The Big C

A journey through Stage Four Cancer

Sunshine and Lollipops

I’ve been debating with myself on what kind of posts do I want to do.  The whole purpose I began to write this blog, was so that other people diagnosed with stage four cancer might find a place of hope on the internet, in between all the depressing statistics that are stage four cancer.

I don’t want my blog to be depressing, but on the other hand, I don’t want my blog to be so sunshine and gumdrops happy, that it is really out of touch, and useless to people who aren’t feeling optimistic.

Because the truth of the matter is, stage four cancer is a monster.  It is a psychopathic stalker that you always have to keep your eyes open to.

What to do? What to do?

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Monday at too early o’clock was my CAT scan.  It’s been about 3 months since my last scan and something has changed in CAT scan in that short time.  The awful, chalky, glug-gy, retch inducing fluid has been changed.  Now the fluid is clear, like water, and tastes like fake, flavored water.  It was a lot easier to drink and one of the dreads of getting a CAT scan is gone.

You still have to drink 32 ounces of it in an hour, which is not easy for me, but in the world of medical procedures, is really a non-issue.

And the person who started my IV reminded me of my daughter-in-law-to-be; full of life, considerate, kind and caring.  The insertion had a minimum of the ouch factor.

It was such an easy scan, it’s hard to remember that it’s done for a serious reason.

I can almost forget that I have to continue looking over my shoulder for the shadow of the stalker.

God is good.  Merry Christmas!

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The CAT Scan

Next week is my CAT scan, and I’m nervous.

I’m not nervous because CAT scans are painful, because they really are not.  CAT scans are mostly a nuisance.

First, you have to drink a quantity of liquid, yucky liquid.  It comes in cute little, chilled bottles with yummy names like “Fudgey Chocolate” or “Orange Creme.”  They even smell yummy.  The taste however, ieeew, that’s a different story.  Having had more CAT scans than I can remember, I have worked out a strategy of how to consume the thick liquid without throwing up.

The most important thing is to have the liquid shaken up very, very well.  I can’t do it, so I have my husband do it, or one of my sons.  This gets the thick stuff on the bottom up, and mixed in smoothly.  That prevents a chunk coming up your straw and making you gag.

The second most important thing to do is start sucking on the liquid, while paying attention to something else – a television, a magazine, even a conversation that is none of your business.  Anything.  Don’t come up for air because you will get the yucky taste and gag.

Follow the directions the hospital staff give you for how much to drink at their set intervals.  Don’t try to slurp it all at once.

Do not drink the remains at the very bottom or you will probably throw up all that you have already drank of it.

Even the IV that they put into my arm to contrast for my scan is no more than a bit of an ouch! as they look for a willing vein.

Following the directions of Breathe! Hold your breath! Breathe! is sort of like playing a CAT scan version of Simon Says.

What has me nervous is wondering if my stalker has returned.  The only way to know is with the CAT scan throwing a light into all the hidden corners.

And that is what has me nervous.

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The Blame Game

I’d been “out of it” for days, may-be even a few weeks.  I don’t know.  Slowly I was coming back to consciousness, when I was told that I had cancer.  I don’t even remember who it was that told me, only that the voice was gentle and sure.  There was no mistake.

“What cancer?” I croaked because I hadn’t spoken in so long.  What I meant was  “Where is the cancer?”  I had a suspicion of where, but I didn’t have a knowledge of anything since I had been admitted to the hospital in Connecticut.  I was in my first hospital in Rhode Island now.

“Stage Four.”

“Then I am dead.”  I wasn’t so out of it that I didn’t know that stage four was the worst, and last stage of cancer.

“No, no.” the Doctor said.  “There is no reason to believe that we can’t treat this cancer as effectively as an earlier stage cancer.”

God bless him!

Laying in my hospital bed, I didn’t wonder “Why do I have cancer?  Why me?”  That would come later.  What I wondered was  “What have I done wrong in life that I got cancer as a result?”

  • What food did I eat, that causes cancer?
  • What was in my air that caused cancer?
  • Was it air fresheners?  The anti-static spray?  Perfume?
  • Was it all our bbq’s?
  • Because I hate eating oranges?

