Saturday, January 31, 2009

Today's post is about human rights

http://www.youtube.com/watch?v=20M9ywn7Zgs

The Christian Anti-Defamation League is feeling attacked by gays because of their anti-gay positions. Their website lists the top ten attacks that have happened as a result of the passage of Prop 8. Let's see how gays are bashed and attacked. You judge who is getting bashed more.

The saddest part of all is that these people call themselves Christians. I can't think of a single parable from the New Testament that would convince me that Christ would condone their actions.

If you are straight, if you are Christian, or any other faith, or lack there of, speak up for gay rights. They cannot do this alone. It affects all of us when people can be treated this way. Email your representative. Go to the Christian Anti-Defamation League website and give your opinion. Encourage your church to be open and affirming. Speak up when acquaintances and coworkers make derogatory remarks about gays. Don't hide the fact that you have gay friends and family. Take the high road and speak out for compassion and equality.

Friday, January 30, 2009

StarDate April 3rd, 2008

My clinic visit is Feb. 29th. And now I wait for surgery, April 3rd. I push breast cancer out the door and go about my life. The highlight is a business trip to San Francisco combined with a weekend of visiting friends. San Francisco is like diving into a swimming pool of endorphins. I love the views, the neighborhoods, the restaurants, the shops, the cable cars, the F line. We find fantastic food, visit Sonoma, the coast and go buzzing up and down the hills in the city. I hold on to the high after I return, knowing I will need something to keep me up.

April 3rd arrives. I get to the hospital early because I need preparation for the lymph node biopsy that they will do during the lumpectomy. Then surgery gets delayed. Finally, around 2pm, they start to get me ready for the operating room. By this time I am famished since of course I wasn't allowed to eat. The surgeon stops by. Surgeons are quite chatty (sarcasm there). "Ready?" "Yep". As in, I was ready 3 hours ago. Then the anesthesiologist stops by. He takes a careful history and is very thorough. I'm impressed. I'm also surprised at the baby face. Boy is he cute.

The surgery happens, I wake up in recovery and I hear the nurse laughing. Then she says to me "Don't worry, people say the funniest things in the recovery room." But she won't tell me what I said.

I go home and pretty much go to sleep with my painkillers, who are my new teddy bear. The phone rings and Jim takes care of it each time. The next day I am doing better so when one friend calls I take the phone. Her first words, after how are you, are "So I hear the anesthesiologist was really hot." "Where did you hear that from?" I remember thinking it but I would never have said that out loud for my husband to hear. She giggles and says "Your husband".

Oh boy.

Thursday, January 29, 2009

do you have a breast coordinator?

By now just about every woman who has had breast cancer who knows me has contacted me to give me support. I'm surprised there were so many and I'm so amazed at their stories and support. For the sake of their privacy, I won't mention their names here. But you know who you are and how much I appreciate you. I almost feel embarrassed to give them the details. All of them had much more serious conditions than I had and all had more aggressive treatments. I start to tell them I have "baby cancer" since mine was caught so early. That doesn't sell. "Cancer is cancer and this will change you." The best advise I received was "Surround yourself with people that make you feel good. Even if you can't explain why they make you feel good. Then, walk away from everyone that makes you feel depressed or negative. Don't ask yourself why. Go with what you feel from a person and just do it." That advice put everything in perspective for me and worked every single time. Thank you Mary. You are one of the wisest women I know.

Next stop - a visit to the hospital breast care clinic to meet my health care team. I take the advice of one friend and bring along a woman friend who has survived cancer to listen, ask questions and take notes. So... my husband Jim and my friend Peg meet for the first time and off to the clinic we go. They're about to bond but they don't know it yet.

We're in a room with a nurse who explains quite a few things to us. She tells me to get undressed and that she is going to return with my breast coordinator.

Peg - "Breast coordinator? Well!" doing an excellent fake "well aren't you special" body language wiggle. "I didn't have a breast coordinator. What does a breast coordinator do?"

Jim - "Well Peg, they come in pairs you know. So they have to stay coordinated." I look down at my naked breasts and find myself thinking "No wonder I can't find a bra that fits right. One is bigger than the other. It's all due to the lack of a breast coordinator in my life."

All three of us are laughing so hard we're almost on the floor - which of course is when the nurse returns with the rest of the team. Needless to say, they didn't expect to find the three of us laughing our derriere's off. We tried to explain but they didn't get it.

Peg does an amazing job. She asks great questions, takes notes, TYPES them up and gives them to me. My god. A personal cancer assistant. She was fantastic and I love her for all her support.

My lumpectomy gets scheduled for April 3rd, I'm given the Big Cancer Book and a gazillion business cards and phone numbers and they send me home. The surgery is about a month away. But don't worry, we'll fast forward soon.

