I was going to write a post on Monday but when the events in Boston occurred it didn’t feel right or appropriate to go on about my mundane week.  My thoughts and prayers go out to all those injured and their families and to those who witnessed such horror.

As earlier stated, my week was fairly mundane.   I did not feel great on Friday – Sunday but not horrible either.   I think the combination of Nuelasta and a lower chemo dose worked.  I have not had to visit Paradise.  I feel stronger each day this week and will be ready for the next onslaught on May 22.

My sister Christine left this morning.  She stayed for three weeks.  She was originally scheduled to stay for two weeks but since my chemo was delayed a week, she stayed longer.  It was great having her here.  It means so much to me that all my siblings will come and visit.  I am very lucky to have such great family.  My friends (and family) have brought meals, sent cards and flowers, bought me great gifts, prayed, knitted hats, texted, emailed, walked my dog, visited, called and performed many other acts of kindness not mentioned but greatly appreciated.  You all are the helpers in my life.

I will end this post with a quote from Mr Rogers.  Even if you have read it, it is always good to read it again.  I am very grateful to all those in my life who are helping and caring for me.  We should remember how many helpers there are in the world.

“When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of ‘disaster,’ I remember my mother’s words and I am always comforted by realizing that there are still so many helpers – so many caring people in this world. ” Fred Rogers

I get a lot of feedback about how much people appreciate the blog.  They look forward to the next post.  The blog makes them feel connected to me.  Well, I want to thank everyone for taking the time to read all the posts.  To those that feel comfortable commenting, your thoughts are appreciated more than I can say.  To those that don’t comment, I  know you are out there sending me good karma, prayers, etc.  I want you to know how much all your thoughts and words mean to me.

There are days that I don’t post because I feel like I would bore you to tears with the details of my ordinary life.  I have tried to keep my thoughts positive because that is really how I feel most of the time.   Just to let you know, I do have moments of deep emotional anguish.  Writing the blog helps me get through some of these moments.  I am more comfortable writing them out then talking about them over and over and over….  I am a “feel it and deal with it” kind of person.

I know there are a lot of cancer support groups out there.  Right now I don’t feel like I need them.  I am so fortunate to have a husband to pull me off the ceiling when I get myself in a tizzy; to have amazing siblings who have started taking turns to come and help me; to have the best friends that feed my body and soul and send me the most amazing gifts.

So, thank you for indulging me and being my support group.

I know I just wrote a post about hair but it is kinda on my mind (not for long.)  About two days ago I was fixing the side burn part of my hair and it came out in my hand.  Well I thought, I won’t need to trim that for a while.  I called for my sister, Christine, who is staying for a few weeks.  I showed her the chunk of hair.  There wasn’t much to say.  It is very weird to pull wads of hair out of your head.  It is amazing how much hair we really have.

Today was a windy day.  I was wearing a hat.  On the walk back from PT (this is the PT who works on my lymphatic system and surgery site as opposed to the PT that works on my pinched nerve.  I am a project.) I decided to pull a little chunk of hair out near the nape of my neck and let it go with the breeze.  I showed Christine where I pulled out the hair.  She said “Oh you might not want to do that as there is a “v” shaped space in the back of your hair.”  I said “Well I can fix that.”  So I pulled another chunk out on the other side to even things out.

I felt like standing there with my hat off and pulling all my hair out so it could go with the wind.  But then I probably would have ended up in the police blotter.  (For my non Bainbridge Island readers, the Bainbridge Review police blotter has some off the wall items that only happen in small towns.) I can see the headline now  “Island Trainer Loses Hair in Massive Wind Storm.  Fined For Littering.”  I kept my hat on and walked home.

One of the side effects of chemo is hair loss.  All hair.  Not just the hair on the top of your head but eyebrows, eyelashes, underarm hair, leg hair and any other place that hair grows, including inside your nose.  Soon I will be smooth as silk.  Unfortunately my head will be cold.  So I have purchased and received as gifts, some hats.  I have modeled them in the pictures below.  I bought the straw one, my sister Christine bought me the red/orange hat and my friend Susan gave me the white floppy one.

I think I probably have four or five days left of my hair.  I am not really looking forward to it falling out but it is going to happen and so I have come up with a list of positives:

1. No more worrying about what kind of shampoo to buy.  Curly hair, straight hair,thickening,,,,,,

2. No more hair products.  Is it a spiker gel day or a soft curl day?

3. No more bad hair days.  It will always be the same length.

4. No more shaving.  Smooth legs and pits.

5. No more mascara decisions.  Waterproof, soft black, black black…..

6.  No more eyebrow plucking.  My friend Roberta bought me an eyebrow kit to recreate mine when they disappear.  While I am officially a “petite arch,” I could create all kinds of eyebrows.  Freida Kahlo, Albert Einstein, Joan Crawford…

7. No more bed head.  My family won’t compare me to Andrew Jackson on the 20 dollar bill anymore.

I will shave my head at some point.  I don’t know when that will be but will know when it should happen.   Scott will probably be my barber.  Unless I am very brave and do it myself.

Earlier (in my first post) I wrote “Lots of people have cancer.”  Even people who write nerdy comics.  Here is an excellent example of someone who had cancer and survived.  The part that I can relate to is the support that the Significant Other offers.  They even get married in the middle of it all.

A lot of people tell me that I’m “great” or “special” because of my support for Loretta during her struggle with cancer.  The way I see it, I’m lucky to be a part of it.  I’m lucky to have her as my best friend.  I’m lucky to be able to go home to be with her.  I’m lucky to share her life with her.  As awful and scary as this cancer may be, it is part of her life and I am still lucky to be part of it.

