The Big C

A journey through Stage Four Cancer

Miracles

There has been a lot of good news on my prayer list.  Two of my friends have gone into remission, which considering the progression of the disease for the two of them, is pretty remarkable.  They are getting to socialize again like they did in their old lives, and one is even able to drive.  A third friend is getting a better grip on her disease and although it is acting up, she is able to handle it better, so all and all, prayers are being answered.  Miracles are happening.

I was telling my daughter about the positive changes and she listened silently.  When I was finished, she asked “Well, when do you get your miracle?”

Without even taking time to think I rattled off what first came to mind.  “I’ve already had my miracle, miracles!  You being born was a miracle, in fact all the births of my babies have been miracles!  And your dad and I even meeting was a miracle….”

She rolled her eyes.  There was definitely a difference in what we both considered miracles.

Later that night, I was thinking about our conversation and how quickly I was able to call to mind the miracles in my life.  My husband and I meeting in the first place, when we came from different towns, were in different life situations and had nothing in common.  In fact, I didn’t eve like Nate when I first met him!  A teenage marriage and 32 years later, we’re still together, some might call that a miracle!

In this day, having six kids with the same parents is pretty miraculous, especially when pregnancy was never easy for me.  I never miscarried, but was told to be prepared with two different pregnancies, because it was imminent.  That is pretty miraculous.

Everything that I ever wanted in life, or wanted to do, I’ve gotten or done.  That is pretty miraculous too.

I’ve had plenty of miracles in my life.

Chemo starts again in two more days.  I don’t remember what round I’m on.  I don’t think that matters, what matters is that the chemicals still work.  Sunday night, I have to take 5 pills just before bedtime to help make sure that I don’t have a bad reaction to the chemo.

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The End

I always come to the party late it seems.  Actually, that is not the best way to express this.  I always seem to learn about things long after they are well established.  There is a Christmas Carol “Mary Did You Know?”  As soon as I heard it, I loved it, and had to share it with others.  Turns out, it was old news.  The song had come out the year before.

Oh well.

Going through stage four cancer is mostly unchartered territory.  The doctors know what to expect of the organism, that is, my body, but not really what is going through my mind.  They can expect that I will feel sad, and even mad.  They have no idea of the rollercoaster that I sometimes ride; emotions of terror that get soothed by my faith, and then the deep sadness that I feel thinking of my motherless children.  I don’t think anyone without stage four cancer can truly understand how deep the terror and sadness can be.

It was after Derek Miller died that I discovered his blog.  The first entry I read, was his last entry, suitably labeled “The Last Post.”  Derek is an atheist.  As I read “I haven’t gone to a better place, or a worse one. I haven’t gone anyplace, because Derek doesn’t exist anymore.” I felt so sad and I felt so badly for him!  To not have any hope of ever reuniting with my husband and children?  This hope is the only thing that makes stage four cancer bearable for me.

Reading on, Derek wrote “So I was unafraid of death—of the moment itself—and of what came afterwards, which was (and is) nothing. As I did all along, I remained somewhat afraid of the process of dying, of increasing weakness and fatigue, of pain, of becoming less and less of myself as I got there.”

He expressed my feelings and fears!  I had to read more of his blog.  I spent hours reading, and plenty of my sleepless nights contemplating his thoughts.

I hope his wife Airdrie leaves the blog searchable for a long time because as a person with stage four cancer, Derek “gets it.”  His blog is a resource for those of us still in the trenches.  If you would like to read Derek’s blog, here is the link to his last post.  The rest of his blog is searchable, just erase all the link after .com/    http://www.penmachine.com/2011/05/the-last-post

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A Proud Day

I’m writing this a few days late, but it’s still a proud day for me. As you know, I have colon cancer and that has made me a big proponent of colonoscopies.  I encourage people to investigate their family health history.  And I encourage people not to be quiet about the history they discover and their own health history.

My colon cancer was discovered when I was 47 years old, and the cancer was in the last stages of killing me.  Literally.  My body was filling with fluid, as were my lungs.  My pulse was dangerously low and thready.  I was drifting in and out of consciousness.  I didn’t have long.  In fact, if that night I had followed my impulse to just turn over in bed and hug the heating pad closer, instead of going to the emergency room, it’s very possible that my husband would have left a corpse in bed when he went to work the following day.

Scary, isn’t it?

I have talked to my children about their own need for having a colonoscopy, because with one parent having colon cancer, their odds are very high of getting it also.  They need to start getting checked at age 42, 5 years before mine was found.  Since they won’t be 50, most likely they will have to pay for it out of pocket.  Insurance won’t cover it.

Because of my openess about my cancer, it isn’t unusual for me to get an email asking questions about symptoms the emailer has.  I think they are hoping that I will say that, no, those symptoms don’t sound like colon cancer, but usually they do.  Pain, bloating, sudden diarrhea or constipation, stool that looks pressed or rolled, blood in the stool, all of them can be symptoms of colon cancer as well as PMS, menstrual pain, or hemorrhoids.  Only a colonoscopy can tell you if you have something to worry about.

