A week or so ago, I did a live interview for Mutual of Omaha. They run public service-type announcements on television featuring regular people talking about their "AHA Moment."
MofO seems to want their interviewees to articulate something amazing, challenging, or out of the ordinary that somehow affected our lives in a big way. The employees travel around the USA seeking speakers and also interviewing passers-by. There is one person to interview both random folks and those who are prepared; one person to run the camera; one person as a greeter; and the driver of the van.
I wrote earlier that Gilda's Club Seattle had invited their members to speak, and I said yes. It's a good thing too, because the other person who agreed woke up feeling unwell and Anna Gottlieb, the founder and executive director of GCS, rushed over to the Seattle Center to tell her AHA Moment about deciding to start a Gilda's Club here.
You can view my story here and Anna's here. Remember to turn up the volume!
If you like my little video (I got on my personal hobbyhorse about the government's lack of funding for advanced cancers), please feel free to share it with others.
To paraphrase from Anna, you too can pursue a dream against all odds, and make your dream come true.
Showing posts with label quality of life. Show all posts
Showing posts with label quality of life. Show all posts
August 24, 2015
August 17, 2015
Trip east
Rik and I went on separate journeys east recently. He made a presentation and received an award at a national geography teachers' conference in the other Washington (and he already took the award to school, so I can't share a photo with you). I went to see my mother, sister and brother-in-law and spent time at the New Jersey shore with them.
Here are highlights from my trip:
Here are highlights from my trip:
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| The board game Monopoly was based on the Atlantic City boardwalk. |
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| By the sea, by the sea, by the beautiful sea... |
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| When you're part of our family, you get TAN! |
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| Oh those Jersey tomatoes! |
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| Sis, me, Mom in a terrible selfie |
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| View from the banana whip place |
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| Walking on the beach with my sister |
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| I'm on Ventnor beach! |
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| Canadian cherries for Rik
And to be sure I enjoyed every moment, I ate frozen custard daily! This Jersey delight is like soft-serve ice cream but SO MUCH MORE DELICIOUS.
Day 1: Daddy O's chocolate/vanilla swirl
Day 2: Rita's coffee and chocolate (shared between Mom and I)
Day 3: That place on the pier for frozen banana whip
Day 4: Sunny Daze chocolate/vanilla swirl with chocolate dipped coating
Day 5: Royale Crown (Hammonton) fresh peach custard with chocolate dipped coating -- THE WINNER!
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May 03, 2015
Major Taxotere side effects
On Friday the major Taxotere side effects hit me hard. I would have chalked it up to participating in the Gilda's Club fashion show and luncheon, since invariably something goes wrong for me that day, but the discomfort continues all weekend.
I had offered to speak in a short film about Gilda Radner and the impact her life continues to have 25 years after her death. This brought me to the Westin at (for me) they very early hour of 10 AM, dressed to the nines and prepared with memories and a quote from Gilda. The filmmaker asked me a few general questions, I shared my quote at her request, and she seemed pleased with my short interview.
The luncheon featured a photo booth where a (volunteer?) photographer took pictures of people in front of a cororate-sponsored backdrop. I got in line since I had dressed so well and here is the photo he took. (I made a copy with my iPhone.)
Back to Taxotere side effects.
FRIDAY
I went from the Westin straight to my oncologist's office, hobbling on both feet. Dr G and Nurse Jacque looked at me and said "hand-foot syndrome." Now why didn't I recognize that? Dr G told me to go home and start the henna again, since I believed it helped me last time this happened. He also prescribed a short, tapering course of steroids to reduce the swelling in my hands. For the pain in my mouth (mucositis? stomatitis? mouth sores, for the laypeople among us) he wrote a scrip for 25 mcg Fentanyl patches. The patch form delivers a steady dose of pain relief for 72 hours. He also gave me an Rx for more hydrocodone to relieve the break-through pain.
Next I called my naturopath for a recommendation on more ways to treat the mouth sores. Dr Bufi suggested gargling with baking soda mixed in water but not too strong. I should also have asked one of these docs for some Magic Mouthwash, but I could barely walk by then and wasn't about to go to yet a third (compounding) pharmacy.
At home I mixed up some henna, put on my pajamas, and slathered my feet with it. Even the cool sensation helped. Now my feet and hands are bright orange but the henna does seem to help.
My friend H came over and walked the dogs, helped me change the bed linens, and cooked us a lovely Shabbat dinner of Vietnamese spring rolls with fresh vegetables and fried tofu and homemade peanut sauce. After dinner she taught me how to get started on the iPad a friend gave me. We spent a lovely evening together and I was in bed by 10 PM.
SATURDAY
I woke up at the crack of dawn to feed the dogs. At least they bear with my stiff movements and are happy to go back to sleep with me after they eat. They're also willing to poop outdoors and saved me the discomfort of trying to walk them.
