On Monday at 7:30 AM we were waiting at the Swedish Cancer Institute for the lab to open. So much for communication. On the phone the nurse told me my appointment was at 8:00; I had also been told to arrive one hour early for lab work. The lab doesn't open until 8 AM; my chemo appointment was actually for 8:30. We bounced around looking for the right place to go before most of the employees had arrived. And then the nurse couldn't find my doc's orders in the computer system. Good thing I had hand-carried a signed print out when I saw him last week.
I would really like for this to go more smoothly in the future. It seems that the staff assume the patients, even new ones, know what to do. My doc's personal assistant even told me today it would be complicated to go there instead of at his office, but even with the complications, I think Swedish is the place to go.
That said, the lab tech accessed my port and drew my blood. After a short wait, the nurse called me back to the infusion suite and told me my red blood cell, white blood cell and neutrophil counts were low and that Dr. G decided I should not have chemo that day. I appreciate his conservative caution. No one wants a repeat of last year's two week stay in the hospital. Even though I feel well, low counts mean I should avoid crowds and people with the sniffles. I don't want to catch anything and with low counts, my immune system is more likely to pick up a stray bug.
So Rik and I left at 9 AM and decided to run some errands while it was so early. After we got home I called Dr. G's office as requested and heard back today that he wants me to "try again next week."
This may keep me on a short tether to the chemo chair. Even if we can't know from week to week if I will be healthy enough to receive treatment, I still have to go in every Monday to have blood drawn and checked.
I am still putting it out to the universe that Abraxane is very effective, well-tolerated, with minimal side effects, and that I will be among the 10% who keep their hair.
May 11, 2010
May 10, 2010
Key Mechanism Identified in Metastatic Breast Cancer
I receive a weekly Google Alert for metastatic breast cancer and every so often something really intriguing comes my way. In this article, Key Mechanism Identified in Metastatic Breast Cancer, "scientists at the University of Kentucky Markey Cancer Center have identified a key molecular mechanism in breast cancer that enables tumor cells to spread to adjacent or distant parts of the body in a process called metastasis. This finding opens the way to new lines of research aimed at developing treatments for metastatic breast cancer."
We all know that there is a lot of research on early stage breast cancer, not so much on stage IV or metastatic disease. The fact that something entirely new has come up only serves to reinforce what Dr. Goldberg is always telling me: that I just have to live long enough for the next new thing to come down the "highway."
To read the whole article, click here.
We all know that there is a lot of research on early stage breast cancer, not so much on stage IV or metastatic disease. The fact that something entirely new has come up only serves to reinforce what Dr. Goldberg is always telling me: that I just have to live long enough for the next new thing to come down the "highway."
To read the whole article, click here.
May 09, 2010
A sunny Seattle day
This weekend has been glorious in Seattle -- about 70 degrees, bright and sunny. After the recent cool, wet weather that felt more like November than May, it feels like nothing short of a miracle.
My independence has increased exponentially since a week ago when I had just received clearance from the orthopod to drive and be in the house without the Borg brace. (Resistance is futile: I just hate wearing the damn thing.) After spending several days without the brace, even when alone in the house, I feel more confident of my ability to putter around. You know, do things like empty the dishwasher, start a load of laundry, prepare a meal, read a book, pet the dogs.
Yesterday I drove for only the second time since seder. I felt much more confident and decided that I had to extend my driving range beyond the two miles to synagogue. So today I headed off to the grocery store (on my own), did the shopping (on my own) and put gas in the car (again, on my own). It felt terrific! I might even be willing to drive to a medical appointment and face parallel parking this week.
I also picked up a few plants to set out in pots today. I bought Sweet Million and Green Grape organic tomato starts two varieties that do well in the Pacific Northwest), marigolds to cross-plant with them, some basil and an upright fuschia and begonia for the deck railing pot. There are still happy pansies blooming in that pot and the whole thing should be quite colorful. Plus our neighbors across the street who have the fabulous garden have offered me some other tomato plants as well.
Now to give Bobka the dog a trim. Clearly I am feeling well this weekend!
My independence has increased exponentially since a week ago when I had just received clearance from the orthopod to drive and be in the house without the Borg brace. (Resistance is futile: I just hate wearing the damn thing.) After spending several days without the brace, even when alone in the house, I feel more confident of my ability to putter around. You know, do things like empty the dishwasher, start a load of laundry, prepare a meal, read a book, pet the dogs.
