The Good, The Bad and the Ugly......

I'm stealing this title from my daughters blog..... Thanks Heids! 

This post should start out with something like - "we got really good news yesterday".  And we did and it was pretty awesome and we were praising God.

But........  If you can imagine opening a door in the middle of a beautiful forest and finding a downward spiraling staircase, and each step you go down takes you farther d.o.w.n from where you want to be, I opened it yesterday.  

If you wonder with all the tornadoes in Ohio this week, where in the world the wicked witch landed with her house on top of her, wonder no more.

"Roid-Rage" hit pretty hard again last night.  It was kind of a haphazard day stacked from the beginning, to end in such manner - I should have seen it coming and just taken one of my sweet Ativans much sooner than I did.

It started out with me being Dorothy finally seeing the Emerald City from the edge of the forest, the beautiful fields of poppies, the glorious gold city and all the hope of finally seeing the end of a journey and finding home and rest.

It started like that.

It ended with me being the wicked, evil witch,  sending out the monkeys to capture the poor idiots trying to do good and help......

We left home at 5:50am sharp yesterday - meaning I got up at 4:30 to take my thyroid pill, then ate a piece of peanut butter toast for breakfast at 5:30am.

Traffic was a little heavier, but Scott did well, and we made it there by 7:30.   I immediately went off for my ultrasound - which is part protocol of the study and something that was missed three weeks ago, so they were frantic when they called yesterday because of that, but they were also insisting that I get it - they had to see what Dr. Povoski examined last week to know exactly what was going on. 

They took an hour and a half to do the ultrasound.  At first she*couldn't*find*it.  I just looked up and "smiled-cried" - there had been no problem finding the dark angry blobs for my first ultrasound, and then in the biopsy they were easily seen as well.

I heard for like the 634th time "you have really dense breasts" - which makes it hard to see anything correctly on a mammogram (always get a digital mamm if you hear those above words ever); makes it hard to see on an MRI; makes it hard to see smaller ones on an ultrasound.  She thought she found them, but they had changed shape from the baseline ultrasound lesions, and she just couldn't be sure.  She called in another technician and she took equally as much time to find what she thought were the correct spots too.  I can feel that whole lymph gland chain in my arm to my chest to my breast, so I told her I thought it was the correct spot, too.

We had to go over the whole history again as the baseline ultrasounds were done at another hospital, and she turned to me and said the "m" word that no one has said for a while and kind of caught in my throat, but she said they called them "malignant" right?   Little reminders not to float too high.  


THE GOOD:

Back to the ultrasound - Evil x 2 is still in there - they both are - but they look as if they are not as dark and powerful as they were 3 months ago..... THEY ARE HALF THE SIZE.   Still ugly, but half the size.

That's with missing two treatments.  That's with being knocked on my ass with the study-trial phase one for weeks and weeks and poor blood.   I have only done two full cycles of chemo. 

As Dr. Bauer likes to point out - that is billions and billions of cancer cells - gone!

That's with a lot of prayers.  I say it again for emphasis:  that's with a lot of prayers before the throne of God in heaven. 

Imagine the flashing APPLAUSE PLEASE sign.  

The two oncologists and trial study nurse and 2 NPs that examined me yesterday, all talked with me individually, took down all the 59 questions again -- and all of them laughed a little when I told them how pleased Dr. Povoski was last week - and that he even smiled at me - and some even had a short intake of breath when I related that he even had a little look of wonder in his eyes.  Dr. Bauer said I didn't need any more miracles - I might have already received my allotment with just that.  They all think he is the best surgeon, hands down, but love him as he is and are glad to hear him happy at times, just like the rest of us.

They said he was so pleased, and they are so pleased because even though I have missed two chemo treatments, I am rather ahead of schedule on "shrinkage".  Which is good - the more cancer cells the cancer eaters get now, the less that can become resistant later.  Amen and Amen.

THE SOMEWHAT BAD...... Here she opens the door in the sweet smelling forest and starts the step down of the day...... 

After my long ultrasound I go straight for my blood draw/IV placement and meet again the local vampiress for their building, and on this my whole day hinges.  Everyone says she is the best, but the nurses placing IVs in the OSU Trial Phase One are like the Lexus of the group of IV setters, and everyone else falls somewhere into place under them.  They were awesome at finding veins and setting a smooth easy insert of that butterfly cath.

The "Vampiress" might fall into the Ram Truck field of IV setters -- she's tough and she can find them and set them, but it even makes me wince sometimes.   She wears pink scrubs, is maybe older than me, cat rimmed glasses of sorts, uses fluorescent pink fingernail polish, and then kind of talks like she might have shot 3 groundhogs in her backyard last night.

She finds the vein, but she is more of the "poke it hard to get it through my 'tough skin', then has all the problems that go along with that method - you might hit the opposite side of the vein going in that ruggedly, you might actually dig into the wall of the vein and make it useless..... I want to help her.  I wanted to tell her if she punches it, to wait a second before she starts pushing it.  I wanted to call in my veterinary friends who could place a smooth easy insert IV cath on fearful-jerking-biting dogs and not even see the dog flinch.   It goes in, they didn't even feel it, and voila! you see blood trickling out.

Some people have that skill and some people force that skill.  I want the naturally skilled ones.  I only have like two options of veins left for next week before my port goes in.  This could be interesting.   

So while she is deciding where to try next - and to be fair to her - my veins are done for a while - but while jab-and-poke lady is trying to decide my next best vein, I get my blood pressure taken, and again it comes in at 88/44.  Last week it was 63/31.  It's not as alarming as it was the first time and I drink some more water and whisper to her that the my 'usual girl' has found the "other" cuff to be much more accurate on me, she tries it and I am back into my usual range.

