Here's an original piece of art designed by my young friend A, created especially for my 10th metsiversary. According to him, I'm beating the odds!
August 30, 2012
August 29, 2012
Slow improvement
I feel more focused today but still lack energy. On the other hand, I ate three meals yesterday and today too. That's an improvement.
Dr G says to reduce the dose of Afinitor by cutting the tablet in half and stuffing a cut piece into a piece of cheese. This way the open end won't touch my mouth, and should prevent me from getting mouth sores.
I wondered with Nurse Jacque if the fact that I am slowly improving on my own might mean that this fatigue is due more to the Avastin than the Afinitor. She agreed this was a good point to bring up to Dr G, and will ask him to consider reducing the Avastin dose as well.
I again spent most of the day on the sofa but managed to stay awake reading much of the time. I think I will skip rehearsal tonight and hope for more energy tomorrow.
Dr G says to reduce the dose of Afinitor by cutting the tablet in half and stuffing a cut piece into a piece of cheese. This way the open end won't touch my mouth, and should prevent me from getting mouth sores.
I wondered with Nurse Jacque if the fact that I am slowly improving on my own might mean that this fatigue is due more to the Avastin than the Afinitor. She agreed this was a good point to bring up to Dr G, and will ask him to consider reducing the Avastin dose as well.
I again spent most of the day on the sofa but managed to stay awake reading much of the time. I think I will skip rehearsal tonight and hope for more energy tomorrow.
August 28, 2012
Afinitor not anemia
More on the crushing fatigue that's hit me for the past five days.
Today I went in for labs. It turns out the fatigue is likely an Aifinitor side effect, not anemia or low white blood cell count from the Avastin.
I'm waiting to hear if I can cut the remaining pills in half safely to reduce the Afinitor dose, or if I have to get new lower dose pills.
In the meantime I've been on the sofa again for a whole day, about to head back there.
Today I went in for labs. It turns out the fatigue is likely an Aifinitor side effect, not anemia or low white blood cell count from the Avastin.
I'm waiting to hear if I can cut the remaining pills in half safely to reduce the Afinitor dose, or if I have to get new lower dose pills.
In the meantime I've been on the sofa again for a whole day, about to head back there.
August 26, 2012
Mouth better, but energy?
It's taking me a long time to recover from my sister and brother-in-law's whirlwind three day visit. Some of that extra recovery time is certainly caused by the mouth infection (which seems to be healing). The Avastin may also be part of this long recovery. It can cause generalized weakness and low white cell counts, and I've had two doses so far.
I spent most of Friday, Saturday and Sunday so far taking naps. This is most unlike me now, but was indeed part of my most recent chemo experience. I haven't even had the energy to walk the dog! Thankfully Rik is here to make sure Bob gets his daily constitutional.
I tried to save up energy to attend a friend's wedding reception last night. It was lovely, and I felt fine for about four hours, then had to go home and crash.
All the napping does make it hard to get a good night's sleep at bedtime, and I've had some insomnia, night sweats, etc. that make natural sleep difficult. Although I am stubborn, I will be sure to take something tonight so that I can begin to get on a better rhythm for the next week.
I spent most of Friday, Saturday and Sunday so far taking naps. This is most unlike me now, but was indeed part of my most recent chemo experience. I haven't even had the energy to walk the dog! Thankfully Rik is here to make sure Bob gets his daily constitutional.
I tried to save up energy to attend a friend's wedding reception last night. It was lovely, and I felt fine for about four hours, then had to go home and crash.
All the napping does make it hard to get a good night's sleep at bedtime, and I've had some insomnia, night sweats, etc. that make natural sleep difficult. Although I am stubborn, I will be sure to take something tonight so that I can begin to get on a better rhythm for the next week.
August 24, 2012
Mouth infection
A few weeks ago I went to the dentist, complaining of pain in my mouth. It wasn't a mouth sore and nothing appeared on an x-ray. At the beginning of this week, the pain at the back of my mouth, near my last molar, increased so dramatically that even with Vicodin, I could hardly open my mouth wide enough to eat a fork or spoon's worth of food. I've lost three pounds this week.
On Wednesday I went to the oral surgeon who had originally diagnosed my ONJ (osteonecrosis of the jaw). She suspected that this area had become infected and that the infection had spread to the last molar. Dr Kelly sent me home with a prescription for an antibiotic, Augmentin, and instructions to use the PerioGard prescription mouth rinse instead of my salt and baking soda rinse.
Yesterday I went to Dr G's office for my monthly infection of Faslodex and took home a prescription for oxycodone. Evidently Vicodin (hydrocodone) and oxycodone work on different areas in the brain's pain center.
Even though Dr Kelly said I wouldn't get much relief from the antibiotic for a few days. I already feel better. The oxycodone has helped reduce the pain but because I'm not used to it, I get very sleepy for the first hour after I've taken it.
I exhausted myself by being too active during the first part of the week. On top of that, there's the oxycodone drowsiness. I took one nap yesterday afternoon and two today.
