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.
Subscribe to:
Posts (Atom)
Posts
