July 15, 2014

Phil wasn't feeling the best today, so I decided to take the dogs and go down to the beach.  It was hot.  Hot.  Even for me it was too hot.  I don't know f I acclimated to Washington weather so well that a slight spell of warm weather breaks me or what.  Regardless it felt good to get out of the house and outside.

I sat by a table giving the dogs to option to sit under the table I the shade.  Bear especially seemed to appreciate the gesture.  He spread and only moving for the occasional drink of water.  Harley was  fine and sat under my chair most of the time unless his protective skills were needed to bark at a dog walking by completely ignoring terriorist.  I think we stayed a little too long as I think I came home with a case of 'too much sun'.

I wish Phil could go with us to the beach, but he's not fond of the sun, nor is the sun friendly towards his chemo skin.  He also uses a wheelchair now and that is not easy at a beach.  Just one more thing cancer drives a wedge into. 

Thursday, July 10, 2014

 

 

What happens when the caregiver is running out of steam and on the verge of a breakdown?  I wish I knew because I am at this point.  I'm tired.  Exhausted.  I can't sit in another doctor's office and listen to the latest 'plan' for Phil's cancer.  He's been on everything and every combination of everything.  In the last 10 years Phil has not been in remission.  He has literally been fighting cancer, alive and kicking in his body.  Which means I have been caretaking for as long.  He sees his oncologist next Friday where we'll learn the results of the latest pet scan.  Oh boy.  Where is the cancer settling comfortably into now. It is so unfair.

 

I get envious when I read on WhatNext, the American Cancer Society forum about people who are in remission, or celebrating there five year mark of remission and are now considered to be cancer free.  Not cured, as there is no cure for cancer.  Phil on the other hand has never even been able to say he's in remission and it seem unfair to both of us.  While cancer does reside in Phil's body, it certainly effects both of us.  I don't know how other caregivers handle it.

 

I would love to be able to go away, by myself, and sit on the beach for a week and hibernate.  Soak up the vitamin D and have nothing to do but select what, off my Kindle, I wan to read next.  Maybe sit and read all 6 of Jane Austen's novels during the day and watch the movies at night.  As I said hibernate.  Alone.

 

I don't want to go the dr. appointment.  I don't want to hear whatever Dr. Ingber has to say.  I have heard it all before a hundred times.  I don't need to know where the cancer has spread to this time.  I already know that it has, so why go through the torture of hearing it all again.   I do go so I can be there with Phil to support him so he doesn't go this alone.  I am his rock.  But I am crumbling under the stress and heartache.  How can I help him when I can't even help myself right now.  We'll go to the appointment and hear the latest developments and I will cry while Phil sits stoic.  Afterwards we'll sit in the car and talk and then go to Johnny Johns for lunch.  Phil will eat, and I will nibble at the cheese in my sandwich.

 

Stress is not becoming on me.  I haven't been to see my mom in three weeks because I just can't.  For some reason the thought of driving out there to see the shadow of her is depressing and I can't do it.  Does this make me a horrible daughter?  Probably.  But adding one more thing to my list of people to take of is overwhelming to right now and I can't do it.

 

Tonight I have book club.  I'm looking forward to going as it means I get to be around a group of women I really like and enjoy.  Tonight we are playing cards from Jane Austen's books, and I volunteered to teach everyone Whist, which is the fancy English name for hearts.  I played hearts on many a Boy Scout camping trip, so I had to job my memory a bit and read up on how to score Whist which is different than scoring Hearts.

 

Sunday I have a costuming event.  Celebrating Bastille Day with a walk through the botanical gardens and then lunch at a French café.  A perfect day and I look forward to it.  These costuming events are my getaway from cancer activities.  I try to make as many as I can in order to keep my sanity.

 

I feel that I am at the end of my rope and have nothing and no one to hang onto.