Right now I feel great and I expect that to continue as the antibiotic wipes out whatever infection was growing in my mouth.
On Wednesday I went to the oral surgeon who had originally diagnosed my ONJ (osteonecrosis of the jaw). She suspected that this area had become infected and that the infection had spread to the last molar. Dr Kelly sent me home with a prescription for an antibiotic, Augmentin, and instructions to use the PerioGard prescription mouth rinse instead of my salt and baking soda rinse.
Yesterday I went to Dr G's office for my monthly infection of Faslodex and took home a prescription for oxycodone. Evidently Vicodin (hydrocodone) and oxycodone work on different areas in the brain's pain center.
Even though Dr Kelly said I wouldn't get much relief from the antibiotic for a few days. I already feel better. The oxycodone has helped reduce the pain but because I'm not used to it, I get very sleepy for the first hour after I've taken it.
I exhausted myself by being too active during the first part of the week. On top of that, there's the oxycodone drowsiness. I took one nap yesterday afternoon and two today.
Right now I feel great and I expect that to continue as the antibiotic wipes out whatever infection was growing in my mouth.
August 19, 2012
Ten year "metsiversary"
I remember August 20, 2002 so clearly. It was the day I was
given the diagnosis of metastatic breast cancer and broke my leg.
After surgery to repair the broken femur, I was convinced I
was going to die. I asked my oncologist about the mortality statistics and he
was completely honest with me. One of every two women diagnosed with metastatic
breast cancer at that time died. The news was hard to hear, but my doctor already
had a treatment plan in mind.
Throughout all the ups and downs of the past ten years, my
medical team has been present for me. At each rough spot, their candor and
willingness to listen have helped me cope.
Ten years into this mets journey I’m still dancing, singing
and living a good life. Maybe it’s not the life I hoped for, but it’s a good
life nonetheless.
I believe in the power of prayer. One of my doctors prays
for me every day. To this doctor, I am both a patient and a friend thought of
daily.
No matter how many times I will go around the metastatic
merry-go-round, I appreciate that my health care providers will be there for me
at every turn. I know that they will always tell me the truth. I count on them
to help me know when enough is enough.
For this tenth “metsiversary” I’ve made a charitable
donation to METAvivor in honor of my caring and compassionate medical
providers. METAvivor is the only US nonprofit awarding research grants solely
for metastatic breast cancer.
My oncologist has always told me that I just have to live
long enough for the next new treatment to arrive. I know how lucky I’ve been to
have ten years of new treatments and to be living well with mets.
August 15, 2012
August 11, 2012
Checking in
Not much to say...
It's been warm and lovely in Seattle, with more expected in the coming days. I've worked in the garden, sat on my chaise lounge to read summer-fluff books, and cooked.
A;though it's a bit early in the year, I trimmed the dead raspberry canes in order to more easily stake up the new growth. The chester berry canes are full of fruit, but it will take more warm weather to ripen. I've had several dozen yellow cherry tomatoes from my potted plants. Thee are three of "Early Girl" tomatoes but I think I should give up on them in the future. We just don't get enough heat early in the summer. Cherry tomatoes do the best. The basil took nicely and we've eaten many tomato, basil and mozzarella salads with tomatoes from the farmers' market when I don't have enough. The snow peas have been great producers, as usual. I transplanted French sorrel from a pot back into a raised bed with a tomato cage around it to give the sorrel something to grow against. And I've had MANY fuschias bloom in every location where I planted them, from in the new part-shade garden to pots. I even got last year's fuschias to re-bloom!
I wish the books were worth talking about. Instead I'll tell the story of the chaise. When we rented a house, our landlords lived next door. In 2002, the summer my leg broke, they graciously loaned me the chaise so I could sit outside. It's made of steel and has a long pad, a back pad and is very comfortable. Every summer our landlords let us use the chaise, and when we moved to the current house, they made the loan permanent. This year I had a local cleaner try to scrub years of use off the cushions, and now they sparkle in the sun. The chaise is a great place to sit and read on a summer day, with a cold drink at hand.
The cooking has been exciting. I made Julia Child's recipe for ratatouille, a fresh corn casserole, a Portuguese tuna mousse, and individual peach filo triangles with vanilla ice cream. The eggplant, zucchini, onions, peppers, corn and peaches all came from our local farmers' market. My garden supplied more of those yellow cherry tomatoes, basil and snow peas. If I say so myself, it was a delicious dinner.
I look forward to more of the same this week, so don't be surprised if I don't blog as frequently.
It's been warm and lovely in Seattle, with more expected in the coming days. I've worked in the garden, sat on my chaise lounge to read summer-fluff books, and cooked.