Yesterday I drove for only the second time since seder. I felt much more confident and decided that I had to extend my driving range beyond the two miles to synagogue. So today I headed off to the grocery store (on my own), did the shopping (on my own) and put gas in the car (again, on my own). It felt terrific! I might even be willing to drive to a medical appointment and face parallel parking this week.
I also picked up a few plants to set out in pots today. I bought Sweet Million and Green Grape organic tomato starts two varieties that do well in the Pacific Northwest), marigolds to cross-plant with them, some basil and an upright fuschia and begonia for the deck railing pot. There are still happy pansies blooming in that pot and the whole thing should be quite colorful. Plus our neighbors across the street who have the fabulous garden have offered me some other tomato plants as well.
Now to give Bobka the dog a trim. Clearly I am feeling well this weekend!
May 07, 2010
A little nausea
Yesterday afternoon at about 5 PM I quite suddenly sensed that I might vomit. Ran to my purse, grabbed the zofran and swallowed one within moments of that sensation. All turned out well. I did develop a queasy tummy that lasted most of the evening but the urge to throw up passed quickly.
This was my first experience with sudden nausea since starting the abraxane. I don't know if it's typical or not, but I was sure glad that I had meds right on hand and that they worked immediately. This why I carry the zofran with me. If something could hit me that quickly, I want to be able to treat it.
I learned the trick of carrying what you need from a support group I used to attend. My dad was very sick at the time and since I live on the opposite side of the country, I was worried and never had enough information to satisfy my curiosity. The group members suggested that I always carry some ativan with me, just in case. I already was in the habit of carrying pain meds. Adding a couple of tiny ativan pills was an easy fix. And I remembered this trick when I started the current chemo.
Feel free to pass the tip along!
This was my first experience with sudden nausea since starting the abraxane. I don't know if it's typical or not, but I was sure glad that I had meds right on hand and that they worked immediately. This why I carry the zofran with me. If something could hit me that quickly, I want to be able to treat it.
I learned the trick of carrying what you need from a support group I used to attend. My dad was very sick at the time and since I live on the opposite side of the country, I was worried and never had enough information to satisfy my curiosity. The group members suggested that I always carry some ativan with me, just in case. I already was in the habit of carrying pain meds. Adding a couple of tiny ativan pills was an easy fix. And I remembered this trick when I started the current chemo.
Feel free to pass the tip along!
May 06, 2010
Lymphedema legislation
I just learned about House of Representatives legislation in the works to provide Medicare coverage of lymphedema diagnosis and treatment. Here's what I wrote to my Congressman, Jim McDermott. I hope you will consider taking action also.
To find and contact your Congressional representative, click here.
To read more about the mom whose son was born with primary lymphedema, and who started this bill, read this article.
To find and contact your Congressional representative, click here.
As an 11 year breast cancer survivor living with lymphedema, I sincerely hope that Rep. McDermott will support H.R. 4662: Lymphedema Diagnosis and Treatment Cost Saving Act of 2010.
Medicare and Medicaid do not currently pay for treatment of lymphedema, a life-long condition related to surgery for removal of lymph nodes. It is also congenital. HR 4662 would cover diagnosis, compression garments, and special physical therapy that people living with lymphedema require to maintain good health.
I've had metastatic breast cancer for 7 years, am now age 50 and hope to live long enough for my lymphedema treatment and garments to be covered by Medicare.
Given the large numbers of women diagnosed with breast cancer every year in our country, who will have a lifelong risk of developing lymphedema, this is an enormous hole in our health system. I hope Rep. McDermott will help rectify this lack.
To read more about the mom whose son was born with primary lymphedema, and who started this bill, read this article.
Health insurance blues
Yesterday we received a denial of coverage for a wig from Pacificare, our health insurance company. Even when phrased as a "cranial prosthesis for chemotherapy hair loss," Pacificare wrote that a wig is not a covered benefit under our policy.
The interesting thing to me is whether this is something negotiated by the Seattle Public Schools
as part of their health insurance contract, or if Pacificare routinely does not cover wigs for hair loss due to chemo. Either way, it's clear to me that the people who do the contract negotiations have never been through chemo and experienced hair loss, or they would clamor to include wigs as a covered benefit. Does the Seattle School District really want their teachers, especially the female ones, going to school bald from chemotherapy? It seems to me looking at a bald female teacher would distract students from learning.
I decided not to sing with Dunava at the NW Folklife Festival later this month because 1) I wasn't sure how I would feel after a few rounds of chemo, but even more 2) if I go on stage bald, or wearing a scarf over a clearly bald head, it would distract the audience from our performance.
