Sometimes, I think there is not one thing left to be said about chemo that I have not said already.
We are again entering into the chemo boxing ring, round 2. ding.
The bell sounding the start to this event is pathetically ambivalent itself.
I showed up at my beloved Stephanie Spielman Center on the proper date, proper time, opened the doors and walked in smiling, saying a warm "hello" to my dear check-in lady Jane. We laughed, she said she was glad to see me. I told her I could not be more pleased to be back.
And I meant every word.
In case you are that one out of a thousand people that I have neglected to mention this to, I. don't. want. to. do. this. chemo. round. But when you walk into a facility where not only your doctors and nurses are the best, but everyone from the front desk to the check-ins, from the lab folks, to the EKG people, MRI, mammogram and ultrasound - all these people want the best outcome for you, and they truly treat you like they like you, and will earnestly do their very smartest-best for you - you can't help liking a place like that.
But I had decided I was going to explore this "extra three days of steroids thing" one more time with the staff and doctors there. I might have looked all congenial and all, but there was a cement wall inside me that didn't want to budge.
I put on my "power-lips" lipstick and we all had a chat. It was a pleasant chat as I love them all and would never be stupid enough to alienate the best medical-relationships I have going on in my life right now, but I employed the old adage - "the squeaky wheel gets the oil" -- meaning I whined enough about the upcoming steroids for this treatment, that they picked up the phone and talked with the main pharmacist on staff there and he quoted a new study on the use of different follow-up-chemo-meds with these chemos and that we could try them maybe.
The pharmacist on the other end of that office phone had me at "we could try" ..... I was all in.
Let's see, using steroids for three days or jumping head first into the briar patch? I'd choose the briar patch every time. Um, rolling down a steep hill littered with big boulders, or three extra days of steroids? The boulders could not be that hard. Or, three days of steroids or driving a school bus full of juvenile delinquents? Well, it wouldn't be fair to the kids.
I have great regard for pharmacists. They have educated me, helped me, given me good advice, so I was on board. But this was beyond the brightest star - imagine as I heard those words from their "best" pharmacist, David Cassidy playing in the background .....oooooooohhhhhh I THINK I LOVE YOU...... http://www.youtube.com/watch?v=Ttmp5JapObw (The Power of Women banner is just a bonus here folks)
This man was able to cut my steroid dosing by three-fourths. He could have cut them by 1/8 and my brain still would have burst into song.
Over the phone they went back and forth and he said I could work around the steroid thing. I told them to tell him that even though I did not know who he was, that I *love* him on the spot. I told them if I saw him at that moment, I would kiss him.
I was a little bit embarrassed when the nurse laughed and told him to get his lips sanitized and ready for when he met me in my chemo room. (Imagine me, a little red faced hearing the words "we'll see you upstairs in a moment"...) I did not know I was going to have a meeting with him as well..... When they hung up the phone, the nurses were all laughing. Scott was amused as well.
Smugly amused I thought.
Now, I feel a bit sheepish. BUT - there is now a new "No Steroid Dance" that only happens in the halls of the third floor of the Stephanie Speilman Center.
***
Doing the steroid-go-around might have all come down to the fact that they were a little afraid for Scott. My daughter and her non-profit Domestic Violence work place have done a lot of seminars with hospitals, doctor's offices, law enforcement and such, training ones how to determine if there is violence in the home, then how to handle those patients and get them safe. So she always asks me "did they ask you?". Meaning did they ask the DV question? "Did they have everyone leave the room when they asked it?"
I'm like her little James Bond in a pocket.
Stephanie Speilman Center is big on asking the question, but because Scott is who he is, they don't ask him to leave the room. So they score 50%. In fact, this one might have been a bit different, I might have been the only patient where they thought they should ask the caretaker, not the patient. Something like "Sir, after your significant other is dosed with steroids do you feel safe at home?" At which Scott would have laughed, and they would have thought maybe he was laughing to cover up his pain, but he would say "I'm guessing that on her last steroid blasts she could have thrown my favorite tv out the front window and it would not have hit ground for 300 feet, no problem". He didn't say that, but he is just the teeniest bit afraid of his prized tv, and you kind of got that all in one look from Scott.
They *got* the ugly steroid picture, so I meet the main pharmacist.
For the record, I only promise to kiss other guys who are much younger than I, or that I have no chance of meeting. He ended up being neither, but the tips of his ears were a little pink until I told him he was completely safe with me.
He did complement my hair, but did not seem disappointed that the promised overly exuberant kiss was now off the table...
