October 10, 2006
MRI results
My MRI was postponed from Tuesday of last week to Friday due to managed care silliness. Got the results today and it did not reveal anything new, so my back pain may be muscular. My oncologist is referring me to physical therapy. In the meantime, better living through chemistry, taken as needed for pain!
October 01, 2006
Dreaming of cancer
Last night I had my cancer dream again.
I am in a house that's full of noisy people and I keep trying to get them to leave. They refuse and make more noise than before, moving from room to room. I become extremely frustrated with the whole situation, lose my temper and begin shouting "You have to leave! I insist!"
I've had this dream several times. The house is my body; the rowdy, unruly guests are my metastases. And the rooms they more around in are my 23 site of bony mets.
I've said for the past four years that I will give cancer space in my body as long as it behaves itself and is a quiet tenant. The dream tells me that I am worried it's not quiet any more.
The back pain I've had for the past two weeks must be giving me more stress than I am aware of. I have an MRI on Tuesday to see what's up, if anything.
I am in a house that's full of noisy people and I keep trying to get them to leave. They refuse and make more noise than before, moving from room to room. I become extremely frustrated with the whole situation, lose my temper and begin shouting "You have to leave! I insist!"
I've had this dream several times. The house is my body; the rowdy, unruly guests are my metastases. And the rooms they more around in are my 23 site of bony mets.
I've said for the past four years that I will give cancer space in my body as long as it behaves itself and is a quiet tenant. The dream tells me that I am worried it's not quiet any more.
The back pain I've had for the past two weeks must be giving me more stress than I am aware of. I have an MRI on Tuesday to see what's up, if anything.
September 25, 2006
Happy new year to us!
This weekend we celebrated Rosh Hashanah, the new Jewish year of 5767. It was a rollicking start to the new year: the weather was warm and sunny; services were tuneful and ended at a reasonable time; and best of all, the food and shmoozing with family and friends was without parallel.
Rik and I hosted 11 people (and 2 dogs) on Friday night. Oy, the cooking! Gefilte fish, chopped liver, honey cake, challah. It was a feast for the Jewish soul.
On Sunday after lunch we walked down to the beach at West Seattle to throw our sins into the water in the tashlich ceremony. This year because of the weekend date and the warm weather, we kind of stood out from the sunbathers and kids playing in the water: a bunch of Jews dressed in our new year’s best tossing bread crumbs into the waves. Still, it’s a wonderful tradition to think of cleansing yourself of things from the old year that you don’t want for the new year.
Since 1999 I have made it a point every year to cast away cancer. It still keeps coming back, but as long as it’s manageable, I guess I can cope. But I still try to get rid of it every year.
Speaking of cancer, a friend has started a blog, The Assertive Cancer Patient. Jeanne and I met through one of her articles in the Seattle Weekly about living with mets. I got in touch to congratulate her on telling my story too, we met to walk our dogs and chat, and have been good friends since. That was in 2004, and we are both ever so pleased to still be around to walk the dogs, talk, and lean on each other. We even went to Japan together! You’ll enjoy reading Jeanne’s posts; she practically defines the maxim “Feisty patients live longer.”
I wish us all a year of peace, good health, and joy in life.
Rik and I hosted 11 people (and 2 dogs) on Friday night. Oy, the cooking! Gefilte fish, chopped liver, honey cake, challah. It was a feast for the Jewish soul.
On Sunday after lunch we walked down to the beach at West Seattle to throw our sins into the water in the tashlich ceremony. This year because of the weekend date and the warm weather, we kind of stood out from the sunbathers and kids playing in the water: a bunch of Jews dressed in our new year’s best tossing bread crumbs into the waves. Still, it’s a wonderful tradition to think of cleansing yourself of things from the old year that you don’t want for the new year.
Since 1999 I have made it a point every year to cast away cancer. It still keeps coming back, but as long as it’s manageable, I guess I can cope. But I still try to get rid of it every year.
Speaking of cancer, a friend has started a blog, The Assertive Cancer Patient. Jeanne and I met through one of her articles in the Seattle Weekly about living with mets. I got in touch to congratulate her on telling my story too, we met to walk our dogs and chat, and have been good friends since. That was in 2004, and we are both ever so pleased to still be around to walk the dogs, talk, and lean on each other. We even went to Japan together! You’ll enjoy reading Jeanne’s posts; she practically defines the maxim “Feisty patients live longer.”
I wish us all a year of peace, good health, and joy in life.
August 28, 2006
Four year anniversary
On Sunday, August 20, 2006 I celebrated four years of living with advanced breast cancer.
