Tuesday, August 21, 2012


I know fear.  I worked in a jail.  I walked into cell blocks without a gun, a weapon of any kind, or body armor, I frequently went in alone.  I can't tell you how many times I knew I was inches away from being beaten badly.  I can't even guess at how many times I was close to being attacked.  And I can remember, vividly, the times that I was.  I have been spit on, head butted, kicked in the ribs, punched, I have had black eyes and bruises, skin gouges and whip lash. 

I know the fear of losing your job.  The fear of not having enough money to pay your rent.  I know the fear of being in trouble with your parents.  I know about fearing you would die, fearing you will get badly hurt in the accident you see coming.  I know fear of heights- I love to rock climb in a gym and I love to hike, but I hate to look down.  I know the fear that if I walk across that bridge I might be too tempted to jump off it.  I know the fear that I will never amount to all that I have dreamed I would be.

Believe me when I say, I know fear...but I have never known a fear like this...this makes me wish I was still at the jail, because it pales by comparison.  It makes me wish I still had gall stones because that is a pain I can handle.  It keeps me up at night.  I makes my jaw ache from clenching it so tightly.  It makes me want to jump off that bridge, because if I survive that, maybe I can survive this.  And if not, I will no longer have to deal with this...But for now, I am so scared.  So very scared.

Sunday, August 19, 2012

the very idea that I could lose my mother makes my heart feel like someone has it in a clenched fist.  I start to have a hard time breathing and I feel so much pain centered on my chest.  The breath just seems to have left me and I can't suck enough in to make my lungs keep from bursting.  I know it's not a panic attack because I have plenty of those over the years.  It's something worse, far worse.  It's fear, and sadness and pain mixed together.  There's no word for it.  It's not grief, not yet.  It's can't be.  I don't want to mourn her until she isn't there.  I don't want to keep thinking about it like that.  Though we have already discussed her funeral arrangements and it's there in the back of your mind the realization that these may not be the plans for a later time.   

The chemo has already started and she is well and truly sick this time.  She has little energy, dad says she just "hits a wall" and has to go back to bed.  I think he feels the doctor was trying to tie things up into a pretty ribbon at points and telling her she would be fine.  The doctor had said it wasn't going to be a tough as the interfuron and we were all ready for this to be a piece of cake.  But the interfuron was 5 years ago, she was younger, healthier and mentally at a different place.  She knew she could win it.  She had been given a time frame of how long the chemo would go on and what the results would be.  This time we are waiting on a ledge for results.  This time we have to live it in 4 month increments to see if the chemo is causing the tumor to shrink.  This time, she truly is teetering between hoping she can fight this and believing she will die. 

That's no way to live...waiting, wondering and weakening...

Wednesday, August 15, 2012

Finding humor in her cancer

Mum's facebook post today:

"As I was standing in my shower with my arms and head stuck through a cut-off Hefty bag to cover my port all I could think of was if I had a pair of kinky boots and a see-through umbrella I could do a damn good porn version of "Singing in the Rain" ! I did turn that Hefty bag into a Glad bag after I was done !"

It was like someone flipped a switch.  Ten minutes away from our camp Mum just woke up and was her again.  On Thursday and Friday she got more information and her hope returned.  She said she would kick this cancer or die trying.  We got to camp and she and my Aunt Eva both exposed their chemo ports and sang "Who wears port ports?  We wear port ports.  And if you wear port ports, bare those port ports".  The pain isn't completely gone, and the meds make her sleep a lot, but she is joking and playing with her grandkids.  She said to my brother James' girlfriend Katrina, who is reading the 50 Shades of Grey books, that she wasn't sure she had enough energy to be anything more than "45 Shades of Grey."  She had me saranwrap her port which she said was making her breasts almost perky.  And she was all excited about the free wig they were going to give her.  She can't decide if she wants to go really blonde and have dad call her "Ilsa the sex Goddess" or blonde with braids and have him call her "Heidi the milk maid".  I warned dad that if she came home with anything but her naturally black (more salt and pepper now), that she would be a handful.  I asked her why she hadn't gotten an haircut the other day like she planned and she laughed, "Why the hell should I?  In 3 weeks I won't have any hair!" 

In the face of a much worse situation than her last bout with Cancer, she is trying to maintain some normality.  She still doesn't believe that she will survive this.  But she said "I won't let it kill me, it has to fight me".  She is so excited that she can pretty much eat all the carbs she wants and is waiting for the day we let her hit Panera bread for all the white bread she wants.  She said she was planning on going back to walking every day and wants to ride her bike to the hospital to have them remove her chemo pump.  I worry that she will push too hard, but then remember that this chemo is nothing compared to what she had last time and these are the things she did to stay sane last time.  Last time, she still worked every day.  Last time she drove the 3 hours to camp every weekend.  And last time, she won.  I told her I would drive her to camp on my days off.  I told her I would support her decision to return to work if she felt up to it.  I told her I would bake her all the bread she wanted so long as it made her happy. 

