I lost my hat

I went to the audiologist today to talk about hearing aids. I was getting kind of excited about the prospect of actually being able to hear what people were saying to me.  My hopes were dashed this morning.  The cheap pair of hearing aids will cost about 4 grand.  My insurance will cover them, but the doctors office wants me to pay out of pocket for them first and have my insurance re-imburse me. Good luck with that because I'm not sure what hat they expect me to pull that out of.  I wonder what it would be like to just have an extra 4 grand laying around.  Oh well, I guess I didn't really lose anything.  I never had it to begin with.

 

Get Serious

It dawned on me when I was at my oncology appointment and I once again am tipping the scales that I need to get serious with this weight loss thing. I was about 18 months ago and I lost a pretty good amount of weight, around 30 pounds. But I don't think that I can live forever on Atkins or South Beach. I've started putting the pounds back on and my cardiologist isn't going to be any too happy about it when I go see him next month. Yesterday as I was recording my morning blood sugar and pressure readings it dawned on me that it might help to be as meticulous with my diet as I am with other things. I have resisted the idea of a food diary, mainly because of the commitment involved, and the fear of being harshly judged because of it. I think that it's time I get serious and keep one for a month or so. Right now it's just a what am I eating when type thing. I'm not recording how much or anything about what mood I'm in when I eat it. That may come later. So far, it looks like something that could have come out of a dietian's weight loss plan book, but I've only been at it for one day. The foods I eat are generally healthy whole foods. I eat most of them in the mornings. But I'm not drinking water and I drink too much caffiene. It's easier here at the office to do because the computer is on in front of me. I can just quickly jot down what I'm eating. The weekend will be more challenging. The challenge is going to be keeping honest when I really mess up and eat 2 candy bars or something. I will be tempted to not record the. But this is for me to find trends and hopefully that will keep me honest.

Picture Day

When I was small one of the things that I hated was to have one of my brothers or sisters pull on me. I'd be busy, playing, reaching, whatever. It mostly happened when we were getting one of the family photo's taken. All the grandkids would be lined up on the steps or standing in a group in the front yard. Adults would be calling out "Y'all say cheese, cause I'm going to take this picture soon.". Then it would take forever and suddenly someone, one of the older kids from somewhere behind me would reach and tug hard on the sashes to my dress pulling me backwards. I was small and it didn't take much of a tug to pull me down and make me fall into the row of children behind me. It would make me mad and I'd start crying or I'd be turned around howling at them when the picture was snapped. Back then film was made of silver nitrite and was expensive. If you made them waste a picture, you were in trouble, and I'd be in trouble because one of my siblings had misbehaved.

That is what cancer reminds me of. It makes me frustrated and angry. It comes from behind me when I'm focused on something else and grabs me, it pulls on me and leaves me angry, frightened and in trouble for something that I had little control of.

This month has been hard as a rock. The doctor said that he'd noticed it in my blood work. He knew something was up and wasn't surprised when the lymph node biopsy revealed the cancer that was hiding there. Cancer reached from behind me and grabbed my sashes pulling me backwards. I'm frustrated and scared, waiting for one of the adults to scold me for wasting the film.

Bush Bashing

This has happened three times in the past several days. I will be talking too someone about something that is not necessarily inherently political and they will go off into a Tirade about Bush signing NAFTA and how that is at the core of all of America's economic problems....

Just for the record, Bush did not sign NAFTA.

NAFTA was an agreement signed in 1993 by Canadian Prime Minister Brian Mulroney, Mexican President Carlos Salinas de Gortari, and United States President Bill Clinton.

It's true. Google it.

So, it's ok if you don't like NAFTA and/or you don't like George W. Bush. It's even ok if you think that NAFTA is going to distroy democracy as we know it. But get your facts straight. Bush left us with a mountain legitimate cannonballs we could heave at his presidency so pick a valid one. On the other hand, why bother? The incoming president isn't going to be helped or illuminated by complaining about the policies of the last one.

It would be a wonderful break with tradition if we could all try to work together to come up with a solution to the dire straits our country is in.

Let's kiss and make up, shall we?