I recently asked her to marry me.  She said she couldn’t because she was already married.  Lucky guy!

I kept waiting for the call that said it was all a mistake.  I knew deep down that it was not going to happen.  But maybe it will be like the movies and I would get a last minute reprieve…  I wrote this when I first started the blog and didn’t finish it.  Below is the rest.

As we all know, that was not the case.  The script was not written with a last minute reprieve.  Or was it?  A “reprieve”, in it’s noun form, is a cancellation or postponement of a punishment.   While I in no way think my cancer diagnosis is any sort of punishment, maybe it is some sort of a cancellation.

I am cancelling a life of cancer for a life free of cancer.  I don’t even want to think about the ramifications if the diagnosis had been made any later than it was.  I am cancelling aspects of my life that need to be changed in order to deal with an ever changing life script.  Dealing with the ever changing script of my life is a huge learning process.

I am learning that not having control over every aspect of your life is, at times, overwhelming.

I am learning how to ask for help without feeling like a bother, or high maintenance, or a pain in the neck, or a whiner, or whimpy.  I could go on and on but I think you get the point.

I am learning that too much internet searching is not productive, mentally or emotionally.

I am learning that I am my own best advocate.

I am learning that I am so lucky to have access to such outstanding medical care.

I am learning how truly and deeply loved I am from my community, friends and family.

So I think that a reprieve was written into the script of my life.  I think the script will again be rewritten and the reprieve will be replaced by permanent life changes, life changes learned from my reprieve.

You know, normally when you or you’re loved one gets a cancer diagnosis you can turn some of the activities that aren’t so fun into ones that are. Bingo is a perfect example. You have a bunch of procedures or diagnoses which are kept on a sheet in a random order and when you get one or do something like “group breast exam” you get to take your dorky looking magic marker for grownups and place with great gusto a splotch on your sheet. See? Something fun to do with cancer. Normally you can start small, say with “first mammogram” or “headache”. Over time you realize that something bigger is going on behind the scenes of the clinical presentations. So you go to the doctor and get “the news”. Then you can go from there. You are gradually brought into the game. You begin to see that some of your splotches are going to make something of themselves and you’ll eventually win that pack of glow in the dark earrings you’ve been secretly coveting since you were ten.

But with my mom, she didn’t even have time to mark “surgery part 1” or even “the initial worry”. All of a sudden we had a Cancer Bingo Card in front of us with no warning of any kind and a bunch of splotches already filled in. Kind of like when someone decides they have to go to the bathroom and hastily puts their card in front of you with a brief “Here! Play my card for this round!” before scampering away with everyone staring after them. Then you look down and you don’t see your bingo card, you see someone else’s. It’s not your cancer, it’s something that was just thrust upon you. You don’t even know if you care enough to really make sure that the card is won. It’s not yours, right?

Eventually you start hearing horrible noises coming from the bathroom and you realize that the person is probably not coming back to the game anytime soon. Eventually you look down and see a path to Bingo victory in the splotches of the card you never wanted to have. And eventually you start playing the game as if it were your own.

Asking your spouse if any article of clothing makes anything on your body look big is just a no win situation.   It is sort of unfair to put your spouse in the precarious position of having to answer such a loaded question.  You can see the fear in their eyes, “Oh God, not this question….anything but the “does this make my _____ look big”  question.  Today I had the unique opportunity to ask Scott, “Hey does this shirt make my drain look big?”

I have a drain that comes from the depths of my chest and out through my arm pit.  It is a lovely bit of tubing that ends in a bulb like thing that keeps the swelling down.  It then attaches to the “Oh so sexy” bra that I got after surgery.  There is a velcro loop that keeps the bulb from swinging around and pulling the tubing out.  I don’t think that they sell these at Victoria’s Secret. I have to keep the drain in until there is less than 30 cc output in two consecutive 24 hour periods.

Anyway, we were going for a walk (yes I ventured out!) and before we left I asked the loaded question any women would ask “Honey does this shirt make my drain look big?”  Scott looked at me, stared fear in the face and without skipping a beat said “What drain?”    Gotta love a guy who makes you feel beautiful!

When Scott and I got married almost 30 years ago (yikes we were only 5 when we got hitched) we wrote our own vows.  There was one secret vow that he must have whispered.  It is the one that the husband promises to clean and empty and measure the goo coming out of a drain which is coming out of his wife’s armpit after being diagnosed with breast cancer and having A LOT of lymph nodes removed.  I swear I never heard it.  He must have said it because, that is what he did tonight.

He ever so carefully stripped the line and then emptied and measured and recorded the output.  He gently pulled away all the old adhesives and replaced the dressings.   He did it like a pro.  He never waived.   He did it after waiting with me while I was injected with a radioactive tracer.  He did it after watching me walk up and down the hall waiting for the tracer to do it’s thing. He did it after waiting with me before surgery.  He did it after waiting four very long hours, by himself, during the surgery.  He did it after spending the night with me, in the hospital, on a ridiculously short and narrow bed.  He did it because he loves me.

Even though I missed hearing that vow then, I certainly heard it loud and clear yesterday, today and tonight.

Tomorrow can’t come soon enough.  Loretta gets to have another chunk or two removed and we get to know if she is clear or not.  It’s a big day.  If pleasant thoughts were enough to cure cancer, Loretta would be cured.  There are so many people who are willing to help and we will both be eternally grateful.  It has meant the world to us both.

To help all of you who want to know how it is going I will be adding posts to this blog throughout the day.  I will update you whenever something interesting happens.  Remember that “interesting” is entirely up to me so it might be something I find stuck to my shoe or something about Loretta.  It’s hard to say what will happen.

Thanks for your support.