Work made her mind focus on something else, it made her feel normal and it kept her active.  If she wants to work, and she thinks she can handle it then I can not stand in her way.  The people she works with are just as much her family as we are.  She needs them just as much as she needs us.  I also told her she could stay home and enjoy her days doing things she likes and watching Grey's Anatomy and Desperate Housewives with dad and me.  Whatever she wants to do is fine with me, so long as she is happy.

Thursday, August 9, 2012

Dear Mom,

I know that sometimes you feel like you were a bad mother.  I need you to understand something, you were not a perfect mother.  We were not perfect children.  But you were never, never a bad mother.  You made the choice to stay home and raise us and I thank you for your sacrifice.  And it had to be hard, three children who fought constantly, who hated each other, and did it alone for hours on end while Dad worked all the time. 

You were the fun mother.  You made us play-doh from scratch.  You baked cookies and home made meals.  I remember hand knit sweaters and home made clothes.  Until I started dressing myself, I was the best dressed kid in school.  I remember a mother who used to jokingly sit on us when we hid in the couch cushions, and called it "babysitting".  I remember family tickle fights.  A mother who started water fights in the summer, and who cheated once by staking out the faucet under Bill's window.  A mother who liked to have Frisbee parties with the neighbor kids.  A mom who made me laugh so hard my sides hurt.  I remember a woman who taught me to love reading.  A woman who has won every scrabble game we have ever played against each other and who now kills me at words with friends.  You taught me to knit and steal all the socks I make- and I secretly love that you do.  I have always been proud of your sense of humor.  I love to repeat the funny things you have said or done.   

Maybe we point out some of the less impressive moments too often and not mention the fun we had.  I laugh about the dish breaking now, but you never would have broken all those dishes if we had done the one thing you asked us to.  You weren't impatient, we were lazy and spoiled.  Maybe we should be appologizing to you for being terrible kids.  We weren't delinquents, but we never told you how much we appreciated you and now, it may be too late.  We don't tell you we love you enough.  We don't remind you about how good you were to us.    

You never meddle in our lives.  You never pushed us to do things that we didn't want to do.  Never made us try to be something we weren't.  You accepted us for who we were, even when those things made you cringe.  You loved us quietly, without smothering us.  You made two amazing men in my brothers, they have flaws, but they are still so amazing.  And me...well, you can't be to blame for the mess I made of my life, I did that all on my own.

I wish I could make it up to you all the things I did wrong, said wrong or all the times I hurt you.  I can't, there just isn't enough time.  But what I did, I did because I was immature and foolish, not because you weren't a good mother.

I love the fighter you are.  I honor the woman who took care of her mother until the day she died, no matter how hard it was you did everything you could to make her feel comfortable.  And to lose your father so quickly afterward...that you managed to stay in one piece I will forever be amazed that you did.  And five years ago, when you were told you had cancer, I stand in awe at the strength that got you out of bed each day to go to work even though you were going through the worst chemo out there and when you walked away with a new attitude I applaud you.  I know no other women at 61 who would dare to do the things you have done- hiking mountains and white water kayaking.  You faced cancer with humor, grace and strenght last time.  You make me wish I could be just like you.

I need you to be brave again.  I need you to fight.  I need you to try, not for me.  But for you.  I need you to try this one more time because the world would cease to be wonderful without you in it.  I need you to fight because I can not allow you to die without realizing that you are poetry, beautiful music and the pulse in my heart.  I need you to be here when I finally do something to make you proud of me.  I need you to be here because without you I am not me.  And I need you to be strong because I don't think I know how to be.  I need you to show me.

I love you, Susan

Monday, August 6, 2012

August 6, 2012

I had so much to do around the house this morning that I didn't get to my parent's house until almost supper time.  I had called ahead to see how mum was doing and she was muttering about being tired and not hungry and pretty much hung up on me.  I should have clued in that something might not be right, but then she has been really tired and really run down.  They had taken her to see her ailing cousin who said to her "I am never going to see you again" repeatedly.  And then to her elderly Aunts who are all above the age of 85 and when she told her Aunt Annie that she had cancer her aunt said "Oh, that's great, that's good, hope you have fun with that", but not in a mean way, she seemed to be so confused that she actually thought mum had said something good.  Another Aunt proudly announced several times that in 3 years she would be 100.  Aunt Eva said she had taken it very hard that her other family members were just not that interested or concerned.  Intellectually she knows that they are unwell, but emotionally she is just so down that this seemed to just add to it.

