The Big C

A journey through Stage Four Cancer

Suprised!

Some people come into your life and change, make it better.  Help you through the tough times.  Their very presence makes you feel so much better.

Well, today I was surprised by Lyanna coming into my hospital room!  What a welcome sight, what a wonderful visit.  Even as she visited, I could see her giving my IV pole the once over.  I felt safe anyway, Lyanna, made me feel safer still.

I hope God continues to bless Lyanna and her family.

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Stars Bursting In Air

You know, one of the biggest perks of being on the 8th floor during the 4th of July weekend, and I don’t blog it.

I was feeling down that I wasn’t going to be with my family for the fourth of July, and reminiscing about the fireworks and picnics of the past when I heard “BOOM”  and then a few seconds later “BOOM!!”

Well right outside of my window, some LARGE organization was firing firecrackers.  So, I hopped out of bed, raised the blind, and watched stars bursting in air, from my bed until twelve midnight!

Talk about room service! 🙂

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Up On The Roof

Well, not quite the roof.  I’m on the 8th floor.  I love this room, I call it the apartment, soo much!  I’ve even dragged members of the family into decorating it with me.  Where would we put a cook top?  Would we leave the window bank clear for watching the red tailed hawk that like to fly by every so often ? 

To go along with the perfection of this sunny room, it gets vacuumed and cleaned every single day, and it isn’t by me.  No, I get to be the Grande Dame and sit by the windows.

In the last few days, I have stopped vomiting, and I am eating clear – that means nothing in it it- chicken broth.  I have also had a PIC line put into my left arm.  The operation for it was done under local anesthesia and was mildly painful, but not enough to even bring tears to my eyes.   What is annoying is getting used to the feeling of it being on me. 

Through the PICC line, I am receiving a white fluid called TPN that is feeding my body what it needs.

This Hospital also has a Thursday crafts day, or art therapy day.  Whichever, I was given a wooden picture frame, paintbrushes and gorgeous acrylic paint and enjoyed a good hour or so painting the frame, and my hands.

If I have to be here much longer, I hope I don’t miss next weeks art day!

 

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Not now

I am writing to you from the hospital. I know your mind went immediately to an image of a green painted room with two neatly made beds in I, but in this case, nope, wouldn’t fit.

               It’s like this room was made in conjunction with a designer.  First, my door is a curtained sliding glass door.  At the direct opposite is a wall of four sunny windows, with blinds.  On one wall is the requisite hospital bed – this is a hospital room after all- and a chair  Across to opposite wall is a leather – y green couch and a wooden Ikea closet unit. Above the couch is a nice sized flat screen TV.  Down a short hall is a bathroom with a shower, and the hall ends in a four cabinet unit. In one of the units is a refrigerator!

              This could easily be someone’s apartment.

              Except that I am sick. In all this sunny yellow loveliness, I am sick.  Is it the cancer showing its lousy head again, or is it some kind of ailment that I am more subject to these days?

              I don’t know, my surgeon doesn’t know. 

              I have no doubt that he will know and soon.

              But right now, I’m sitting under the blankets and praying not to throw up again today. Not right now anyway.

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Lyanna

It’s really funny that someone is so very important in my life, and I don’t know how to spell her name, may-be because I never had to write her name, just say it.  Is it Louanna or Luanna?

Potato, potahto.  Lyanna is the nurse who always takes care of me when I go to the cancer center for treatment.  She is young, capable, quick.  She knows what the routine is, and she gets it done. She is no nonsense, and yet she is kind and compassionate.  The times I’ve been overwhelmed and teary, she has given me comfort and a hug.

I was thinking of her the other night when I couldn’t sleep.  Lyanna has been in the Peace Corps and she has gone to foreign countries on some of her vacations lately, to bring medical care to third world people who wouldn’t get medical care otherwise.  Although she is always professional, she still empathizes with us.

Lyanna

Will of  iron

strength of steel

heart  of gold

competent, quick, sure

knows procedure

gets it done

Her patients are hers alone

laughs, comforts, hugs

Amazon warrior

who would fight encroaching tumors

bare fisted

if it were only possible

Lyanna

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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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Not a Candidate

On Friday I found out that I’m not a candidate for radiation.  The spot where the lymph nodes are, has been radiated before and I also now have intestines in the way, so radiation is definitely out because the side effects could be bad. Really bad.

I was glad that the Dr in charge was so on the ball that he caught it.

So today I returned to my oncologist.  The only days to pass between the two doctor appointments was the weekend.  I am really grateful that I was seen so soon.

The plan now is to start getting chemo again for a while.  Other medicines are supposed to come on the market in the next few months, so I might be trying one of those later on.  But right now, the goal is to get rid of my pain, and the only way to do that, is for the lymph nodes to shrink.

I feel like I have been here before, and probably will be again.  But that is good because that means my chemo is still working.  Unlike Elizabeth Edwards, whose chemo stopped working.  And she died.

I am really, really angry right now, because  Elizabeth’s husband John Edwards, mistress Rielle Hunter has written a “tell all” book titled “What Really Happened.”  I first off, can not believe that she wrote a book instead of disappearing quietly into the mists of history.  I would be soo ashamed to be nationally, and may-be even internationally known as someone’s mistress, never mind the mistress of a married man, a married man whose wife is suffering from cancer.  Rielle acts as if she has achieved something worthwhile instead of bringing another illegitimate child into the world that doesn’t have, and never will have, an intact family.  Teenagers do this all the time, for Hunter to have done it, hmmmm, not such an accomplishment.

