I've had nine treatments now, and I am beginning to feel a bit fatigued, but not nearly as bad as it was with the second round of chemo. It's fast, and the technicians are wonderful. I go in the morning before work. I saw Dr. Kaplan this past week for the first time in about 5 weeks, and I told him I quit taking the Lapatinib, and he was okay with it. It's not life and death that I take it. It is an awful pill, and I just don't want to feel chemo-ish again. The radiation and Herceptin are good enough insurance that I don't get the cancer back. It was so good to see him. I was so used to seeing him every single week. He's still my main doc, and I feel safe with him, as well as hopeful.
Christmas with Taylor was very nice; not too much drama, thank God. I love him so much. I worry about him every single day and probably always will. No matter how old they get, you can't stop being mom. We had a lovely dinner out Christmas Eve, then I cooked a free-range turkey on Christmas. I didn't gain any weight over the holidays or the trip, and I hope to lose 10 pounds sooner than later. One of many goals for 2012, which I pray to the good Lord is a better year for me. I've had enough, right?
I had a very weird experience last night, which still has me upset. Well, actually the weirdness started when I had a terrible nightmare Thursday night, well actually Friday morning just before I woke up. I dreamt I'd been abducted and raped by these horrible people who were very dark beings. I was all cut up and bleeding. It was horrible. I shook it off, went to radiation and to work.
So, after work, I went to a champagne tasting at the nice little wine shop, Bin 41, in West Seattle, which was fine. It was early, so I decided to get something to eat, since I've been eating turkey all week! I went to a very casual yet nice little place called West 5 because they make good fish tacos. It was still happy hour, so it was packed, but there was one space at the bar, so I took it. To my right was this guy, I gathered was named Scott because the bartender knew him by name.
So, he says to me, "why are you so cautious?" I didn't realize I was acting cautious, but this immediately put me on guard. He asked me what my malady was. I looked at him and asked him what made him think I had a malady. He said he sensed it. So I told him I was a recent cancer survivor, still in treatment. Turns out he was a liver cancer survivor. Okay, good. But it got increasingly weird and uncomfortable. Apparently he is a regular there, but they said he's not usually like that....dropping the f-bomb a lot, and telling me that most human beings are expendable, that the world is in an awful place, and I wasn't voting for that fucking Obama was I? The bartender told him to please not discuss politics or religion, which I appreciated. Then he starts in on Roman Catholics, and I told him to stop, as I have good friends who are Catholic. He shut up while I ate, but I was so uncomfortable. Then he starts back in, eventually telling me I would most likely die before him. At that point the manager asked me if I was okay, and I said no. They ran him off finally, and comped my drink. I was totally unnerved, waiting until I was sure he was long gone, and beelining it for my car, locking as soon as I got in. They said he's "a little off" - you think? and that he'd had too much to drink. Nonetheless, that's the first time I've ever felt threatened since I moved here. I came home and fell apart, especially when I drove up to the house and there were two raccoons staring at me. I just looked at them like, fuck off, and they ran. The whole thing was a nightmare. A fitting end to a scary year I guess.
I have no big plans for tonight, just a movie. I want to go skiing half day tomorrow. I haven't gone yet this year for lack of snow and time. I think I'm strong enough. I've been to Pilates six times now with my new teacher, and I feel stronger already. She's fabulous.
Everyone be safe tonight, and stay away from weirdos who tell you that you're going to die! That son-of-a-bitch has no idea who I am.
Saturday, December 31, 2011
Sunday, December 18, 2011
Radiation starts tomorrow
I'm back from Kauai, and hit the ground running. I had to get all caught up on mail, laundry, and get a tree up, which I accomplished yesterday. It's darling; smaller than usual because I just didn't want to fight with a big tree, but it's about four feet, a very full and symmetrical Noble Spruce. I like it.
The trip was too short. Geez, for a small island there's a lot to see! The helicopter tour the first day was money well spent. We got an overview of the entire island, which included the stunning Napali Coast, which you really can't see like that other than from a boat. We had such a good pilot. It was a little windy, but we never bounced around at all. We flew up Waimea Canyon (the Grand Canyon of the Pacific) up the Napali Coast, very close to a volcano crater - everywhere. It was spectacular, and we never would have made it all by car or foot in five days.
I really scored on the condo. It was a Living Social deal; we were supposed to have a two-bedroom, two-bath partial ocean view. Well, it was three-bedrooms, three-baths, corner unit with a wrap-around deck, top floor, full on ocean view. They are really new, and very luxuriously appointed with nice furniture, granite counter tops everywhere, A/C, flat screen TVs in each bedroom and the living room, full laundry, AND we had housekeeping service. My bedroom (I took the master suite) had a bath of my dreams. Huge tub, huge walk-in shower, two separate vanities, walk-in closet, and a safe. I loved it. It's called Koloa Landing at Poipu Beach and it is a Wyndham Resort. They are for sale, too, but holy crap, the two-bedrooms start at $925,000 and the condo dues - brace yourself - are $1,400 a month! Geez, that's more than I pay in rent! But I got this palace for $220 a night and Col and I split it. At least I had five days living in the lap of luxury!
The other high point was my kayak/hike adventure. Because of my weak left side I was worried when I started to paddle, but actually it got better, and I am much stronger now, and feel more mobility coming back. It was 2.5 miles each way, then a mile hike to "Secret Falls." The hike actually was the painful part! The trail was very slippery and muddy from the rains, so I had to tread very carefully. In addition, there were roots everywhere to navigate around. Once we got to the falls, they were spectacular. By the time we hiked back to the kayaks, it was clear my right knee was hurting. It still hurts a little, but I went to Pilates yesterday morning and did some stuff that helped. But, I didn't fall in the mud! However, my shoes and legs were covered in mud. For those who think I never get dirty, you would have been so proud! I was happy I challenged myself and I made it.
So, we ate, drank, shopped, chilled by the pool and went to the beach one day. The weather was sort of on and off, but it was fine. Just to be somewhere else was great. And to be with my dear friend, Colleen. We had great fun the first night with Linell. She made the flight over a real treat, too. She was working first class, but would slip back to coach, bringing us champagne, then mai-tai's! We also got our food free. Thanks Nellie!
Anyway, back to reality; radiation starts tomorrow. I'm sort of nervous, but I know it won't be as bad as chemo. It's just going to be a pain in the ass because I have to go everyday. After that, it will just be the Herceptin every three weeks until September 2012. And of course, reconstruction next summer sometime.
I still worry about the cancer coming back. I guess this is normal. The death of my friend in my support group has me thinking more about death, too. I know I'll die one day, but I'm not ready yet.
In keeping the spirit of moving forward and learning new things, I forgot to mention, I bought a ukulele in Kauai! I've been thinking about this for awhile, and I thought, what better place to get one. I got it at a little place called Kamoa Ukuleles in old Koloa town. The owner designs all of them himself, but the demand has been so great, he's having them made on the mainland now. His mom, Gigi, waited on me, and she was wonderful! They are shipping it, so I don't have it yet, but it's what they call a pineapple shape, made of mahogany. It's a starter uke, not terribly expensive, but I'm so excited! I think I can do this! I learned a few chords just standing there with Gigi. I'm having my nails done tomorrow after work, and they are going to have to be cut shorter for this to work. But it's okay. That is one of my goals for 2012 - learn to play the uke, get well, and a few other gems.
Merry Christmas!
The trip was too short. Geez, for a small island there's a lot to see! The helicopter tour the first day was money well spent. We got an overview of the entire island, which included the stunning Napali Coast, which you really can't see like that other than from a boat. We had such a good pilot. It was a little windy, but we never bounced around at all. We flew up Waimea Canyon (the Grand Canyon of the Pacific) up the Napali Coast, very close to a volcano crater - everywhere. It was spectacular, and we never would have made it all by car or foot in five days.
I really scored on the condo. It was a Living Social deal; we were supposed to have a two-bedroom, two-bath partial ocean view. Well, it was three-bedrooms, three-baths, corner unit with a wrap-around deck, top floor, full on ocean view. They are really new, and very luxuriously appointed with nice furniture, granite counter tops everywhere, A/C, flat screen TVs in each bedroom and the living room, full laundry, AND we had housekeeping service. My bedroom (I took the master suite) had a bath of my dreams. Huge tub, huge walk-in shower, two separate vanities, walk-in closet, and a safe. I loved it. It's called Koloa Landing at Poipu Beach and it is a Wyndham Resort. They are for sale, too, but holy crap, the two-bedrooms start at $925,000 and the condo dues - brace yourself - are $1,400 a month! Geez, that's more than I pay in rent! But I got this palace for $220 a night and Col and I split it. At least I had five days living in the lap of luxury!
The other high point was my kayak/hike adventure. Because of my weak left side I was worried when I started to paddle, but actually it got better, and I am much stronger now, and feel more mobility coming back. It was 2.5 miles each way, then a mile hike to "Secret Falls." The hike actually was the painful part! The trail was very slippery and muddy from the rains, so I had to tread very carefully. In addition, there were roots everywhere to navigate around. Once we got to the falls, they were spectacular. By the time we hiked back to the kayaks, it was clear my right knee was hurting. It still hurts a little, but I went to Pilates yesterday morning and did some stuff that helped. But, I didn't fall in the mud! However, my shoes and legs were covered in mud. For those who think I never get dirty, you would have been so proud! I was happy I challenged myself and I made it.
So, we ate, drank, shopped, chilled by the pool and went to the beach one day. The weather was sort of on and off, but it was fine. Just to be somewhere else was great. And to be with my dear friend, Colleen. We had great fun the first night with Linell. She made the flight over a real treat, too. She was working first class, but would slip back to coach, bringing us champagne, then mai-tai's! We also got our food free. Thanks Nellie!
Anyway, back to reality; radiation starts tomorrow. I'm sort of nervous, but I know it won't be as bad as chemo. It's just going to be a pain in the ass because I have to go everyday. After that, it will just be the Herceptin every three weeks until September 2012. And of course, reconstruction next summer sometime.
I still worry about the cancer coming back. I guess this is normal. The death of my friend in my support group has me thinking more about death, too. I know I'll die one day, but I'm not ready yet.
In keeping the spirit of moving forward and learning new things, I forgot to mention, I bought a ukulele in Kauai! I've been thinking about this for awhile, and I thought, what better place to get one. I got it at a little place called Kamoa Ukuleles in old Koloa town. The owner designs all of them himself, but the demand has been so great, he's having them made on the mainland now. His mom, Gigi, waited on me, and she was wonderful! They are shipping it, so I don't have it yet, but it's what they call a pineapple shape, made of mahogany. It's a starter uke, not terribly expensive, but I'm so excited! I think I can do this! I learned a few chords just standing there with Gigi. I'm having my nails done tomorrow after work, and they are going to have to be cut shorter for this to work. But it's okay. That is one of my goals for 2012 - learn to play the uke, get well, and a few other gems.
Merry Christmas!
Saturday, December 3, 2011
Trying to pace myself
Thanksgiving came and went, and I've been going full tilt at Christmas stuff, but I had to slow it down a bit today because I felt like I was coming down with a cold yesterday. I do feel better. I just got back from the movie "The Descendants," and it is breathtaking. It's sad, and funny. It really got me excited though about Kauai, because part of it was filmed there, and I'll be there in a week! I can't even believe it. It's been so long since I've seen a warm, sunny beach.
I need this break. It's been a rough couple of weeks in a way. Dr. Kaplan put me on Lapatinib, a pill that works in concert with my Herceptin infusions to keep the cancer from coming back. I couldn't take them. I stopped. I see him Wednesday before I have Herceptin, and I am sure he won't be pleased that I quit taking them, but the side effects were too unpleasant. They were making me feel bad about myself again. I start radiation Dec. 19, which will be every damn day until Feb. 1, and if that's not enough "insurance" with the Herceptin, well, I don't know. I just don't like the pills. When I don't feel good, I look in the mirror and hate what I see, and I just can't do that to myself anymore.
Tuesday I received an e-mail with news on one of the members of my support group. It wasn't good. She was in the hospital, and her husband didn't think she'd be coming home as they had her on palliative care. She died Wednesday at 4 p.m. I am still so upset by this. She's 15 years younger than me, with two little kids. She had stage 4 breast cancer, which had metastasized to her liver. They removed the part of her liver that had cancer, and she seemed to be doing okay the last time I saw her. I feel awful because that was over a month ago. I hadn't been making it to group either because of work, or just too tired right after my surgery. But the last time I saw her, she gave me a hug. I am so confused. I don't understand how God could take a young woman with two children and a husband, and not me instead. These are things I don't understand. I will be at group Tuesday night, and I'm sure we'll all cry our eyes out. I already have over her, and those kids. I mean, how do you tell a 3-year-old that mommy's dead?
I soldier on. My Christmas shopping is done, I have my outdoor lights up and some decorations inside. I will put up a small tree when I return from Hawaii. I don't have it in me to put up the big mother. But my Taylor is coming for Christmas, so I will put a tree up of some sort. He's still my baby, and I can't wait to see him. I will only have had one week of radiation by Christmas, so maybe I'll be able to ski with him.
I am getting stronger every day, and we plan to kayak the Wailua River one day in Kauai. I need some upper body movement. I did start back at Pilates, and am easing into it. We've also got a helicopter tour booked, to fly over the whole island, specifically the Napali Coast and the Waimea Canyon. I don't have enough strength yet, or time, to hike to these mothers. But we'll do some shorter hikes.
So, if you're a Facebook friend, too, I'll post photos from Kauai, since I finally stepped into the 21st century and got an iPhone. I'm getting the hang of it; I'm not exactly a tech queen!
And, I promise, to just relax and enjoy warmth, sun, and peace.
I need this break. It's been a rough couple of weeks in a way. Dr. Kaplan put me on Lapatinib, a pill that works in concert with my Herceptin infusions to keep the cancer from coming back. I couldn't take them. I stopped. I see him Wednesday before I have Herceptin, and I am sure he won't be pleased that I quit taking them, but the side effects were too unpleasant. They were making me feel bad about myself again. I start radiation Dec. 19, which will be every damn day until Feb. 1, and if that's not enough "insurance" with the Herceptin, well, I don't know. I just don't like the pills. When I don't feel good, I look in the mirror and hate what I see, and I just can't do that to myself anymore.
Tuesday I received an e-mail with news on one of the members of my support group. It wasn't good. She was in the hospital, and her husband didn't think she'd be coming home as they had her on palliative care. She died Wednesday at 4 p.m. I am still so upset by this. She's 15 years younger than me, with two little kids. She had stage 4 breast cancer, which had metastasized to her liver. They removed the part of her liver that had cancer, and she seemed to be doing okay the last time I saw her. I feel awful because that was over a month ago. I hadn't been making it to group either because of work, or just too tired right after my surgery. But the last time I saw her, she gave me a hug. I am so confused. I don't understand how God could take a young woman with two children and a husband, and not me instead. These are things I don't understand. I will be at group Tuesday night, and I'm sure we'll all cry our eyes out. I already have over her, and those kids. I mean, how do you tell a 3-year-old that mommy's dead?
I soldier on. My Christmas shopping is done, I have my outdoor lights up and some decorations inside. I will put up a small tree when I return from Hawaii. I don't have it in me to put up the big mother. But my Taylor is coming for Christmas, so I will put a tree up of some sort. He's still my baby, and I can't wait to see him. I will only have had one week of radiation by Christmas, so maybe I'll be able to ski with him.