I got to the house and was barely out of the car when my dad yelled for me to leave my stuff and get mum dressed they were taking her to the hospital.  She was mumbling and confused and couldn't seem to wake up.  In the car over, my Aunt grabbed my hand and said very softly "I know it's hard".  I was trying so hard not to cry, she doesn't like to see us cry.  But it's so hard to hold back.  They took her in right away and left us in the waiting room.  After an hour dad told my Aunt, brother James and I to go get supper they were going to be a while and we weren't allowed in.

At the restaurant, my brother and I talked about how hard it was not to drop out of college right here and now and wait until this is all over to start again.  The desire to be there for her is great.  But my mother is the type who would be pissed if we dropped out.  Especially, my brother.  James is in law school.  And she is so proud of him.  James doesn't want to have her feel like he doesn't care. And he doesn't want to feel like he is tied down too much with school that he can't run to her side when she needs him.  However, he also knows her like I do.  She wants for us to succeed, to keep striving for our goals and she would do everything in her power to make sure we kept moving on.  And James is so close he can taste it.  She would never forgive herself if he dropped out for her.       

I am just muddling through until I get my head out of my ass enough to figure out what I want to be when I grow up.  This semester, I am taking all my classes online and I am only taking 3.  For me, to drop out wouldn't be so bad.  But again, she would be mad to think we gave up on our dreams for her.  And a part of me thinks that if I am in a class I will be able to decompress through homework.  I'm baking, a lot.  Suddenly, I'm Betty Crockers evil twin sister.  When my hands are busy I am at least not thinking.  I am getting a lot of reading done, anything to distract me and keep me from crying at work.  I can be ok with the bouts of absolute hysterical crying at home in the privacy of my Jeep or in my room, but at work?  People look at you like you are this insane creature.  Which is irony, I work in a mental hospital where people are supposed to be trained to deal with this. 

James and I also talked about how I am planning on being here on my days off and as many times as I can during my work week.  My brother said that he and my other brother William would help me financially as much as they could.  I am not doing this for money.  I think I have to do this.  She raised me, she tolerated my horrible teenage years and she loved me unconditionally no matter how bad I was...and I was rotten for many years.  I have so much to atone for.  The times when I refused to call them and waited to see how long it would be until they called me.  The times I lied to get out of being at family gatherings.  There are more things, but who can remember what you did, just the feeling of remorse is there.     

I found out that my boss had sent out an email telling all the officers to keep their requests for time off down to essentials so that he could make sure I had the time I needed and two of the officers offered to switch shifts or take shifts off my hands any time I needed to make sure I was able to spend time with her.  I have worked under 2 Lieutenants now, under the first one my mother was going through Cancer the first time and he never made exceptions for time I needed to be with her.  He was forever making changes to my schedule without checking with me and I remember he got mad at me when I informed him I had a life outside my job and he had no right to just arbitrarily change my schedule.  I ended up appologizing to him.  Under the 2nd, he probably would have bent over backwards for me.  Afterall, he promoted me to Sergeant as soon as he had the chance.  I had been surprised by this guy, though.  I had never expected him to care. 

In fact, there are so many people showing themselves to be amazing friends.  People who I only considered workmates are turning out to be angels in disguise.  Friends from high school who I havent seen since graduation are popping back into my life with great words of advice and encouragement.  There are people on Facebook who don't know her, but who have heard all the insane things my mother has been up to over the last few years.  They are rooting for her to live just to hear what else she has in her to do.  My mother raced in her first whitewater kayak race with me at 61, the hikes she has gone on with me up mountains that would scare 20 year olds at the age of 61 and 62, and her desire to go rock climbing with me for the first time at 62.  Mum just found her passion and now she is losing her will to live...and all I can think is, I wanted to hike Katahdin with you this summer.  C'mon mum, you need to live to climb one more amazing mountain with me.  I can't lose my hiking buddy.

Sunday, August 5, 2012

August 5, 2012

I got to spend a nice lunch with my parents and my aunt in the park.  Mum seems to still be very ill, very tired.  She hasn't started the chemo yet.  I'm worried that she has already given up.  I made a joke about when she gets better she wouldn't get to have me as a slave anymore and she sadly shook her head and whispered, "I'm not getting better."

