The Big C

A journey through Stage Four Cancer

The High Cost of Cancer

This will be a quick update.  It shouldn’t be a surprise to learn that my cancer is once again active.  There is a study going on that my doctor thought I would benefit from, but  unfortunately, my i’s weren’t dotted and my t’s crossed in time, and I missed out on being a participant.

Plan two, a new medicine has been approved for use in the United States and my doctor thought that I might benefit from that.  It would be two pills at breakfast for two weeks, so 28 pills.

I dropped the perscription off at the drugstore and was told that since it was a new medicine, it might be a while before it was able to be filled.

Surprisingly, I got a call from the pharmacy soon after I dropped off the prescription telling me that my insurance had covered the medicine and my co-pay would be $2,800.  I was in shock and was mentally resigning myself to the idea that I would not be taking this particular med and that the doctor would have to go back to the drawing board on method of attack on this onslaught of cancer.

The woman at the other end of the phone call agreed that the co-pay was high, and gave me a number to call that might be able to get me financial help.  I called the number, and was connected with another nice woman.  She asked me a few brief questions on our family size and income and a fax number to fax the first two pages of our last year’s tax return.

A few days after that, I received a call that told me that I had been approved for financial assistance. Remember what I wrote a few blogs back?  Be careful that the wolf you think is at your door is actually a wolf and not a rambunctious Labrador Retriever.

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MRI Results

My Doctor called today with the MRI results.  I thought it would be a tumor, but it isn’t.  The cancer has spread to the lymph nodes in my groin.

I’ll be scheduling radiation soon.

http://www.squidoo.com/Why-the-Lymphatic-System

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A Little Rain Must Fall

They say into every life, a little rain must fall.  This past week my life has had some showers.  It started nicely enough on a beautiful day when my son offered to take me for a walk around the neighborhood.  On the walk, I saw some unusual flowers, and I asked him to stop.  The flowers were a dark purplish blue with some bright yellow.  They were very small, smaller than flowers people usually plant in their yard.  I thought it would make a nice picture for my blog, so I took out my ever trusty Olympus 820 Stylus and turned it on.  The LCD screen had black lines in it, and the edges of the picture were jagged.  I tried to take a picture anyway, and it came out much too dark.  Not ever being one to give up at a first, or even a twentieth try, I took another picture.  Still to dark.  Well, to make a long story short, the screen image continued to degrade, until my pictures all looked like they were an acid trip from the 1960’s.  The objects I took pictures of were not identifiable.  When I got home, I tried to find advice on the Internet, but instead found out that Olympus would charge $80 to look at my camera before fixing it.  Then they would fix my camera at about a charge of between $150 to $180, which is about the cost of the camera new.  Talk about being bummed!  As a last desperate attempt, I reset everything on the camera and …………………my camera began to work again, taking great pictures.  I thought I had dodged the bullet until I turned on my camera today to take a picture, and the screen was back to being a horror show!

So, I am upset.  I know that my dear husband is not going to want to purchase a new camera anytime soon.  Shouldn’t a camera last more than 6 years?  The lens and all the motors are great, but that doesn’t help the situation.  And I am lost without a camera.

Then, as you recall, I was too sick to go to my last doctor’s appointment.  Today I wasn’t too sick to go to the doctors, well until this afternoon when I found out that my camera is broken I wasn’t sick.  So I saw my oncologist today for the results of my CAT scan.  The results are good, everything looks stable.  The cancer hasn’t grown in my abdomen.  Oh! Here comes another shower!

Because, as I have mentioned before, I have pain in my left groin.  Well a bit of pressing and the talented hands of my oncologist found something.  The CAT scan hadn’t scanned here.  Is it cancerous?  It seems safe to assume so, but he also pointed out that it could be infected lymph nodes, a benign growth, anything.  We don’t know for sure until after I get an MRI and it is read.

Just a little shower.

Yesterday was the end of my novena to Our Lady of Good Success.  You can follow this link for more information about this apparition.  I found it interesting and very relevant to our times.  Perhaps, after this novena to Our Lady of Good Success, whatever is in my groin will be found to be benign and not cancer?