Talk about beating the odds! I have been stable on aromatase inhibitors with occasional bouts of radiation the entire time. NO CHEMO YET! My quality of life has been pretty good too. This seems incredible to me.
Highlights of the past 4 years --
- Broken bones are all healed and I can even dance on stage and sing in a choir.
- Travelled to Paris, Israel, Japan, Toronto and Palm Desert, as well as multiple family visits to NJ and Montreal.
- Got a dog, trained to be a service animal, and drag him everywhere.
- Bought our first house and just put in a new counter top, sink and faucet in the kitchen.
In retrospect, I have been very lucky in that my bone mets have responded well to treatment.
But --
- Mets cheated us completely out of children.
- Cancer forced me to retire from my career as a fundraiser at age 42.
- I went into full menopause at that ridiculously early age and quality of life suffers as a result.
Today I am alert, able and active. This isn't the life I thought I'd have, but it's the one I got and I intend to live it!
Talk about beating the odds! I have been stable on aromatase inhibitors with occasional bouts of radiation the entire time. NO CHEMO YET! My quality of life has been pretty good too. This seems incredible to me.
Highlights of the past 4 years --
- Broken bones are all healed and I can even dance on stage and sing in a choir.
- Travelled to Paris, Israel, Japan, Toronto and Palm Desert, as well as multiple family visits to NJ and Montreal.
- Got a dog, trained to be a service animal, and drag him everywhere.
- Bought our first house and just put in a new counter top, sink and faucet in the kitchen.
In retrospect, I have been very lucky in that my bone mets have responded well to treatment.
But --
- Mets cheated us completely out of children.
- Cancer forced me to retire from my career as a fundraiser at age 42.
- I went into full menopause at that ridiculously early age and quality of life suffers as a result.
Today I am alert, able and active. This isn't the life I thought I'd have, but it's the one I got and I intend to live it!
Back on line
Had some trouble with the blogger.com log in but now seem to be back on line. Computers!
We had a lovely weekend with my family in NJ. It was nonstop running to doctors, eating out, visiting with family, etc. Everything is made more complicated by the fact that my dad uses a walker, and getting to and fro can be challenging. We managed to squeeze in a movie and that was a real treat, especially for my folks.
You would not believe how people don't seem to see a man using a walker in a crowded place! Thankfully my sister did a great job of "spotting." We were all so keyed up afterwards that we had to eat soft serve ice cream, locally known as custard. Yummy.
It was a good visit all around and we are glad to have gone, glad to be home.
We had a lovely weekend with my family in NJ. It was nonstop running to doctors, eating out, visiting with family, etc. Everything is made more complicated by the fact that my dad uses a walker, and getting to and fro can be challenging. We managed to squeeze in a movie and that was a real treat, especially for my folks.
You would not believe how people don't seem to see a man using a walker in a crowded place! Thankfully my sister did a great job of "spotting." We were all so keyed up afterwards that we had to eat soft serve ice cream, locally known as custard. Yummy.
It was a good visit all around and we are glad to have gone, glad to be home.
August 09, 2006
Quick and dirty update
Haven't posted since July because, well, life got in the way. So here's the quick and dirty --
Finished the dental work (finally!)
Weeded the garden, over and over again. Just a few green tomatoes on the vine.
Took on two more volunteer projects: the installation of our synagogue's new rabbi and a Seattle yoga event for people with cancer.
Saw friends perform in Gilbert & Sullivan's "The Pirates of Penzance" and repressed the urge to sing along
Had a bunch of kitchen work done (pull out trays for pots and pans, thanks to Peter!; new countertop, faucet & sink; new refrigerator)
Ordered fabulous tiles from Jerusalem Pottery in Israel, which arrived in 5 days despite the situation there
Had my first zometa treatment at my doctor's office instead of the hospital where I have been treated since 1999 (long story, more later)
Went to another funeral of a friend from my days in the AIDS world
Spent 4 days at the beach, which next year will grow to 5 days. Good friends went with us and our dogs loved running in the sand and surf.
And of course, spent a few days glued to the tube when a mad gunman opened fire at the Jewish Federation of Greater Seattle, murdering one woman and injuring four more. For details read the JT News.
It's been a long month!
We go back to New Jersey next week to see my folks. Dad has had several falls and his recovery has been set back. Rik is beginning to think about the new school year beginning August 28th.
More soon, I hope --
Jill
Finished the dental work (finally!)
Weeded the garden, over and over again. Just a few green tomatoes on the vine.
Took on two more volunteer projects: the installation of our synagogue's new rabbi and a Seattle yoga event for people with cancer.
