This morning I was fortunate to spent some time visiting with my friend Josh who recently entered hospice care for his advanced epitheliod sarcoma. You may remember his film, My Left Hand, and of course his blog.
A week ago everyone was sure he was dying, and soon. When I arrived today he was sitting in a chair eating breakfast. He was able to take a cell phone call. The human body's ability to hang onto quality of life and the human spirit's need to connect with loved ones never cease to amaze me.
Josh was surrounded by family and beloved friends last week. That's a good way for all of us to live, basking in the care of those we love and who love us.
July 20, 2010
Doxil round #2
Yesterday I had the second treatment of Doxil. I was much less stressed than the first one, and my blood pressure was suitably lower. I received 8 mg oral Decadron (steroid) and 1 mg oral Ativan (anti-anxiety), plus IV Emend (anti-nausea) as pre-meds, all exactly the same as last time. I was relatively relaxed and the Ativan actually made me doze a bit.
The Doxil went smoothly. I also received my monthly treatment of Zometa, the bone building wonder drug that also has cancer fighting properties. L the charge nurse was so on top of things! Last Friday she was looking ahead and saw that I was due for Zometa this week, called Dr. G and got him to order it. Everything was ready when I arrived, although it did take a while to get all the drugs.
I asked Rik to take me to Molly Moon's for ice cream afterwards. (I needed the sugar hit to counter the Ativan drowsiness.) With a half scoop each of salted caramel and ginger covered with hot fudge sauce in me, I felt so terrific that I didn't need a nap and was able to bake a pizza for dinner. And I slept well at night without any sleep aids.
This morning I took the second of three doses of Emend. I also went back to the Cancer Institute for a shot of Neulasta, a drug which builds white blood cells. Because my white count was down a bit (but not too much to cancel treatment), and because the Doxil will continue to lower my white count, Dr. G prescribed Neulasta to help my body build neutrophils (immature white blood cells). Increased white counts should keep me from getting an infection. The shot hardly stung when administered in the fatty part of my upper arm. I may have bone pain in 12-18 hours that might last for one day, but this is hardly new to a woman who has had bone mets in more than 20 sites for the past almost eight years.
The Doxil went smoothly. I also received my monthly treatment of Zometa, the bone building wonder drug that also has cancer fighting properties. L the charge nurse was so on top of things! Last Friday she was looking ahead and saw that I was due for Zometa this week, called Dr. G and got him to order it. Everything was ready when I arrived, although it did take a while to get all the drugs.
I asked Rik to take me to Molly Moon's for ice cream afterwards. (I needed the sugar hit to counter the Ativan drowsiness.) With a half scoop each of salted caramel and ginger covered with hot fudge sauce in me, I felt so terrific that I didn't need a nap and was able to bake a pizza for dinner. And I slept well at night without any sleep aids.
This morning I took the second of three doses of Emend. I also went back to the Cancer Institute for a shot of Neulasta, a drug which builds white blood cells. Because my white count was down a bit (but not too much to cancel treatment), and because the Doxil will continue to lower my white count, Dr. G prescribed Neulasta to help my body build neutrophils (immature white blood cells). Increased white counts should keep me from getting an infection. The shot hardly stung when administered in the fatty part of my upper arm. I may have bone pain in 12-18 hours that might last for one day, but this is hardly new to a woman who has had bone mets in more than 20 sites for the past almost eight years.
July 18, 2010
What's new
I thought we were having a mostly quiet weekend but things ended up busier than I expected. It's wonderful to be able to enjoy life again.
Shabbat dinner on Friday night ended up being quite lively, with two dogs and multiple, energetic conversations in the living room and at the table. The mocha affogato (chocolate-coffee sauce) over ice cream was a particular hit.
The prescription lozenges for the thrush infection appear to be helping. My throat and tongue feel less sore. I will keep sucking on these puppies five times a day until they're gone!
I went to synagogue on Saturday morning and enjoyed seeing and hearing our former rabbi speak. Not to mention how gracious our current rabbi is in sharing her pulpit!
On Saturday night we went for Chinese food with friends who then came back here for chocolate cake and an attempt to find some ripe raspberries in our garden. A good time was had by all, even though the raspberries appear to be at a standstill.
I switched back to Ambien a couple of nights ago and had weird, disturbing dreams. So decided I should come off of all sleep aid meds and try to get some natural sleep, even though I am still bandaging for the lymphedema at night. The price of doing this is always a few nights of insomnia. I got about four hours' sleep Saturday night but did take a nice nap this afternoon.