And if it is cancer?  A little more rain will fall.  But like Jesus, the Lord I profess to follow, I must say “But not my will, but your will Father.” Luke 42:22

Thank-you for reading my update!

 

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The Wheelchair

Well it’s time for another update.  Do you remember the way Nate and I argued about getting a handicapped tag for me so that we could park closer when going to the mall?  I was for it, because if I was feeling good, I didn’t have to use the tag to park in a handicapped parking space.  Nate fought against it because he thought if we had it, we would use it and we’d get lazy about keeping my legs strong and walking.

Well, little by little, my hip area has started to hurt too much for me to walk much.  It used to be that I’d walk through the mall, and have to rest for a few hours afterward.  Then, I couldn’t make it through WalMart, and would have to rest on the bench while the family finished shopping and checked out.  And then rested for hours at home later.

There is no longer any fooling around, I hurt.  I walk from my living room couch to the bathroom, and it hurts.  I walk from the bedroom to the living room and it hurts.  I can’t stand long enough to prepare supper any more.  My world has become my house, because unless the store has a wheel chair, I can’t shop.

Finding a wheel chair has been impossible.  I have called churches, charities, community centers, lending centers, thrift stores and even a pawn shop, to no avail.  Renting a wheel chair was $80 per month, and I wasn’t willing to have another monthly bill.

Nate to the rescue!  He scanned the Net and found one for under $200 and free shipping.  It was on back order. Now it isn’t on back order any longer, and I should be getting it before Christmas.

All great news, at least physically.  Mentally, I am not prepared.  I have always been a walker, a big walker.  I’ve walked all over creation as a child.  I’ve always gone on walks with my kids.

Not anymore.

“But we like pushing you Mom!” my kids protest.  “We don’t mind!”

I mind.

I am at one time both grateful for Nate’s perseverance in getting me a wheelchair and ungrateful to have to use it.

Interesting position to be in.

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Chemotherapy “Goody Bags”

It might seem funny to call these bags, goody bags, because when you think of a goody bag, you usually think of little paper bags filled with small wrapped candies.  The kind you get at birthday parties or for Halloween.

This is a bag that you need to make up for yourself, or for someone close to you who is going to start chemotherapy. 

This might not be everyone’s experience, but this is my experience.  I can only write about what I know and I very much welcome the comments of other people experiences.  So please feel free to comment.

When I first started chemo, I felt pretty healthy and I walked to the treatment.  I carried my purse, with all its contents.  I bought a book with me.  My husband bought a crossword puzzle book with him.

The next time, I bought all the same things with me, but I bought a crossword puzzle book with me.  The next week, I traded the crossword puzzle book for a word search book.

Somewhere along the way, my body started to ache at the end of the treatment.  The food that the clinic offered it’s chemo patients was absolutely not something I could eat anymore.  The snacks made me sick.  I realized that I couldn’t read the books that I bought with me, I couldn’t concentrate on the puzzle books.

By the end of my treatments, I would walk into treatment, but not with the same vigor as I had previously.  The clinic had a smell to it, and tears would come to my eyes as I got close to it.  I’d leave the treatment in a wheelchair.  I’d sleep the hour drive home.

I no longer brought my pocket-book with me, and I prefered to wear two zippered sweatshirts to wearing my winter coat. It was just too heavy for me now.

My next round of chemotherapy wasn’t as bad.  This time I was prepared.  I got myself a very lightweight, zippered tote bag before my treatments even began.  This would be my “goody bag.”  At Wal-Mart I was able to pick up a clear plastic, zippered bag to hold smaller items inside of my tote bag.

There was no question of me driving after my chemo treatments.  This is something you need to know before you start treatment, because you need to know how you will get to and from treatment.  In my opinion, even if you can drive to and from the chemo treatment, have an alternate driver just in case as the treatment progresses, you find that you really can’t drive yourself anymore.  The American Cancer Society has volunteer drivers.

My husband drove me to treatment.  Since he would always bring me, I asked him to carry my Drivers License and the medical cards.  Sometimes the clinic asks for these proofs when you are signing in for treatment.  This way, I didn’t have to carry a wallet with me.