Saw friends perform in Gilbert & Sullivan's "The Pirates of Penzance" and repressed the urge to sing along
Had a bunch of kitchen work done (pull out trays for pots and pans, thanks to Peter!; new countertop, faucet & sink; new refrigerator)
Ordered fabulous tiles from Jerusalem Pottery in Israel, which arrived in 5 days despite the situation there
Had my first zometa treatment at my doctor's office instead of the hospital where I have been treated since 1999 (long story, more later)
Went to another funeral of a friend from my days in the AIDS world
Spent 4 days at the beach, which next year will grow to 5 days. Good friends went with us and our dogs loved running in the sand and surf.
And of course, spent a few days glued to the tube when a mad gunman opened fire at the Jewish Federation of Greater Seattle, murdering one woman and injuring four more. For details read the JT News.
It's been a long month!
We go back to New Jersey next week to see my folks. Dad has had several falls and his recovery has been set back. Rik is beginning to think about the new school year beginning August 28th.
More soon, I hope --
Jill
July 11, 2006
A really busy weekend
I had an incredibly stressful and busy weekend.
On Friday I had the penultimate dental procedure -- temporary crowns and bridge for the teeth pulled in November. Felt well enough afterwards to have dinner at a friend's house. I get the permanent stuff on 7/22.
On Saturday morning went to a bat mitzvah of a friend's daughter.
In the afternoon I went to the Healing Journeys conference, where I saw the most amazing performance art piece called Jonna's Body Please Hold. About 1 hour long, it details Jonna's 3 bouts with 3 different kinds of cancer, starting at age 20 or so. She was hysterically funny and moving as well, had the entire audience in the palm of her hand.
On Saturday night Rik and I went to the bat mitzvah party, where I drank a martini and danced up a storm. Also ate too much, but boy was it good! Green salad with blue cheese followed by salmon with mushroom risotto and asparagus, with creme brulee for dessert. (I raided the kids' ice cream bar, since the brulee was not chocolate.)
On Sunday morning I went to a synagogue board retreat, then to the funeral of my friend Dena, who died from complications associated with gall bladder surgery and her mets. She was 41, left her husband and a 6 year old son.
On Monday I was too tired to move.
Oy.
On Friday I had the penultimate dental procedure -- temporary crowns and bridge for the teeth pulled in November. Felt well enough afterwards to have dinner at a friend's house. I get the permanent stuff on 7/22.
On Saturday morning went to a bat mitzvah of a friend's daughter.
In the afternoon I went to the Healing Journeys conference, where I saw the most amazing performance art piece called Jonna's Body Please Hold. About 1 hour long, it details Jonna's 3 bouts with 3 different kinds of cancer, starting at age 20 or so. She was hysterically funny and moving as well, had the entire audience in the palm of her hand.
On Saturday night Rik and I went to the bat mitzvah party, where I drank a martini and danced up a storm. Also ate too much, but boy was it good! Green salad with blue cheese followed by salmon with mushroom risotto and asparagus, with creme brulee for dessert. (I raided the kids' ice cream bar, since the brulee was not chocolate.)
On Sunday morning I went to a synagogue board retreat, then to the funeral of my friend Dena, who died from complications associated with gall bladder surgery and her mets. She was 41, left her husband and a 6 year old son.
On Monday I was too tired to move.
Oy.
July 02, 2006
More cancer deaths
Another friend is dying from breast cancer. She had gall bladder surgery 10 days ago, they found 50% of her liver involved with metastases, and she did not bounce back from the surgery as expected. I went to see her in hospice tonight to say goodbye. She'll leave a husband and 6 year old son. She's not even 40 years old.
The other Jill died about a month ago. She left a husband and 3 year old daughter. Also not 40.
Oy, this disease sucks!
The other Jill died about a month ago. She left a husband and 3 year old daughter. Also not 40.
Oy, this disease sucks!
June 18, 2006
Komen Race for the Cure
Yesterday I joined the Puget Sound Komen Race for the Cure (along with 15,000 others). My wonderful sponsors helped me raise $1385 towards the anticipated goal of $1.5 million.
What a walk! The energy of such a large crowd is tangible. Upon arriving, we turned in my sponsorship checks, got our t-shirts and proceeded to the stadium floor. At least 25 corporate sponsors had set up tents to sample their products. In a crowd of mostly women, this meant an opportunity to get tchatchkes galore. Magnets, key chains, mini first aid kits, cereal, plastic cups, a cool scarf – you can see the rest in the photo. And of course everything is in shades of pink.