I am getting stronger every day, and we plan to kayak the Wailua River one day in Kauai. I need some upper body movement. I did start back at Pilates, and am easing into it. We've also got a helicopter tour booked, to fly over the whole island, specifically the Napali Coast and the Waimea Canyon. I don't have enough strength yet, or time, to hike to these mothers. But we'll do some shorter hikes.
So, if you're a Facebook friend, too, I'll post photos from Kauai, since I finally stepped into the 21st century and got an iPhone. I'm getting the hang of it; I'm not exactly a tech queen!
And, I promise, to just relax and enjoy warmth, sun, and peace.
Sunday, November 20, 2011
Three weeks until Hawaii!
I can't believe how time is flying! I have been tackling Christmas shopping with a vengeance, because I want it done before I leave on the trip. I can't believe Thursday is Thanksgiving already.
My sister, Cheryle, and her husband, Jerry, are coming down from Alaska for Thanksgiving. They are staying at Jerry's sister's house in Shelton, but we're all getting together at their daughter's home in Olympia for dinner. I'm picking up Jim, in Tacoma, on the way. It's been years since I've had a holiday with Cheryle, so I look forward to it.
I am getting stronger everyday. Tomorrow I have to go back in for a breathing exercise at Swedish, called ABC, to continue planning my radiation. Since it's my left side, of course they don't want my heart zapped, so this method involves a breathing technique that gets your heart farther away from the beams, and they tell me I'm a good candidate for it. I have Herceptin Tuesday, which is no biggie anymore. How far I've come tolerating all of this!
I was supposed to have a massage yesterday, but my massage therapist, Naomi, was sick, and I sure as hell don't want to catch anything. So next weekend, I have a pedicure, waxing and a massage all in preparation for Hawaii!
I also did get the swim form for my swimsuit, and I'm picking up my bathing suit top and one sundress I have with a shelf bra in it today, that Nordstrom sewed pockets into for my forms. No one will know. I'm so grateful.
I also got a wide-brimmed hat with SPF 50 properties so I don't burn my head. I do have a pretty good crop of fuzz now, with no scalp showing, but I don't want to take a chance. Interestingly enough, my hair looks really dark! Lord only knows what it's going to look like in a year or so.
If you follow me on Facebook, too, you will know that my dear friend Erica came to visit last weekend, with her adorable daughter, Quinn, who will be two in March. Oh, we had such a good time, and that baby was so good for my heart. Erica was, too. She gives good hugs, and I've needed that.
Have a wonderful Thanksgiving everyone. I am thankful to be cancer free this Thanksgiving. How about you?
My sister, Cheryle, and her husband, Jerry, are coming down from Alaska for Thanksgiving. They are staying at Jerry's sister's house in Shelton, but we're all getting together at their daughter's home in Olympia for dinner. I'm picking up Jim, in Tacoma, on the way. It's been years since I've had a holiday with Cheryle, so I look forward to it.
I am getting stronger everyday. Tomorrow I have to go back in for a breathing exercise at Swedish, called ABC, to continue planning my radiation. Since it's my left side, of course they don't want my heart zapped, so this method involves a breathing technique that gets your heart farther away from the beams, and they tell me I'm a good candidate for it. I have Herceptin Tuesday, which is no biggie anymore. How far I've come tolerating all of this!
I was supposed to have a massage yesterday, but my massage therapist, Naomi, was sick, and I sure as hell don't want to catch anything. So next weekend, I have a pedicure, waxing and a massage all in preparation for Hawaii!
I also did get the swim form for my swimsuit, and I'm picking up my bathing suit top and one sundress I have with a shelf bra in it today, that Nordstrom sewed pockets into for my forms. No one will know. I'm so grateful.
I also got a wide-brimmed hat with SPF 50 properties so I don't burn my head. I do have a pretty good crop of fuzz now, with no scalp showing, but I don't want to take a chance. Interestingly enough, my hair looks really dark! Lord only knows what it's going to look like in a year or so.
If you follow me on Facebook, too, you will know that my dear friend Erica came to visit last weekend, with her adorable daughter, Quinn, who will be two in March. Oh, we had such a good time, and that baby was so good for my heart. Erica was, too. She gives good hugs, and I've needed that.
Have a wonderful Thanksgiving everyone. I am thankful to be cancer free this Thanksgiving. How about you?
Wednesday, November 9, 2011
The pressure is off
This was a very good day. After having a three-dimensional CT, to determine where the radiation "beams" will be directed at me, I had a wonderful meeting with the head social worker at Swedish about the insurance problem.
I can't believe this. I'm off the hook! She had already spoken to the director of corporate compliance, and the director of the financial counseling department, and they said no way am I to be responsible for the $138,000-plus for chemo; that I'm not obligated to pay any of it!
We had to go through the formality of a letter, and a financial questionnaire, plus a copy of last year's tax return, but I didn't have to disclose any value on my investments.
Based on my earnings from my job, I actually have made so little money due to the reduced hours I've had because of all my time spent having all that fun in the Cancer Center and the hospital, I would be considered a hardship, and it's possible I won't have to pay anything else.
We'll see on that one. But this social worker, Sandy, was an absolute angel. She said she had been on vacation, got back, heard about my case from Dr. Dobie (my shrink) and she was totally ready to take this on!!
So, here's what will happen. Swedish will first go after First Choice, but if they won't pay (I assume after a legal battle) Swedish absorbs it. Swedish is sort of to blame, because they didn't check my insurance benefits to ascertain whether my chemo would be covered once I was in the study, but, still, their attorney said Federal law states they can't deny insurance for research study approved by the National Cancer Institute, which my study was.
At any rate, I'm off the study, and off the hook for the big bucks, and I feel so much better!
It's one thing dealing with the disease and all the trouble that comes with it, and another thing dealing with the possibility of never retiring, or worse yet, ending up living in my car.
More happy news. I was fitted for a form, or prosthetic, yesterday by a lovely, compassionate woman name Shannon at the downtown Nordstrom. My God, they whisk you into a huge dressing room, and bring everything to you. She knew what the hell she was doing, as they are specially trained, and it looks pretty damn good. It's like a soft, gel type thing, and it slides into a special little pocket in the bras. I got two really pretty bras. So, now I can wear my fitted clothes again, and look like a girl!
I told Shannon about Hawaii, and they actually have a water form, so I am going to have them sew a pocket into my swimsuit top and get the water form! Problem solved. She also said they can sew pockets into my sundresses that have shelf bras. Another angel, that girl.
Oh, also, with Nordstrom, they bill insurance for the bras and stuff, because it is a prosthesis. No money came out of my pocket, however the assholes (as I like to call First Choice) might deny the water form.
Also, I'm clear for Lapatinib, which they were hassling me about, too.
I won!
I can't believe this. I'm off the hook! She had already spoken to the director of corporate compliance, and the director of the financial counseling department, and they said no way am I to be responsible for the $138,000-plus for chemo; that I'm not obligated to pay any of it!
We had to go through the formality of a letter, and a financial questionnaire, plus a copy of last year's tax return, but I didn't have to disclose any value on my investments.
Based on my earnings from my job, I actually have made so little money due to the reduced hours I've had because of all my time spent having all that fun in the Cancer Center and the hospital, I would be considered a hardship, and it's possible I won't have to pay anything else.
We'll see on that one. But this social worker, Sandy, was an absolute angel. She said she had been on vacation, got back, heard about my case from Dr. Dobie (my shrink) and she was totally ready to take this on!!
So, here's what will happen. Swedish will first go after First Choice, but if they won't pay (I assume after a legal battle) Swedish absorbs it. Swedish is sort of to blame, because they didn't check my insurance benefits to ascertain whether my chemo would be covered once I was in the study, but, still, their attorney said Federal law states they can't deny insurance for research study approved by the National Cancer Institute, which my study was.
At any rate, I'm off the study, and off the hook for the big bucks, and I feel so much better!
It's one thing dealing with the disease and all the trouble that comes with it, and another thing dealing with the possibility of never retiring, or worse yet, ending up living in my car.
More happy news. I was fitted for a form, or prosthetic, yesterday by a lovely, compassionate woman name Shannon at the downtown Nordstrom. My God, they whisk you into a huge dressing room, and bring everything to you. She knew what the hell she was doing, as they are specially trained, and it looks pretty damn good. It's like a soft, gel type thing, and it slides into a special little pocket in the bras. I got two really pretty bras. So, now I can wear my fitted clothes again, and look like a girl!
I told Shannon about Hawaii, and they actually have a water form, so I am going to have them sew a pocket into my swimsuit top and get the water form! Problem solved. She also said they can sew pockets into my sundresses that have shelf bras. Another angel, that girl.
Oh, also, with Nordstrom, they bill insurance for the bras and stuff, because it is a prosthesis. No money came out of my pocket, however the assholes (as I like to call First Choice) might deny the water form.
Also, I'm clear for Lapatinib, which they were hassling me about, too.
I won!
Sunday, November 6, 2011
Where has time gone?
How can it be November already? Today was a beautiful fall day, with lots of sunshine and beautiful colors, but it's cold! How could I have lived in Alaska 38 years? But I did, and still love it up there; in the summer!
I'm listening to the brand new Florence and the Machine CD, "Ceremonials." God I love her. Her voice is ethereal. This is the second CD from Florence. She is a fabulous Welch red head - and guess what? I'm a quarter Welsh, and I was a redhead (my hair is coming back very dark). That must explain why I so love the royals, and Florence! So, she is performing Dec. 8 at the Wa-Mu theater on a triple bill with singer/songwriter Matt Kearney, then Seattle's own "The Head and the Heart," who are fabulous, then Florence is headlining. And guess who is in row 13, dead center in seat one! ME! YAY!!!
That's just two nights before I leave for my little Hawaii trip. Then I'll get back and it will be Christmas almost. So, that's what I mean.......where does time go?
Today was productive. That extra hour (going off Daylight Savings) is always such a God send. The doctors, of course, keep telling me to take it easy, but it's hard for me as everyone who really knows me, knows. But I was pretty good to myself this weekend.
Good news though; I got that damn drain out of me Friday. I was still putting out more fluid than they wanted me to, but I basically demanded they take it out. It hurt. And it had been in three weeks and two days, and I'd had it with the fucker. I hate artificial crap in my body. I'm stuck with the port for at least another year, so that's bad enough.
One of Dr. Beatty's main nurses, Chris, took it out. It felt weird. She was very nice, but also very stern and sort of a negative Nellie. She wasn't happy with my decision to take it out early, because if my chest cavity started to fill up with goop, I'd have to come in and have Dr. Beatty drain it with a needle, maybe every two days she said. Then, she says, if that doesn't work, they might even have to put in another drain. Meantime, Dr. Beatty is saying, well, none of that might happen.
Well guess what??? I haven't had to call him all weekend. I am not filling up with fluid. I win!! I'm still sore and sort of feel like an elephant is sitting on the left side of my chest, but I'm healing well, and God willing, will be able to be fitted for a prosthetic in a week! Yay again! I even can get a swimsuit for Hawaii with a fake booby!
The downer of the week was having Herceptin Tuesday. The Herceptin isn't the problem. For the first time ever, the oncology nurses were having a hell of time accessing my port. It was horrible. I basically got poked six times with needles; three lidocane shots and three attempts to access the port. I was in tears. It seems my port has moved a little - it's crooked, probably from my chest area being jerked around in surgery. But, that was awful to say the least.
Dr. Beatty is checking my wound again tomorrow, then Wednesday I have a CT to figure out where to aim the radiation.
I had a lovely late brunch today with one of my oldest friends, Linell. She's been so good to me. I've known her since the 7th grade. We went to this newer place in West Seattle called the "Tuscan Tearoom," and OMG, it was fabulous! It's very girly-girl, with white linens, China tea pots and cups, fabric on the walls....you get the picture. We had a pot of incredible Amaretto tea and then we both had Frangelico French Toast. I'm not kidding - died and gone to heaven good.
They do high tea and dinner, too, and they also have wine. I'll be back!! It was killer.
So back to time...I'm already worrying about Christmas. But, I bought three gifts today, and already had a couple from a few weeks ago. So, yes, I feel productive.
Next weekend I will get a much needed baby fix, as my dear friend Erica comes to see me, with her adorable, precious almost-two-year old baby girl, Quinn. I love that baby. I hope she'll warm to me and give me lots of love; I haven't seen her since April, so she may not have a clue who I am. I hope so. I'm proud to say I bought her her first purse, AND her first faux-fur coat!
My own baby is doing fine. He's had to go through a lot of physical tests in order to even get into Firefighter I next semester, but he's doing good. Healthy as a horse, my boy. Wish I was, too, but I'll get back to my old self one day. It's just going to take time.
I'm listening to the brand new Florence and the Machine CD, "Ceremonials." God I love her. Her voice is ethereal. This is the second CD from Florence. She is a fabulous Welch red head - and guess what? I'm a quarter Welsh, and I was a redhead (my hair is coming back very dark). That must explain why I so love the royals, and Florence! So, she is performing Dec. 8 at the Wa-Mu theater on a triple bill with singer/songwriter Matt Kearney, then Seattle's own "The Head and the Heart," who are fabulous, then Florence is headlining. And guess who is in row 13, dead center in seat one! ME! YAY!!!
That's just two nights before I leave for my little Hawaii trip. Then I'll get back and it will be Christmas almost. So, that's what I mean.......where does time go?
Today was productive. That extra hour (going off Daylight Savings) is always such a God send. The doctors, of course, keep telling me to take it easy, but it's hard for me as everyone who really knows me, knows. But I was pretty good to myself this weekend.
Good news though; I got that damn drain out of me Friday. I was still putting out more fluid than they wanted me to, but I basically demanded they take it out. It hurt. And it had been in three weeks and two days, and I'd had it with the fucker. I hate artificial crap in my body. I'm stuck with the port for at least another year, so that's bad enough.
One of Dr. Beatty's main nurses, Chris, took it out. It felt weird. She was very nice, but also very stern and sort of a negative Nellie. She wasn't happy with my decision to take it out early, because if my chest cavity started to fill up with goop, I'd have to come in and have Dr. Beatty drain it with a needle, maybe every two days she said. Then, she says, if that doesn't work, they might even have to put in another drain. Meantime, Dr. Beatty is saying, well, none of that might happen.
Well guess what??? I haven't had to call him all weekend. I am not filling up with fluid. I win!! I'm still sore and sort of feel like an elephant is sitting on the left side of my chest, but I'm healing well, and God willing, will be able to be fitted for a prosthetic in a week! Yay again! I even can get a swimsuit for Hawaii with a fake booby!
The downer of the week was having Herceptin Tuesday. The Herceptin isn't the problem. For the first time ever, the oncology nurses were having a hell of time accessing my port. It was horrible. I basically got poked six times with needles; three lidocane shots and three attempts to access the port. I was in tears. It seems my port has moved a little - it's crooked, probably from my chest area being jerked around in surgery. But, that was awful to say the least.
Dr. Beatty is checking my wound again tomorrow, then Wednesday I have a CT to figure out where to aim the radiation.
I had a lovely late brunch today with one of my oldest friends, Linell. She's been so good to me. I've known her since the 7th grade. We went to this newer place in West Seattle called the "Tuscan Tearoom," and OMG, it was fabulous! It's very girly-girl, with white linens, China tea pots and cups, fabric on the walls....you get the picture. We had a pot of incredible Amaretto tea and then we both had Frangelico French Toast. I'm not kidding - died and gone to heaven good.