Wednesday, January 28, 2009

Feb. 20th, continued

In the last post, I said I would talk about my health care team. But wait. The day isn't over. I leave the doctors office, debating what to do. Go back to work? Or go home? I decide to go back to work. I feel fine and I know I will be out of the office a lot in the future. I call my husband, tell him the "good"news and not to worry, then head to an important meeting with a customer who spends millions.

When I return to my desk, I tell my boss and my staff. I tell them it's ok to tell other people. I work with lots of people and I will be out a lot. So there really isn't anyway to avoid telling folks. The most difficult part for me is I am the type that likes to give support, not receive it. I always need this strong face. But this time I realize, it's time to accept the support of other people. I'm too drained to contact friends or family. The only call I make is to our friends in California - to let them know that that we are not going to be on the plane the very next day. I knew I would just worry the whole trip. Thank goodness for Southwest. I love that you can just rebook with no fees.

The day ends, with just me, alone. The whirlwind has died down and it's quiet. I write this poem and call it a day.

February 20, 2008 Wednesday

Today I learned I have breast cancer
I told people
They were sad. Shocked.
Some cried. Some hugged me.

And now it’s quiet.
I haven’t told everyone yet.
I haven’t told Ted or Jim’s family
I can only do so much of this at one time.

And now it’s quiet.
The phone isn’t ringing.
No emails.
Did they all go back to their lives that quickly?
I’ve done it when I’ve heard bad news about someone.

An appropriate five minutes of mourning.
Thank God it’s not me.
Push it away so I can’t feel it.
And go back to what must be a very important problem.

Now it’s my turn on the lonely side.
The side that you can’t know
Until you are here.

So I’ll keep a journal
And see where the road goes

Tuesday, January 27, 2009

time for a commercial break

http://www.youtube.com/watch?v=SQJ5UsBBuJY

Just can't escape it. We interrupt our mini-series to bring you Happy by Catie Curtis.
After my diagnosis, my husband knew that I would be listening to a lot of music to ease the stress. So he bought me a pair of Bose earbuds. $100. Not bragging. More like, am I supposed to get these insured? It's like wearing a symphony hall in your ears.

Thanks Jim. I love you.

the verdict

Feb. 20th. I call my doctor's office in the morning and ask them to get my test results ASAP. I work, wonder, work. Finally at 11am my phone rings at work.

Did anyone call you about your test results?
No.
Can you come in to visit the doctor? (Note: this is never a good sign. Doctors don't make time for face to face visits if you are healthy)
Sure. What time can I get an appointment?
Anytime that works for you. (Ok. Double Note. This is not a good sign at all).

Of course, now I can't think of anything else. I say "Now. I'll be there in 20 minutes."
I leave a note for my work group and head to the clinic.

I'm escorted to one of those little rooms. A little background here. I love my doc. But her assistant is a drill sargeant. Never smiles, always rushes, doesn't seem to care what ails you. Not rude. Just- brusque. I always feel like she doesn't believe that I'm sick. Her name is Maria.

Maria walks in and she is crying. Oh CRAP. It's so bad, it's making Maria cry. I didn't know Maria could cry. Now I am wondering if it would be faster just to call the morgue. Do they close at 5pm like every one else? I'm watching her go through the usual vital signs. She looks at me. I'm silent. She says "You know I can't tell you." Yea, I know.

NOW I'm worried. I was ok until Maria cried. I'm waiting and waiting. Then I notice the pathology report in the little box on the door. Being the nosey busybody with Chicago ethics that I am, I pick it up. I'm a scientist, right? Certainly I can read this and get some reassurance. After all, I spent all of Feb 19th educating myself on breast cancer. That must make me some kind of expert.

Intercystic mmmmmmmmmmm carcinoma....OOPS. My doc is coming, quick, put it back and go in the room.
My doctor comes in balling her eyes out. Oh my God. First Maria, now my doctor. How long do I have? Will I get home for supper?
She starts to talk "I can't believe this, I just can't believe this. I really did not expect this. I feel so terrible."

Unexpectedly, I jump up and put my arms around her to console her. She's a wreck. I tell her "It will be ok, don't cry."

Hey... wait a minute. Uh.... something feels a little backwards here. I pull back and say "Ok, I think we skipped a part. I am going to be ok right? Right?" Please tell me right.
She pulls herself together and almost with nonchalance says "Oh you're going to be fine."

Me - "Ok. So... can we move to scene II where you tell me what is actually wrong. Let's just read it off that paper in your hand and you explain it to me. Then we'll make a plan."