Today I ran errands and Rik just hung out. We are having dinner with friends. Tomorrow I report to the cancer institute for the second round of Doxil. Assuming my blood counts are high enough...
Shabbat dinner on Friday night ended up being quite lively, with two dogs and multiple, energetic conversations in the living room and at the table. The mocha affogato (chocolate-coffee sauce) over ice cream was a particular hit.
The prescription lozenges for the thrush infection appear to be helping. My throat and tongue feel less sore. I will keep sucking on these puppies five times a day until they're gone!
I went to synagogue on Saturday morning and enjoyed seeing and hearing our former rabbi speak. Not to mention how gracious our current rabbi is in sharing her pulpit!
On Saturday night we went for Chinese food with friends who then came back here for chocolate cake and an attempt to find some ripe raspberries in our garden. A good time was had by all, even though the raspberries appear to be at a standstill.
I switched back to Ambien a couple of nights ago and had weird, disturbing dreams. So decided I should come off of all sleep aid meds and try to get some natural sleep, even though I am still bandaging for the lymphedema at night. The price of doing this is always a few nights of insomnia. I got about four hours' sleep Saturday night but did take a nice nap this afternoon.
Today I ran errands and Rik just hung out. We are having dinner with friends. Tomorrow I report to the cancer institute for the second round of Doxil. Assuming my blood counts are high enough...
July 16, 2010
Thrush
I seem to have developed a mild case of thrush, a fungal infection of the mouth that can be caused by a lowered immune system due to chemotherapy.
My tongue, throat and mouth felt a little sore, like when you're coming down with a cold, and my tongue got white and coated. At my new support group I asked if this might be mouth sores (also due to lowered immunity from chemo) and was told it sounded like thrush.
Thrush is common in babies and young children, as well as cancer patients on chemo. Dr. G prescribed clotrimazol (Mycelex), dissolving lozenges. You place one on your tongue and let is slowly dissolve over 15-30 minutes -- five times a day. It might take seven to ten days for this infection to clear up. Like antibiotics, the symptoms may disappear sooner but you have to finish the whole dose.
So far it's just annoying and hasn't stopped me from swallowing or eating. But it's a symbol that the chemo is doing something, and that makes me feel hopeful it will be very effective, have manageable side effects, and be very tolerable. The next dose of Doxil is scheduled for on Monday, if my counts permit.
My tongue, throat and mouth felt a little sore, like when you're coming down with a cold, and my tongue got white and coated. At my new support group I asked if this might be mouth sores (also due to lowered immunity from chemo) and was told it sounded like thrush.
Thrush is common in babies and young children, as well as cancer patients on chemo. Dr. G prescribed clotrimazol (Mycelex), dissolving lozenges. You place one on your tongue and let is slowly dissolve over 15-30 minutes -- five times a day. It might take seven to ten days for this infection to clear up. Like antibiotics, the symptoms may disappear sooner but you have to finish the whole dose.
So far it's just annoying and hasn't stopped me from swallowing or eating. But it's a symbol that the chemo is doing something, and that makes me feel hopeful it will be very effective, have manageable side effects, and be very tolerable. The next dose of Doxil is scheduled for on Monday, if my counts permit.
July 13, 2010
At the beach
We spent last week in Moclips, WA, a tiny beach town on the Washington coast. There's nothing there but houses and a few motels, a general store and miles of sandy beach. We bring in everything, including food, and spend our days taking long walks, reading books, and generally relaxing. It's a very quiet vacation, just what the educator needs after a long year of teaching high school.
The Moclips beach is particularly dog friendly. We missed having Pumpkin with us. He used to love romping on the sand and getting really dirty, although he was never all that interested in going into the Pacific Ocean or the mighty Moclips River. Bobka LOVED running on the beach with Rik, chasing seagulls and greeting other dogs and their people. His first experience of an ocean wave was so unexpected, it toppled him off his feet. But his doggy swimming instinct kicked in (they don't call it the "dog paddle" for nothing).
We visited with friends, made a couple of bonfires on the beach to roast marshmallows for s'mores and sing Beatles tunes, ate well, and walked every day. The weather was sunny and fine for three days, then got misty and cool for the rest of the week. That was okay with us, since it turned out we missed a serious heat wave in Seattle, with temps in the 90s.
I felt really good the entire time. It might have been the sunshine, the salt air, or the good company, but I felt almost normal for the first time in a month.
