeks. I feel just enough better this morning that I can handle another dose later today. However, I predict that the queasiness, fatigue and perhaps even a slight increase in neuropathy will continue. I imagine that I will be on the sofa a fair amount of time next week.
I'll be sure to have the staff check my blood pressure both before and after I get the eribulin. More news later....
I'll be sure to have the staff check my blood pressure both before and after I get the eribulin. More news later....
October 15, 2012
Eribulin dose one follow up
Friday was fine. Although I took a nap, we went to dinner at a friend's home.
On Saturday I went to synagogue but really crashed in the afternoon. My nap was followed by some nausea that the Aloxi didn't relieve. Turns out my old prescription of ondonsetran (Zofran) was 18 months out of date, so it didn't provide much relief either. I've since had that scrip refilled. Ginger ale did the trick.
Dunava had an all-day retreat/workshop on Sunday which I very badly wanted to attend. I dragged myself out the door early and managed to sing with everyone for about six hours. We started at 10:30 AM, took a break for lunch and another short break for dessert, and I finally turned to toast at 5 PM. The rest of them continued on for maybe another hour. It amazes me that even on chemo, I am keeping up with these women, a couple of whom are 20 years younger than I am!
Dunava is preparing to record a second CD of all Bulgarian music and this was a chance to start on a monster huge piece. We got almost all the way through it in the one day, leaving one short section and the coda still to learn.
Today was filled with doctors. Because the health insurance company only pays for the eribulin as a monotherapy, meaning it can't be given with another drug, I had to schedule the Avastin for another day. Plus Avastin is given every other week. Eribulin is given once a week for two weeks in a row and then the third week is off. On the day after the second eribulin dose I also go in for a shot of Neulasta, a white cell builder. You can see this leaves me tethered to a chemo chair just about every week.
For instance, this first cycle is:
I also met my new specialty dentist today who I like very much. I spent 90 minutes with her and I think she'll be a keeper health provider.
I came home, started a pot roast, and took a major nap. The nap was restorative, the pot roast was delicious, and I'm looking forward to a good night's sleep.
On Saturday I went to synagogue but really crashed in the afternoon. My nap was followed by some nausea that the Aloxi didn't relieve. Turns out my old prescription of ondonsetran (Zofran) was 18 months out of date, so it didn't provide much relief either. I've since had that scrip refilled. Ginger ale did the trick.
Dunava had an all-day retreat/workshop on Sunday which I very badly wanted to attend. I dragged myself out the door early and managed to sing with everyone for about six hours. We started at 10:30 AM, took a break for lunch and another short break for dessert, and I finally turned to toast at 5 PM. The rest of them continued on for maybe another hour. It amazes me that even on chemo, I am keeping up with these women, a couple of whom are 20 years younger than I am!
Dunava is preparing to record a second CD of all Bulgarian music and this was a chance to start on a monster huge piece. We got almost all the way through it in the one day, leaving one short section and the coda still to learn.
Today was filled with doctors. Because the health insurance company only pays for the eribulin as a monotherapy, meaning it can't be given with another drug, I had to schedule the Avastin for another day. Plus Avastin is given every other week. Eribulin is given once a week for two weeks in a row and then the third week is off. On the day after the second eribulin dose I also go in for a shot of Neulasta, a white cell builder. You can see this leaves me tethered to a chemo chair just about every week.
For instance, this first cycle is:
Thursday, Oct 11 Eribulin 1The Avastin may also be giving me high blood pressure. Dr G and his staff monitored me for a bit and he decided to add a diuretic to my meds for the next month. The diuretic will relieve pressure on shortness of breath (which I don't have) and edema (swelling in hands and feet).
Monday, Oct 15 Avastin 1
Thursday, Oct 18 Eribulin 2
Friday, Oct 19 Neulasta
Monday, Oct 29 Avastin 2
I also met my new specialty dentist today who I like very much. I spent 90 minutes with her and I think she'll be a keeper health provider.
I came home, started a pot roast, and took a major nap. The nap was restorative, the pot roast was delicious, and I'm looking forward to a good night's sleep.
October 13, 2012
Metastatic Breast Cancer Awareness Day.
I found this on Facebook today from METAvivor Research and Support Inc.
Today, Oct 13, is Metastatic Breast Cancer Awareness Day. Here are a few facts to share when you are soliciting support for the MBC cause.
1) 30% of all breast cancer patients metastasize -- even stage 0 patients can and do metastasize.
2) Breast cancer patients can metastasize 20 and more years after their original breast cancer.
3) Metastatic breast cancer is the only breast cancer that is fatal -- 97-99% of all metastatic breast cancer patients succumb to the disease.
4) Average survival after metastasis is roughly 2 years.
5) According to the American Cancer Society website, only 15% of these patients are alive 5 years after diagnosis.
6) Only 2-5% of research funds in the western world go toward research for ANY stage IV cancer.
6) Roughly 40,000 Americans die annually of the disease ... that is 110 every day.
7) Why do some people metastasize while other do not? Forget all the "feel good" myths you have been told. The truth is this: It is sheer luck ... either good luck or bad luck ... and that's the plain, honest truth of the matter.
So, when are we getting a cure?
PS You can see a METAvivor video here.
October 12, 2012
First day after new chemotherapy
I'm feeling more than okay today. I slept well with the help of Ativan then walked the dog, trimmed some berry bushes, made dessert for Sunday's Dunava retreat, did a load of laundry and ran the dishwasher.
Right now I plan to take a nap and later go to Shabbat dinner at a friend's home. That seems pretty much like a normal day to me!
Maybe it's the Decadron.....
Right now I plan to take a nap and later go to Shabbat dinner at a friend's home. That seems pretty much like a normal day to me!