They do high tea and dinner, too, and they also have wine. I'll be back!! It was killer.
So back to time...I'm already worrying about Christmas. But, I bought three gifts today, and already had a couple from a few weeks ago. So, yes, I feel productive.
Next weekend I will get a much needed baby fix, as my dear friend Erica comes to see me, with her adorable, precious almost-two-year old baby girl, Quinn. I love that baby. I hope she'll warm to me and give me lots of love; I haven't seen her since April, so she may not have a clue who I am. I hope so. I'm proud to say I bought her her first purse, AND her first faux-fur coat!
My own baby is doing fine. He's had to go through a lot of physical tests in order to even get into Firefighter I next semester, but he's doing good. Healthy as a horse, my boy. Wish I was, too, but I'll get back to my old self one day. It's just going to take time.
Sunday, October 30, 2011
Another week goes by
I'm still hurting from the surgery, but I had a good weekend, and I'm feeling better about myself. The drain continues to be a horrible inconvenience, and the tubing is what really is hurting me.
I had to make a mad dash to Dr. Beatty's on Tuesday, because I was leaking so bad. My post-surgical camisole was pretty damp and I freaked. It leaks right where it comes out of my body, so it's pretty awful. They redressed everything, and I'm using gauze and what not now, but they concluded I'm overdoing it, and that's why I'm leaking.
So, I've stayed off my elliptical and have just been walking. God I hate this. I want to get back to pilates soooo bad. But it has helped by me slowing down a little. I just want it out. If I haven't got to the point where it's less than 30ml a day coming out of me by the 8th of November, they'll take it out anyway, because it could start to be at risk for infection.
I also saw Dr. Kaplan this week - cried on his shoulder a little bit. He's just the best - they both are. We talked about my decision to go ahead with radiation, and my continuing on with Herceptin, and he wants to get me on this anti-estrogen pill called lapatinib (because of my positive hormone receptors) but it's a very expensive drug, so we're going to sure first that those assholes at my insurance company will pay for it. I won't die without it, but again, it will increase my odds against re occurrence of the cancer.
Swedish is still fighting for me on the insurance issue (them trying to not pay for the chemo). I've put it in their hands. I cannot deal with it. It's too emotionally stressful.
Anyway, last week was busy, I worked more than I have in a while. We had the annual editorial conference Friday, at the mother ship (the press facility and main office for Sound Publishing) which is almost to Everett. Actually it was a pretty good conference - editorial staff from all over the place. I sat by the editor for the Vashon Island Beachcomber, which got general excellence at the WNPA awards, and she is a wonderful woman. It's just her and one reporter. Unreal. The keynote speaker was a Pulitzer prize winning journalist from the L.A. Times, who uncovered the city hall scandal in Bell, California, where the city council president and board member were bilking the city for hundreds of thousands of dollars for the salaries - most city council members are paid a minimal "wage" for their services and this guy was making almost $800,000 a day! I left after him - didn't stay for any breakout sessions because I was exhausted, so I left at 3:30 and got stuck in the worst traffic jam ever. It took me two hours to get home. I was so pissed! But the rest of the weekend was good.
I have herceptin Tuesday, then next week a CT to figure out the positioning of the "nukes" for when they start radiation.
I'm getting more and more excited about going to Kauai in December! Barrie's coming too, so it will be two of my Alaska pals and me. It's going to be a wonderful reprieve for me.
I had to make a mad dash to Dr. Beatty's on Tuesday, because I was leaking so bad. My post-surgical camisole was pretty damp and I freaked. It leaks right where it comes out of my body, so it's pretty awful. They redressed everything, and I'm using gauze and what not now, but they concluded I'm overdoing it, and that's why I'm leaking.
So, I've stayed off my elliptical and have just been walking. God I hate this. I want to get back to pilates soooo bad. But it has helped by me slowing down a little. I just want it out. If I haven't got to the point where it's less than 30ml a day coming out of me by the 8th of November, they'll take it out anyway, because it could start to be at risk for infection.
I also saw Dr. Kaplan this week - cried on his shoulder a little bit. He's just the best - they both are. We talked about my decision to go ahead with radiation, and my continuing on with Herceptin, and he wants to get me on this anti-estrogen pill called lapatinib (because of my positive hormone receptors) but it's a very expensive drug, so we're going to sure first that those assholes at my insurance company will pay for it. I won't die without it, but again, it will increase my odds against re occurrence of the cancer.
Swedish is still fighting for me on the insurance issue (them trying to not pay for the chemo). I've put it in their hands. I cannot deal with it. It's too emotionally stressful.
Anyway, last week was busy, I worked more than I have in a while. We had the annual editorial conference Friday, at the mother ship (the press facility and main office for Sound Publishing) which is almost to Everett. Actually it was a pretty good conference - editorial staff from all over the place. I sat by the editor for the Vashon Island Beachcomber, which got general excellence at the WNPA awards, and she is a wonderful woman. It's just her and one reporter. Unreal. The keynote speaker was a Pulitzer prize winning journalist from the L.A. Times, who uncovered the city hall scandal in Bell, California, where the city council president and board member were bilking the city for hundreds of thousands of dollars for the salaries - most city council members are paid a minimal "wage" for their services and this guy was making almost $800,000 a day! I left after him - didn't stay for any breakout sessions because I was exhausted, so I left at 3:30 and got stuck in the worst traffic jam ever. It took me two hours to get home. I was so pissed! But the rest of the weekend was good.
I have herceptin Tuesday, then next week a CT to figure out the positioning of the "nukes" for when they start radiation.
I'm getting more and more excited about going to Kauai in December! Barrie's coming too, so it will be two of my Alaska pals and me. It's going to be a wonderful reprieve for me.
Saturday, October 22, 2011
Tired and sore
Everybody is asking "how are you doing?" I'm tired and I am sore. My big accomplishment today was to get Abbey to the groomer and pick her up. I didn't even shower until a little bit ago. I woke up too early, read the paper, had breakfast, paid bills, tried to make some sense out of hospital shit, balanced my checkbook and by then it was noon and I was exhausted.
I hate feeling so helpless and weak. My cousin, Julie, wrote in a card to me to "be patient with yourself." That is a very hard thing for me to do.
So, I'm already back in my jammies, eating an apple and having a glass of wine, which I can tolerate again, thank God, but I limit myself to two glasses since I'm on pain killers.
What hurts so bad is where the nasty drain appears to start, sort of under my arm pit, near the site where they took the sentinel node out, which hurt anyway. I hate this drain so much. They'll take it out when I get 30ml or less per day coming out of me. Today has been good - only 60 so far. It hurts, and it's ugly. My chest is ugly. All I'd have to do on Halloween is take my shirt off and I could scare the living beejeezus out of anyone. I hate the way I look.
The good news is that I am cancer free. I'm very, very relieved, but it doesn't make this pain any easier. I consulted with a second radiologist Thursday, and I will be doing radiation. It was a coin toss.
Since I was triple positive (for hormone receptors) there is a school of thought that radiation isn't necessary. However, with the size of my tumor and it's aggression, it is recommended. I'm doing it. The day I made this decision, a story came out in the New York Times with the header "Radiation Therapy After Breast Cancer Surgery Cuts Recurrence, Study Says." Blew my mind.
Basically, if I do this, there's a good chance it will never come back, and if it does, it will be in 10-15 years. By then, maybe there will be other methods of treating breast cancer. If not, well I'll be old enough by then to just say screw it, go on a nice trip somewhere, and come home to die.
So on November 9, I'll have a CT which will enable the radiologist to know precisely where to aim the nuke, and I'll start radiation when I get back from my little trip to Hawaii in December.
I'm so proud of my kid. He rode all day the other day with the Coeur d'Alene Fire Department, and took a few blood pressures and what not. I think he's really getting into this EMT thing, and I'm so happy about that.
I hope you all won't abandon me. Being cancer free doesn't mean the hell is over. I so appreciate everyone who reads this blog, and cares about me.
I hate feeling so helpless and weak. My cousin, Julie, wrote in a card to me to "be patient with yourself." That is a very hard thing for me to do.
So, I'm already back in my jammies, eating an apple and having a glass of wine, which I can tolerate again, thank God, but I limit myself to two glasses since I'm on pain killers.
What hurts so bad is where the nasty drain appears to start, sort of under my arm pit, near the site where they took the sentinel node out, which hurt anyway. I hate this drain so much. They'll take it out when I get 30ml or less per day coming out of me. Today has been good - only 60 so far. It hurts, and it's ugly. My chest is ugly. All I'd have to do on Halloween is take my shirt off and I could scare the living beejeezus out of anyone. I hate the way I look.
The good news is that I am cancer free. I'm very, very relieved, but it doesn't make this pain any easier. I consulted with a second radiologist Thursday, and I will be doing radiation. It was a coin toss.
Since I was triple positive (for hormone receptors) there is a school of thought that radiation isn't necessary. However, with the size of my tumor and it's aggression, it is recommended. I'm doing it. The day I made this decision, a story came out in the New York Times with the header "Radiation Therapy After Breast Cancer Surgery Cuts Recurrence, Study Says." Blew my mind.
Basically, if I do this, there's a good chance it will never come back, and if it does, it will be in 10-15 years. By then, maybe there will be other methods of treating breast cancer. If not, well I'll be old enough by then to just say screw it, go on a nice trip somewhere, and come home to die.
So on November 9, I'll have a CT which will enable the radiologist to know precisely where to aim the nuke, and I'll start radiation when I get back from my little trip to Hawaii in December.
I'm so proud of my kid. He rode all day the other day with the Coeur d'Alene Fire Department, and took a few blood pressures and what not. I think he's really getting into this EMT thing, and I'm so happy about that.
I hope you all won't abandon me. Being cancer free doesn't mean the hell is over. I so appreciate everyone who reads this blog, and cares about me.
Sunday, October 16, 2011
What a week
It seems like it was over a month ago since I last blogged, but it's been a mere week. And what a week it was. My sister, Cheryle, arrived Tuesday, which was my birthday. Seriously, it was one of the best birthdays ever. I worked four hours to get things wrapped up, and when I got home I had two beautiful bouquets of flowers, tons of cards, messages on Facebook, presents - it was almost overwhelming, and I thought, my God, do they all think I'm going to die tomorrow? Just kidding. I guess I really am blessed to have so many people in my life who really do care. Cheryle and I had an elegant dinner at El Gaucho, and she paid for my dinner, which I wasn't planning, but she insisted. So that was very nice.
Wednesday noon we were off to the hospital. I had not eaten of course, and no liquids after 9:30 a.m., so you get pretty grouchy by the time you get into the OR. We waited and waited. Finally at 4 p.m. Dr. Beatty shows up....his surgery before me was complicated. I was supposed to be in the OR by 1:30. So I just wanted to be knocked out and get the show on the road.
So, along with Dr. Beatty was this nice-looking young lady in scrubs. She was his resident - and I swear to God, looked about maybe 19. I just sort of blurted out, "are you old enough to be a doctor!" My God, we're talking Doogie Houser here! She is a doll, Dr. Tierney, and I learned later she is 26. I said to her, you must be very smart, and she said, "either that or very stupid!" So, I really dig her now, too. The anesthesiologist came next - Dr. Higgins. Cute little bugger. Once we got in the OR (I walked in and pretty much plopped myself up on the table - I'm skilled now), Dr. Higgins gave me the first little dose to make you relax, which is when I start talking about whatever is on my mind. I remember telling Dr. Higgins he was very cute, and the nurses giggling that "the drugs were talking," then I asked if he was single.
The next thing I know, I'm in recovery, unable to open my eyes, but begging for ice chips. I guess Dr. Higgins decided it was time to shut me up. I never did find out if he was single! Sigh.
I got into my hospital room about 7:45 p.m. Cheryle told me that Dr. Beatty said my surgery was "textbook," no complications. I still don't know what pathology will say. I will probably find out tomorrow when I go in for my post-op follow up.
The evening in the hospital was restless. I got so damn hot! So, I buzzed for the nurse and told her I was boiling hot - well, no wonder, the heat was up to 80 in my room! So, she turned it down, and I woke up freezing a few hours later. Plus they came in at 1 a.m. to take my vitals and drain me. Hospitals really sorta suck, but they did have blueberry pancakes on the menu, which oddly enough I was craving, so I had blueberry pancakes and fruit for breakfast which made me very happy.
Dr. Tierney (the Doog) came in to check on me and the wound; that's when I pried her age out of her. Once they trained me on the drain I was a free woman.
The drain is gross. It's a tube that goes directly into my chest and this bloody fluid drains into a device that looks like a hand grenade. Seriously. I've got it down now, but yesterday there was a leak somewhere and we couldn't figure it out, so we called Dr. Beatty's answering service and the Doog called back. She thought there might be a clot near the insertion point, and she said to take off part of the dressing to check it out. She was right. So, we "stripped" it from there all the way to the grenade, and I'm draining fine now. I have to write down how much fluid comes out. Once it's down to less that 30 ml a day, the drain can come out. But we're looking at 10 days or so. It's a pain in the ass, because there's a lump where it rests in a pocket inside my camisole, so dressing myself is a challenge. But once this sucker is out, I can get a real prosthetic bra, and look pretty normal again.
I'm feeling pretty good though, but I sleep a lot. Last night Cheryle and I did the "Market Ghost Tour" at Pike Place Market. There is a lot of paranormal activity there, and I had these two tickets and thought that would be fun during Halloween month. It was a blast. Our tour guide was a girl with the macabre makeup on and what not. Her name was Kook! So we heard all the stories, many of which are truly fascinating, but never saw a ghost. Bummer. After that we had dinner at the Steelhead Diner at the market. We were home from our big date by 9, and I was tired. But I got out! We've watched a couple of good movies, too.
Today the big outing was Home Depot, Bakery Nouveau, a favorite little shop in West Seattle, and the grocery store for a few more items. I'm tired but I'm so glad Cheryle is here, so I'm not dealing with this on my own. She is going with me to see Dr. Beatty tomorrow. Tuesday I think she'll head over to Shelton (other side of Puget Sound) to visit her brother and sister-in-law and I'll attempt to go back to work.
On the insurance front, I need to call the attorney tomorrow and see where we're at. I did get a bill from Swedish for $138,351 in the mail Saturday, and also 28 pages of shit from my insurer. Cheryle crossed checked all the dates to my appointment book, and indeed they are trying to stick me with all of the chemo. They won't win.
I'm still going to Hawaii in December, but my son, Taylor, who turned 21 this week(!), cannot go now because of an exam he has to take the day we were scheduled to leave. It's a state test for his EMT stuff, and he can't change it. It's too complicated to change everything now because of Christmas blackout dates and his school schedule, so I'm taking Colleen instead. We've traveled together many times, and do just great together. But I will desperately need the break, then start radiation when I get back.
Meantime, I have to heal and get stronger. I had quite the whack to my body - literally!
Wednesday noon we were off to the hospital. I had not eaten of course, and no liquids after 9:30 a.m., so you get pretty grouchy by the time you get into the OR. We waited and waited. Finally at 4 p.m. Dr. Beatty shows up....his surgery before me was complicated. I was supposed to be in the OR by 1:30. So I just wanted to be knocked out and get the show on the road.