I want to shake her and yell "YOU CAN'T THINK LIKE THAT!  YOU HAVE TO FIGHT IT!"  But how do you do something like that?  How do you bully someone into believing they won't die.  You don't.  I want to cry and beg her not to think like that, but how is guilting her into it going to help?  It's not.  Frankly, nothing is going to work.  The reality is she has a slim chance of survival and she knows this.  No amount of "Pollyanna-sunshine-all-the-time" bullshit is going to make her believe otherwise. 

Yet, we all know if you believe you are going to die you will.  And I don't want it to be that way.  I don't want her to believe she will die and then give up.  I want her to believe she can beat the odds.  I probably am repeating myself on here over and over...but I have to make her see that a slim chance is still more than no chance at all.  And I need her to use that as the one lifeline to keep her from letting go.

I really want a day without tears.  I want to not cry every time someone asks me how she is doing or what her diagnosis is.  I want to not feel so selfish about how I am feeling when I know full well that what she is feeling is ten times worse than this...I feel like Jell-O...I feel like this is something I will have to do alone.  My brothers have significant others, I have 2 cats and a cynical world view, doesn't really keep you warm at night.  Nor does it hold you tight so that as you cry so hard you think you are going to fall apart they can be the one to hold you together.  And each night, that is how I feel...like I am falling apart and there is no one to pick up the pieces.

Friday, August 3, 2012

August 3, 2012

It is stage 3 or 4 Pancreatic Cancer.  Not operable, currently, because it has a strangle hold on all those blood vessels that feed all the organs in that area.  They can't completely stage it until they figure out if the masses in her liver are cancer or cysts, but they do know that when Pancreatic Cancer spreads it goes directly to the liver then moves on from there.  She can choose chemo or choose to not fight.  If in 4 months the chemo is making the tumor smaller than they will continue, if not they will do what they can to make her comfortable until the end.

The words were just so clinically put, so sterile.  I know that a doctor isn't required to be personal with patients and I bet they do this death sentence stuff all the time.  But it feels like it should be different, this is my mum.  She wasn't supposed to get a life sentence, she was supposed to get stage 1, maybe stage 2...not stage 3 or 4.  I wanted her to be operable.  I wanted her to be quick, painless and over in a few months and back to herself.

I wanted it so bad, I wished and hoped for it every day.  I set my alarm for 4:30  p.m. each day so I would have a moment of silence at the time when she first told me she had the mass- 4:30 on Wednesday July 25th, 21 days after my 36th birthday.  I've not even had a chance to celebrate my birthday with her yet. 

You start to review all the thoughts you have had when you have been wishing for her safe return.  I accidentally thought "I want her to die," when what I meant was "I don't want her to die".  The thought made me jump out of my chair, I never meant to say "I want her to die", I just was so exhausted my mind was jumbling thoughts together...and one wrong thought that I never meant fell into my mind.  And I sit there as he tells us her diagnosis and think, I hope it wasn't that one wrong thought.  I don't believe in prayer or fate or any ability that the mind can change the way the world really is.  I do believe in positive thought, but I don't believe there is someone up there changing the world to suit my prayers because I prayed to the right person...but for that moment, that silly moment I thought...this is my fault.

She decided to take the chemo option.  She has decided to fight.  On that, I knew she would.  She said she wouldn't go without a fight, not last time and not this time. 

They told her that after 4 months of chemo they will check to see if the tumor is responding.  They will try to shrink the tumor with chemo until it is operable or at least manageable or until she decides she can't do it anymore.  Through her tears she said "So, I get to live my life in 4 month increments?"

I have to believe she will live.  I have to hold on to that thing line of hope that the chemo will work, it will shrink it and she will get a few more years.  But I wonder how we will convince her.  From diagnosis until her death, mum nursed her mother through her pancreatic cancer.  She has lost more family members to pancreatic cancer than to any other illness and that was on both sides of her family.  She has seen how bad it is and she is scared.  How do you tell her that this is not like that?

And how do you tell her that she will live, when for the last two weeks you have been burrying her?  Each night in your mind, she is dead and you are living on without her.  Because each night you try to fathom a life without her.  And it isn't a pretty picture. 

August 2, 2012

I cleaned my parents house.  My mum came home from another doctors appointment and she was extremely sick.  They put in a stent to relieve the pressure of the tumor around the pancreas.  I kept hoping that she would be ok, so far no jaundice, no nasuea, no vomitting or diahrea.  She had so few symptoms I could easily believe that we caught it early enough.  But she was suffering from pancreatitis at that point.  So, I sent her to bed and got the pain meds into her and she was out. 