I can still purchase the $240 wig instead of the $1600 one for days when I want to look like I have hair.
So I have added to my chemo mantra that I will be part of the 10% of those taking abraxane who keep their hair. And that abraxane will be well-tolerated, with minimal side effects, and very effective.
The interesting thing to me is whether this is something negotiated by the Seattle Public Schools
as part of their health insurance contract, or if Pacificare routinely does not cover wigs for hair loss due to chemo. Either way, it's clear to me that the people who do the contract negotiations have never been through chemo and experienced hair loss, or they would clamor to include wigs as a covered benefit. Does the Seattle School District really want their teachers, especially the female ones, going to school bald from chemotherapy? It seems to me looking at a bald female teacher would distract students from learning.
I decided not to sing with Dunava at the NW Folklife Festival later this month because 1) I wasn't sure how I would feel after a few rounds of chemo, but even more 2) if I go on stage bald, or wearing a scarf over a clearly bald head, it would distract the audience from our performance.
I can still purchase the $240 wig instead of the $1600 one for days when I want to look like I have hair.
So I have added to my chemo mantra that I will be part of the 10% of those taking abraxane who keep their hair. And that abraxane will be well-tolerated, with minimal side effects, and very effective.
May 05, 2010
An update from the oncologist
I saw Dr. G, Seattle's best oncologist, yesterday and we agreed on the following --
In the meantime I am feeling well this morning and have plans to see yet a third wig provider and have lunch with a friend later today.
There is a 90% chance I will lose my hair to the abraxane. But that means 10% of people don't, and I know someone who falls into that category. So I thought of another addition to my chemo mantra: I hope to keep my hair, but if I do lose it to the chemo, I am prepared. Because (say it with me) this chemo is well-tolerated, very effective, with minimal side effects.
Chemo will be three weeks on, one week off (yay! a plan!)
Although they test my blood before every chemo to see if I am healthy enough to be treated (i.e. not anemic), I will also have a test of my tumor marker CA 27.29 in a few weeks to see how effective the abraxane is.
I told him about the burping and he prescribed an OTC chewable medicine called Gas-X which gave me immediate relief last night after dinner. I am to take one after every meal and before bed (maximum four times a day) if I find myself burping. I could call the naturopath also and get his advice, but I'm pretty sure he'll tell me to take more of the digestive enzymes which I can't stand and don't think work very well.
We think we have resolved the confusion over orders placed in the electronic system. The Swedish Cancer Institute is still getting used to this way of doing things, and they were not expecting electronic orders from Dr. G. Hopefully all will go smoothly next Monday.
In the meantime I am feeling well this morning and have plans to see yet a third wig provider and have lunch with a friend later today.
There is a 90% chance I will lose my hair to the abraxane. But that means 10% of people don't, and I know someone who falls into that category. So I thought of another addition to my chemo mantra: I hope to keep my hair, but if I do lose it to the chemo, I am prepared. Because (say it with me) this chemo is well-tolerated, very effective, with minimal side effects.
May 04, 2010
Day after second round of chemo
I had my second abraxane yesterday and was out of it for most of the afternoon. The pre-med compazine again made me sleepy and then a little anxious, and the oral ativan did not help as much as the IV version did last week. I told the nurse I did not want either the decadron or reglan after last week's reglan freakout. It may be that I have the same reaction to compazine as both those other drugs, and if so, I will ask Dr. G if I can skip all three of these pre-meds and just get the abraxane.
We had another very long wait. Something in the electronic system isn't working properly. The cancer institute says they have orders but no labs. As I spoke with his assistant, I could hear Dr. G in the background saying "I put the labs in the system twice this morning! Finally someone somewhere found all the paperwork and they could access my port, after we'd been in the waiting room for almost two hours. I plan to address this among many other items when I see Dr. G later today.
After chemo I slept for an hour or so at home and rebounded to enjoy dinner cooked by Rik - Moroccan Meatball Tagine, from scratch no less, with me reading the recipe to him while he did the work. Rik ate this dish at a recent potluck and loved it so much we had to get the recipe and buy ground beef. We both think it would be even better with ground lamb too. Since I had eaten pad Thai (rice noodles) for lunch and felt over my carb limit for the day, we ate the meatballs with fresh corn instead of over couscous. Same carbs but I am not limiting produce from my diet. It was delicious!
I feel pretty good this morning so far and continue to recite my chemo mantra. Say it with me: very effective, well tolerated, minimal side effects.
