Thursday, August 9, 2012

Courage Karen, Courage....

I've taught quite a few Sunday School classes over my years in churches, and some incidents stand out and are just simply hilarious.  On the other hand, some memories are sad or very poignant.  There were times when you could watch kids start to process what you were saying and maybe even internalize the idea then apply it to what was happening in their lives at that moment.

One that has stuck with me a long time, just because it made me laugh, but it also was exactly how I felt sometimes, was from a little boy that maybe graduated from high school this year - so it's been a while.

The group I was teaching that quarter was a split of five to seven year olds, and we were studying the life of David.  When we got to the part where David is hiding out from Saul in the middle of desolation with his six hundred Mighty Men, and they leave to go fight with the Philistines and are rejected, so turn home.  Upon returning to their town of Ziklag that had been given to them to camp in they find to their great horror all of the town burned, all of their belongings and worse - their women and children are gone!  The men immediately turned on David blaming him, and David in turn cried out to God.

I asked the class if anyone had ever had a bad day where they just felt like the whole world was against them.  One of the five year olds raised his hand - which was brave when sitting amongst so much older seven year olds - that sneered at anything a five year old could think of - but he raised his hand and said "sometimes when my teacher and everyone else in my class is mad at me, I just like to put my head down on my desk."

Perfect.  He perfectly understood, related and responded.

There have been times in my life, when I, like little Heath "just want to put my head down on my desk".

Today, I had a blood draw and two appointments at the Stephanie Spielman Center.  My blood work has finally all come up into the "low-normal" range - which is good - and a long train coming as Bob Dylan said once.  Or twice.

My surgeon is still immensely pleased with my incision healing, my tubes output and said I had been the perfect patient.  In fact, I had been so good, he pulled another drain.  

It didn't hurt so much this time.  But I'm not bragging yet - there's still one left.

I have to keep my arm pretty much immobile for two more weeks and one more drain pull - and then I jump into physical therapy to undo what the surgery and four weeks of immobility created.

I'm all zen and cool with that.  I've seen a lot of surgery incisions and his is excellent, so I trust him.  I can do this.  What my friend Linda had told me - "that after chemo the surgery is just kind of a hiccup" in so many words - was true.  The first two weeks were not all that great, but I feel like a couple of days ago I just jumped from "recovery ward" into the "waiting to get out and live again ward".

Then, I met with Dr. Mrozik.  She is still very pleased with my pathology reports.  Myself and the other study subject that had her surgery the same week, have greatly boosted her study numbers.

I'm quite glad for that as well.  And feel very blessed to have been directed through a series of events, to what looks like a divine appointment with her.

I asked her what my treatment plan was now, since my tissue and lymph glands "had shown 100% response to chemo", as they like to say.  She pursed her lips, put her hands together, pointed her fingertips at her mouth and said "I was wanting to talk to you abut that".

My smile I'm sure faded a bit at that familiar gesture of hers.  It precedes all bad news.

She said, "I still want you to do the extra rounds of chemo".

I just wanted to put my head down on a desk somewhere.

It's two chemo drugs given in four chemo treatments once every three weeks............................................................................................................................................................................................................................................................................

That's three more months of chemo.

This had been placed on the table when I showed no difference - therefore maybe no further response - on the ultrasound and mammogram in May.  Follow up radiation treatments once a day for six weeks had been placed on the table a while before that.

I expected the required radiation treatments to not have changed, but had hardly dared hope,  had *hoped* somewhere deep inside, that with such a good pathology report I would not need the next round of chemo drugs.

I didn't cry.

She told me if I was 40, there would not be any option - I would get the extra chemo.  If I were 75, she would not recommend it.  She said "you are still very young" (I liked the *very* part) "and it would be good to do it."

She wanted me to do it.

Because of the type of cancer I have and the higher chance of recurrence.  Because it is so invasive and so aggressive.  Because I was off chemo for five weeks before surgery and my blood counts were the lowest making my immunity maybe below zero.  Because there might be that one cancer cell lurking around in there somewhere that took advantage of that low immunity.  Because of my lower back pain.  Because of my symptoms that showed up the last half of chemo.  

There are enough "what-ifs".  This extra chemo is "just to be sure".

I hedged.  My last memories of chemo are not all that great.  I really thought that if I would have had that last chemo treatment in June, I would have been down and out.  Done.

I felt so bad those last couple of months of chemo.  I have never felt so weak, and my body so vulnerable to succumbing to any disease my entire life.  Even including an encounter with Graves disease a few years earlier.

Chemo literally knocks out any feeling of new life within you each day.  It makes you feel like you rest and sleep but nothing has "regenerated" or "renewed" within you when you wake up.  Instead, you feel as if you are stepping down a steep slope of a dark desert canyon that you may never climb out of.  You feel like one tiny misstep, and you fall beyond the words of hope.

I hated the feelings of weakness.  I hated knowing what this was doing to my body long-term.  I still cannot even squeeze my fingers tight enough to push fluid out my own drains - Scott still has to do that for me.