 

 



Tuesday, July 8 Part II

My Family.  They are the most important people in my life and I love each and every one of them to the moon and back.  My rocket scientist aka Phillip.  Dylan aka Denny aka Denny Goose.  Zachary aka Zak aka Sugar Pop.  Sheila aka the beautiful one.  I am so blessed to have them.  Without them I would be an orphan.  Literally.

Zak, Mari, Dylan, Sheila, Phil

Zak surprised me this past weekend and told me he would like to attend a costuming event with me sometime this year.  I was touched beyond words.  You see Zak has found a lot of humor in my costuming life and has a hard time understanding my love for it.  For me it's a time for escape.  Escape from cancer and a time to time travel into another world.  People all costume for different reasons.  Some people are simply costumers, like me.  Some take it a lot more seriously and do reenacting, not me.  For me it is a time to be with friends, living in another time period, having fun.

I love looking at the calendar and seeing what is coming up next and what will I wear.  Next weekend is a Bastille Day tour of the botanical gardens and then tea at a French bakery.  Perfectly lovely.  The middle of July is a Picnic where we are to come as our favorite fictional character.  Anyone who knows me knows that Cinderella is my all time favorite fictional character and Mattie Mae is making me the perfect Cinderella dress--I can't wait to see it. 

Costuming keeps me sane.  It gives me reason in my life when it seems there is no reason to my life.  I don't do all eras.  My favorite times to travel to are Regency, Edwardian, Georgian, and now the 1940's a bit.  I do take pride in my costumes and try to always look good, even if I may not be using fabrics that are era appropriate.  I do it for the fun of costuming not reenacting.  I've had a few eye rolls from re-enactors repulsed by my dresses and fabric and my response to the judges is pretty much "if you spend as much time looking at yourself in the mirror, maybe you would look as good as I do."  Thankfully costumers are a friendly fun group and we love looking at each other and seeing who is wearing what.  Fun is the goal at any event. 

Back to Zak.  I don't know what event he will attend nor what he will wear, but I look forward to him seeing what I do.  He has seen me in a few costumes and while he thinks I look pretty he has no idea what on earth happens at a costuming event.  I cannot wait to introduce him to my costuming world.

I hope that sometime when Dylan and Sheila are here there might be a costume event that we can attend together.  I know they would love dressing up in costume and having a grand time with me.

Until next time  .  .  .

Tuesday, July 8, 2014

Surgery Day .  .  .

 

 

 

The day cancer entered our lives, lives on forever in our lives.  Day to day cancer surrounds us and everything we do.  It never leaves.  Never.  Ever.  In the past ten years Phil has been in remission one time and that was right after his first surgery and chemo.  We were so naïve then we had no idea what cancer was, nor how it progressed.  Ignorance was bliss.

 

I still remember the day we learned the cancer was back and feeling like we had been cheated.  This was not supposed to happen, after all he was in this magical state of remission and we thought remission was equal to cancer free.  Again, ignorance is bliss . . .

 

Today in the pre-op room the nurse was talking to us and make the comment that we seem to be pretty calm.  I told her we'd been through this so many times we know what to do--bring our toys and entertain ourselves while we wait.  Phil is playing on the Surface Pro 3, and I have my laptop and Kindle Fire.  I was too lazy to go around the house grabbing the ipad and tablet too.  Odd that I use different devices for different needs.  Social media consumerism at it's best.

 

It does scare me that the cancer will not go away. Will not go into remission.  That it is so aggressive it fights to take over Phil's body,  We are now in the surgery waiting area and surgery will be at 6:30pm, given that the surgery before him has no complications.  One thing we've learned is to not look at the clock and simply take time as it comes.  When waiting for surgery the clock ticks slowly.

 

When we got married I know we never imagined that we would spend the majority of our married life in the hospital or in a doctors office waiting to hear test results.  We have yet to hear good test results.  I've grown somewhat immune to the results, although I don't like to hear them they don't get the same reaction from me they once did. Does this mean I no longer care?  Of course not.  It means I am protecting myself with a huge wall of courage so I can be brave and strong for Phil.  When I need to cry I go off alone to Salt Beach or to Magnuson Park and walk and cry alone.  I take the dogs with me so I'm not really alone and sit and cuddle, burying my face in Bear's furry coat while Harley tries desperately to lick my face to make me feel better. 