So, along with Dr. Beatty was this nice-looking young lady in scrubs. She was his resident - and I swear to God, looked about maybe 19. I just sort of blurted out, "are you old enough to be a doctor!" My God, we're talking Doogie Houser here! She is a doll, Dr. Tierney, and I learned later she is 26. I said to her, you must be very smart, and she said, "either that or very stupid!" So, I really dig her now, too. The anesthesiologist came next - Dr. Higgins. Cute little bugger. Once we got in the OR (I walked in and pretty much plopped myself up on the table - I'm skilled now), Dr. Higgins gave me the first little dose to make you relax, which is when I start talking about whatever is on my mind. I remember telling Dr. Higgins he was very cute, and the nurses giggling that "the drugs were talking," then I asked if he was single.
The next thing I know, I'm in recovery, unable to open my eyes, but begging for ice chips. I guess Dr. Higgins decided it was time to shut me up. I never did find out if he was single! Sigh.
I got into my hospital room about 7:45 p.m. Cheryle told me that Dr. Beatty said my surgery was "textbook," no complications. I still don't know what pathology will say. I will probably find out tomorrow when I go in for my post-op follow up.
The evening in the hospital was restless. I got so damn hot! So, I buzzed for the nurse and told her I was boiling hot - well, no wonder, the heat was up to 80 in my room! So, she turned it down, and I woke up freezing a few hours later. Plus they came in at 1 a.m. to take my vitals and drain me. Hospitals really sorta suck, but they did have blueberry pancakes on the menu, which oddly enough I was craving, so I had blueberry pancakes and fruit for breakfast which made me very happy.
Dr. Tierney (the Doog) came in to check on me and the wound; that's when I pried her age out of her. Once they trained me on the drain I was a free woman.
The drain is gross. It's a tube that goes directly into my chest and this bloody fluid drains into a device that looks like a hand grenade. Seriously. I've got it down now, but yesterday there was a leak somewhere and we couldn't figure it out, so we called Dr. Beatty's answering service and the Doog called back. She thought there might be a clot near the insertion point, and she said to take off part of the dressing to check it out. She was right. So, we "stripped" it from there all the way to the grenade, and I'm draining fine now. I have to write down how much fluid comes out. Once it's down to less that 30 ml a day, the drain can come out. But we're looking at 10 days or so. It's a pain in the ass, because there's a lump where it rests in a pocket inside my camisole, so dressing myself is a challenge. But once this sucker is out, I can get a real prosthetic bra, and look pretty normal again.
I'm feeling pretty good though, but I sleep a lot. Last night Cheryle and I did the "Market Ghost Tour" at Pike Place Market. There is a lot of paranormal activity there, and I had these two tickets and thought that would be fun during Halloween month. It was a blast. Our tour guide was a girl with the macabre makeup on and what not. Her name was Kook! So we heard all the stories, many of which are truly fascinating, but never saw a ghost. Bummer. After that we had dinner at the Steelhead Diner at the market. We were home from our big date by 9, and I was tired. But I got out! We've watched a couple of good movies, too.
Today the big outing was Home Depot, Bakery Nouveau, a favorite little shop in West Seattle, and the grocery store for a few more items. I'm tired but I'm so glad Cheryle is here, so I'm not dealing with this on my own. She is going with me to see Dr. Beatty tomorrow. Tuesday I think she'll head over to Shelton (other side of Puget Sound) to visit her brother and sister-in-law and I'll attempt to go back to work.
On the insurance front, I need to call the attorney tomorrow and see where we're at. I did get a bill from Swedish for $138,351 in the mail Saturday, and also 28 pages of shit from my insurer. Cheryle crossed checked all the dates to my appointment book, and indeed they are trying to stick me with all of the chemo. They won't win.
I'm still going to Hawaii in December, but my son, Taylor, who turned 21 this week(!), cannot go now because of an exam he has to take the day we were scheduled to leave. It's a state test for his EMT stuff, and he can't change it. It's too complicated to change everything now because of Christmas blackout dates and his school schedule, so I'm taking Colleen instead. We've traveled together many times, and do just great together. But I will desperately need the break, then start radiation when I get back.
Meantime, I have to heal and get stronger. I had quite the whack to my body - literally!
Sunday, October 9, 2011
Tick-tock
Three days until my surgery. I feel pretty good right now, but I will be freaking out more than likely Wednesday morning.
Picking up where I left off last time...it sort of sounds like I won't be able to get out of radiation. They just have to be sure that all the cancer is gone (since I had two different kinds of breast cancer). However, since radiation has to be every day for 6 weeks with no break, they won't start until I get back from Hawaii the middle of December. So, I will have plenty of time to heal from the mastectomy before they start radiation. Then, reconstruction can't start for at least six months after radiation, to allow time for the tissue to heal.
I've consulted with three plastic surgeons, and have pretty much decided to go the route of a tram-flap. I'm not interested in implants and having something foreign in my body. The tram-flap is way more involved however. They will move tissue and from my abdominal area to form a new breast. It's a 6-8 hour operation, with a three to six week recovery because you're cut in two places. But that's way off right now. I just have to get through Wednesday and the next few weeks of being very sore.
My psychological well-being changes from day to day. Thursday was horrible. I've been going along, hoping to God that my insurance company wouldn't "drop the other shoe," and sure as shit they did. Bastards.
Remember in the beginning I opted to take part in a clinical trial? I did this to help womankind, and do my part to end this horrible disease. Nowhere, absolutely nowhere in my insurance stuff does it say anything about clinical trials. Well, they are saying that somewhere in the fine print in the company's employee handbook that it says they won't cover treatment under a clinical trial. What that means is they are threatening not to cover the chemotherapy which I couldn't even tell you what that adds up to.
Suffice it to say, I was devastated. I cried my eyes out, threw my cell phone, but now I'm just plain pissed. First off, I was never on any experimental drugs. Turned out I was the control person, so I had the standard protocol. Second, any extra tests they did, MRI's and so on, were not even billed to the insurance company. I told them that. Doesn't seem to matter - the fine print, is what it is. I totally do not have the strength to fight this alone, and I'm not. I've got people on it - the gal that represents Sound Publishing to the insurer, the social worker, my editor, and most importantly, Barry, the research nurse.
He called me late Friday and said he talked to the assholes at First Choice (my insurance company) and he said, "man, are they mean." He and Dr. Kaplan have never heard of this happening, or even seen it. He knows how afraid I am of going broke over this, and he told me, (and we'll wait and see), that they are going to squeeze whatever they can out of First Choice and then Swedish will pick up the rest. God, did that make my weekend more relaxing.
Still, I must say, insurance companies are all a bunch of crooks in my opinion. They sweet talk you, take your money, and then try to stick it to you. This country sucks when it comes to health care.
Nonetheless, I had a great weekend for a change. Friday night was the Washington Newpapers Association awards banquet, in Everett this year, so a bunch of us went. I had entered six stories, and I won second place in "News of the Weird" for a story I did about a human skull that was found at an estate sale. Figures, I'd win in the weird category! But it was a fun time. Then last night, my old pal Linell, who I have known since the 7th grade, and a friend of hers, Pat, met me for a lovely dinner at Etta's. They bought me an early birthday dinner, so that was very sweet. Pat is a survivor, and had some valuable advice for me. I was so grateful. Then I met up with my pal Isaac for a couple of drinks, and we got caught up, which was a lot of fun. And, I had a good massage yesterday, too.
So, this insurance thing is really bugging me. But they picked the wrong person to fuck with. I've worked my whole life. I'll be 55 on Tuesday. They are not going to ruin my life.
Picking up where I left off last time...it sort of sounds like I won't be able to get out of radiation. They just have to be sure that all the cancer is gone (since I had two different kinds of breast cancer). However, since radiation has to be every day for 6 weeks with no break, they won't start until I get back from Hawaii the middle of December. So, I will have plenty of time to heal from the mastectomy before they start radiation. Then, reconstruction can't start for at least six months after radiation, to allow time for the tissue to heal.
I've consulted with three plastic surgeons, and have pretty much decided to go the route of a tram-flap. I'm not interested in implants and having something foreign in my body. The tram-flap is way more involved however. They will move tissue and from my abdominal area to form a new breast. It's a 6-8 hour operation, with a three to six week recovery because you're cut in two places. But that's way off right now. I just have to get through Wednesday and the next few weeks of being very sore.
My psychological well-being changes from day to day. Thursday was horrible. I've been going along, hoping to God that my insurance company wouldn't "drop the other shoe," and sure as shit they did. Bastards.
Remember in the beginning I opted to take part in a clinical trial? I did this to help womankind, and do my part to end this horrible disease. Nowhere, absolutely nowhere in my insurance stuff does it say anything about clinical trials. Well, they are saying that somewhere in the fine print in the company's employee handbook that it says they won't cover treatment under a clinical trial. What that means is they are threatening not to cover the chemotherapy which I couldn't even tell you what that adds up to.
Suffice it to say, I was devastated. I cried my eyes out, threw my cell phone, but now I'm just plain pissed. First off, I was never on any experimental drugs. Turned out I was the control person, so I had the standard protocol. Second, any extra tests they did, MRI's and so on, were not even billed to the insurance company. I told them that. Doesn't seem to matter - the fine print, is what it is. I totally do not have the strength to fight this alone, and I'm not. I've got people on it - the gal that represents Sound Publishing to the insurer, the social worker, my editor, and most importantly, Barry, the research nurse.
He called me late Friday and said he talked to the assholes at First Choice (my insurance company) and he said, "man, are they mean." He and Dr. Kaplan have never heard of this happening, or even seen it. He knows how afraid I am of going broke over this, and he told me, (and we'll wait and see), that they are going to squeeze whatever they can out of First Choice and then Swedish will pick up the rest. God, did that make my weekend more relaxing.
Still, I must say, insurance companies are all a bunch of crooks in my opinion. They sweet talk you, take your money, and then try to stick it to you. This country sucks when it comes to health care.
Nonetheless, I had a great weekend for a change. Friday night was the Washington Newpapers Association awards banquet, in Everett this year, so a bunch of us went. I had entered six stories, and I won second place in "News of the Weird" for a story I did about a human skull that was found at an estate sale. Figures, I'd win in the weird category! But it was a fun time. Then last night, my old pal Linell, who I have known since the 7th grade, and a friend of hers, Pat, met me for a lovely dinner at Etta's. They bought me an early birthday dinner, so that was very sweet. Pat is a survivor, and had some valuable advice for me. I was so grateful. Then I met up with my pal Isaac for a couple of drinks, and we got caught up, which was a lot of fun. And, I had a good massage yesterday, too.
So, this insurance thing is really bugging me. But they picked the wrong person to fuck with. I've worked my whole life. I'll be 55 on Tuesday. They are not going to ruin my life.
Monday, September 26, 2011
The next surgery
I have to make this quick - "Dancing With the Stars" is on in 15-minutes! At least I can still enjoy my guilty pleasures!
So, it's set. My mastectomy will be on Oct. 12. The first available date was Oct. 11, and I just looked at Dr. Beatty and said "really, well that's not happening!" Oct. 11 is my birthday, and as if birthdays aren't bad enough anymore, I sure as hell didn't want to say goodbye to ol' leftie on my birthday.
This time, my sister Cheryle is coming from Alaska to take care of me. This will require an overnight stay in the hospital for me, and I will be very sore. Also, I'll have a drain for a few weeks, which totally grosses me out. So, she'll stay as long as I need her.
Dr. Beatty spent a great deal of time with me talking about next steps. My medical oncologist, the wonderful Dr. Kaplan, felt radiation would be a given. But then my friend who had a double mastectomy called me and questioned why that would be necessary since by removing the breast they're removing the cancer. Good question. She didn't have to go through radiation.
Dr. Beatty said they would radiate the chest in that area, but he also said the pathology after this one will tell the story.
As usual, I fall into a strange category. I had a huge tumor, but no lymph node issues. He said that's very unusual. The lobular cancer that is still there is a sneaky one. He used a cluster of grapes as an analogy. The grapes are the lobes that store milk, and the branches are the milk ducts. So, the cancer starts in the grapes, and sneaks up the ducts, therefore making it hard to see in imaging.
If pathology is super clean after this surgery, I can possibly skip radiation and move on to reconstruction.
If it's questionable, I suppose I'll have to do radiation, which will be a pain in the ass because it's every day for 6 weeks. Also, they can't start reconstruction until 6 months after radiation, because it changes your skin texture. It has to totally heal. So I still have a lot of decisions to make and much more to endure.
Meantime, there are prothethics, and believe it or not, they recommend Nordstrom for the best prosthetic bras and fitters. Yay! I can put it on my Nordstrom card - and the insurance company will reimburse me. It's sort of bizarre, yes?
So, before my surgery, I'm going to be consulting with at least three plastic surgeons so I am armed with knowledge. Aaah! Dancing is starting!
So, it's set. My mastectomy will be on Oct. 12. The first available date was Oct. 11, and I just looked at Dr. Beatty and said "really, well that's not happening!" Oct. 11 is my birthday, and as if birthdays aren't bad enough anymore, I sure as hell didn't want to say goodbye to ol' leftie on my birthday.
This time, my sister Cheryle is coming from Alaska to take care of me. This will require an overnight stay in the hospital for me, and I will be very sore. Also, I'll have a drain for a few weeks, which totally grosses me out. So, she'll stay as long as I need her.
Dr. Beatty spent a great deal of time with me talking about next steps. My medical oncologist, the wonderful Dr. Kaplan, felt radiation would be a given. But then my friend who had a double mastectomy called me and questioned why that would be necessary since by removing the breast they're removing the cancer. Good question. She didn't have to go through radiation.
Dr. Beatty said they would radiate the chest in that area, but he also said the pathology after this one will tell the story.
As usual, I fall into a strange category. I had a huge tumor, but no lymph node issues. He said that's very unusual. The lobular cancer that is still there is a sneaky one. He used a cluster of grapes as an analogy. The grapes are the lobes that store milk, and the branches are the milk ducts. So, the cancer starts in the grapes, and sneaks up the ducts, therefore making it hard to see in imaging.
If pathology is super clean after this surgery, I can possibly skip radiation and move on to reconstruction.
If it's questionable, I suppose I'll have to do radiation, which will be a pain in the ass because it's every day for 6 weeks. Also, they can't start reconstruction until 6 months after radiation, because it changes your skin texture. It has to totally heal. So I still have a lot of decisions to make and much more to endure.
Meantime, there are prothethics, and believe it or not, they recommend Nordstrom for the best prosthetic bras and fitters. Yay! I can put it on my Nordstrom card - and the insurance company will reimburse me. It's sort of bizarre, yes?
So, before my surgery, I'm going to be consulting with at least three plastic surgeons so I am armed with knowledge. Aaah! Dancing is starting!
Wednesday, September 21, 2011
Cancer has it's own agenda...this isn't over
I decided to wait until I saw my medical oncologist today to report the latest. As many of you know, I had my lumpectomy one week ago today. I did a quick Facebook post that day, that it seemed to go well. Dr. Beatty, my surgeon, removed 7.7 centimeters of mass, and there is no cancer in my lymph nodes, which is excellent news.
But I am not cancer free. Dr. Beatty called me late Friday when the pathology report came in. I had dozed off and Joni was napping, too. I did know there was another little tumor in another part of the breast, and it was, and still is, benign. However, there is lobular cancer, the second most prevalent of breast cancers (behind DCIS, which I had in the tumor) still in the breast.
I asked Dr. Kaplan today why this wasn't picked up by an MRI. It's not like a tumor or mass, rather it sort of fingers out in the ducts and is only picked up by pathology.