But what has me really, really angry is that she calls Elizabeth Edwards a “witch on wheels” because when Elizabeth found out about Hunter, she called Hunter at all  “different times of night and day, from all different numbers.”

Seriously?  Is Hunter that naive or just that self centered?  What did she expect Elizabeth Edwards to do to the woman who knowing Edwards was a married man, had an affair with him anyway?  Harassing Hunter with phone calls doesn’t make Elizabeth a witch of wheels, but having an affair with a married man sure makes Rielle Hunter one.

And Hunter claims that Elizabeth was “bonkers” for “being in denial about John’s womanizing.”  Really?  Again Hunter shows her self -centeredness,  Elizabeth has a family with young children, she is a Senators wife with the responsabilities that come with it, and she has cancer, with all the procedures, schedules, pain and heartbreak that entails, and she is supposed to face her husband’s infidelity too?  Really?

I’ll tell you what Rielle, you get stage four cancer and go through mesectomies and chemotherapies and the side effects and we’ll see how well you do with John’s cheating on you.  Maybe he’ll have an illegitimate child with that one too, for you to deal with.  If he hasn’t kicked you to the curb by then. 

And Hunter writes all this, about a woman that she participated in the ultimate betrayal of, who has been dead barely two years. 

Where is the propriety?

I can NOT believe that any editor would have given this manuscript the time of day, and I can’t believe any publisher would actually publish this trash.

How low we have sunk as a civilization!!

 

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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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Perhaps

Perhaps it’s because the pain in my groin has spread up to my lower left spine, or perhaps it’s because the pain has gotten worse, or it could be because I wrote a lens for Squidoo entitled “Cancer of the Colon” that I made a knee jerk decision and subscribed to a “newsletter”, notice the quotes, that arrived in my inbox at the most opportune time to hook me.  It promised to defeat cancer.  It promised a free newsletter.  I’m awake at 2:30 in the morning because of a burning sensation I get in my upper left thigh every day in the early morning now, what do I have to loose?

Nothing.

The letter was full of teasers.  What food does Bill Clinton eat that the rest of America throws away and probably protects him from getting cancer?  What ingredient both flavors cakes, eases pain and fights cancer?  Is your system acidic?  This ingredient blasts cancer cells with oxygen and kills them instantly.

What were any of these ingredients?  Not in the e-mail, although a few I could guess at, and one I looked up on the web with a simple Google search.

The newsletter came soon after.  It too was full of teasers, but no information unless I bought the book.  Or rather books, because within a day or so of becoming a subscriber I had received two more e-mails.  One offered me a money back guarantee, even if I used their advice and was cured of cancer.  If I wanted my money back, I could have it.

The one therapy that really caught my interest ended up being cesium, but not the radioactive kind.  However, over and over I was warned not to try this therapy without being under a doctors supervision.  On later pages it was stated that no doctor would put his neck out for this therapy, when they are all tied into big Pharmacy and chemotherapy.  So where was my doctor supervision supposed to come from?

Then I tried to even find cesium.  Impossible.  But it did keep me busy for a while and kept my mind off the burning and sharp needle stab in my leg for a while.

But it made me depressed too.  After doing some very preliminary research for my lens on Squidoo, I was reminded again that stage four colon cancer is in most cases terminal.  Even those with stage three colon cancer don’t fare very well.  And here I was chasing around for a cure, again.

There are so many cures available.  Caring friends who are scared to death for me, have told me about Cancer Centers of America, a really promising sounding clinic in Texas, whole fruits and vegetables, different supplements that cost about $100 a bottle.  I even tried a regimen that was in Suzanne Sommers “Knockout” book, but cancer has made my stomach very sensitive, and I ended up not being able to tolerate the supplements.  The lists of food I can tolerate has decreased too.

Maybe someday, modern medicine will use apricot pits, cesium and aloe, anise(?), turmeric, and mushrooms and actually cure people.

Will it happen in my 2 1/2 year window of opportunity? Doubtful.

So what is the take away lesson for today?  I guess to know myself.  To realize that I am desperate for a cure, and that makes me vulnerable.  And when you are vulnerable, there is always someone there to take advantage of it.Image

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MRI

It’s very rare when my Dr orders a MRI for me, but today I had my second ever MRI to see what is going on with my hip/groin area on my left side.  It was an ordeal.  I realized that I move around a lot when I am in bed, but I never realized how much.  It is a lot.  If I hadn’t been so tired, I would have realized the reason I do, is because I can’t lay flat on my back for long periods.  The MRI required more than twenty minutes of laying flat, and the pain was pretty bad. So bad, that when the tech told me the MRI wasn’t over, but that they had to give me a contrast, I declined. I just truly, could not lay flat on my back for any longer.  Even though I walked into the MRI office, I needed a wheelchair to leave.

Embarrassingly, I had tears not only in my eyes by the end,but spilling down my cheeks.

So what is the take away information here?  From now on, no matter what the procedure is going to be, no matter how non-intrusive and painless it is, I am going to ask if it is okay if I take a pain pill before I get to the office.

So:

1.   ask if you can eat and drink before any procedure

2    ask if you can take a pain pill before any procedure

Now I have to wait for the results.  I’m not overly hopeful.

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