Green Eyed Monster

I'm not an overly jealous person. I don't burn with envy if my friends decide that they want to go meet up without me. When my co-workers get expensive new cars or great vacations, I don't resent them. But there is one area that seems to get me more than I ever want to admit. Please don't get me wrong, this isn't saying that I wish to deny anyone of what is theirs. I don't want to take it away from anyone else, I just want it too...a lot. It's when I see obviously loving couples, especially older ones who have been together for a long, long time. I want the kind of love that endures through the ravages of time and life. So far, I feel that kind of love has eluded me and I feel it will continue to elude me. Yesterday when I was at Cracker Barrel and an octogenarian+ aged couple came into the restaurant. He had a cane, she a walker. He held the door for her and made sure that she was able to get through the store safely. He helped her into her chair. She made sure the waitress kept his cup of coffee warm and filled. Their obvious care for each other was beautiful to watch. It had me in tears, not completely because it was so sweet, also because I realized one more time that I am unlikely to ever have that relationship. I cried again last night when watching The Sisterhood of the Traveling Pants on TV and saw the scene where Lena's grandparents were alone on the patio, not knowing that Lena was watching them. I want that kind of love. I become jealous when I see the things that I fear that I will never have. I become equally sad and somewhat frustrated when I see people who have the thing I so desire and abuse it, when I see people who belittle and berate their spouse openly, who take advantage of their spouse and don't participate in or contribute to the relationship. It makes me sad, because they are loved anyway, and in a way that I am not. I wonder why those people are capable of being loved, and I am not. In this one thing I have to admit, I have the green eyed monster.

Cinderella is going to the Ball

And, thanks to her dad, she's going in the $400 dress.

The teal one.

Things I have been wrong about

I have been wrong about many things in my life and one of the worst mistakes that I have made is thinking that this house could make a suitable home. One of the things that I will be doing this year, this month is looking for a more suitable place for us to live. I don't know why I always gravitate towards places like this. I'm just going to find something...maybe something a little more affordabe too.

Amazing Post

I read a post by Syd at I'm just F.I.N.E and it was amazing! You simply have to go read it..."An interview with God". Thanks Syd for speaking to my heart today.

Cinderella's Wish List

Cinderella wants a $400 dress to go to the ball in.

She'd better get a fairy god mother.

The World According to Dove Chocolate

"Happiness is the experience of living every minute with love, grace and gratitude."

 

I want to be friends with the people who work at Dove Chocolate!

 

Mind Numbing Fatigue

I stayed home today. The reason was mind numbing fatigue that I have been feeling for a while. Combined with the cold that I have been fighting and the pain (not really bad pain, take an asprin kind of pain) from the Mohs surgery and the generally lousy wet, cold weather. I just couldn't drag myself up. I slept well into the afternoon and woke up long enough to make Lizzie and I some food. Then I napped a little more. Now, I should be sleeping but despite the fatigue, I'm up typing. When I saw my medical oncologist on Monday, he said that it is all part of the diagnosis. I will be fatigued and suseptable to germs. I don't even want to google the diagnosis. I don't want to accept it. I don't like knowing what multifocal IDC, stage 3, grade 3, er/pr-, her2/neu+++, 4/7 +nodes means. I wish I never had to decipher it, and I don't want to be able to decipher the shorthand of this new diagnosis. Indolent is good, but I don't want it to be descriptive of me. I don't want to see my name on the path report. I don't want it to be about me. I don't want to learn the language of this new disease. If I reject the diagnosis in the same way I regected diagnosis' of chronic fatigue syndrome and fibromyalgia, can I make this one go away?

Twice

Two oncology appointments today. There should have been three. I heard the cancer word twice. Maybe it is a good thing that my surgical oncologist cancels. I will be fine when the sores on my face heal. No one should hear "cancer" twice in one day.