You can imagine I was devastated when Dr. Beatty called me Friday. I tried all weekend to process the fact that the plan didn't work, and I will have to have a mastectomy in two to three weeks. I feel defeated, depressed, sad and humiliated at the thought of being - well, I don't even want to go there.
I told Dr. Kaplan I felt like a fool for going through all the hell of chemo, thinking this was going to work. He said the chemo was still in the cards because it was such a large tumor, and it most likely prevented it from spreading to other parts of my body. It is not in my blood or lymphatic system or anywhere else thank God.
So, with removal of the breast, then, God willing, I'll be rid of the cancer. But it doesn't end there. I'm looking at a year of Herceptin every three weeks, which has to be administered like chemo, but there are no side effects. I was on Herceptin with my first round of chemo. It's basically to keep me from producing estrogen because of my HER2 status. But that means I won't get rid of this damn port till the Herceptin is over. Plus, I'll be on sort of an anti-hormone therapy, which is a pill, to also suppress estrogen production (it feeds my cancer).
More aggravation - I will have to go through radiation. The risk of local recurrence is too great if I don't. That will start not too long after the mastectomy, every freaking day for I think six weeks. Am I having fun yet?
I can't start reconstructive surgery until after radiation, because the tissue changes - the elasticity and texture. I'm probably looking at two to three surgeries for reconstruction. Meantime, I guess I'll get a prosthesis, so that means when I go to Hawaii in December I'll be sporting a fake boob under my swimsuit. I'm just sick about it.
I guess I should be happy that it's not spread, but all I feel is sore of course, and sad.
To add to my horrible day, my ex mother-n-law died today, who I have always loved. Taylor told me as soon as he found out. She is the last of the four - my folks, and Ron's folks, and I am heartbroken - Taylor has no more grandparents. I am grieving this loss.
So, I'm in this for the long haul I guess. Who will ever love me once I'm a mutilated freak? I am so glad I don't have to go through any more chemo, though. I had already decided I wasn't going to do it regardless.
But I am not cancer free. Dr. Beatty called me late Friday when the pathology report came in. I had dozed off and Joni was napping, too. I did know there was another little tumor in another part of the breast, and it was, and still is, benign. However, there is lobular cancer, the second most prevalent of breast cancers (behind DCIS, which I had in the tumor) still in the breast.
I asked Dr. Kaplan today why this wasn't picked up by an MRI. It's not like a tumor or mass, rather it sort of fingers out in the ducts and is only picked up by pathology.
You can imagine I was devastated when Dr. Beatty called me Friday. I tried all weekend to process the fact that the plan didn't work, and I will have to have a mastectomy in two to three weeks. I feel defeated, depressed, sad and humiliated at the thought of being - well, I don't even want to go there.
I told Dr. Kaplan I felt like a fool for going through all the hell of chemo, thinking this was going to work. He said the chemo was still in the cards because it was such a large tumor, and it most likely prevented it from spreading to other parts of my body. It is not in my blood or lymphatic system or anywhere else thank God.
So, with removal of the breast, then, God willing, I'll be rid of the cancer. But it doesn't end there. I'm looking at a year of Herceptin every three weeks, which has to be administered like chemo, but there are no side effects. I was on Herceptin with my first round of chemo. It's basically to keep me from producing estrogen because of my HER2 status. But that means I won't get rid of this damn port till the Herceptin is over. Plus, I'll be on sort of an anti-hormone therapy, which is a pill, to also suppress estrogen production (it feeds my cancer).
More aggravation - I will have to go through radiation. The risk of local recurrence is too great if I don't. That will start not too long after the mastectomy, every freaking day for I think six weeks. Am I having fun yet?
I can't start reconstructive surgery until after radiation, because the tissue changes - the elasticity and texture. I'm probably looking at two to three surgeries for reconstruction. Meantime, I guess I'll get a prosthesis, so that means when I go to Hawaii in December I'll be sporting a fake boob under my swimsuit. I'm just sick about it.
I guess I should be happy that it's not spread, but all I feel is sore of course, and sad.
To add to my horrible day, my ex mother-n-law died today, who I have always loved. Taylor told me as soon as he found out. She is the last of the four - my folks, and Ron's folks, and I am heartbroken - Taylor has no more grandparents. I am grieving this loss.
So, I'm in this for the long haul I guess. Who will ever love me once I'm a mutilated freak? I am so glad I don't have to go through any more chemo, though. I had already decided I wasn't going to do it regardless.
Friday, September 9, 2011
I'm doing the best I can
I keep telling myself that, but I can't seem to get enough done (in my opinion). The last two days have been hard. It's been two weeks since my last chemo and I was thinking it was three. I can't even keep track of time. But I do feel better in that sense - I don't have the icky dry mouth and sick feeling anymore.
That said, I've been crying on and off for two days. I'm scared about the surgery, which is this coming Wednesday. I'm not worried about my surgeon, he's fabulous, or about not waking up, rather how it's going to all turn out.
I had an MRI Tuesday, and it says "there has been a further decrease in the volume, size, peak enhancement and kinetic profile of the abnormality centered at 11 o'clock."..etc, etc. then at the end it says "no adenopathy is visible" which means no signs of cancer in my lymph nodes, which is real good news. But it goes on to say that the "abnormality" had a substantial but incomplete response to therapy.
So, here I worry and worry about becoming a deformed person. And I cry and wonder what the next steps will be. I will refuse to do any more chemo. I don't care. It's too hard.
So, big fun tomorrow as I go in search of a very supportive sport bra that I will have to wear 24/7 for a few days while I heal.
I am so grateful Joni is coming. I just couldn't do this one on my own. We're going to have dinner the night before my surgery at my favorite (well one of my favorites) restaurant, The Book Bindery, in Fremont. It's so killer - a food writer turned me onto the place. It's only been open since last fall, but it's been "discovered" so you have to have a reservation. Hopefully it won't be my last meal.
I've been working really hard trying to get in more hours at work, and it was a busy week. Wore me out. I worked late three nights with meetings, then a guy was electrocuted on the Island, and a truck plowed into an old woman's house; breaking news is not real common on Mercer Island, and I'm it to respond.
My son Taylor, and his girl Jamie were indeed here for Labor Day Weekend. My God, it was so good to hug him. He hugged me harder this time, and didn't let go. I know he's worried about me. But we had fun - ate out one night, then drove by the house Kurt Cobain died in - I'd never even seen it before! I know - macabre.
We did Pike Place Market with a zillion other people Saturday, but it was such a beautiful day and all the flowers were overwhelmingly lovely.
Sunday we did Bumbershoot, and it was another sunny, gorgeous day. It was actually too hot for me. I get warm quick and can't take too much. The first thing I did, was listen to a talk given by Pamela DesBarres, aka "Miss Pamela," the world's most famous groupie and author of several books, the first one being "I'm With The Band." I read the book about 8 months ago and loved every word. She is a hoot, and still quite attractive in an old hippie sort of groove. In fact, she's coming out with her own clothing line next spring called Hippie Couture. Can't wait! Anyway, she autographed my book and I bought the sequel called "Piece of my Heart." It was very cool. I asked her if she was the inspiration for the character Penny Lane in the movie "Almost Famous," and she said she and two other groupies were. She also thinks the Stones will tour once more. Nice.
Later I saw Leon Russell while the kids went to see a hot Seattle rapper. Leon made me very happy. He did a lot of his great old blues, but also a couple of Beatles and Stones songs. He's played with them all. I was thrilled that he did his very famous take on "Jumpin' Jack Flash." He's still got a huge mane of white hair and beard, all under a white cowboy hat. Love the guy - geez he's in his 70s now and can still rock it.
On Labor Day all three of us took Abbey to the park for a walk, then they had to go back to Idaho. Jamie had a class Tuesday morning, and Taylor started Wednesday. They are both at North Idaho College.
Okay, I feel better.
Whatever it is you do, pray, meditate, chant....send it my way Wednesday because I'm scared shitless.
That said, I've been crying on and off for two days. I'm scared about the surgery, which is this coming Wednesday. I'm not worried about my surgeon, he's fabulous, or about not waking up, rather how it's going to all turn out.
I had an MRI Tuesday, and it says "there has been a further decrease in the volume, size, peak enhancement and kinetic profile of the abnormality centered at 11 o'clock."..etc, etc. then at the end it says "no adenopathy is visible" which means no signs of cancer in my lymph nodes, which is real good news. But it goes on to say that the "abnormality" had a substantial but incomplete response to therapy.
So, here I worry and worry about becoming a deformed person. And I cry and wonder what the next steps will be. I will refuse to do any more chemo. I don't care. It's too hard.
So, big fun tomorrow as I go in search of a very supportive sport bra that I will have to wear 24/7 for a few days while I heal.
I am so grateful Joni is coming. I just couldn't do this one on my own. We're going to have dinner the night before my surgery at my favorite (well one of my favorites) restaurant, The Book Bindery, in Fremont. It's so killer - a food writer turned me onto the place. It's only been open since last fall, but it's been "discovered" so you have to have a reservation. Hopefully it won't be my last meal.
I've been working really hard trying to get in more hours at work, and it was a busy week. Wore me out. I worked late three nights with meetings, then a guy was electrocuted on the Island, and a truck plowed into an old woman's house; breaking news is not real common on Mercer Island, and I'm it to respond.
My son Taylor, and his girl Jamie were indeed here for Labor Day Weekend. My God, it was so good to hug him. He hugged me harder this time, and didn't let go. I know he's worried about me. But we had fun - ate out one night, then drove by the house Kurt Cobain died in - I'd never even seen it before! I know - macabre.
We did Pike Place Market with a zillion other people Saturday, but it was such a beautiful day and all the flowers were overwhelmingly lovely.
Sunday we did Bumbershoot, and it was another sunny, gorgeous day. It was actually too hot for me. I get warm quick and can't take too much. The first thing I did, was listen to a talk given by Pamela DesBarres, aka "Miss Pamela," the world's most famous groupie and author of several books, the first one being "I'm With The Band." I read the book about 8 months ago and loved every word. She is a hoot, and still quite attractive in an old hippie sort of groove. In fact, she's coming out with her own clothing line next spring called Hippie Couture. Can't wait! Anyway, she autographed my book and I bought the sequel called "Piece of my Heart." It was very cool. I asked her if she was the inspiration for the character Penny Lane in the movie "Almost Famous," and she said she and two other groupies were. She also thinks the Stones will tour once more. Nice.
Later I saw Leon Russell while the kids went to see a hot Seattle rapper. Leon made me very happy. He did a lot of his great old blues, but also a couple of Beatles and Stones songs. He's played with them all. I was thrilled that he did his very famous take on "Jumpin' Jack Flash." He's still got a huge mane of white hair and beard, all under a white cowboy hat. Love the guy - geez he's in his 70s now and can still rock it.
On Labor Day all three of us took Abbey to the park for a walk, then they had to go back to Idaho. Jamie had a class Tuesday morning, and Taylor started Wednesday. They are both at North Idaho College.
Okay, I feel better.
Whatever it is you do, pray, meditate, chant....send it my way Wednesday because I'm scared shitless.
Monday, August 22, 2011
Chemo over, surgery scheduled
I'm still reeling from Friday's chemo, but it's over! For my heartfelt gratitude to my wonderful oncology nurses, I brought them a huge spray of flowers Friday, and a long, handwritten card expressing my feelings for how wonderful they've been, but I said, "I'm ready to blow this popstand!" I got lots of hugs in return, and a lovely handmade card from my favorite nurse, Sarah, who I told I wished she was my daughter, and her parents should be very proud of her.
While I'm on the subject of flowers, Saturday I got my $5 roses at West Seattle Produce, to cheer the place up. So then, my monthly housekeeper shows up with a dozen roses from Safeway for me! So sweet. So, I'm arranging all these roses, then there's a guy at the door with a floral delivery from my sweet Barrie up in Alaska congratulating me on my last chemo! I said to Celia, the housekeeper (I adore her), it looks like someone died now! Seriously, I loved it, and thank you so much, Bear. They are fabulous!
So, here's the scoop. My surgery is Sept. 14. One of my other angels, Joni, flys in the evening of the 12th (from Tucson) and will be here until the 18th to get me through it. Dr. Beatty (my surgeon) was amazed at the reduction in the mass. I'll have an MRI Sept. 6, along with bloodwork, and another mugascan (checks my heart to make sure it's strong enough for surgery, which I'm sure it will be...they've told me I have the heart of an athlete).
The MRI will tell the whole story, but Dr. Beatty is feeling pretty confident he'll get a clean margin, and even do a little "lifting" while I'm out, so hopefully I won't be too funky looking. I forgot to ask if he could do a little lipo-suction under my arms while he's in there! Alas, he doesn't do that anyway! My lower body has kept strong because I use my elliptical and walk, but I need to get rid of this shit under my arms when I'm strong enough.
The first step on the 14th is to inject dye under my left arm, so they can locate and remove the sentinel node. A pathologist will be on hand. If it looks bad, he'll examine it right away (while they are in there), but if it doesn't look suspicious they'll have a report in a couple of days. I pray that's the case and cancer hasn't slipped into any of my lymph nodes. So, this could go pretty good.
Meantime I went to a wonderful seminar last Thursday night on nutrition during and after cancer, and I left feeling pretty good about how I've been taking care of myself nutritionally. I'm already doing a lot of things right, but I need to eat about a cup and a half more of veggies each day. I do well with fruit, low dairy, I'm down to 2 cups of coffee a day, and I haven't had a drink in awhile. I have no desire. But when I do, I'm limiting it to 2 glasses. I could live to be - well who knows. It's not important, but I'm not ready to check-out just yet.
Taylor and Jamie are coming for Labor Day weekend! Yay! I bought tickets for Bumbershoot on Sunday of that weekend, so that will be fun. I'm excited about seeing Leon Russell! Remember him? Session man for the Beatles, especially George, (Leon played the concert for Bangladesh, brought the house down with his own take on "Jumpin' Jack Flash), but if Taylor and Jamie don't want to see an old fart, there will be a super hot Seattle rapper on another stage nearby! Leon will probably finish before the rapper, so I'll sneak in there, too.
Yesterday, my curiousity got to me, and I felt okay, so I went to Hempfest! Wowwee - this is the biggest festival of it's type anywhere! This is an interesting city I live in...love it. It was hot out and I can't take too much sun, but I saw all kinds of product made from hemp, head-shop type booths, politicians with booths who support legalization of marijuana, voter registration, bands, old-white stoners, young black and proud, little adorable couples and families - all at Hempfest. I treated myself to a delicious Hemp ice-cream sandwich - all natural, no soy, no dairy, served to me by a little old lady. God I love this town!
But then the bummer was, I got too hot, too tired and couldn't remember where I parked. I wandered, started to cry, but eventually found it and went home to take a shower. It was such a beautiful day until then. I just got panicky. But soon, when all the poison has worked it's way through my body I'll think clearly again.
I have goals. I want to be a grandmother someday. I still believe in love.
While I'm on the subject of flowers, Saturday I got my $5 roses at West Seattle Produce, to cheer the place up. So then, my monthly housekeeper shows up with a dozen roses from Safeway for me! So sweet. So, I'm arranging all these roses, then there's a guy at the door with a floral delivery from my sweet Barrie up in Alaska congratulating me on my last chemo! I said to Celia, the housekeeper (I adore her), it looks like someone died now! Seriously, I loved it, and thank you so much, Bear. They are fabulous!