I feel like I just got part of my brain back somewhat.  I can read again.  Think again - albeit still limited and not on top of things yet.

I so did not want to hear what she was saying.

She continued, "women who have a 100% response to chemo - as you have had - and then get the two extra chemos, move their chances to 95% of not having recurrence for five years".

She knew she had me now.

OSU is fond of their information hand outs.  The nurse brought in a spiral bound notebook explaining the two new chemos and their side effects.  The tag line with these drugs is EXTEME-NAUSEA.  And, like before, the drugs will do their blood work damage 7 - 14 days after treatment.

The nurse looked at me and said "just like before, you need to be germ free those days"..... my heart was sinking.  I am so weary of living "germ-free".

But, I thought to myself, I can do this.  I am at least still *living* to be weary.

I put a little flag on my sinking heart, trying to get it to stand up and be courageous.

Then Dr. Mrozik said the words that sunk the flag, my heart, the whole boat.  She said "because of the nausea and the higher risk of your body reacting at this point, you will need to take steroids at home for three-extra-days".............................................................................................

I was stunned.  She looked at me and said she knew how hard steroids were on me, but there was no option.  I told her Scott might move out if I had to do that many days of steroids.  She looked at Scott to see how accurate my statement was, and he smiled and said "I'll just move to the basement."

Thanks, honey.

There are no options on the steroids, no possible way to weasel out of taking them.  Period.

Dr. M said, "the good news is that you can take the 'growth recovery drug' this time".  It's an injection that has to be given in your fat 24 hours after your chemo treatment.  And we all smiled, because that was the drug I could not take to help my blood recover the first six months of chemo.

She said she would check out insurance, because one injection is $4,000.  Our smiles faded a little.

We found out later after a series of phone calls that if we are to take the drug home and "self-administer" - meaning myself or Scott would stick in the little needle 24 hours later, much like some diabetics do every day, making it completely 'doable' - but if we take the drug home to do that so I can vomit in my own bathroom and recover in my own bed, our insurance only pays $1,000 of that $4,000 charge.....  Of course, if we stay over night in a hotel room full of germs and then go in and charge our insurance for another appointment the next day, they pay more.

Ugh.  I wanted to lay my head down again on that desk somewhere......  I think I found the hole in the discussion of health care reform that I would like to have put on the table.........

But, what a blessing children can be.  We have two beds in Columbus made up for us anytime we need them - with complete Lysol spray treatments.  They * even * said * I can use that bed when juicing on steroids.  Kristi grew up watching the Incredible Hulk in total horror once a week, and she said if it comes down to it, "we can just do what we need to do to curb the 'steroid-beast' - lock it in the basement"......

A total mom moment - I tried to raise them to be practical.

So today, I am spending my time grieving this all some, because the second part of that Sunday School lesson so long ago, was to cry out to God when you are in those moments of putting your head down on your desk.

Then I am making up a list of all the good things I want to eat before chemo once again steals my senses of taste and smell, all the people I want to see before germs become an issue again, all the places I want to go.

And do it all in the next three weeks.

We stopped at the Cheesecake Factory for a late lunch yesterday - something we have not been able to do with all of our trips to Columbus before due to chemo and it's resulting issues.

It was so good.  I have lost ten pounds the last three months and need to gain a little weight to get my blood up a little bit more.  I'm not skinny, but it's not good to head into chemo with your blood work still a little on the low side.  They keep telling you to "EAT", so I'm bulking up.

Talking with friends on the phone, the texts, the emails have all been awesome - thank you all.  We are heading out soon to buy Scott his requisite JC Penney's white shirts for school.  He won't tire me out too much - he knows what he wants, gets it and we then leave.

It was good yesterday to stop at Barnes and Noble and just hold and look at books that 200 other germy-hands have touched.  I could do that and hear the kid coughing in the next aisle, and not have to leave.

It was awesome.

Something came back these past couple of weeks - my sense of taste, my sense of smell, my eyebrows and eyelashes came back the week after surgery - and that was awesome to wear sunglasses yesterday and not worry about wiping off my eyebrows - but so much has come back that is glorious - like the smell of shampoo - that I am loathe to start that descending path of chemo again.  

Pray that I get "my fight on", and head into this with courage.

There has been a lot of bad news lately that helps to keep this all in perspective.  A cousin of mine was taken to the James Cancer Center this week.  My dear friend from work years ago is in University Hospital fighting a courageous battle.  She is getting IV steroids.

That's a tough woman.

So, I know that I will come to the place of realizing I can do this, I can do this, and I will walk in the front doors of the Stephanie Spielman Center and say a big "I'm back!" to all of my dear chemo-nurse-friends and get into my bed, do the chemo and do the steroids and get through it.

There's a lot of courageous folks all around me.  My cousin Joe, has done chemo for four years.  I am amazed.

So I line all these people up in my mind, and I walk in those doors and do what I need to do to fight this monster.  This evil.  This leaven that left unattended will flourish and take over again.

And pray that God again goes before me, after me, and most of all beside me to help me through it.











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