I started the steroids as instructed before breakfast and stayed in my jammies most of the day but at some point I couldn't stand myself. I took a shower and actually dressed and sat outside in the sunshine. Then I took each dog into the shower for a quick shampoo which they desperately needed. I Skyped with Rik's family to show off my clean, wet doggies, spoke with my mother and felt much improved by this point. However, I am still popping hydrocodone every 3-4 hours for breakthrough pain in my mouth and gargling with diluted baking soda every hour. It was hard to get a forkful of food into my mouth at dinnertime.
The rest of the day passed reading a new book by Michel Faber (not quite as good as I'd hoped for), eating leftover fesenjan with rice for dinner. and watching the second half of The Music Man. Robert Preston! I would have fallen in love with him to if he'd used the "think system" on me instead of Shirley Jones. And little Ronny Howard was only eight when he made this movie. Such talent evident at such a young age!
SUNDAY
I slept off and on (remember, taking steroids?), woke up early again with the dogs, fed 'em and went back to bed. Around 8 AM I got up, ate some yogurt, drank a mocha, and reapplied some henna to my left hand. Still haven't showered or dressed or walked the dogs but I see some of that in my future. Plus lunch out with a friend.
It's time to stop blogging and move on with my day. I do want to get out to see my friend. The sun is shining and I refuse to let cancer side effects make me a prisoner in my own home. But on Monday I'm going to have a serious talk with Dr G about how this is not the way to maintain quality of life.
And that Gilda quote I chose?
I had offered to speak in a short film about Gilda Radner and the impact her life continues to have 25 years after her death. This brought me to the Westin at (for me) they very early hour of 10 AM, dressed to the nines and prepared with memories and a quote from Gilda. The filmmaker asked me a few general questions, I shared my quote at her request, and she seemed pleased with my short interview.
The luncheon featured a photo booth where a (volunteer?) photographer took pictures of people in front of a cororate-sponsored backdrop. I got in line since I had dressed so well and here is the photo he took. (I made a copy with my iPhone.)
 |
| Karan Dannenberg, who dressed me for my first Gila's Club fashion show (which I never attended, due to a hospital stay), recognized me, as she always does, immediately said "Nicole Miller," (the dress's designer), and chatted me up for a few minutes. The shawl is courtesy my mother. |
Back to Taxotere side effects.
FRIDAY
I went from the Westin straight to my oncologist's office, hobbling on both feet. Dr G and Nurse Jacque looked at me and said "hand-foot syndrome." Now why didn't I recognize that? Dr G told me to go home and start the henna again, since I believed it helped me last time this happened. He also prescribed a short, tapering course of steroids to reduce the swelling in my hands. For the pain in my mouth (mucositis? stomatitis? mouth sores, for the laypeople among us) he wrote a scrip for 25 mcg Fentanyl patches. The patch form delivers a steady dose of pain relief for 72 hours. He also gave me an Rx for more hydrocodone to relieve the break-through pain.
Next I called my naturopath for a recommendation on more ways to treat the mouth sores. Dr Bufi suggested gargling with baking soda mixed in water but not too strong. I should also have asked one of these docs for some Magic Mouthwash, but I could barely walk by then and wasn't about to go to yet a third (compounding) pharmacy.
At home I mixed up some henna, put on my pajamas, and slathered my feet with it. Even the cool sensation helped. Now my feet and hands are bright orange but the henna does seem to help.
My friend H came over and walked the dogs, helped me change the bed linens, and cooked us a lovely Shabbat dinner of Vietnamese spring rolls with fresh vegetables and fried tofu and homemade peanut sauce. After dinner she taught me how to get started on the iPad a friend gave me. We spent a lovely evening together and I was in bed by 10 PM.
SATURDAY
I woke up at the crack of dawn to feed the dogs. At least they bear with my stiff movements and are happy to go back to sleep with me after they eat. They're also willing to poop outdoors and saved me the discomfort of trying to walk them.
I started the steroids as instructed before breakfast and stayed in my jammies most of the day but at some point I couldn't stand myself. I took a shower and actually dressed and sat outside in the sunshine. Then I took each dog into the shower for a quick shampoo which they desperately needed. I Skyped with Rik's family to show off my clean, wet doggies, spoke with my mother and felt much improved by this point. However, I am still popping hydrocodone every 3-4 hours for breakthrough pain in my mouth and gargling with diluted baking soda every hour. It was hard to get a forkful of food into my mouth at dinnertime.
The rest of the day passed reading a new book by Michel Faber (not quite as good as I'd hoped for), eating leftover fesenjan with rice for dinner. and watching the second half of The Music Man. Robert Preston! I would have fallen in love with him to if he'd used the "think system" on me instead of Shirley Jones. And little Ronny Howard was only eight when he made this movie. Such talent evident at such a young age!