She tells me I have intracystic papillary carcinoma. An extremely rare breast cancer but the best kind you can have. It almost never spreads, grows slowly and almost never reoccurs. My lump was so small everyone was amazed I could feel it. So it was caught very early. She described the treatment and emphasized "You will NOT die from this. You'll die from something. But not from this."

The conversation ends with me letting her know that maybe walking in to see a patient crying her eyes out might just scare someone.

In retrospect, it all seems hilarious. But at the moment, I didn't know if the parachute was going to open.

Next. Jude meets her health care team. You're going to be jealous. My friend was. A nice song to end on.
http://www.youtube.com/watch?v=MgZ_tu8s5Wk

Monday, January 26, 2009

The lump that glowed in the dark

I go in for a diagnostic mammogram. These days, they don't use film. An image appears on a computer screen. The image appears slowly, moving from left to right. There it is. It's glowing bright as day. I'm sure this has something to do with how the image is made but none the less it is striking. What is it's source of power?

My doctor calls the next day. She reassures me again that most lumps are benign. And this one is very small. But I should go for a diagnostic ultrasound. Ok....... Google here I come. I go in for the procedure. I meet the radiologist. She has her left hand in a cast. Part of the procedure involves inserting a needle with some dye. I ask her if she is right handed. Yes. I ask her if she can do this procedure with one hand. Yes. So off we go. The room has three people in it.

I can tell from the grim look on their faces and how they avoid me that this is not good. The screen shows swirls of color around the lump. I had already read that this means the lump has blood flowing to it. Which means it can grow. A senior radiologist comes in and says "I'm just going to talk as if you are going to have this done. We need to remove part of the lump and do a biopsy." They describe in great detail the procedure and the appointment is scheduled.

At this point I begin to wonder how many steps are in this process. We are at appointment #4 coming up. The time between appointments is only a few days. But each minute is a year while I wait.

The day of the ultrasound biopsy comes. Lots of local anesthesia, a machine to suck up liquid (kind of like those ones they put in your mouth at the dentist) and the same wounded radiologist. She's very nice. I'm in one of those lovely hospital gowns. Who designs the patterns on those anyway? Or the style for that matter? I think they are specifically designed this way so no one would dream of stealing one. But they do cover me with blankets that they keep in a warming oven. This part I like.

There are residents watching. I get the feeling everybody knows the answer before the biopsy. I should point out this is Feb. 18th and I have already informed the staff that my husband and I have airplane tickets for California on Feb. 21st. The radiologist slips and says "Hmm. Well, you could still go. We couldn't arrange anything else inside that week." Anything else? Like what?

I ask how soon the results will be in. She says Feb.20th, call my doctor first thing in the morning.
Two days. More waiting.

Believe it or not, the next post will be curiously humorous.

Sunday, January 25, 2009

January 2008 A story begins

I'm about to tell a story. Sadly, I kept only two exact dates for this story. Feb. 20th and April 3rd. The rest never made it to the calendar.

I go to the doctor for something. Can't remember what. I think something routine. About a week before the appointment, I find a strange lump in my breast. Hard and small, like a rock, buried deep. When I was younger I had so many lumps my doctor told me I didn't have breasts, I just had bags of marbles. The lumps always came and went, so I just ignored them. They were normal for me. But this one didn't feel normal. My doc actually thought she felt three lumps.

My doc, being the fantastic person that she is, said "Well, I know you know most lumps are nothing. So we could wait and see if it goes away or we could send you for a diagnostic mammogram." I had just had a mammogram 10 weeks before. This is when I learned that there is a difference between regular mammograms (called screening mammograms) and diagnostic mammograms. I said "Let's do the mammogram."

And now you get to wait. I had to.

Sometimes it is tonight

It is 3:45 a.m. Both the dogs conspired and demanded to be let outside. This is becoming more common. I can't blame them. It's the dead of winter and with all the snow and the yard light, it's quite bright outside. We have two acres and if they see anything move, that must mean it is time to go outside. It's incredibly cold, which adds to the feeling that time has stood still out there. Will the frozen tundra ever go away? I'm not in favor of global warming - just two acre warming.

Each day there is more daylight. I actually left work in the daylight. At least I think I did. Or it could have just been my uplifted spirits now that Obama is in office.

Could someone please shut up Rush Limbaugh? He was better when he was on drugs.
Thank goodness the dogs are so unaware of world affairs. It must be why they are always happy.

Wednesday, January 21, 2009

It felt like just yesterday

Today I was lucky enough to have lunch with three amazing women that I have known for twenty years. We all used to work together. Three have moved on to other workplaces. Each of our lives similar, yet different. I kept in touch with Lisa, who kept in touch with Janet and Chris and we decided it was time to all get together. Our kids are somewhere between early school age and mostly grown, we talked about menopause, aging parents, the joy that Obama is now our president, exchanged stories and whereabouts of other friends, and laughed hilariously at all the crazy things that have happened in our life.

