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.
Sunday, October 30, 2011
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.
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