We had another very long wait. Something in the electronic system isn't working properly. The cancer institute says they have orders but no labs. As I spoke with his assistant, I could hear Dr. G in the background saying "I put the labs in the system twice this morning! Finally someone somewhere found all the paperwork and they could access my port, after we'd been in the waiting room for almost two hours. I plan to address this among many other items when I see Dr. G later today.
After chemo I slept for an hour or so at home and rebounded to enjoy dinner cooked by Rik - Moroccan Meatball Tagine, from scratch no less, with me reading the recipe to him while he did the work. Rik ate this dish at a recent potluck and loved it so much we had to get the recipe and buy ground beef. We both think it would be even better with ground lamb too. Since I had eaten pad Thai (rice noodles) for lunch and felt over my carb limit for the day, we ate the meatballs with fresh corn instead of over couscous. Same carbs but I am not limiting produce from my diet. It was delicious!
I feel pretty good this morning so far and continue to recite my chemo mantra. Say it with me: very effective, well tolerated, minimal side effects.
May 01, 2010
Cleared to drive!
On Thursday I called Dr. W the orthopod with the question I forgot to ask when I saw him earlier in the week: when can I start driving again? On Friday his assistant called back with the good word that as long as I could grip the steering wheel safely, he thinks it is okay to drive while wearing the brace.
As it happens, a few months ago my physical therapist gave me a sheet of blue sticky stuff to wrap around items in order to make them easier to grip. I was concerned that I didn't have a good handle on the steering wheel while bandaged, and this stuff was supposed to do the trick. Rik and I attached a strip around the 10 AM and 2 PM points on the steering wheel this morning and off I went!
I sat behind the wheel and heaved a great sigh of relief to feel more independent after 5+ weeks of having to be driven everywhere. The drive to shul is short and familiar. I got the last parking spot in the lot. If one hadn't been available, I would have turned around to go home and Rik could have taken me back and dropped me off. I didn't feel quite ready to parallel park on my first outing.
I plan to continue to ask for rides to medical appointments this week, since I really don't want to parallel park, or park far away and have to walk unescorted for a distance. I am still nervous about falling, even though I have not begun to develop the peripheral neuropathy that can be associated with the abraxane. And of course I am holding my chemo mantra in mind: well tolerated, minimal side effects, very effective.
As it happens, a few months ago my physical therapist gave me a sheet of blue sticky stuff to wrap around items in order to make them easier to grip. I was concerned that I didn't have a good handle on the steering wheel while bandaged, and this stuff was supposed to do the trick. Rik and I attached a strip around the 10 AM and 2 PM points on the steering wheel this morning and off I went!
I sat behind the wheel and heaved a great sigh of relief to feel more independent after 5+ weeks of having to be driven everywhere. The drive to shul is short and familiar. I got the last parking spot in the lot. If one hadn't been available, I would have turned around to go home and Rik could have taken me back and dropped me off. I didn't feel quite ready to parallel park on my first outing.
I plan to continue to ask for rides to medical appointments this week, since I really don't want to parallel park, or park far away and have to walk unescorted for a distance. I am still nervous about falling, even though I have not begun to develop the peripheral neuropathy that can be associated with the abraxane. And of course I am holding my chemo mantra in mind: well tolerated, minimal side effects, very effective.
Is burping a chemo side effect?
For the first time in my life, I have been burping. All week long I have urped my way through conversations, meals, even synagogue. I am guessing this is a chemo side effect although it's not specifically mentioned in the drug pamphlet.
On Friday the burps turned into a queasy tummy -- not precisely nausea. A zofran tablet at 11 AM took care of the daytime queasiness, and another at 6 PM helped me get through Shabbat dinner with friends. A little ativan along the way didn't hurt either.
Today was better, although after coming home from shul I took another zofran and some more ativan a few minutes ago. Now I will drink some ginger ale.
I think this falls under my chemo mantra of minimal side effects, the other parts of course being very effective and well tolerated.
(burp!)
On Friday the burps turned into a queasy tummy -- not precisely nausea. A zofran tablet at 11 AM took care of the daytime queasiness, and another at 6 PM helped me get through Shabbat dinner with friends. A little ativan along the way didn't hurt either.
Today was better, although after coming home from shul I took another zofran and some more ativan a few minutes ago. Now I will drink some ginger ale.
I think this falls under my chemo mantra of minimal side effects, the other parts of course being very effective and well tolerated.
(burp!)
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