 

I'm not strong.  I'm not a saint.  I hate cancer.  I am afraid o cancer.  I hate what it has done to Phil and to us.  This tumor in his bronchial tube esophagus is so scary and aggravating.  The cough, from it, is loud and ear shattering.  Loud doesn't exactly describe it.  Ear Piercing doesn't really do it justice either.  People stare.  People glare.  People snicker as they talk to someone about it.  I try to level the filed by explaining, to complete strangers, that it is CANCER in his bronchial tubes and esophagus.  That usually gets me no response and the glaring continues as he coughs.  God forbid cancer ever enters their lives.  I know the cough is loud and annoying, but he doesn't cough this way because he has a cold or bronchitis, he coughs this way because he can't get a breath in or out of his lungs and what he can get gets caught in the airways.  I wish people could show a sliver of empathy and nor roll their eyes.

 

He hasn't been able to eat for the last 48 hours.  He couldn't eat before the PET scan, and then he couldn't' eat before surgery. When they weighed him this afternoon his weight was down to 186lbs.  Not a lot for a man 6'6.  He keeps losing weight and that scares me too because now he looks like he has cancer.  That thin, bald, pale look.  I think back to a time, many many years ago, when I weighed 186lbs and thought I was so fat.  Looking at him at this weight he is so thin.  Mine was all baby fat that fell off while I was in college and I finally settled at a happy 135lbs.  Now we both look too thin.  I would much rather see us a happy chubby pair.

 

 

 

 

 

Monday, July 7, 2014

The title of this blog might strike you as odd.  How many people title a blog with a date, especially a date 10 years ago.  I do.  You see July 15, 2006 is the day we learned that my rocket scientist as stage IV colon cancer and was given but a few months to live.  Here we are 10 years later and he's still here with me.  It hasn't been easy on him, and it hasn't been easy on me.

When we married on June 30, 2002 we had so many dreams and plans.  Traveling we wanted to do.  Pets we wanted o raise.  Buying and RV and traveling across the states.  I love the desert and couldn't wait to introduce my rocket scientist to the desert.  Australia was a big trip w wanted to make together.  So many places to go and people to meet.  We were happy.  We were in love with each other and with life.  Needless to say we haven't done anything on our bucket list but taken a few cruises to Alaska, and that is because a cruise is so easy for the rocket scientist.  The chemo patients dream vacation.

Stage IV colon cancer is not something we expected to hear, but I remember it like it was yesterday.  Dr. Kramer coming into the room to give us the results of the colonoscopy.  Stage IV colon cancer and 6-12 months to live and with that bit of news he walked out of the office leaving us standing there looking as if our world had caved in.  It had.  Luckily we met with an oncologist, Dr. Ingber right after that and while our world would never be the same, Dr. Ingber is determined to increase the odds.  He ha managed to keep the rocket scientist alive these past ten years, doing whatever it takes to keep him going.  At this point the rocket scientist is an active part of his treatment board, often researching and taking his own thoughts and ideas to the tumor board.

Several doctors on the tumor board are openly shocked that the rocket scientist is still alive.  He finds that amusing.  He is living in the 5% and has been for the past seven years.  Living in the 5% means he should be dead by now.  God has another plan.

I will try to get some pictures posted on here tomorrow while the rocket scientist is in surgery.  Pictures give a blog a more personal touch.  Tomorrows surgery is on both bronchial tubes and his esophagus to scrape the tumors down so the rocket scientist can breath again.  Ten years is a lot of time to cover, but I will and probably not n chronological order, but more or less in the order events and details come to mind.  Blogging is new for me so bear with me and I get my feet wet here.