The thing is,  I wasn’t the only one playing the blame game when I was diagnosed with cancer.  I haven’t lived with my parents since I was eighteen.  I am 40 – mmmmbphhh now.  I haven’t lived with them in over 30 years.  And yet, my mother kept delving into my babyhood and my childhood wondering if she had done something that could have led to my cancer.

  • She hadn’t nursed me long enough.  (In fairness, my doctor told her to stop, can you imagine??)
  • Was the formula to blame?
  • Was there a food they should have fed me?  One they shouldn’t have fed me?

The food thing is really laughable because my mother was a food Nazi.  Nothing, and I mean nothing, with perservatives ever came into our home.  I knew about BHT, BHA, Red dye number 5 before I was even in middle school!  She wouldn’t let us have white sugar, we could only use honey, and even that didn’t flow freely.  We always had whole grain food, only natural peanut butter, plenty of milk and a glass of orange juice a day.  My father always had a huge, I mean really HUGE garden.  We never had Kool Aide or sodas,  snack cakes, or even snacks at all, rarely had desserts except for birthdays.  I totally hated it, but that’s what I mean that my mom’s concern is laughable.  I could not have been fed better as a child!

The saddest players of the Blame Game though were my children.  The very youngest ones were sure that my cancer was their fault.

  • They should have been more obedient.
  • They shouldn’t have stressed me out with their fighting.
  • They should have kept their bedroom cleaner.
  • They should have done their homework sooner, better or faster.
  • They shouldn’t have been fresh to me.
  • They should have spent more time with me.
  • They should have given me more time to myself.
  • They should have been good.

Even the oldest ones wondered if they hadn’t disagreed with me as often, if they hadn’t been so rude, if they hadn’t ……………, then I wouldn’t have been stressed and I could have fought off the cancer.

Although we do know somethings like asbestos and cigarette smoking, can cause cancer, they don’t always.  People can smoke their whole life, and never get cancer.  A health conscious marathon runner does get cancer though.  Sometimes, there just doesn’t seem to be a reason why someone gets cancer.

I tell you this because this is what you might experience when your family learns about your cancer.  Especially with younger children, they put all the blame on themselves.  It sounds ridiculous, but it is true.  This often happens when parents divorce, children blame themselves for the break up.

It’s important to explain to them that the cancer is no one’s fault.  Even if you are sure the cancer is a result of bad life choices, keep it to yourself.  The blame game at this time will only be destructive.

That Mommy (or Daddy) didn’t get cancer because of anything the child has done, that their actions didn’t lead to stress that allowed the cancer to grow.  That they are blameless.

If they ask if Mommy is going to die, don’t lie to them. Don’t give them a booming “Oh no! Never! Mommy is going to be fine.” They already know better, your false reassurance makes you un-trustable, and they will weigh every word you say from then on, making their own conclusions, often, wrong ones.

You don’t need to say that Mommy only has six months either.

What you need to do is be honest, admit that Mommy (or Daddy) is very sick.  Tell them that it might take some time for Mommy to get better, and that she might need some therapies like chemotherapy or radiation.  You don’t need to explain chemo or radiation at this time. Cross that bridge when you come to it.

Even though Mommy is sick, she still loves you so much! And she’ll like it when you hold her hand, or draw a picture for her room.

If you are a believer, make sure the children know that God didn’t give mommy cancer.  That God isn’t mad at mommy, the family or the children for doing something wrong.  That God loves mommy and the family, and that God is sad that mommy has cancer too!

My children did many Catholic devotions for me, asking God to help me.  They drew closer to God, and felt that they were helping by praying.  Truth be told, I really believe that it is the many prayers that I received, and the sincerity of belief of my children that kept me from dying in the hospital.

 

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Colostomy

Colostomy.  The very word makes people shrink away and shiver!  It’s unimaginable.  It’s unnatural.

And it might just save your life if you have some cancers, like colon, rectal or anal cancer.

As the child’s book by Taro Gomi says “Everybody Poops.”  And if you don’t, you’re not long for this world.

So, when you can’t poop because of an obstruction like a tumor, or part of your digestion system can’t be used (temporarily or permanently) the answer is a colostomy.

