My Ugly Foe Again........

Please let me know if you have issues opening this - I seem to be a downright genius when it comes to picking up viruses and such on computers..... I need help.

***

I got into treatment today and it was closer than I thought it was going to be.

As you all can probably recite with me by now, I need my Grans, Absolute line to read 1,000.  It was at exactly 1,000 today.  They have started to manually count it, so the computer will not slide me in under that count doing what computers do best - being too cold and calculating and just plain callous.

To me it makes no difference if the computer coughs out a number like 999.96.  I'm like "that's close enough!!" and call out a "Mulligan!!"  But that puts it under protocol and we cannot proceed.  Understanding this, there are some good people in the OSU lab that actually spend their time counting the cell grids themselves.  They triple check it to be sure that it's not just "human-desire" over-riding perfect counting.

That's a lot of time on their end and I truly appreciate it.

I appreciate all of them.  A lot. 

My hemoglobin dropped a lot, and my white blood cells as well.  I knew I had been tired, but I didn't think it would drop this much until next week.

And you all know what next week is -- THE END OF CYCLE 6 FOR STUDY SUBJECT #6!!!!   The end of this go around of chemo - and it doesn't look good for my blood making a showing at the OK Coral next Wednesday.   

I need a little extra ammo here.

Julie, my favorite study-nurse-manager was not overly optimistic about next week - but, like me,  she isn't assuming anymore either.  She reminded me that after the chemo reductions last month, and then my lowest white blood cell count ever, that I surprised - well really it was God that surprised - everyone just a couple of weeks ago, so who knows.  There are a couple of plans being plotted out if that eventuality happens.  We cannot, do not want the surgery date changed out another week as of now, and she is going to bat for me.  Again. 

I love her.

***

On the other hand, maybe you have picked this up, but it was not a good steroid day for ole' Karen here folks.  I told the new-to-me-nurse today, that even though the steroids have been reduced, I still have great issue with them.  We have mutual feelings for each other - I grudgingly respect steroids for what they do, but I hate them.  And they feel the same about me.

Only I think they greatly lack the 'grudgingly-respect' part.   

I told the nurse that the steroids and injectable Benadryl still need to be delivered s.l.o.w.l.y.  She had a "shadow" today and was explaining how she can do the IV set up and deliver all three Taxal/Ro pre-meds at the same time, and the same speed.  No one has ever done that before - either there or at OSU main campus, greatly respecting the reactions some people have to these pre-meds if given too quickly.

Scott was watching as well, and said the same words nervously out loud and clearly - "she needs them really slow"......  It's always good to have a patient advocate close at hand that remembers dire consequences and spinning heads. 

Alas and alack.   She did not listen to either one of us.

I kind of thought I might be on the losing end of things when she spoke against one of my doctors orders last week.  She said "don't worry about that".  I have a tendency these last weeks to be obedient and not listen to the ones mocking caution at this point.  I mean if I had flown through treatment with good blood counts and no transfusions and no side effects, I might be thinking "over-cautious" myself.

But, I'm leaning towards the one most likely to be called "Sheriff" when the dust settles and the shoot out is over. 

It made me a little nervous from the start. 

After the rogue-cowboy-nurse left, I was in the danger zone again, with "head-exploding" signs going off all around me.  After whispering some vile, angry things to Scott, he made a hand motion to lower my voice.  I was too late to get a room today, and was in a curtained stall.  Everyone could hear everyone else.  Even tight whispers. 

I clamped my mouth shut.  Tight.

I was ready to pick up that brand new IV pump and stand and throw it through the fourth floor window.  If I were a baseball pitcher, I would have beaned every batter.  And been glad about it.

Roger Clemens may be innocent - I do not see this level of evil-hateful-anger in any of his film clips at the time he was supposedly using.   Although his jaw is clinched I've noticed.....

If I had not purposely clamped my mouth shut tight, I would probably be making a return trip tomorrow to beg forgiveness. 

But the nurse proceeded to tell me while she showed me and the "shadow" her technique, how she can setup and push all three plungers at the same time into the IV ports - because she said, and I quote, "I certainly don't have twenty minutes to sit there and administer meds"; then she told me how some seventy year old women had responded; then laughed.  (I'm guessing I will not be thinking kind thoughts towards her when still awake at 5am either.......)

She had no idea how close she was to eating that whole IV stand, IV ports and plungers.

I kept getting angrier and angrier, meaner and meaner and my brain just went into "leave no prisoners" mode, and I wanted to draw out my six shooter and square off with her right then and there.

She needed to do all the pre-meds in under one and a half minutes flat, because, you know, she needed to stand out in the hall and talk for twenty minutes.

I'm guessing this is why they do not publish hospital personnel addresses.

They were super busy today, so another one of the nurses that is wonderful and has been my nurse a couple of times, stopped in after the Taxal was finished, took one look at me and said "are you ok?"  I told her, and tried to laugh as I said it, that "I just need a big sledge hammer and a huge stone to take out some 'roid rage on".

She was a little concerned, wondering if I might be reacting to the Taxal, as I really didn't look so good and the Taxal reaction risk increases the more you get it towards the end.  My eyes were pretty sunk in, and I was a little pale even with makeup and shaking with an oven warmed blanket over me.  She removed my port needle, personally went and got me some pain reliever, and gave me a big hug as I was leaving. 