So, here's the scoop. My surgery is Sept. 14. One of my other angels, Joni, flys in the evening of the 12th (from Tucson) and will be here until the 18th to get me through it. Dr. Beatty (my surgeon) was amazed at the reduction in the mass. I'll have an MRI Sept. 6, along with bloodwork, and another mugascan (checks my heart to make sure it's strong enough for surgery, which I'm sure it will be...they've told me I have the heart of an athlete).
The MRI will tell the whole story, but Dr. Beatty is feeling pretty confident he'll get a clean margin, and even do a little "lifting" while I'm out, so hopefully I won't be too funky looking. I forgot to ask if he could do a little lipo-suction under my arms while he's in there! Alas, he doesn't do that anyway! My lower body has kept strong because I use my elliptical and walk, but I need to get rid of this shit under my arms when I'm strong enough.
The first step on the 14th is to inject dye under my left arm, so they can locate and remove the sentinel node. A pathologist will be on hand. If it looks bad, he'll examine it right away (while they are in there), but if it doesn't look suspicious they'll have a report in a couple of days. I pray that's the case and cancer hasn't slipped into any of my lymph nodes. So, this could go pretty good.
Meantime I went to a wonderful seminar last Thursday night on nutrition during and after cancer, and I left feeling pretty good about how I've been taking care of myself nutritionally. I'm already doing a lot of things right, but I need to eat about a cup and a half more of veggies each day. I do well with fruit, low dairy, I'm down to 2 cups of coffee a day, and I haven't had a drink in awhile. I have no desire. But when I do, I'm limiting it to 2 glasses. I could live to be - well who knows. It's not important, but I'm not ready to check-out just yet.
Taylor and Jamie are coming for Labor Day weekend! Yay! I bought tickets for Bumbershoot on Sunday of that weekend, so that will be fun. I'm excited about seeing Leon Russell! Remember him? Session man for the Beatles, especially George, (Leon played the concert for Bangladesh, brought the house down with his own take on "Jumpin' Jack Flash), but if Taylor and Jamie don't want to see an old fart, there will be a super hot Seattle rapper on another stage nearby! Leon will probably finish before the rapper, so I'll sneak in there, too.
Yesterday, my curiousity got to me, and I felt okay, so I went to Hempfest! Wowwee - this is the biggest festival of it's type anywhere! This is an interesting city I live in...love it. It was hot out and I can't take too much sun, but I saw all kinds of product made from hemp, head-shop type booths, politicians with booths who support legalization of marijuana, voter registration, bands, old-white stoners, young black and proud, little adorable couples and families - all at Hempfest. I treated myself to a delicious Hemp ice-cream sandwich - all natural, no soy, no dairy, served to me by a little old lady. God I love this town!
But then the bummer was, I got too hot, too tired and couldn't remember where I parked. I wandered, started to cry, but eventually found it and went home to take a shower. It was such a beautiful day until then. I just got panicky. But soon, when all the poison has worked it's way through my body I'll think clearly again.
I have goals. I want to be a grandmother someday. I still believe in love.
Monday, August 8, 2011
Madness
What, somebody please tell me, is going on in this world? I cried through the first 20 minutes of the news tonight. A 600 point drop in the market, 31 dead troops in Afghanistan - the most in one day in this stupid 10-year war. Riots in London. And, cancer care providers running out of oncology medicines and it could get worse?
It's hard not to be depressed right now.
Thankfully, for many reasons, I have only one chemotherapy treatment left. So, hopefully Swedish won't run out of my poison before then, which is August 19. I had chemo Friday, and today, day three is always when I hit the wall. I feel terrible, everything is so difficult, and I cry a lot.
So, I'll be gad when chemo is over. Next step - see my surgeon August 22 and schedule the the lumpectomy. I'll go through another round of blood work, MRI, and God knows what else.
My timing always seems to be off. Yesterday, before the stock market crash today, I booked a trip to Kauai for Taylor, myself and I think his girlfriend Jamie is coming, too, which is great because I really like her.
But I got a good deal. It's only five days, but it was a Living Social coupon, at a brand new resort on Poipu beach, which is where I wanted. Gads, it's a two-bedroom, partial ocean view, with a full kitchen and lanai. And it's a full-service resort with housekeeping, concierge, etc. We get a discount at their market, and scuba diving or snorkeling for two, which I'll give to the kids. I'd rather do a river kayak adventure.
So, I'm trying not to beat myself up over this - quality of life is important too. I had to work this around blackout days at the resort, and Taylor's school schedule, so we aren't going at Christmas, which would have been great, but who seriously can afford that? So we're going Dec. 10-15, and I look at it as hopefully my "I survived" journey.
Meantime, I worry. About everything. Please someone, tell me things are going to get better.
I am happy with Seattle. When the weather is nice here, which it has been lately, it's so beautiful. I was just thinking yesterday how glad I was to have moved here. I renewed my lease until the end of next June, because I really can't find anything better where I can have Abbey. They treat me well, so it's okay.
Oh, and to top off all the rotten news, next season is the end for "Desperate Housewives!" That bites! Oh well, I thought I'd be lost when the original "Melrose Place" was cancelled so I guess I'll live through this one.
I do hope Taylor comes to see me soon, as I still haven't seen him since he got back from Texas. I haven't seen him since April, and I miss him so much. He is allegedly coming Labor Day weekend, after chemo and before surgery, which is what I want, because I don't want him to see me miserable.
Saturday, July 30, 2011
An angel on a street corner; debt crisis freaking me out
I love the weekends when I haven't just had chemo. This was an off week, thank God, because if I had to do this round every week - well, I don't think I could. It hit me pretty hard Monday - I stayed home all day and could barely function. But I made it to work the rest of the week, but still only got in 25 hours. Again, thank God for insurance, because these short hours mean short paychecks, too. And this fight in Washington D.C., which I'm following very closely, is making me very nervous. I don't want to end up an indigent old woman. My financial advisor tells me to stay the course, which I will, but those boneheads better reach an agreement before the deadline, or the sovereign U.S. as we know it will be in deep shit - i.e. double dip recession. My psychiatric oncologist tells me I worry too much about things I can't control, which is true, but I need to stop because it does affect my health. I'm trying.
So Tuesday night, I went back to my support group at Gilda's Club. I was standing at the corner waiting to cross Broadway to Gilda's, and this blond angel comes up beside me and says "I'm a one-year survivor." I looked at her, sort of shocked, and said "how did you know?"
She said she just could tell, and figured I was headed to Gilda's. She said, "It gets better, I want you to know that." She hugged me and I started to cry. We talked through another light and I asked her how old she was, because she didn't look very old. She's only 37, blond, pretty and she told me she just had her last reconstructive surgery, and sort of perked her boobs up. She gave me her business card and told me to e-mail or call anytime, and she'd be there for me. I have e-mailed her but haven't heard back, but I was blown away. An angel.
Then at group, the one same lady was there from last week, and she does indeed have a tumor on her liver now. It's not good. A fellow I hadn't met was there, and he has some sort of cancer in the bone marrow, that is not curable, but is treatable. So, he's on chemo (pills) the rest of his life. I hate this disease so much. But the group was good. We laughed, cried, and they were amazed by my encounter on the street.
So, get this. Some scumbag from hell, sawed all the copper pipes off the back of Gilda's Club, so now they have no heat or A/C. I asked Marti, our facilitator why someone would do that, and she said they sell the copper for drug money. Can you imagine? Doing that to a non-profit? It made the news, as they had a camp for kids with cancer there all week during the day, and they were sweltering, but still had fun. They need $10,000 to fix it. I plan to give what I can next time I'm there. It's just tragic.
By Thursday, one week since my last chemo, I began to feel human again. So, I'll have a good week this week until Friday when they hit me again. But then, I'll only have one left!
Taylor, my dear son, got back to Idaho in one piece last Sunday. He's going to the Gorge tonight to see Soundgarden. I'm so jealous. This will be the first summer since I moved to the "lower 48" in 1996 that I haven't gone to the Gorge. I just don't have the energy. It's a lot of work, with the traffic, accommodations, walking, etc. I told him I've heard rumors that one of the Pearl Jam guys might pop up on stage. Taylor's never understood my obsession with PJ, but I gave him the lecture that they've been together now for 20 years, so they've proven they are not just a flash in the pan grunge group, which seems funny to think now. He said one of his buddies that is going will freak if a PJ member shows up, because he loves them, too. Speaking of which....
When I saw Eddie Vedder at Benaroya Hall, I could not get my hands on one of these very cool posters by a local artist called Munk One, as they sold out. Well through the Internet and perseverance I got one! Turns out a guy who lives right here in West Seattle bought an extra one, so I paid him $60 for it - they were $35 at the show, but are going for much higher now on E-Bay. I'll try to find a link to it to post to FB. Anyway, when I went to the Alki Arts Fair last weekend, I found this fellow, Fred Madrid, who does custom matting and framing. I met him when I was first here in Seattle, through a little coffee group I got into which has since broke apart. I went to his studio Wednesday with the poster, and it's going to be flat out fantastic once it's matted and framed. He and his wife live off California Avenue, a main north/south in West Seattle. So, he asks me if I know who Chris Cornell is, and I say, yes, of course (lead singer for Soundgarden). Well, he used to live four houses down from Fred, and now his ex-wife lives there. Cornell's ex-wife is Susan Silver, who was a huge influence in the 90s music scene in Seattle. I think at one time she managed Alice in Chains. Anyway, so I asked Fred if he's ever run into Vedder, and he said he's seen him around.....he just lives off California a few blocks up he says. So, what I'm getting to, is that the house I've been driving people by when they come to visit, which I thought was Eddie's house - ISN'T! Shit! I feel like an ass now. There goes my Linda Ball West Seattle tour highlight!
I've decided to stay put in this apartment, which I've been in now for almost two years, until at least next summer. The economy is too fragile, as am I to move. So, in addition to my new art, I've got a couple of nice runners on order for my halls, through my interior design genius, Colleen, and I'm going to have my local interior design connection, Rebecca, paint my bedroom. Just a few little things to brighten the place up and make my environment feel better. Because this cancer treatment will go on and on still. I have surgery then six weeks of radiation ahead of me yet.
On a sad note, but it's of my doing, I am on my own again. It's complicated and personal, but if anyone is reading this who knows Brad, I want to say that he is a kind, sweet man. This is about me. I can't hardly take care of myself sometimes, and it's even harder to nurture a relationship. I just can't do it right now. I'm sorry. Chalk it up to another failed relationship.
So Tuesday night, I went back to my support group at Gilda's Club. I was standing at the corner waiting to cross Broadway to Gilda's, and this blond angel comes up beside me and says "I'm a one-year survivor." I looked at her, sort of shocked, and said "how did you know?"
She said she just could tell, and figured I was headed to Gilda's. She said, "It gets better, I want you to know that." She hugged me and I started to cry. We talked through another light and I asked her how old she was, because she didn't look very old. She's only 37, blond, pretty and she told me she just had her last reconstructive surgery, and sort of perked her boobs up. She gave me her business card and told me to e-mail or call anytime, and she'd be there for me. I have e-mailed her but haven't heard back, but I was blown away. An angel.
Then at group, the one same lady was there from last week, and she does indeed have a tumor on her liver now. It's not good. A fellow I hadn't met was there, and he has some sort of cancer in the bone marrow, that is not curable, but is treatable. So, he's on chemo (pills) the rest of his life. I hate this disease so much. But the group was good. We laughed, cried, and they were amazed by my encounter on the street.
So, get this. Some scumbag from hell, sawed all the copper pipes off the back of Gilda's Club, so now they have no heat or A/C. I asked Marti, our facilitator why someone would do that, and she said they sell the copper for drug money. Can you imagine? Doing that to a non-profit? It made the news, as they had a camp for kids with cancer there all week during the day, and they were sweltering, but still had fun. They need $10,000 to fix it. I plan to give what I can next time I'm there. It's just tragic.
By Thursday, one week since my last chemo, I began to feel human again. So, I'll have a good week this week until Friday when they hit me again. But then, I'll only have one left!
Taylor, my dear son, got back to Idaho in one piece last Sunday. He's going to the Gorge tonight to see Soundgarden. I'm so jealous. This will be the first summer since I moved to the "lower 48" in 1996 that I haven't gone to the Gorge. I just don't have the energy. It's a lot of work, with the traffic, accommodations, walking, etc. I told him I've heard rumors that one of the Pearl Jam guys might pop up on stage. Taylor's never understood my obsession with PJ, but I gave him the lecture that they've been together now for 20 years, so they've proven they are not just a flash in the pan grunge group, which seems funny to think now. He said one of his buddies that is going will freak if a PJ member shows up, because he loves them, too. Speaking of which....
When I saw Eddie Vedder at Benaroya Hall, I could not get my hands on one of these very cool posters by a local artist called Munk One, as they sold out. Well through the Internet and perseverance I got one! Turns out a guy who lives right here in West Seattle bought an extra one, so I paid him $60 for it - they were $35 at the show, but are going for much higher now on E-Bay. I'll try to find a link to it to post to FB. Anyway, when I went to the Alki Arts Fair last weekend, I found this fellow, Fred Madrid, who does custom matting and framing. I met him when I was first here in Seattle, through a little coffee group I got into which has since broke apart. I went to his studio Wednesday with the poster, and it's going to be flat out fantastic once it's matted and framed. He and his wife live off California Avenue, a main north/south in West Seattle. So, he asks me if I know who Chris Cornell is, and I say, yes, of course (lead singer for Soundgarden). Well, he used to live four houses down from Fred, and now his ex-wife lives there. Cornell's ex-wife is Susan Silver, who was a huge influence in the 90s music scene in Seattle. I think at one time she managed Alice in Chains. Anyway, so I asked Fred if he's ever run into Vedder, and he said he's seen him around.....he just lives off California a few blocks up he says. So, what I'm getting to, is that the house I've been driving people by when they come to visit, which I thought was Eddie's house - ISN'T! Shit! I feel like an ass now. There goes my Linda Ball West Seattle tour highlight!
I've decided to stay put in this apartment, which I've been in now for almost two years, until at least next summer. The economy is too fragile, as am I to move. So, in addition to my new art, I've got a couple of nice runners on order for my halls, through my interior design genius, Colleen, and I'm going to have my local interior design connection, Rebecca, paint my bedroom. Just a few little things to brighten the place up and make my environment feel better. Because this cancer treatment will go on and on still. I have surgery then six weeks of radiation ahead of me yet.
On a sad note, but it's of my doing, I am on my own again. It's complicated and personal, but if anyone is reading this who knows Brad, I want to say that he is a kind, sweet man. This is about me. I can't hardly take care of myself sometimes, and it's even harder to nurture a relationship. I just can't do it right now. I'm sorry. Chalk it up to another failed relationship.
Saturday, July 23, 2011
I guess this is the worse before it gets better
Sleep is elusive these first few days after A/C. It's 7:42 a.m. and I need more sleep, but I can't. Went to bed after watching the movie "Once" at 10 p.m. That's the movie with Glen Hansard who opened and played with Eddie last weekend. A very sweet story, filled with music. Loved it.
Looking back on the week, I had a follow up with the podiatrist on my right foot, which has been hurting like hell. I called Dr. Kaplan over last weekend and told him I thought it was infected, so now I'm on antibiotics for it. My medicine cabinet floweth over now. I get confused on when to take what. I already had an appointment with the podiatrist Monday morning, and yeah, it should be drying up faster, so I'm back soaking it in epsom salt every night and it does seem to be improving, although it will be a year before a complete healthy toenail grows back. Along with my hair.