The night before, Dad has called in Aunt Eva- mum's oldest sibling and only sister- to come out and stay with them.  He said she needed her security blanket and that Aunt Eva could help her more than he can.  Dad doesn't feel like he has been a good husband he thinks he has failed her in so many ways.  We had a long talk.  Dad loves my mother dearly and he is completely devastated by this and the waiting and the not knowing is keeping them both up at night and Dad can barely eat.  Mum is in serious pain so he is sleeping in the recliner in the living room so she can have the bed. 

He told me that when they first were married they had lived on my grandfather's farm.  One night he had come home from work and saw that their car was across from the trailer and parked in my Grandfather's garden.  So, he said he asked her how it had gotten there.  All she would say was "it's stuck".  But she had this smirk on her face that he said always meant there was far more to the story, but then the car on the garden already told him that.

He said "I can see that, but how did it get stuck over there". 
She wouldn't really tell him, only "it's stuck". 
"But HOW did it get stuck over there?" he asked. 
"Well, it was stuck in the driveway." 
"Yes, but NOW it is in the garden."
"I thought I would revv the engine a little and then rock it back and forth and get it unstuck.  But that didn't work.  So, I revved the engine some more and put it in reverse...but that didn't work.  So, I revved the engine some more, put it in reverse, got out and pushed...and it SHOT across the driveway into the garden and NOW IT'S STUCK!"

He and I cleaned the house as fast as we could while she slept.  Dad left to go to work and she woke up at some point not long before I had to leave and she comes down the hallway and just turns to look at me and she says "Holy shit" as she looks at me, then with no explaination and nothing else to say she turns and walks back down the hallway, I told her "Yeah, well you don't look so hot yourself!"  Apparently, she was just surprised that the house was clean and wasn't commenting on how I looked.

At the end of the day, still no news and still no hope.  Right now, she is just tired, sick, scared and sad.  But at least she has her family.  I left for work as soon as Dad got home from his job and then Aunt Eva and my brothers showed up to help celebrate a belated anniversary with her.  She did get an appointment for the next day and she asked me to go get a blood test called the CA19-9 which is supposed to be able to detect Pancreatic Cancer in your blood. 

The problem with certain cancers is they mask themselves as other things.  Pancreatic Cancer can even convince you it is just gas.  It did that to my mother.  Because of that, this cancer is often not found until it is too late.  It seems so funny, not even a week ago we were reading the article about how Sally Ride had passed away from Pancreatic Cancer and how it is so hard to find...and now, we are waiting to find out just how long this little mass has been hiding in my mother.

August 1, 2012

My parents celebrated their 42nd wedding anniversary that day.  My mum's facebook post said "42 years ago today I married a great man, today he gave me flowers, I gave him news of cancer...I like the flowers better".  Mum found out she had pancreatic cancer on their anniversary.  My parents have known each other since they were children.  My mother's brother was my father's best friend growing up.  My dad never had a lot of dates, but my uncle Al always wanted to go double with my dad so he would set them up together. 

There is no doubt in my mind my father adores my mother.  Less than 5 years ago my mother was diagnosed with skin cancer.  And I saw my father cry for the first time in my life.  She survived it.  The day they told her she had Cancer she said she made a decision not to let it be the death of her.  They put her on a year long regimen of Interfuron.  This stuff was brutal.  She got winded going up a flight of stars, she couldn't even keep up with me when I walked with her into a store, and she was exhausted.  But she went to work every day, she drove herself three hours to camp and she drove an hour to see her grandkids.  She said it would not kill her and it didn't.  That was then.

Now, we sat by her side while she waited to be sent in for an endoscope.  We have known there is a mass on her pancreas since Wednesday July 25th.  The doctors won't say "Cancer," it's like they're worried that if they say "Cancer" she will fall to pieces.  The longer they pussy foot around it, the worse we all feel.  A mass on her pancreas is not likely to be anything other than Cancer.  And she can handle the truth better than any human being.  Only one doctor was willing to hint at it.  Before they wheeled her in for her scope, the doctor leaned over her and said "You know what it is, and I know what it is, we just need to confirm it and stage it". 

I called my father from work to talk to him about the results and all he could say was "Bad."  He has no understanding at that point of the cancer only that she is in pain and she is sick and for him that is "Bad."  I drove over to their place after work and explained the staging and what I know about Pancreatic Cancer.  Unlike Dad, I am internet savvy, he still thinks that a black and white television was perfectly fine...why change to color.  I looked it up.  Because, I was curious about what we were facing...and found out that in the grand scheme of things I am next on the Pancreatic Cancer pony. 

Had it not been for genetics and the joy of heredity, Mum should never have had it.  She isn't even overweight, let alone obese.  She doesn't smoke, and doesn't live in a house filled with smoke.  She has had gallstones, but not pancreatitis.  She should never have gotten it...I should have.