Maybe it's the Decadron.....
October 11, 2012
October 10, 2012
New chemo
Tomorrow I start my new treatment, Halaven (eribulin). I also found a good article on WebMD called Breast Cancer Drug Eribulin Extends Survival.
Halaven was very recently studied in metastatic breast cancer and approved by the FDA. I am most worried about the side effect of my peripheral neuropathy worsening, when it has improved so much over the past ten months but hasn't completely resolved. You can be sure I will keep Dr G posted if I develop more numbness in my feet!
Other side effects include the usual: low white (82%) and/or red cell counts (58%), fatigue (54%), nausea (35%) etc. 45% had hair loss, but this is the least of my concerns. I've been bald before...
Here's hoping for a highly effective and very tolerable treatment.
Halaven was very recently studied in metastatic breast cancer and approved by the FDA. I am most worried about the side effect of my peripheral neuropathy worsening, when it has improved so much over the past ten months but hasn't completely resolved. You can be sure I will keep Dr G posted if I develop more numbness in my feet!
Other side effects include the usual: low white (82%) and/or red cell counts (58%), fatigue (54%), nausea (35%) etc. 45% had hair loss, but this is the least of my concerns. I've been bald before...
Here's hoping for a highly effective and very tolerable treatment.
October 09, 2012
The end of the holidays
Today is the last day of the annual round of Jewish holidays. From Rosh Hashanah (two days) through Yom Kippur (one really long day) to Sukkot (two days at the beginning and two days at the end of the week), it's a lot of praying, singing, and eating.
I'm glad I've had the energy to cook, pray, eat and socialize for these few weeks. Our annual sukkah party was a lot of fun. More than 40 people showed up and we got a couple of photos with just about everyone. The Seattle weather has cooperated and it's been unfailingly sunny for weeks on end.
Now i'm ready to take down the sukkah, clean up the yard and start a cover crop in my raised garden beds. On to the rains!
I'm glad I've had the energy to cook, pray, eat and socialize for these few weeks. Our annual sukkah party was a lot of fun. More than 40 people showed up and we got a couple of photos with just about everyone. The Seattle weather has cooperated and it's been unfailingly sunny for weeks on end.
Now i'm ready to take down the sukkah, clean up the yard and start a cover crop in my raised garden beds. On to the rains!
October 04, 2012
Scan results and new plan
The results of yesterday's scans show I have one new tiny brain met (3mm), two slightly larger liver mets, and my tumor marker went up a few points. The Afinitor+Aromasin+Faslodex+Avastin combo appears to have stopped working.
Dr G wants to stop the Afinitor, start me on eribulin (Halaven) and continue the Aromasin, Faslodex and Avastin. His thinking is that my cancer responded well to taxanes, except for the eventual neuropathy. Eribulin works in the same way as taxanes, hopefully without that toxicity.
Eribulin is given via IV push or five minute infusion, two weeks on and one week off in a 21 day cycle with the usual chemo side effects. Avastin is given every other week. It appears I will be tethered to the chemo chair for a while. Hopefully I can try to coordinate the schedules. Eribulin is a newish drug, recently approved for metastatic breast cancer.
More later, as I process this latest bump in my personal cancer merry-go-round.
Just when I had gotten used to having hair again!
Eribulin is given via IV push or five minute infusion, two weeks on and one week off in a 21 day cycle with the usual chemo side effects. Avastin is given every other week. It appears I will be tethered to the chemo chair for a while. Hopefully I can try to coordinate the schedules. Eribulin is a newish drug, recently approved for metastatic breast cancer.
More later, as I process this latest bump in my personal cancer merry-go-round.
Just when I had gotten used to having hair again!
 |
| Bob was snuggling with me when I took this pic. |
October 02, 2012
Free haircuts for B Ca survivors
Okay, this is one "pink" thing I can get behind - a free haircut for breast cancer survivors at JC Penney. Thanks to the Cheap Bastard's Guide to Seattle for this tip. (I only hope they don't make you prove that you had breast cancer by asking to see your scars...)
JC Penney will also make a $1donation for the first 50,000 cuts to the Breast Cancer Research Foundation. Now that's the way to go -- support survivors, women currently in treatment, and give money to research.
JC Penney will also make a $1donation for the first 50,000 cuts to the Breast Cancer Research Foundation. Now that's the way to go -- support survivors, women currently in treatment, and give money to research.
October 01, 2012
October and pink
It's October 1st and the annual onslaught of "pink" cause-related marketing has begun.
There are too many ploys to get consumers to part with money in exchange for breast cancer pink-ribbon themed stuff. Sunday's newspaper was filled with pink-colored coupons advertising all kinds of products claiming to give a donation to a breast cancer organization in exchange for a purchase.
I HATE this time of year.
Buying pink-ribbon merchandise does very little to help find a cure for breast cancer. If you really want to help, consider making a donation straight to a cause you support.
If you must buy the pink ribbon stuff, please Think Before You Pink.
And don't buy me the pink socks, or the pink yogurt, or any other pink ribbon junk.
Just help the scientists find a real cure for breast cancer. Soon.
There are too many ploys to get consumers to part with money in exchange for breast cancer pink-ribbon themed stuff. Sunday's newspaper was filled with pink-colored coupons advertising all kinds of products claiming to give a donation to a breast cancer organization in exchange for a purchase.
I HATE this time of year.
Buying pink-ribbon merchandise does very little to help find a cure for breast cancer. If you really want to help, consider making a donation straight to a cause you support.
If you must buy the pink ribbon stuff, please Think Before You Pink.
And don't buy me the pink socks, or the pink yogurt, or any other pink ribbon junk.
Just help the scientists find a real cure for breast cancer. Soon.
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