Back to the usual
Yesterday was a return to the usual -- saw a doctor, ran errands, bought groceries, and had a two hour nap. It was very cool in Seattle again. The thermometer barely broke 60 degrees. Hard to believe this is summer.
My primary care doc asked me to take the depression assessment again and after two weeks on Zoloft I have lowered my score from 15 (moderately severe depression) to 9 (moderate depression). So evidently the 50 mg dose of Zoloft is working, although I personally believe that just getting a medical professional to listen to me and write a prescription was half the battle. I'll stay on it for a while.
After a week away we were in need of major groceries. Since we were already downtown we went to Big John's Pacific Food Importers where we bought farro (a low-carb carbohydrate that you cook like rice, very yummy) and assorted imported delights such as Bulgarian feta cheese and ajvar (roasted red pepper puree), fresh filo, sour cherry syrup to mix into seltzer, smoked gouda cheese, etc. I don't go there often but when I do I always have fun! Spanakopita for dinner tonight.
Then off to the main supermarket where kosher poultry was on sale so we stocked up on chicken and turkey thighs to put in the freezer. I am looking forward to a barbecue soon.
One bit of good news is that Sky, the care rep. at Pacificare Behavioral Health who has been advocating for me, put in for an "accommodation" for me to be able to see a psychiatrist at the Swedish Cancer Institute, who was not one of their in-network providers. She is cautiously optimistic that the request will be approved and I await notification in the mail.
I promise I will post about our vacation soon, but am off to yet another doctor this morning, followed by a visit to see a dying friend and a meeting this afternoon. Perhaps I can get to the photos tonight.
My primary care doc asked me to take the depression assessment again and after two weeks on Zoloft I have lowered my score from 15 (moderately severe depression) to 9 (moderate depression). So evidently the 50 mg dose of Zoloft is working, although I personally believe that just getting a medical professional to listen to me and write a prescription was half the battle. I'll stay on it for a while.
After a week away we were in need of major groceries. Since we were already downtown we went to Big John's Pacific Food Importers where we bought farro (a low-carb carbohydrate that you cook like rice, very yummy) and assorted imported delights such as Bulgarian feta cheese and ajvar (roasted red pepper puree), fresh filo, sour cherry syrup to mix into seltzer, smoked gouda cheese, etc. I don't go there often but when I do I always have fun! Spanakopita for dinner tonight.
Then off to the main supermarket where kosher poultry was on sale so we stocked up on chicken and turkey thighs to put in the freezer. I am looking forward to a barbecue soon.
One bit of good news is that Sky, the care rep. at Pacificare Behavioral Health who has been advocating for me, put in for an "accommodation" for me to be able to see a psychiatrist at the Swedish Cancer Institute, who was not one of their in-network providers. She is cautiously optimistic that the request will be approved and I await notification in the mail.
I promise I will post about our vacation soon, but am off to yet another doctor this morning, followed by a visit to see a dying friend and a meeting this afternoon. Perhaps I can get to the photos tonight.
July 11, 2010
Back from the beach
We are back from spending a week on the Washington coast in the small town of Moclips. We've been going there for several years (missed last summer due to the bathroom remodel). Moclips is a whopping three streets big, with houses along the oceanfront. The beach is wide and sandy, the salt air invigorating, and we both feel rested and relaxed.
More later after the unpacking!
More later after the unpacking!
July 05, 2010
Independence Day
I just had to share this funny memory of my dad singing his words to John Philips Sousa's "Stars and Stripes Forever" every 4th of July --
Be kind to your web-footed friends
For a duck may be somebody's mother,
They live in the field and the swamp
Where it is cold and damp.
You may think that this is the end...
Well it is!
Taking it easy
I got through the first week on Doxil pretty well. I've had more energy in the mornings, been tired in the afternoons and needed a nap, and generally been taking it easy. I believe I will continue this pattern for the next few days, so don't be surprised if I don't post -- nothing to say.
This "hunkering down" is just so I don't overwhelm myself with too much to do. Summer should be relaxed and easy going, and if I have to spend mine on chemo, I plan to try to enjoy the warm weather we're (finally!) expecting.
Rik picked another pint of strawberries today, I think the last of the season. Plus he picked about a quart of raspberries. If we continue to pick them, we may have fruit all summer long. Although this does seem early for raspberries..... The chesterberry vines are HUGE, sprawling 15 feet into the air. I can't imagine how we will reach that fruit. Maybe with a ladder, although I don't want Rik climbing ladders anymore after last summer's fall from the height of the plum tree.