SUNDAY
I slept off and on (remember, taking steroids?), woke up early again with the dogs, fed 'em and went back to bed. Around 8 AM I got up, ate some yogurt, drank a mocha, and reapplied some henna to my left hand. Still haven't showered or dressed or walked the dogs but I see some of that in my future. Plus lunch out with a friend.
It's time to stop blogging and move on with my day. I do want to get out to see my friend. The sun is shining and I refuse to let cancer side effects make me a prisoner in my own home. But on Monday I'm going to have a serious talk with Dr G about how this is not the way to maintain quality of life.
And that Gilda quote I chose?
"Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity."
November 20, 2012
The rest of the birthday celebration
On Friday night we enjoyed Shabbat dinner with friends. Their young daughter made me a card and a small paper lantern "lit" with carnation flower. It was a sweet way to celebrate.
Saturday morning saw me in synagogue, feeling well enough to lead the musaf service as planned. There's something very powerful and satisfying about standing in front of the congregation, with my back to them. I can't see them, but I can hear their voices lifted in song along with me. Leading the congregation in prayer has got to be my favorite synagogue activity.
That night our inner circle of friends got together at one home for a potluck dinner and birthday party. We noshed on nuts, cheeses and crackers, focaccia, and a bottle of champagne. Then we went to the table for Moroccan vegetable stew with quinoa, broccoli and leek quiches, green salad, more talking and more wine.
Our friends from Vancouver were in Everett for a kid thing and drove to Seattle in order to see us. They arrived in time for dessert. I had picked up a yummy selection from Whole Foods including mini cupcakes and tarts in chocolate, vanilla, lemon, key lime and salted caramel; a couple of eclairs; a fresh fruit tart and a small apple pie. In addition we had Graeter's chocolate-chocolate chip ice cream, Fran's dark chocolate sauce, more mixed nuts, pomegranate seeds both fresh and covered in chocolate, and chocolate covered ginger. Of my four personal food groups (champagne, chips, chocolate and whipped cream), only the whipped cream was in short-ish supply on the eclairs and the mini tarts.
Sunday's festivities featured a clothing exchange with about ten friends. We had all picked from our closets the items we no longer wear, or don't like, or that don't fit properly any more. Everyone contributed, and everyone went home with something. You should have seen R in a slinky one-shoulder black velvet gown. Just about everything looked good on N. S was particularly helpful in saying if something really flattered or wasn't worth keeping. Even a couple of teenaged daughters ended up with stuff they loved! I think I ended up with the best bargain: a grey cashmere dress with short sleeves by designer TSE. It looks kind of like this item from the TSE spring 2010 collection. The remaining clothing from our exchange will go to another clothing exchange, and the final bits will go to the Lifelong AIDS Alliance thrift store.
Now the birthday celebrations have ended and it's time to pick up some projects I've avoided lately, prepare for Wednesday's chemo cycle three, and get ready for Thanksgiving!
Saturday morning saw me in synagogue, feeling well enough to lead the musaf service as planned. There's something very powerful and satisfying about standing in front of the congregation, with my back to them. I can't see them, but I can hear their voices lifted in song along with me. Leading the congregation in prayer has got to be my favorite synagogue activity.
That night our inner circle of friends got together at one home for a potluck dinner and birthday party. We noshed on nuts, cheeses and crackers, focaccia, and a bottle of champagne. Then we went to the table for Moroccan vegetable stew with quinoa, broccoli and leek quiches, green salad, more talking and more wine.
Our friends from Vancouver were in Everett for a kid thing and drove to Seattle in order to see us. They arrived in time for dessert. I had picked up a yummy selection from Whole Foods including mini cupcakes and tarts in chocolate, vanilla, lemon, key lime and salted caramel; a couple of eclairs; a fresh fruit tart and a small apple pie. In addition we had Graeter's chocolate-chocolate chip ice cream, Fran's dark chocolate sauce, more mixed nuts, pomegranate seeds both fresh and covered in chocolate, and chocolate covered ginger. Of my four personal food groups (champagne, chips, chocolate and whipped cream), only the whipped cream was in short-ish supply on the eclairs and the mini tarts.
Sunday's festivities featured a clothing exchange with about ten friends. We had all picked from our closets the items we no longer wear, or don't like, or that don't fit properly any more. Everyone contributed, and everyone went home with something. You should have seen R in a slinky one-shoulder black velvet gown. Just about everything looked good on N. S was particularly helpful in saying if something really flattered or wasn't worth keeping. Even a couple of teenaged daughters ended up with stuff they loved! I think I ended up with the best bargain: a grey cashmere dress with short sleeves by designer TSE. It looks kind of like this item from the TSE spring 2010 collection. The remaining clothing from our exchange will go to another clothing exchange, and the final bits will go to the Lifelong AIDS Alliance thrift store.Now the birthday celebrations have ended and it's time to pick up some projects I've avoided lately, prepare for Wednesday's chemo cycle three, and get ready for Thanksgiving!
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!
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