This link, I think gives the best basic knowledge: www.webmd.com/colorectal-cancer/guide/living-colostomy

So, there is the practical, but it doesn’t get rid of the shivers, does it?

If there is a colostomy in your future, don’t despair!  First, colostomies are not alway permanent.  In my case, it was temporary, and it really did save my life.

I wasn’t all gung ho! and thrilled to be getting one at the time, believe me.  There is nothing like looking at your body after numerous operations and seeing the long scar that divides your torso in half, and something as unnatural as a colostomy bag.  I saw it, and even though I knew it was coming, I cried.

I felt like Frankenstein’s monster.

But after the initial revulsion,  I was grateful because now I had a much better chance of living, being with my family just that much longer.

After the operation, I guess a few day later, a Colostomy Nurse came in to talk to me.  She bought with her a sharp pair of scissors and the components of the colostomy: wafer and bag.  That first day, I cried again.  I looked at the components with pure hate.  The nurse told me that my reaction was typical of most people.

The next day, she came again.  This time she changed the bag, and I watched.  I also handed her the bag, and she helped me to fasten it on.  It was a fast visit.

Her third visit, there was no more fooling around.  She taught me how to measure the stoma (that is the outside opening where the waste comes out), and to remove the old wafer, clean the area (the first time that was emotionally very hard to do), reapply a new wafer, and put on the bag.

I found, that having a colostomy is more manageable if you put yourself on a schedule.  Have all the supplies that you are going to need waiting for you in one place in the bathroom.  Know what days you are going to change the wafer, so in the beginning you can “steel” yourself for that day.  That was the most difficult thing for me in the beginning.

Besides having a great doctor, and a visiting nurse that returned phone calls usually within the day, the other thing that really helped me was a support group I found online.  It is a Yahoo Group called Ostomates_R_Us@yahoogroups.com You can ask them any question, about anything! They’ve heard it all, experienced it all and are so open and honest and friendly.  As soon as you find out that you are going to have an ostomy, you should join this group.  You’ll find them invaluable!!

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Rest In Peace Elizabeth Edwards

Today is a day, I just want to pull the covers over my head and sleep.  Not because I’m tired, but because I just want to be oblivious to the world, and my own feelings.

Sometimes I understand why people drink to excess and use drugs, to escape having to acknowledge, to feel.

That option isn’t open to me.  I won’t say that it isn’t my style, I don’t know.  May-be under different circumstances it would be my style.

But while I breathe, I live and while I live, I want to spend every second living and being with my family.  I don’t want any of us cheated out of one second of my limited days, or months or years.  Whatever God gives me.

Elizabeth was diagnosed with cancer in 2004 and underwent treatment.  During her husband’s campaign, she looked vibrant and healthy.

I wonder if she felt like she had a stalker, like I do?  At every checkup, you wonder, is this when my remission ends?

In 2007, Elizabeth’s remission ended.

She took treatment for almost all of her remaining three years, but even with the effects of chemo, she still was there for her family and friends, always cheerful, always smiling.

Until her end, which was yesterday.

This is what I hate about cancer.   I have met so many people who have endured horrible radiation and chemotherapy treatments, and have gone into remission.

Their hair returns.  Slowly, their energy returns.

They make it through the first year, holding their breath.

They make it through their second year, and they breathe a little easier.

They make it through their third year, and they are thrilled! Now they can breathe freely.  They have conquered cancer!!  It is all free sailing after this.

Six months later, it returns, and for so many of them, they die.

Cancer is a gift, because you really and truly realize how few your remaining days are.  Even when you are in remission, gratefully in remission, you know it can end any time.  You either tell people you love them now, make the good memories now, or it won’t happen ever.  Never.

But cancer is also very cruel.  Cruel to your body.  Cruel to your mind.  Cruel to your family.  And cruel to your finances.

I’ll end this post with a quote from the last entry of Elizabeth’s Face Book Account:

You all know that I have been sustained throughout my life by three saving graces – my family, my friends, and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined. The days of our lives, for all of us, are numbered. We know that. And, yes, there are certainly times when we aren’t able to muster as much strength and patience as we would like. It’s called being human. But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. It isn’t possible to put into words the love and gratitude I feel to everyone who has and continues to support and inspire me every day. To you I simply say: you know

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