It was like they never left. The only sign of aging is their wisdom. Their humor is more delightful than ever. And we vowed to get together again soon - because there was so much more to tell.

Tuesday, January 20, 2009

finding our light

this moment we call now
slips right through our hands
and even though the clock can count its precision
we experience time at different rates
slow
fast
sometimes both
the past and the future
steal the only time we are truly alive
now

in meditation we attempt to stay in the moment
thoughts come up
we let them go
soon we realize we are sitting in stillness
a lens looking in on our own life
watching the parade
we try to deny our demons
but they are still there
we try to shoo away our demons
but they come back
we can tame our demons
by being present with them
they grow smaller
as we simply sit with them and acknowledge them
eventually
they evaporate away
and we find our soul
cleansed and renewed

Saturday, January 17, 2009

Turns out it wasn't today

We have yet to see my brother and his family for the Christmas holidays. So we made plans to meet halfway between our respective homes, at a restaurant. I get there and they aren't there. Waiting, waiting. I give them a call and whoops, it was supposed to be tomorrow.

Today was all about misplaced, mis-spaced and mis-timed. I can't find my headphones. That may not sound like a big deal but they were $100 Bose headphones. Can't find Ted's Best Buy gift card that he got for his birthday. Is there a message here that I am supposed to clean my house?

On the plus side, my son and I had a lovely time chatting away. For a twenty year old, that is saying something. Always looking for the silver lining.

Thursday, January 15, 2009

Reconnecting with old friends

Suddenly my life seems to be a whirlwind of reconnecting with friends, some that I haven't seen in 15 years. We've definitely grown older. And wiser. We appreciate living in the moment. We aren't afraid to express our joys or our fears. We aren't afraid to love one another. Do I wish I had my twenty year old body back? Yep. Do I wish I had my 22 year old memory back, when I could recite every lecture from each school day? Yep. But I don't want back the fretting over who I will be when I grow up, will I be successful, who am I , who do I have to be?

I'm just me now. I like who I am. I still change. But the change is fluid and welcome. I find people more amusing than irritating, yet I have no patience for bullies and bigots. People over 40 should behave like civilized grown ups. So that leaves out Ann Coulter and Bill O'Reilly. I really resent that they are allowed to incite hatred in others.

There I go. Digressing. Most people are good. They should stop giving the idiots attention.
Call someone you haven't talked to in years. You might be surprised.

Tuesday, January 13, 2009

I wish it was not today

Today I learned that a friend has cancer. She is the wife of a man that I worked for many years ago. They were both an amazing couple with wonderful children. They were great parents, always fun, loving, generous and kind. Helen is the eternal optimist and the most wonderful mom I have ever known. I always admired her and wanted to be like her. She has a magical smile and a twinkle in her eye.

She found out just before Christmas and had surgery the day after Christmas, which happened to be her birthday.

Never delay being alive. Don't delay loving someone, hugging someone. Don't assume you can call that friend next week instead of today. It is always today. That is all you will ever have. Be alive now, with all it's pain and risk. The road to happiness is paved with everything and anything that can happen in life. Live in the moment. Be present for your life.

2009, The Odyssey

On Sunday I decided to go to church. Now, this may not sound like a big deal to you. But I have not been to church since I was about twenty. I'm not much of a Christian. Too many inconsistencies and mysteries for one as analytical as me. On the other hand, I am convinced there is something - someone - some force - that has a spiritual nature. We are not an accident. We are not alone.

I went to the United Church of Christ as they fit my liberal leanings. I was pleased with how joyous and welcoming the minister was. The sermon was uplifting. A far cry from the fire and brimstone of the Southern Baptist church of my youth. Remarkably, he talked about the first time he met a transgendered person and how that challenged his ability to truly hear and welcome this person. He compared it to welcoming learning a new language. Why is this remarkable? Because I have met, via the Internet, a young transgendered person who is truly a gifted writer and has a wonderful soul. Hard to know how the minister knew just how to speak to me.

And in one week, the church has a potluck for folks who want to discuss how the church can advance the rights of LGBT members of society. This is my kind of place. Where they focus on everybody's family.

Saturday, January 10, 2009

and the days will get longer

Goodness, Christmas has come and gone. I tend to go into silent hibernation at this time of year. It's too dark and cold to have thoughts. All I crave is warmth and snuggling. And deep sleep.

Tomorrow I got to the sleep clinic for a sleep study. I have a lot of problems sleeping. So they will attach wires to my brain and body and see what goes on inside.

At least I get to go to warm places in my dreams.