Our young friend H did about ten hours of work in the garden, weeding everything in sight and mulching over where she had to remove too many weed-choked plants. So things look generally spruced up.
We're finally expecting summer in the Puget Sound this week. I can hardly wait for warm temperatures! But I promise to be careful in the sun (a Doxil issue).
This "hunkering down" is just so I don't overwhelm myself with too much to do. Summer should be relaxed and easy going, and if I have to spend mine on chemo, I plan to try to enjoy the warm weather we're (finally!) expecting.
Rik picked another pint of strawberries today, I think the last of the season. Plus he picked about a quart of raspberries. If we continue to pick them, we may have fruit all summer long. Although this does seem early for raspberries..... The chesterberry vines are HUGE, sprawling 15 feet into the air. I can't imagine how we will reach that fruit. Maybe with a ladder, although I don't want Rik climbing ladders anymore after last summer's fall from the height of the plum tree.
Our young friend H did about ten hours of work in the garden, weeding everything in sight and mulching over where she had to remove too many weed-choked plants. So things look generally spruced up.
We're finally expecting summer in the Puget Sound this week. I can hardly wait for warm temperatures! But I promise to be careful in the sun (a Doxil issue).
July 02, 2010
Keeping up energy
I was so busy on Tuesday that I took it VERY easy on Wednesday and Thursday. The uptick in energy I got from the Decadron on Monday began to wear off by Thursday.
Wednesday began with coffee with a friend. I am so grateful to my friends who call, send email, and persist in trying to reach me. Even if I don't feel like talking, I want you to know that I love getting your messages.
In the afternoon I went to my support group of young women with metastatic breast cancer. This group meets monthly, has no facilitator, but we are in the same boat metaphorically speaking and always have a lot to say. I am the "mother" of the group, the oldest at 50, and the others are in the late 30s and early 40s, some married, some with kids, some single. We were visited by a reflexology practitioner who gave us a 30 minute overview and then did some hands-on practicum on our feet.
I'm not sure I buy in to the philosophy, and this particular reflexologist struck me as fairly dogmatic in her belief that reflexology cures all. It's certainly not a cure for cancer. But she did provide some good tips, such as how to apply pressure to the palm of the hand with the opposite elbow to address nausea. I would have appreciated more tips and less lecture.
Thursday was even quieter. We did some marketing and I had a long nap in the afternoon. I did however make dinner for the synagogue's development team. We find we are most productive over food and wine. I made oven-roasted salmon with lemon and rosemary; ramen-cabbage salad; lemonade. We had freshly baked bread with hummus or butter. For dessert (no good meal is complete without dessert!) I baked shortcakes and topped them with strawberries and raspberries from our garden and whipped cream. Indeed we accomplished a lot at this meeting!
I plan to take it easy as I adjust to this first Doxil treatment, so don't worry if I post infrequently for a while.
Wednesday began with coffee with a friend. I am so grateful to my friends who call, send email, and persist in trying to reach me. Even if I don't feel like talking, I want you to know that I love getting your messages.
In the afternoon I went to my support group of young women with metastatic breast cancer. This group meets monthly, has no facilitator, but we are in the same boat metaphorically speaking and always have a lot to say. I am the "mother" of the group, the oldest at 50, and the others are in the late 30s and early 40s, some married, some with kids, some single. We were visited by a reflexology practitioner who gave us a 30 minute overview and then did some hands-on practicum on our feet.
I'm not sure I buy in to the philosophy, and this particular reflexologist struck me as fairly dogmatic in her belief that reflexology cures all. It's certainly not a cure for cancer. But she did provide some good tips, such as how to apply pressure to the palm of the hand with the opposite elbow to address nausea. I would have appreciated more tips and less lecture.
Thursday was even quieter. We did some marketing and I had a long nap in the afternoon. I did however make dinner for the synagogue's development team. We find we are most productive over food and wine. I made oven-roasted salmon with lemon and rosemary; ramen-cabbage salad; lemonade. We had freshly baked bread with hummus or butter. For dessert (no good meal is complete without dessert!) I baked shortcakes and topped them with strawberries and raspberries from our garden and whipped cream. Indeed we accomplished a lot at this meeting!
I plan to take it easy as I adjust to this first Doxil treatment, so don't worry if I post infrequently for a while.
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