I must say, for the fatigue level I'm experiencing, I did a kick ass job of covering the conclusion of the Sammamish shoreline master program. Three hour meeting a their city hall Monday night- grueling. I came home and took a nap first, but got a great story. Every single body of water in Washington must develop a new plan every seven years, so they are all scrambling. It's a fascinating topic to me, because it totally effects private property rights on lakes, rivers, and the Sound. Harkens back to my old real estate days, plus the folks up in Sammamish are pretty, shall we say, spirited? Good people though.
Back to cancer, I attended my first support group at Gilda's Club. It was good. I can't say much because it's all confidential, but one very smart, pragmatic lady has stage 4 breast cancer, and now they've found a spot on her liver. She has two small children. She empathized with the fact that I'm on adryamicin - she said it's nickname is the red devil. Fitting. I hate this fucking disease. She really doesn't know what her future holds. It scared me, and when I went into treatment this week, I told Dr. Kaplan her story, and he said I'm going to be fine. They see no evidence of the cancer tripping along somewhere else in my body. But, you see, that's the biggest fear once this is over. What if it comes back? I don't know if I have it in me to fight again.
My son Taylor headed home to Idaho, from Texas yesterday, as he finished his summer job there. Once he gets settled back at his dad's, he'll come see me. I'm so proud of him for sticking it out in that heat. And he has grown up so much, I can tell. He's going to go back into the firefighting school in the fall, which he started after high school, but didn't finish. His first semester will be EMT I stuff. It's a perfect career for him. He's strong, brave and handsome! So, he could be on one of those shirtless firefighter calendars (I told him this before and he cringed)!
It's a beautiful day and I hope to be strong enough to take Abbey down to Alki for the open air art fair. We'll have to go after her grooming of course so she looks pretty! Hell, she looks better than me.
Looking back on the week, I had a follow up with the podiatrist on my right foot, which has been hurting like hell. I called Dr. Kaplan over last weekend and told him I thought it was infected, so now I'm on antibiotics for it. My medicine cabinet floweth over now. I get confused on when to take what. I already had an appointment with the podiatrist Monday morning, and yeah, it should be drying up faster, so I'm back soaking it in epsom salt every night and it does seem to be improving, although it will be a year before a complete healthy toenail grows back. Along with my hair.
I must say, for the fatigue level I'm experiencing, I did a kick ass job of covering the conclusion of the Sammamish shoreline master program. Three hour meeting a their city hall Monday night- grueling. I came home and took a nap first, but got a great story. Every single body of water in Washington must develop a new plan every seven years, so they are all scrambling. It's a fascinating topic to me, because it totally effects private property rights on lakes, rivers, and the Sound. Harkens back to my old real estate days, plus the folks up in Sammamish are pretty, shall we say, spirited? Good people though.
Back to cancer, I attended my first support group at Gilda's Club. It was good. I can't say much because it's all confidential, but one very smart, pragmatic lady has stage 4 breast cancer, and now they've found a spot on her liver. She has two small children. She empathized with the fact that I'm on adryamicin - she said it's nickname is the red devil. Fitting. I hate this fucking disease. She really doesn't know what her future holds. It scared me, and when I went into treatment this week, I told Dr. Kaplan her story, and he said I'm going to be fine. They see no evidence of the cancer tripping along somewhere else in my body. But, you see, that's the biggest fear once this is over. What if it comes back? I don't know if I have it in me to fight again.
My son Taylor headed home to Idaho, from Texas yesterday, as he finished his summer job there. Once he gets settled back at his dad's, he'll come see me. I'm so proud of him for sticking it out in that heat. And he has grown up so much, I can tell. He's going to go back into the firefighting school in the fall, which he started after high school, but didn't finish. His first semester will be EMT I stuff. It's a perfect career for him. He's strong, brave and handsome! So, he could be on one of those shirtless firefighter calendars (I told him this before and he cringed)!
It's a beautiful day and I hope to be strong enough to take Abbey down to Alki for the open air art fair. We'll have to go after her grooming of course so she looks pretty! Hell, she looks better than me.
Saturday, July 16, 2011
The most wonderful concert ever
I don't even know where to start. So, I'm combining last night's Eddie Vedder concert with the latest on my health status.
Beauty first. To say I was blown away last night is an understatement. Here was my favorite (living) male singer, in beautiful Benaroya Hall, where no matter where you sit, it's good, and the sound is immaculate everywhere.
The opening act, Glen Hansard came on right in time. He's an Irishman, and totally fabulous. So this morning I was researching him, and he not only wrote the song "Falling Slowly," but he was in the movie "Once" for which it won the Oscar for best original song a couple years ago.
I bring this up, because the high point of the night was when he and Eddie performed the song together with acoustic guitars. My tears just flowed. It's the most beautiful song; it should be criminal. Google it. You'll cry, too.
Eddie's stage set was like his living room. Nice rug, trunks, a reel-to-reel player. The hometown crowd greeted him with ear-splitting applause - great, great crowd. Everything from old PJ fans to "kids."
He sauntered out casually, and went electric with a song called "Lucky Stars in your Eyes," by, I believe Daniel Johnston. That was a surprise to me that he plugged in so early since this is the tour behind Ukulele songs.
Ah, not to worry. The uke came out next with four in a row from "Ukulele Songs," first, "Can't Keep," which opens the CD and is a PJ song, the beautiful "Sleeping by Myself," and equally heartbreaking "Without You," and from 1929 "More than you know." I was mush.
At this point he visited with us. He said this tour wasn't exactly around the world in 80 days, but nonetheless 30 days all over the U.S. and it was good to be home. In fact, he was so happy to be home, he couldn't wait to do laundry. Wait a minute, he says, yeah his wife knows "that fucker doesn't do laundry!" He was so funny and sincere. We were all in stitches. There were also ongoing jokes all night about it being a bad week for male genitalia, what with the lady cutting off her husband's you-know-what and tossing it in the garbage disposal. Eddie said he didn't know if he could do dishes now either, because he can't look at a garbage disposal!
From 1929 to sometime in the 70s he said, he did a lovely Pete Townshend song that Pete did on Uke originally, called "I Like Every Minute of the Day." It was so positive and uplifting, just what I need these days.
It surprised me that we were the first audience to hear "Longing to Belong," live, the big hit off "Ukulele songs." Apparently he needed his cellist, a guy from here named Chris. Stunning.
Eddie plugged in again and did a song I think from the "Dead Man Walking" soundtrack, but he also did two songs from "Into the Wild" throughout the night, which he scored. The final encore included "Hard Sun," which was unbelievable. He and Hansard did it together, and rocked the fucker out, with smoke and the whole rock star scene, first real rock-star moment in the night. That is such a cool song, too. Read the lyrics online. Devastating.
He did a few more PJ song's including "Around the Bend" and "Betterman," (one of my faves) on the acoustic guitar, and a lovely acoustic number called "Rise."
He's funny. He brought out a string section, (including PJ drummer Matt Cameron's wife), and said something about not getting boring, and they whaled out "Luken" a totally nutso rocker off "No Code," before the totally recognizable and beloved "Just Breathe," and "The End" from "Backspacer," PJ's brilliant last studio LP that should have won the Grammy (it was nominated). What's wrong with those fucking idiots?
Lights dimmed. Couldn't see Eddie. But then he went into a very long chant, and disappeared, only to come back to don a banjo for an old Cat Stevens song!! Brilliant! He slipped in the Beatles "You've Got to Hide your Love Away," which he did for the soundtrack of "I am Sam," and the audience totally sang the chorus. He followed with a song called "Fourth of July" by a band he admires called "X," - it was a brilliant song.
Glen Hansard came back out, and here came my other favorite moment. They stood together, center stage, no mics, nothing plugged in, and Eddie had his ukulele. He told us all to be quiet to see if they could pull this off. You could have heard a pin drop. These two men, stood side by side, singing "Sleepless Nights," and it was crystal clear. The audience erupted in madness when it was over. I about died.
That was shortly before "Falling Slowly," and I was a happy, emotional wreck. The boys plugged in again for a few more PJ songs, including "Porch," the only song they did off "Ten." What a shocker that was! "Hard Sun," was the big encore, they left, and Eddie came back for one more song, the standard, "Dream a Little Dream," off "Ukulele Songs."
I had to get this out. I don't think people understand me sometimes and my love for songs. Music has been a soundtrack for my life. Songs mean things to me. I can honestly say, other than the Beatles, no musician has touched my heart and soul like Eddie Vedder and also Pearl Jam. He said he was also glad to be home to get back to "the compound," with the boys, and how proud he was to be a member of that band. Pearl Jam will perform live at the end of September in Vancouver B.C., but they are not playing Seattle. I will be to weak to go up there, I am sure.
So, how am I? It's been a miserable, shitty week. I am so weak it's not funny. Thank God I only have to get A/C every other week or I would seriously want to die. I did want to die Monday and Tuesday. You have no idea how hard this is. Everything is a huge effort. Brushing my teeth, making my bed - victories. I feel amazingly okay today, in fact I even plan to go to the Nordstrom sale! But I run out of steam fast. I only worked 21.75 hours this week, a lot of it from home, but I got my stories in.
I keep telling myself, I'm doing the best I can.
Good news - I'm finally getting into a support group at Gilda's Club (after Gilda Radner). There are only like 13 Gilda's Clubs nationwide. It's all free, per her instructions before she died. They're really nice, but I had to wait because of demand, and they don't want the groups to be too big. I need to talk to other people experiencing this same thing. You cannot comprehend it if you've not lived it. Also, I never threw up all week! However, my big toe is hurting like hell again, and I'm worried it might be infected. I plan to call my doc when I wrap this up.
Infection is bad news with cancer.
Oh holy cow, more good news!!!! My dear, sweet, wonderful Joni is coming to be with me when I have my surgery, which will probably be in mid-September. I can't bear the thought of going through this without an old friend. It's going to be traumatic, I just know. I saw my breast surgeon this week, and he said it's day surgery, but I'll feel like shit for several days. And if I feel less like a woman if they have to take out a big chunk, I'll probably need another woman to cry on.
But last night......made life worth living again for a few hours.
Beauty first. To say I was blown away last night is an understatement. Here was my favorite (living) male singer, in beautiful Benaroya Hall, where no matter where you sit, it's good, and the sound is immaculate everywhere.
The opening act, Glen Hansard came on right in time. He's an Irishman, and totally fabulous. So this morning I was researching him, and he not only wrote the song "Falling Slowly," but he was in the movie "Once" for which it won the Oscar for best original song a couple years ago.
I bring this up, because the high point of the night was when he and Eddie performed the song together with acoustic guitars. My tears just flowed. It's the most beautiful song; it should be criminal. Google it. You'll cry, too.
Eddie's stage set was like his living room. Nice rug, trunks, a reel-to-reel player. The hometown crowd greeted him with ear-splitting applause - great, great crowd. Everything from old PJ fans to "kids."
He sauntered out casually, and went electric with a song called "Lucky Stars in your Eyes," by, I believe Daniel Johnston. That was a surprise to me that he plugged in so early since this is the tour behind Ukulele songs.
Ah, not to worry. The uke came out next with four in a row from "Ukulele Songs," first, "Can't Keep," which opens the CD and is a PJ song, the beautiful "Sleeping by Myself," and equally heartbreaking "Without You," and from 1929 "More than you know." I was mush.
At this point he visited with us. He said this tour wasn't exactly around the world in 80 days, but nonetheless 30 days all over the U.S. and it was good to be home. In fact, he was so happy to be home, he couldn't wait to do laundry. Wait a minute, he says, yeah his wife knows "that fucker doesn't do laundry!" He was so funny and sincere. We were all in stitches. There were also ongoing jokes all night about it being a bad week for male genitalia, what with the lady cutting off her husband's you-know-what and tossing it in the garbage disposal. Eddie said he didn't know if he could do dishes now either, because he can't look at a garbage disposal!
From 1929 to sometime in the 70s he said, he did a lovely Pete Townshend song that Pete did on Uke originally, called "I Like Every Minute of the Day." It was so positive and uplifting, just what I need these days.
It surprised me that we were the first audience to hear "Longing to Belong," live, the big hit off "Ukulele songs." Apparently he needed his cellist, a guy from here named Chris. Stunning.
Eddie plugged in again and did a song I think from the "Dead Man Walking" soundtrack, but he also did two songs from "Into the Wild" throughout the night, which he scored. The final encore included "Hard Sun," which was unbelievable. He and Hansard did it together, and rocked the fucker out, with smoke and the whole rock star scene, first real rock-star moment in the night. That is such a cool song, too. Read the lyrics online. Devastating.
He did a few more PJ song's including "Around the Bend" and "Betterman," (one of my faves) on the acoustic guitar, and a lovely acoustic number called "Rise."
He's funny. He brought out a string section, (including PJ drummer Matt Cameron's wife), and said something about not getting boring, and they whaled out "Luken" a totally nutso rocker off "No Code," before the totally recognizable and beloved "Just Breathe," and "The End" from "Backspacer," PJ's brilliant last studio LP that should have won the Grammy (it was nominated). What's wrong with those fucking idiots?
Lights dimmed. Couldn't see Eddie. But then he went into a very long chant, and disappeared, only to come back to don a banjo for an old Cat Stevens song!! Brilliant! He slipped in the Beatles "You've Got to Hide your Love Away," which he did for the soundtrack of "I am Sam," and the audience totally sang the chorus. He followed with a song called "Fourth of July" by a band he admires called "X," - it was a brilliant song.
Glen Hansard came back out, and here came my other favorite moment. They stood together, center stage, no mics, nothing plugged in, and Eddie had his ukulele. He told us all to be quiet to see if they could pull this off. You could have heard a pin drop. These two men, stood side by side, singing "Sleepless Nights," and it was crystal clear. The audience erupted in madness when it was over. I about died.
That was shortly before "Falling Slowly," and I was a happy, emotional wreck. The boys plugged in again for a few more PJ songs, including "Porch," the only song they did off "Ten." What a shocker that was! "Hard Sun," was the big encore, they left, and Eddie came back for one more song, the standard, "Dream a Little Dream," off "Ukulele Songs."
I had to get this out. I don't think people understand me sometimes and my love for songs. Music has been a soundtrack for my life. Songs mean things to me. I can honestly say, other than the Beatles, no musician has touched my heart and soul like Eddie Vedder and also Pearl Jam. He said he was also glad to be home to get back to "the compound," with the boys, and how proud he was to be a member of that band. Pearl Jam will perform live at the end of September in Vancouver B.C., but they are not playing Seattle. I will be to weak to go up there, I am sure.
So, how am I? It's been a miserable, shitty week. I am so weak it's not funny. Thank God I only have to get A/C every other week or I would seriously want to die. I did want to die Monday and Tuesday. You have no idea how hard this is. Everything is a huge effort. Brushing my teeth, making my bed - victories. I feel amazingly okay today, in fact I even plan to go to the Nordstrom sale! But I run out of steam fast. I only worked 21.75 hours this week, a lot of it from home, but I got my stories in.
I keep telling myself, I'm doing the best I can.
Good news - I'm finally getting into a support group at Gilda's Club (after Gilda Radner). There are only like 13 Gilda's Clubs nationwide. It's all free, per her instructions before she died. They're really nice, but I had to wait because of demand, and they don't want the groups to be too big. I need to talk to other people experiencing this same thing. You cannot comprehend it if you've not lived it. Also, I never threw up all week! However, my big toe is hurting like hell again, and I'm worried it might be infected. I plan to call my doc when I wrap this up.