Cinderella at the Ball

Cinderella is beautiful in jeans and a tee shirt cutting the grass. She doesn't seem to grasp that. She doesn't see the boys at the drill meet rushing to find her hat, or her gloves or make sure that she has the best rifle, or that her flag is just right. She doesn't see the groups of friends that are with her to hang out at a moments notice. She always feels alone.
That's kind of what it's like when you are an orphan of sorts. She has family, a father and brothers. But they are only sometimes in her life, not as constant as she'd like. I'm here and my brother and sister. I think that she'd feel more whole if we were the nuclear family that she desires. Mom who stays home and bakes cookies. Dad who comes home from the office and reads the paper in the den. Brothers who live at home, or who come over after church for fried chicken. But that isn't what our life has been like. For so much of her life, it has been just the two of us, with friends from church, an uncle, trying to survive. Still she's beautiful, and she doesn't even know how much. She goes to school and church. Flashes the smile, big bright eyes...closes the door...hides the tears... makes everyone believe that we are just fine. "Look at the great jeans I found at the thrift store." "I'll start a fad."

She goes to the ball in borrowed gowns, or ones we buy on the clearance racks...

If they are too expensive we won't be able to afford the accessories...
Those eyes, that smile are the only accesories that anyone ever notices anyway.


Someday she will simply walk away from all of this.

Her study habits will get her away from here. She's decided on Yale this week because they reached out to her. She can get in there, and if we are agressive about scholarships, maybe we can even get it paid for.



I marvel, that anyone can look at those eyes and not see her soul. I marvel that people see the brilliant smile and don't see the tears it hides. I can't understand the people who have left her, abandoned her. How could they simply walk away from her kindness, her humor, her creativity?

I hope no one ever abandons her again. I hope that she will grow to appreciate the beautiful treasure that she is.

More on the World According to Dove Chocolate

"One's best success comes after one's greatest disappointments."

I wish it were true.

Physician's and Profit

It's happened again; it seems that every appointment I have with my Surgical Oncologist gets cancelled. I get called the day or the week before the appointment and I'm told "Dr. S is adjusting her schedule. She won't be able to see you for your appointment on xx/xx/xxxx, but we've rescheduled your appointment to oo/oo/xxxx to see the Physician Assistant, or the Nurse." I'm offended by this really. I had highly aggressive, advanced breast cancer with a poor prognosis. Shouldn't that and my insurance buy me ten minutes with my surgeon once or twice a year? I mean really, If my surgeon had my diagnosis, would she be seen by the PA or a CNA? I don't think so. So why do they think this is acceptable for me? I think the answer lies in Dr. Leap's topic for January 6th's Grand Rounds. In his presentation of his topic he said:

"And if we, as physicians, want to make plenty of cash, are we hypocritical when
we come down on big Pharma? I mean, is everything we do, and recommend,
really evidence-based and in the best interest of our patients? I don’t
know all the answers…I’m just posing the question."

I think this sums it up. I'm almost five years out from my diagnosis, and there are cancers where five years would be considered a cure. Breast cancer isn't one of them. Five years is a good omen, but not a reason to be throwing the cure party yet. Still. it costs less for the PA or the CNA to see me than it does for the surgeon, and no matter who sees me my insurance will be billed the same.

I was offered an appointment (really, directed that my appointment had been changed) with the PA. I told them that I would wait to see the Surgeon. She said the doctor wouldn't have any appointments until Late August. I reminded her that there had been less time between my last normal mammogram and finding multifocal stage 3 cancer. The woman had the nerve to tell me that was why I should keep the appointment with the PA. I told her that someone who's grandmother had cancer can make an appointment with the PA. I think my medical history warrents that if I am going to come it, I will see the doctor. The nurse called me back after lunch. She found an opening in late February and chided me for my attitude against seeing the PA.

I can understand that my Surgeon needs to make a profit. But that isn't always what is best for me. Like, it isn't best for me to take the newest, most expensive proton pump inhibitor because my Gastroenterologist is friends with the pharm rep. The over-the-counter generic proton pump inhibitor works as well as the expensive new brand. In both these cases I have to stand up for myself and what is best for me. But it isn't a fair fight. The Surgeon can refuse to see me and the Gastroenterologist can try to bluff me into believing that I'm getting some added benefit for paying several hundred dollars more for the name brand. Because I won't see the PA, I would go for 20 months instead of 12 between check-ups. Because I wanted the generic drug, I had to put up a fight with the Gastroenterologist and as a result, I'm not likely to go back to that practice. As a patient, I feel beat up and abused by this system. I feel that I am nothing more than a source of revenue that needs to be manipulated to get the most out of it. It would be nice to be treated as a human being.