A;though it's a bit early in the year, I trimmed the dead raspberry canes in order to more easily stake up the new growth. The chester berry canes are full of fruit, but it will take more warm weather to ripen. I've had several dozen yellow cherry tomatoes from my potted plants. Thee are three of "Early Girl" tomatoes but I think I should give up on them in the future. We just don't get enough heat early in the summer. Cherry tomatoes do the best. The basil took nicely and we've eaten many tomato, basil and mozzarella salads with tomatoes from the farmers' market when I don't have enough. The snow peas have been great producers, as usual. I transplanted French sorrel from a pot back into a raised bed with a tomato cage around it to give the sorrel something to grow against. And I've had MANY fuschias bloom in every location where I planted them, from in the new part-shade garden to pots. I even got last year's fuschias to re-bloom!
I wish the books were worth talking about. Instead I'll tell the story of the chaise. When we rented a house, our landlords lived next door. In 2002, the summer my leg broke, they graciously loaned me the chaise so I could sit outside. It's made of steel and has a long pad, a back pad and is very comfortable. Every summer our landlords let us use the chaise, and when we moved to the current house, they made the loan permanent. This year I had a local cleaner try to scrub years of use off the cushions, and now they sparkle in the sun. The chaise is a great place to sit and read on a summer day, with a cold drink at hand.
The cooking has been exciting. I made Julia Child's recipe for ratatouille, a fresh corn casserole, a Portuguese tuna mousse, and individual peach filo triangles with vanilla ice cream. The eggplant, zucchini, onions, peppers, corn and peaches all came from our local farmers' market. My garden supplied more of those yellow cherry tomatoes, basil and snow peas. If I say so myself, it was a delicious dinner.
I look forward to more of the same this week, so don't be surprised if I don't blog as frequently.
August 07, 2012
Avastin again
Yesterday's infusion of Avastin was very tolerable, although as usual, nothing went smoothly. Dr G didn't include an order for a urinalysis or specify how long the infusion was to last. It took a while to get the answers. Since it'd been more than six months since my last Avastin treatment, I had a 90 minute infusion. The whole appointment lasted about four hours.
Other than that, I have nothing new to report!
Other than that, I have nothing new to report!
August 06, 2012
Top blog!
Healthline editors recently published the final list of their favorite Breast Cancer blogs and my blog made the list. You can read their take on my blog here.
This is the second time my blog has been recognized by others in the blogosphere. Although I started blogging in order for family and friends to know what was going on with my health, I am proud to have readers who I've never met, who live in other parts of the world, who may or may not have metastatic breast cancer, yet who care about me.
This is the second time my blog has been recognized by others in the blogosphere. Although I started blogging in order for family and friends to know what was going on with my health, I am proud to have readers who I've never met, who live in other parts of the world, who may or may not have metastatic breast cancer, yet who care about me.
August 03, 2012
Stability!
Dr G and the radiologist who read my recent CT scan agree that the scan shows stable disease. Of course, that means we don't know why one of my tumor markers increased. But stable is always good.
I start Avastin again next Monday. This drug, which I took for about a year while on Abraxane the second time, acts like a booster for the other cancer therapies. Although the FDA recently decided it was not effective enough for treatment of metastatic breast cancer, some people, including me, respond very well to it. I'll get the Avastin every other week by infusion. It should take 90 minutes to two hours for the whole thing, from the time they access my port to the time they de-access me. I will continue on the Afinitor+Aromasin+high dose Faslodex combo.
More than 30% of patients taking Avastin have these side effects:
Generalized Weakness
Pain
Abdominal pain
Nausea & vomiting
Poor appetite
Constipation
Upper respiratory infection
Low white blood cell count. (This can put you at increased risk for infection.)
Proteinuria (see kidney problems)
Nose bleed (see bleeding problems)
Diarrhea
Hair loss
Mouth sores
Headache
I start Avastin again next Monday. This drug, which I took for about a year while on Abraxane the second time, acts like a booster for the other cancer therapies. Although the FDA recently decided it was not effective enough for treatment of metastatic breast cancer, some people, including me, respond very well to it. I'll get the Avastin every other week by infusion. It should take 90 minutes to two hours for the whole thing, from the time they access my port to the time they de-access me. I will continue on the Afinitor+Aromasin+high dose Faslodex combo.
More than 30% of patients taking Avastin have these side effects:
Generalized Weakness
Pain
Abdominal pain
Nausea & vomiting
Poor appetite
Constipation
Upper respiratory infection
Low white blood cell count. (This can put you at increased risk for infection.)
Proteinuria (see kidney problems)
Nose bleed (see bleeding problems)
Diarrhea
Hair loss
Mouth sores
Headache
It's hard for me to tell what side effects I had the last time I took Avastin because I received it with chemotherapy. So, say it with me:
This drug combo should be highly effective with minimal side effects.
August 01, 2012
CT scan
Yesterday I had a CT scan to determine the current state of my cancer. Normally these go easily, but this time I tried really hard to brink both bottles of the barium solution. I got through one and almost all of the second bottle. The barium didn't sit too well in my tummy, and by the time I got home it had caused some unpleasant diarrhea which lasted most of the evening. Yuck!
I get the results from Dr G tomorrow afternoon.
I get the results from Dr G tomorrow afternoon.
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