Infection is bad news with cancer.
Oh holy cow, more good news!!!! My dear, sweet, wonderful Joni is coming to be with me when I have my surgery, which will probably be in mid-September. I can't bear the thought of going through this without an old friend. It's going to be traumatic, I just know. I saw my breast surgeon this week, and he said it's day surgery, but I'll feel like shit for several days. And if I feel less like a woman if they have to take out a big chunk, I'll probably need another woman to cry on.
But last night......made life worth living again for a few hours.
Sunday, July 10, 2011
So this is hell
I had my first dose of Adriamycin/Cytoxan Friday. This is the last phase of chemo, and it's only every other week, thank God, because it's kicking me in the ass. I felt okay, just tired Friday night, but had watery eyes from the Adriamycin. That drug is done with a "push" where the nurse (angel) actually sits there and slowly infuses it through my port. It's bright red and makes you pee funny colors for a day or two. It's important to drink a lot of water to flush it out of your bladder.
Cytoxan is a drip like the old stuff. There are many icky side effects from this cocktail, including nausea which I didn't have at all before, but I've been a little queasy all weekend. However, I haven't thrown up. I'm extremely tired, weepy, and dizzy. I only have to go through this every other week. It's awful. I feel like I just want to die.
My hairdresser took off what was left of my real hair Thursday after work. We left a stubble, so I look like GI Jane. What was left of my real hair looked worse. Like a man with male pattern baldness. It didn't traumatize me as bad as I thought it would, in fact it feels so much better. I even went to the grocery store with nothing on my head because I was hot. I figure if anyone says anything nasty, which no one did, I would simply tell them this is not a fashion statement, I'm sick.
I had a wonderful Fourth of July weekend with Jill and Vivian, and have yet to post pictures but I will. Brad got back from his trip to Montana Friday night, just in time to see me all sickly this weekend. But we did manage a little bit of the West Seattle Street Fair late in the afternoon, and a bite to eat, which I could hardly eat. He brought me back the most gorgeous Pashima in purple tones with little sparkles that looks fabulous with my pretty eggplant sundress I got in Paris. I hardly wear the dress here, because I didn't have a proper wrap for it and now I do! So my ensemble for next Friday night's big Eddie Vedder concert is complete, well, except now I want new shoes! What if Eddie sees me for God's sake!
So, life goes on, but it's hard. I need to go lay down now.
Cytoxan is a drip like the old stuff. There are many icky side effects from this cocktail, including nausea which I didn't have at all before, but I've been a little queasy all weekend. However, I haven't thrown up. I'm extremely tired, weepy, and dizzy. I only have to go through this every other week. It's awful. I feel like I just want to die.
My hairdresser took off what was left of my real hair Thursday after work. We left a stubble, so I look like GI Jane. What was left of my real hair looked worse. Like a man with male pattern baldness. It didn't traumatize me as bad as I thought it would, in fact it feels so much better. I even went to the grocery store with nothing on my head because I was hot. I figure if anyone says anything nasty, which no one did, I would simply tell them this is not a fashion statement, I'm sick.
I had a wonderful Fourth of July weekend with Jill and Vivian, and have yet to post pictures but I will. Brad got back from his trip to Montana Friday night, just in time to see me all sickly this weekend. But we did manage a little bit of the West Seattle Street Fair late in the afternoon, and a bite to eat, which I could hardly eat. He brought me back the most gorgeous Pashima in purple tones with little sparkles that looks fabulous with my pretty eggplant sundress I got in Paris. I hardly wear the dress here, because I didn't have a proper wrap for it and now I do! So my ensemble for next Friday night's big Eddie Vedder concert is complete, well, except now I want new shoes! What if Eddie sees me for God's sake!
So, life goes on, but it's hard. I need to go lay down now.
Saturday, July 2, 2011
Another delay
I've felt pretty crappy all week. Very, very tired. Well, no wonder. My white count plummeted again, so I couldn't start the adriamycin/cytoxan (A/C) yesterday as planned. I got a neupogen shot to bring my counts up, and will start next Friday instead. So, now I won't be done with chemo until August 19 at the soonest. This is the harder stuff, so it's every other week.
My main problem this week is my right foot, specifically my right big toe. It hurts like a mother. Last fall, the toenail was starting to ingrow, so I went to a podiatrist and he whopped a sliver of it off to relieve the pain. It seemed to be doing fine for a while, then the toenail began lifting and beginning to hurt. I was also worried about catching it on something, and it tearing off, which I knew would send me through the roof.
I told Dr. Kaplan, and he had me see a different podiatrist, who agreed it had to come off. So, Wednesday morning I went in. It's a terribly painful procedure. The worst part is the shots to numb your toe first. You don't even feel the nail removal, but once the anesthetic wore off I was in excruciating pain. It still hurts.
It's never hurt this bad before when I've had a toenail removed, but this had some sort of "thing," a bump growing up under it, not a new nail pushing it up like I thought. So, he used silver nitrate to cauterize it, which also hurt like hell. Now it's black and disgusting.
I was in tears yesterday over my blood count, my foot, my brain dead-ness, everything. Cancer is hell.
I'm taking it pretty easy today. Brad is gone to Montana for a week, leaving yesterday. But tomorrow Jilly and Viv show up! They are my wonderful girls from Bend, Oregon (well, Jill and I worked together in real estate in Alaska). I had a connection, so I got us free tickets for a Mariners game tomorrow - vs. the San Diego Padres. We beat them last night 6-0! Go Mariners! So that will be fun. I haven't been to a game since I moved here.
Jill and Viv are staying through the Fourth of July, then leaving Tuesday morning, when I go back to work.
Work is a whole other issue. I'm really getting stressed out over the whole covering Sammamish thing. I was hired to work for the Mercer Island paper, and now I'm covering local government in Sammamish, too, which is a hard beat. And they want to change the format of the paper, combining it with Issaquah since they are so close together. I told my boss on Mercer Island, who I adore, that it's beginning to be too much stress for me. I'm doing the best I can.
I keep telling myself that. I'm doing the best I can.
My main problem this week is my right foot, specifically my right big toe. It hurts like a mother. Last fall, the toenail was starting to ingrow, so I went to a podiatrist and he whopped a sliver of it off to relieve the pain. It seemed to be doing fine for a while, then the toenail began lifting and beginning to hurt. I was also worried about catching it on something, and it tearing off, which I knew would send me through the roof.
I told Dr. Kaplan, and he had me see a different podiatrist, who agreed it had to come off. So, Wednesday morning I went in. It's a terribly painful procedure. The worst part is the shots to numb your toe first. You don't even feel the nail removal, but once the anesthetic wore off I was in excruciating pain. It still hurts.
It's never hurt this bad before when I've had a toenail removed, but this had some sort of "thing," a bump growing up under it, not a new nail pushing it up like I thought. So, he used silver nitrate to cauterize it, which also hurt like hell. Now it's black and disgusting.
I was in tears yesterday over my blood count, my foot, my brain dead-ness, everything. Cancer is hell.
I'm taking it pretty easy today. Brad is gone to Montana for a week, leaving yesterday. But tomorrow Jilly and Viv show up! They are my wonderful girls from Bend, Oregon (well, Jill and I worked together in real estate in Alaska). I had a connection, so I got us free tickets for a Mariners game tomorrow - vs. the San Diego Padres. We beat them last night 6-0! Go Mariners! So that will be fun. I haven't been to a game since I moved here.
Jill and Viv are staying through the Fourth of July, then leaving Tuesday morning, when I go back to work.
Work is a whole other issue. I'm really getting stressed out over the whole covering Sammamish thing. I was hired to work for the Mercer Island paper, and now I'm covering local government in Sammamish, too, which is a hard beat. And they want to change the format of the paper, combining it with Issaquah since they are so close together. I told my boss on Mercer Island, who I adore, that it's beginning to be too much stress for me. I'm doing the best I can.
I keep telling myself that. I'm doing the best I can.
Friday, June 24, 2011
The tolerator
That's what one of the nurses called me yesterday, because I've tolerated the taxol/herceptin so well. Sounds like a new super hero name. But I'm not a super hero, contrary to popular opinion.
I just met with Dr. Kaplan. Next week I start the new stuff, A/C, and it will be every other week, which is called dense dosing. It used to be they did it every three weeks, but Dr. Kaplan said it works better this way, and they seem to think I can handle it.
This means, unless he decides to go for two more treatments just in case the tumor isn't as shrunk as he'd like it to be, I'll be done with chemo August 12. Unbelievable. It's gone so fast, yet it seems like a hundred years ago since my diagnosis.
I was so worried about ending my chemo, for fear I'd never see Dr. Kaplan again. I trust him and love him so much. A respectful love, not romantic mind you. But he reassured me we're not "over."
He told me he is my "point man." Even after the lumpectomy, which will be done by Dr. Beatty, and radiation, Dr. Kaplan will be my doctor for a long time. He said until Feb. 3, 2022. I said "what?" Well, that's when he turns 75 and plans to retire. I told him I plan to retire before he does!
So I feel much better knowing he won't abandon me.
I've been very tired this week and fairly emotional. Anxiety gets to me. I miss Taylor so much, too. He's still in Texas, but he'll be back in Idaho by August and he says he will come see me. There's nothing like a hug from my boy to make me feel better.
I'm looking forward to next Wednesday evening, as I have tickets to a sold out Lucinda Williams concert. You either love her or hate her, and I adore her. Many of her songs are sad and lonely, but lovely nonetheless. Her new CD "Blessed," however, is very positive. She's a wonderful songwriter and cool chick. Can't wait.
Friday, June 17, 2011
Not much new on the big C front
I am in chemo right now as I was last week when I last posted here. Pretty uneventful week, just work and take my pills and sleep. Although yesterday was rough.
They have to give me these shots (neupogen) to keep my white blood count up. I've been getting them twice a week without too much problem. The one side effect is you can get a lot of aches and pain in your joints. I've had a little bit of it before, but it was almost debilitating yesterday. I hurt all over. It was a real bummer. I was in bed by 8:40.
Dr. Kaplan said we'll only do one shot next week, on Thursday, the day before my last Taxol/herceptin infusion.
We talked about what to expect when I switch to A/C, (stronger drugs) July 1. Everyone is different, but he said I might experience more fatigue (great), and nausea. I haven't thrown up once on the Taxol, or needed the anti-nausea drugs, thank God. A/C will be every other week, so I will be done with chemo by the end of August, pretty much on schedule. I just hope I don't spend the rest of the summer hugging the big white bowl. I don't know. He thinks I'll endure it pretty good since I've done so well so far. This whole thing seems to have gone by so fast. It seems like I was just diagnosed - but that was in January. What a way to spend a year.
Friday, June 10, 2011
Making medical history
Yesterday I had my follow up with the surgeon (Dr. Florence) who took my appendix out. He looked at all three little incision spots (his handiwork) and said everything looked good. I can get back to doing some core exercises now although I am still pretty tender down there, which he said is totally normal.
So, I'm in my chemo treatment right now....in my last blog entry I said I only had two treatments left of the Taxol/Herceptin, but actually I have two more after this. June 28 I will have the breast MRI and mugascan before beginning phase II of chemo.
So, here's what's funny. I'm getting off the elevator on the treatment floor and I ran into Dr. Beatty, who is the surgeon who put my port in and who will perform the lumpectomy this fall. He gave me a hug, and I asked him if he heard the latest (about the appendectomy). He said he heard about it, but didn't realize it was me, and OMG, they discussed me in one of their big surgeons meetings where they do whatever it is surgeons do, you know, having a pow-wow on all their amazing cases. He said it sounded like a real mother of an appendectomy (he didn't say mother, but it was inferred). What I have learned now from talking to Dr. Florence, Dr. Kaplan and Dr. Beatty, is that I had chronic appendicitis, not acute which is what most people get (where your appendix just decides to blow). Mine was a slow build up, with the blockage, and it was attached to my colon which is not supposed to happen! So I have a whole new respect for Dr. Florence, who I thought was kind of a douche bag because he has no personality, however, he worked on me twice as long as normal to get it out laproscopically so he wouldn't have to make the big cut and risk infection.
So, I was the talk of the surgeon's pow-wow, and again I am convinced I'm in the hands of rock stars.
Speaking of which, if you follow me on Face Book you will know I was at the U2 concert last Saturday night. It was indeed a beautiful day, the best so far this spring, with Lenny Kravitz kicking off the show. The stage (the claw) was phenomenal; basically an enormous space ship inside Qwest Field.
However, in my weakened state, it took me days to recover. Getting to bed at 1 a.m. doesn't work for me anymore. I layed down Sunday afternoon and I was so tired I couldn't even sleep. Then I got up, ate, got ready for bed and slept for probably 9 hours, and I was still exhausted.
I no longer can party like a rock star, which is distressing for me.
Anyway, I'm okay today, but it's been a tough week. I had to work late Tuesday night and last night, which doesn't help.
I hope to get more rest this weekend. Oh, and my hair is falling out even more. It's getting pretty thin, so I suspect it won't be long until it's all gone.
Friday, June 3, 2011
Back in the chemo saddle
I didn't have chemo last week due to the whole appendix fiasco, but I was back in the chair yesterday. My blood is fine; they even checked my iron this time because I was a bit anemic. I just realized I only have two more treatments on the taxol/herceptin, then they will do another breast MRI and a mugascan (checks my heart).
Then, I head into four treatments of the heavier stuff - every other week. It's called A/C (adriamycin and cytoxan).
After that I gear up for my lumpectomy. Oh yay, another surgery! When they wheeled me in for my appendectomy, I felt like an old hat this time. I was petrified when I had the port put in - this time I was yukking it up with the nurses and anesthesiologist; next thing I know I'm in post-op and don't know why I'm there! Some drugs.
Speaking of which, I got some medical herbs today if you get what I mean. Nice. And just in time for the U2 concert tonight. Yeah, this old lady will never change. And I'm not calling myself old, but let's just say I've lived some life so far.
Thursday, May 26, 2011
Bump in the road
This is unbelievable. Last night I had the worse headache, along with lower abdominal pain. Pain to the point of waking up with it this morning. I called Dr. Kaplan, and he said, now don't be alarmed, but I want you to go to the ER.
I have appendicitis! I just can't believe this. Back in February when I had my first CT scan, they did tell me I had a little phelgmon (I don't know if I just spelled that right, and spell check didn't catch it) but anyway, it's a blockage of fecal matter in the appendix. No biggie, we'll keep an eye on it they said. I forgot about it.
It's back and it's bigger and hurts. But not to the point of my appendix bursting and me going septic. So, I'm here, in the hospital, getting antibiotics by IV. I have to stay overnight, and if the pain goes away, we'll just treat this with antibiotics until I'm done with chemo, which is until about the end of August, then they will have to take the appendix out. They could take it out now, but it'd be risky if there were complications as it would slow down my cancer treatment and there would be risk of infection.
Great, lumpectomy and appendictomy to look forward to in the fall.
I'm beginning to wonder if I'm being punished for being such a brat as a teenager. God only knows.
Right now the worse thing is, I'm starving, and I can't have any solid food. I'd kill for a sandwich.
Other than that, I'm still tired and am beginning to realize I can't do it all anymore. A nurse just came in though, and was surprised that I was a patient - she thought I was a visitor. I guess it was the lipstick.
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