The walk itself was somewhat uneventful. Two years ago I did the 5K walk and was too pooped afterwards to enjoy the survivors’ parade. Last year Mom went with me and we hung out at the stadium drinking coffee. But this year Shira, Kathy and I did the 1-mile walk, and in the words of Goldilocks, “It was just right!” We chatted nonstop and felt as though we had strolled around the block. Afterwards we went back to the stadium for coffee, a second breakfast and some more sampling.
I participated in the survivors’ parade in the 6-10 year range. Too bad Komen didn’t offer a special section for women living with metastatic disease. I found I really missed the “other Jill.” We had walked together last year and she gave Mom and I a ride home after the walk. Jill died just a few weeks ago, and so I walked to honor her memory and that of my paternal grandmother, who also died from metastatic breast cancer. Jill left a husband and small daughter as well as a large extended family.
I did find several friends in the survivors’ parade and we exchanged hugs and greetings on the field, danced to the Gloria Gaynor recording of “I Will Survive,” and generally celebrated the fact that we are still here.
June 10, 2006
Back from NJ
We had a quick but jammed-full trip back east last weekend.
After taking a flight at the crack of dawn (4 AM wake up for 6 AM departure!), my sister picked us up at the Philadelphia airport. We spent some time with her, had a snack, and then went to the rehab center to visit with my father. He has lost quite a bit of weight, and of course is bald from the chemotherapy, but his color was good and he was more than willing to go out for dinner to a Chinese restaurant nearby.
We stayed every night at my parents’ home, and Rik kindly offered to do all the driving so that my mom could have a break. I think that was the night of the national spelling bee, which was televised for the first time on a network. There were 4 words of Hebrew or Yiddish etymology!
On Friday Rik and I met my sister at her synagogue, where she has just been elected president of the congregation. It was Shavu’ot, and the temple had 52 teenagers in the confirmation class. The service allowed each kid to have a speaking part, so it was a bit more complicated than usual. Of course there was a lovely luncheon afterwards, complete with bagels and white fish salad and cheesecake.
Then we went to the rehab center and visited with my dad. (Do you detect a pattern to our visit?) We were able to observe his physical therapy session and talk with the therapist about Dad’s progress. Then back to Susan’s house for dinner and off to see my niece in her tap dance recital. Of course we had to sit through 20 other groups of kids before getting to see Dana, because her class was last.
On Saturday we spent the early part of the day at rehab, then brought my dad to my sister’s house for my nephew’s high school graduation party. My cousins came down from north Jersey and we had a family reunion, even managed to take a photo together with everyone.
Saturday night Susan had her tap dance recital (like mother, like daughter!) but the rest of us stayed home to finish cleaning up after the party.
Sunday was again a visit with my dad at rehab, delicious brunch my sister and brother-in-law brought in, including black and white cookies, a real New York treat! By the time we got on the airplane to come home, Rik and I were both pooped. And he had to get up the next morning to teach.
After taking a flight at the crack of dawn (4 AM wake up for 6 AM departure!), my sister picked us up at the Philadelphia airport. We spent some time with her, had a snack, and then went to the rehab center to visit with my father. He has lost quite a bit of weight, and of course is bald from the chemotherapy, but his color was good and he was more than willing to go out for dinner to a Chinese restaurant nearby.
We stayed every night at my parents’ home, and Rik kindly offered to do all the driving so that my mom could have a break. I think that was the night of the national spelling bee, which was televised for the first time on a network. There were 4 words of Hebrew or Yiddish etymology!
On Friday Rik and I met my sister at her synagogue, where she has just been elected president of the congregation. It was Shavu’ot, and the temple had 52 teenagers in the confirmation class. The service allowed each kid to have a speaking part, so it was a bit more complicated than usual. Of course there was a lovely luncheon afterwards, complete with bagels and white fish salad and cheesecake.
Then we went to the rehab center and visited with my dad. (Do you detect a pattern to our visit?) We were able to observe his physical therapy session and talk with the therapist about Dad’s progress. Then back to Susan’s house for dinner and off to see my niece in her tap dance recital. Of course we had to sit through 20 other groups of kids before getting to see Dana, because her class was last.
On Saturday we spent the early part of the day at rehab, then brought my dad to my sister’s house for my nephew’s high school graduation party. My cousins came down from north Jersey and we had a family reunion, even managed to take a photo together with everyone.
Saturday night Susan had her tap dance recital (like mother, like daughter!) but the rest of us stayed home to finish cleaning up after the party.
Sunday was again a visit with my dad at rehab, delicious brunch my sister and brother-in-law brought in, including black and white cookies, a real New York treat! By the time we got on the airplane to come home, Rik and I were both pooped. And he had to get up the next morning to teach.
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