These are the things that I found that I either needed, or made my stay more comfortable:

1. a small, though not tiny, bottle of hand sanitizer

2. lip balm

3. small packet of tissues

4. fruit flavored gum

5. Crossword Puzzle book.  This is where having someone with you helps, when I couldn’t concentrate on the book by myself, my husband would read the hint, prod me for an answer and fill in the blanks.

6. An E Reader.  Don’t save money here.  Buy a few different types of books.  My choices were the newest Debbie Macomber , Cedar Cove series book,  a collection of Agatha Christie books and Ozzy Osbourne’s autobiography.  Many different types of stories and writing styles.

7.  My Ipod with Solitaire loaded on it, and most important, its charger.  You will be surprised how quickly the battery will die while you are undergoing chemotherapy.  The Ipod is nice and small, and you can keep in touch with net friends this way.

8. A small bottle of your favorite hand lotion, for when your skin feels annoyingly dry

9. A roll of Lifesaver candy

10. A bottle or two of my favorite beverage.  After chemo, I couldn’t take things that were cold.  This way my drink was the perfect temperature for me.  And staying hydrated is soo important during chemotherapy and the days afterward.

I didn’t bring a blanket with me because the clinic usually has them, with the added benefit of  also having a blanket warmer.  At one point, my wonderful nurses would trade my blanket for one right out of the blanket warmer every half hour or so.

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Great Update

I went to my oncologist on Halloween , to tell me the results of my latest CAT scan.  I call it the CAT scan from hell because I’ve developed an allergy to the contrast fluid and had diarrhea from shortly before the scan until about a week afterward. Not fun!

The good news is that my tumors have not increased in size or number.  I am scheduled for another CAT scan after all the holidays are over, sometime in January.  The bad news is that the Dr told me that more chemo is in my future.  With all the good news, I asked how needing chemo fit in?  I was surprised, and a bit take back.  The short answer is that the kind of tumors that I have won’t stay dormant, at some point they will start to grow again and I will need chemo to knock them down again.

I wanted to yell “No!”, but this is his profession, he’s seen this beast many times. He knows.  But I’m not laying down with a lily on my chest.  I am going to continue to start every day asking the Immaculate Heart of Mary to be my Patroness, to ask her son to please grant me either a remission or a cure.  I’m going to continue to take my vitamin D and my yucky mushroom supplements.  I’m going to try to keep a cheerful mood .  I am going to continue to refrain from alcohol because that is what the Dr’s have told me to do.

I am going to continue to take it day to day, and be grateful for the day that God has granted me.

The bills continue to be, spectacular.  Today I don’t feel guilty for living.  My family is grateful to have me.  I am continuing to write my book “The Development”, although inspiration hasn’t been as strong as it was previously, but maybe that is because I am now writing hoping for commercial success instead of just telling a good story.

I’ve also taken pictures of my daughters cats with pumpkins, Jack O’Lanterns and Christmas garland and then submitted them to SnapFish Stock Photos and had them accepted.  I’ve been told not to expect to make my fortune selling photos, but anything I do make will help pay the bills.

I still have the pain in my leg, the mystery pain because it isn’t from the tumors.  I’ve been trying to find a wheel chair from Craigslist, thrift shops, even pawn shops, to no avail.  Maybe people are selling wheel chairs instead of donating them in this economy?  My knight in shining armour has come through again, and ordered me a new one.  It should be here before Christmas, so soon I won’t be home bound anymore.  Even walking in my yard is too much for me now.

So, there is my mostly great, update!

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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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Cancer has

Cancer has

made me a different person, but if you didn’t like me pre-cancer, I doubt you’ll like me post cancer.

Cancer has

made me more patient with my loved ones and less patient with people who just want to stir up trouble

Cancer has

made me dead tired and yet I can’t stay in bed much later than 6:30 in the morning because I don’t want to waste a minute of my time with my children.

Therefore, cancer has

made me more annoying to my children, and yet they don’t mind helping me.

Cancer has

made me less independent and more dependent.  A hard pill for an adult American to swallow.

Cancer has

not made me more religious but made me a firmer believer.

Cancer has

not made me less of a sinner but more repentant

Cancer has

made me realize every cloud has a silver lining.  Even the cancer cloud.

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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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