That helped.  A lot and a little bit.

I overheard fast-plunger-pusher-nurse telling a new patient the computer print out of probable side effects of the chemo pre-meds.  When she got to the steroid part, she said the words "some people just get meaner and meaner".

I think I ground off half of my molars at that moment. I might even have exploded a few blood vessels at that moment. 

My next script may be for a chemo mouth guard to save my jaw joint and molars...... 

***

So, it ended up being a very ambivalent day again.  I got into treatment, but my blood counts were lower than anyone wanted them to be today.

I had another bad experience with steroids.  And they won. 

Carbo kicked my butt, again.

Someone had a light in their eyes though, when she said "hey, you surprised us all a couple of weeks ago and had higher blood counts than you should have then" and I got a chance to say "yeah, God really moved - that was a miracle, wasn't it?" 

I saw sweet Dr. Mrozik in the hall today and she clasped her hands and smiled really big, then hugged me and said "not too long, now Karen!!"

The non-hugger is hugging a lot these days.  

Scott and I were counting on the way home today and added up:

I've had 17 Taxal treatments.  Six Carbo treatments.  (Please properly shudder when you hear that word in high dose amounts.)   Forty-nine doses of Ro chemo.

Seventeen doses of pre-med steroid.

Since D-1 Day on January 10th, I've had 72 doses of chemo.  

That's a lot of "knock-down" and when Kari was kindly unhooking my port needle today and wrapping up my used IV and needles and tubes in a nice taped up plastic drape to throw away properly, some tears just dropped out of my eyes because I cannot process those steroids sometimes, and my head hurt so, and she said "you've had a really hard day" and she looked even closer at me and asked me again if I "was ok".

I told her "it was actually a really easy day" and "I didn't know why I was feeling this way", except that I had missed my wonderful "Benadryl nap"; she said "you've had a lot of chemo, more than most, these last months, Taxal is hard on you at this stage of the game".......

And fast steroids.  

Then she went to get me some pain meds.

I still haven't slept.  In fact, I can't quit the fidgeting and moving and low shakes. 

I go back to what I have learned this week - that I should not, cannot deny the hardness of this valley in the desert.  But, God is setting up that banquet table in this wilderness, and I am looking over the exquisite table and thinking of the goodness of sitting down to a banquet in the presence of my enemy.

***

One more thing weighs heavy on my mind - I know one that has had a much harder day than I had today.  Her husband posted this on Facebook this morning:

"Pray for us today as we go to the Cleveland Clinic main campus. We will be checking into gamma knife surgery to treat the 3 brain tumors that Linda has. Pray that we'll make the right decisions about treatments."

Linda had breast cancer and started chemo treatments a couple of years ago.  She started emailing me in January when she heard of  my diagnosis, giving me tips and advice and foreknowledge of what might happen with things that you just don't talk to anyone else about unless they have heard similar words directed towards them.

She too has an aggressive breast cancer, only her's is "the other kind" which I don't know so much about, but similar things happen, and it was so good to have her to contact me and hear first hand what happens and some of the fallout from it all. 

She was done with her chemo treatments well over a year ago, and then *this* just last week.

I admire her courage greatly.  I pray for her all the time.  Her kindness and openness and honesty will never be forgotten.

Some folks say the internet is impersonal.  I have found it in this instance to be a lifeline.  A treasure given to me to prepare me and calm me and help me when staring down those gunmen.

Somebody to hold my hand when I don't even know which way the bullets are coming from.  Someone who feels the same way about steroids that I do.  Someone who just reached out and helped tremendously.   

I humbly ask your prayers for her.  She's a fighter and loves God.  And has a super husband-caretaker that has been awesome. 

She has had a heavy day, and is heavy on my heart.

I love her and send her internet hugs.  

***

Today, I was touched by different women in different ways.  I hope I never forget that some un-cautious and indifferent words and actions can lay one person low and change lives. Another can make me go continuously before the throne of God on her behalf.  One, with a few kind words and pain-help, can help me get home without spitting out my hurting brain.

If we are to live in community, we must not forget how pain shapes us.  How pain can shape others we touch.

***

Years and years ago I memorized the 23rd Psalm.   Mostly, because in my ignorance, I did not understand the phraseology of "I shall not want"..... I thought memorizing it and meditating on it until I "got it" would help.  It did.

And it is still with me today.

I love David.  I love his honesty in the difficult and hurtful, and downright shameful things in his life.  He killed a lion when young and remembered that all the days of his life.  He remembered a lot of things by writing them down and leaving them for encouragement for others.

Kind of like what Linda has done for me - be honest, write it down, and encourage others.   Only our God sets a banquet table for us in the middle of the desert.  Only our God anoints us with oil.  Only our God overflows our cup. 

A Psalm of David.

23 The Lord is my shepherd,

I shall not want.
He makes me lie down in green pastures;
He leads me beside quiet waters.
He restores my soul;
He guides me in the paths of righteousness
For His name’s sake.

Even though I walk through the valley of the shadow of death,
I fear no evil, for You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You have anointed my head with oil;
My cup overflows.
Surely goodness and lovingkindness will follow me all the days of my life,
And I will dwell in the house of the Lord forever.