And that is the problem.  First, a colonoscopy calls for an intense laxative the night before – not pleasant.  Read Dave Barry’s account on it to at least find a little humor on it.  The day of the colonoscopy, you need someone to drive you home – that can be hard.  If you aren’t the right age, you might have to pay for the colonoscopy out of pocket – ouch!  And then there is the colonoscopy procedure itself.

And that is why I am so proud of the woman I will call Laura, who took the two most difficult steps, 1. calling and scheduling a colonoscopy and 2. having the colonoscopy.

One more person who won’t die because of embarrassment.

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Gearing Up For A New Battle

The line in the sand has been crossed, I do have cancer again.  This will be my second battle.  My first battle was in 2009 when I had colon cancer in both my colon and my ovaries.  It was only hours from killing me when it was discovered.  This time, I still have colon cancer, but it is not in my colon it is in my abdomen.  It is not just one tumor, but a few.  One of the tumors is already the size of a large orange and it is causing my thighs to have strange sensations.  My right thigh is always asleep/numb.  Sometimes the touch of the cloth of my jeans causes an unbearable burning.  The area gets cold, and it takes forever to warm it.  I’m starting to have trouble standing for shorter and shorter amounts of time because of pain.

Monday I go to another oncologist to plan another round of chemo.  Will I have nausea?  Will it make my hair fall out?  This time, will I be completely bald?  All the unknown.

The plan is that I will be poisoned with chemo until the tumor hopefully shrinks and dies.  Or until it hopefully shrinks and can be surgically removed.

That is what I would like your prayers for, that the chemo does destroy the tumor and that I am finally cancer free, or that I have a long remission until my youngest turns eighteen and is a young adult.  I know that children always need their parents, but as we grow older, the need changes.

If there is anything about getting cancer again that I am having trouble reconciling, it is the idea of leaving my baby at such a young age.  Not reading to her.  Not brushing the knots out of her hair or kissing her goodnight.

I won’t say that I didn’t shed a few tears, because I did.  I am mostly past that now, except for the aforementioned.  I am now trying to be active.  I know that this round, despite having insurance, is going to cost my family financially  so I’m trying to write a book before chemo makes me too tired.  It is on my other blog marynate.blogspot.com.  Well to be totally accurate, the first two chapters are.  I will put a little more up, but the idea is to get feedback and then actually sell the book, make money and be able to pay for some of my medical expenses.

The other thing I’m doing is trying to make some t-shirts that touch people on some level- their humor, their heart where ever, and use the money from those sales to also pay my medical expenses. cafepress.com/sagharborgifts

I’m also asking your opinion here, and that is, do you think it’s tacky for me to try to set up an charity donation  fund for my three youngest?  The greater probability is that they are going to be motherless soon, and without getting into scandal and dirty laundry, let me assure you, there is no one in either my family or my husband’s family that will do more than send a sympathy card when I’ve fought my final earthly battle.  No one is going to step in and say “How is Nate going to pay for child care?  How will the kids afford college?”  It’s not meaness, it’s just …. I don’t know what you would say?  The thought would never even come to their mind.   I would really like to get something set up for them now, because there are no guarantees that I will get through this battle with cancer, or in what condition to broach this subject later.

It’s really hard to figure out what to do now, when you aren’t even sure how long ‘now’ is, that will be there for your children later when you are gone.  I know that no one really knows how long their now is going to be, but probability wise, my now will be a lot shorter than most people reading this.

For right now, I’m sacrificing any “me” time to brush hair, play Uno with them, read to them and spend every possible moment with them.  But I keep wondering, is there something else I should be doing?

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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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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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The Stalker

    Most of us have heard about “stalkers,” people who fixate on a certain person – usually a celebrity, and dog their every step.  At one time, stalkers were more of a nuisance than a threat.  Not anymore.  From Rebecca Schaeffer (My Sister Sam) to John Lennon, stalkers are now considered heavy duty menances.

   People who have had cancer feel like we have a stalker too.  With the earlier stages of cancer, after treatment, patients can assume that they are cured.  But as the stages of cancer increase, there is an increased waiting time before a patient can feel “cured,” usually five years.  Stage four cancer can never assume that they are are “cured.”  We can be in remission, but never cured.

Remission can feel like “cured,” except stage three and stage four cancer patients have to remain vigilant and get tested often.

No matter how well we feel, when it comes time to be tested, we begin to worry.  Will the test reveal that cancer, the stalker, is back?

For a friend, I call her my “cancer buddy,” the stalker has returned.  She has gone through another operation to remove the tumor.  The other day, she had to get a medical port installed again into her chest wall.  In the coming days, she will go through another round of chemotherapy.  I ask that you please pray for her and her family as her body is deliberately poisoned (chemo) in hopes that any remaining cancer cells get poisoned and destroyed.

And  please say a quick prayer that her stalker, and mine, doesn’t return.

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