Vampiress says she likes my shiny shoes.  And I told her it was nice to wear something other than house slippers as with my blood work being down I haven't been out for the longest time.  I told her I had become quite a "germ-a-phobe" and she said "good girl!".  Then she proceeds to show me her secret for malls that use recycled germy air and plane rides - and she takes her little pinky, pretends like she has a tube of neosporin and she says, speaking Paula Deen style soothingly and educationally - "you just dab that on your pinky and rub it into your nose and it kills a lot of those germs when you are in those sit-u-ations".....  She put both pinkie fingers into her nostrils for the sake of demonstration purposes.  But she said "try it - it works".

Needles do not make me feel woozy, but this old germ-a-phobe almost passed out on that one.

And she never used the hand sanitizer after that.  The phobic in me is ready to die.  

She steps down a cath size, tells my hand to "keep that in and behave y'all", and tapes me up and sends me on to my appointments.

If you are watching the clock, I am now almost noonish.  I have not eaten since 5am, and am getting a little nervous because I cannot eat two hours before my Ro pill which is given within nano seconds of my IV Taxel being started, so the countdown is over for me as I think I will start my chemo soon and am already inside that "two hour fast time" before the chemo starts.

Not true.  I get into my chemo room, sit down, and - wait.  I'm finally told that one of the pharmacists mixing up my 3 drugs is off today.  So "they are really "scrambling" down there".....(I'm adding that phrase to "the things that medical personnel should not ever say" list)  You scramble eggs.  You scramble in football.  You scramble around the bases.  It's not a good image for a patient waiting for pure poison to be plopped into her body being formulated by those that are "scrambling" .....

I still can't eat because I don't know the start time.  The third time she comes in she starts my pre-med set up at 1pm.  They finally show up at 1:30 and my Ro is administered at 1:45.   So now the official clock start for eating after Ro means I'm not eating again until 3:45.......

Lions and Tigers and Bears, oh my.   These steroids are not going to like that at all.....

I actually wasn't starving, but was plotting the best way to get in the two hour pre and post fast for the drug, be on our way home for an hour and 40 minutes and not be too hungry after steroids to get really mean....... like we have learned from previous surprising head spinning errors.  If you fatten her up after the steroids, she is a much tamer animal.....   I had packed some lunch - two applesauce tubs and a can of peaches, but only ate the applesauce tubs, then dozed on the way home. 

OH, THE UGLY......

It had been a long day.  We did not disconnect from the IVs until  3:40pm, got on the road fast to miss traffic, and pulled up at the light on 250 about 5:15.

I just wanted to go home, eat, and go to bed.   Scott said he could "whip" into Buehlers and be out in 10 minutes.  I felt a twinge of 'roid-rage perking up -- he was lying.  That is not possible.  He has to talk to 48% of the shoppers on any given "fast" trip to that store.  And linger. And look and see what's new.  He loves that store...... I knew he couldn't do it and I just wanted to go home.  He didn't want to drive an extra 20 minutes home, 20 minutes back in, then another 20 minutes home.  I reminded him I wanted to sell the house last year and move closer to 71.  That was his decision.

I'm stepping down that spiral staircase pretty rapidly.  I am watching Dorothy sleeping in the poppies starting to wake up.....

He pulls into Buehlers and I beg him not to talk to anyone and just get out as fast as most normal people do.  He said 15 minutes max.  My eyes are barely able to focus, and I am still in wanting to *just let me sleep* mode, but I very handily pull out my nifty little timer on my new smart phone that I don't like - especially on steroid days - but I pull out that timer and start it.

Oh those 'roids are beginning to move stealthily through my brain..... I text him at 15 minutes.  No answer.  I text again.  No answer.  I call him at 20 minutes.  No answer.  HE IS TALKING TO SOMEONE AND I KNOW IT!!!!!!!  I call him again.  No answer.  And worse, he is 'silencing' the call...... my brain on steroids is one steel trap - and I know what is going on.  A mother dragging two toddlers has been in and out with two bags of groceries and a gallon of milk. She pulled in unbuckled two kids - shopped - and has buckled two kids back in and is on her way.

Oh, he is so talking.  He's talking.  At 26 minutes I call again and he finally answers and says he is on the sidewalk......

The mixture of poisonous chemicals that are floating and swirling around the crystal ball suddenly fumes up and sends out the foul smoke that the beyond-hungry-exhausted-steroided-witch has been looking into, and she commands "RELEASE THE MONKEYS - GET THEM (or just poor hapless all alone Scott as it is).......

She grimly yells at the monkeys pointing out everything that is wrong with the world - wrong with living 20 minutes on this side of 250, wrong with not moving when I wanted to last summer, wrong with the money, wrong with eating now.  It was all wrong now and there was no calming the starving steroids.  The one thing one should never do to a good super dose of steroids is *starve* them.  I walked in the door, and went directly to bed.  But once the 'roids are aroused, they don't go down easy.

It was a long, hungry, ugly night. 

I wish I could clean this up some, because the good news of the day was so very good and I want to give God the glory for it all.  But the down side is that these drugs are just *nasty* at times and hit you in odd ways and at odd times.

And I 'm guessing Scott will be on the phone today trying to find the one sterile restaurant in Columbus that we can quickly stop in and pick up some grub to feed the 'roid beast......

And the funniest thing yesterday - the thing that caught Scott's ears even more than the "good shrinkage news" was that they were going to try to make my carbo experience better this time by sending me home with -- STEROIDS......... Scott had to sit down in his chair and hold his head for a moment taking a moment to soak in that news.  The doctor asked him if he was alright and he lied and gave a shaky "yeesss".

Yeah, me 'roiding it up.  I'm betting I gain 5 pounds this Carbo week.