I told him my brain was all on board for this round of chemo, understood it, knew I needed it -- but on the other hand, my body was flailing and screaming bloody murder. In fact, he said he had noted the drag marks in the parking lot from my heels that morning.
The down side to this, was the fact that I would still have to take a mega dose of IV steroids - 20mg - which is like a bazillion mg dose to me - of steroids IV before getting the chemo. That's pretty standard on the first dose of chemo whichever way you wander through the chemo countryside, but the caveat was - the carrot in front of my brain and body was that the next day I would not be taking oral steroids that explode my brain, but rather a different drug. It's an unusual drug and I am not going to put it out there because it is the funniest thing around - but they said it does work for chemo patients and does slap down nausea for those three days after chemo as well as the steroids do.
I'll take it.
The Pharmacist even brought up a drug schedule for me, showing me how to change out these drugs, and then, glory to glory, he even helped make up a schedule for the "drop-off-day" when you switch over your anti-nausea big guns, to the lesser hand-held affairs.
If you know me very well, you know that when I hear a diagnosis or treatment plan, I am all over that. I look for the side effects. I look for drug interaction. I look for warnings. I look for the base in this drug they are using for treatment. I have a good idea what the chances are for success.
With these two chemos, I didn't even try to memorize what the "A" stands for. I was pretty sure the "C" stood for cry.
This go around, I trust them pretty much. There is great value in getting treatment at a research / teaching hospital. I have had doctors and nurses in my room discuss why one treatment or one drug is better than another. I get to hear a lot that may not normally be open for discussion in other treatment facilities.
I feel like I can be a little lazier this time around. They know what they are doing, and they have set up protocols to make chemo look like a whole nine inning ball game without an error.
So I'm back in. I had the IV steroid ever so slowly administered on Friday before they brought me my big three beautiful red syringes full of what is basically mold off of some plant. Then I had the Cytoxin drip. I was thrust into the midst of despair when I found that I was not going to get a Benadryl IV pre-med this time around.
No nap time with toasty warm white blankets for me this time around. So they brought me another blanket just to indulge me.
Abby reminded me that I at least did not have to fast with these chemos. So it's a fair trade-off maybe.
My nurse Abby was wonderful. She is awesome. She has my undying love and devotion. We talked for twenty minutes while she slowly, slowly, slowly delivered that evil steroid monster DECADRON!!! (doesn't that drug just have the most perfect name??)
And if you have never witnessed a miracle, nor believe in them, you should have been in my room after she pulled out that Decadron syringe that was hooked into my IV.
I got a little hot all of a sudden, I got a little irritated all of a sudden, but. that. was. it. 20mg's of steroids plunked into Karen, and she is not threatening to take over the world. Or at least demand somebody's head. There was no rumbling volcano ready to explode and exude hot coals on all around it.
It was a miracle that might have a good medical explanation behind, might not, but I will take it either way.
We were all pretty amazed. There were times that I was a little "sharp" in my comments, but I felt no need to fling around furniture and such.
We stayed overnight at Kristi's house then went in for my Neulasta injection, as we were adverse to picking it up and paying the $3,000 to do it at home, and they were the best hosts. Popop got a lot of "bounce Evie on the couch" time in and even got some "guy-football-time" in with Cal. They were pretty gracious letting us crash there.
It's not been a picnic, but hasn't been too bad, either. Think the kind of flu where you feel like you were placed inside of a cement mixer truck for three days. Your bones all hurt and you feel pretty nauseous, but you can still climb out of it. My nurse Abby called me on Tuesday and said "I have been so worried - how are you doing without the extra steroids?" and I honestly told her better than expected. She said "That's great!"
She knows that "better than expected' means I'm not vomiting. It means I'm not sicker than a dog. It means that my stomach is in torment and turmoil, but the meds are soothing over that. She knows that it means I don't have mouth sores today, but it feels like there are maybe 13 ready to pop out.
So she tells me what she always tells me - "Keep eating!!" "Keep Going!!"
***
God has so blessed us. We have no idea what our co-pay will end up being with this $4,000 Neulasta injection. I do know that OSU seems to have the most amazing coding system for bills - meaning I have not had to sit on the phone for hours with our insurance company fighting charges - the treatments are billed and coded correctly taking out that sick-person-caught-in-the-middle-angst.
But we are blessed. I have a husband who continuously uplifts me and holds me tight, I have kids that have married some great people and they all hold me tight, and I have five little wee ones that I absolutely could not adore more. They lift me up.
I told Chloe and Zoe last week that my hair would all be falling out again, trying to get them prepared and not be alarmed or sad or scared. I told them I was so glad that I had a HOPsital that took such good care of me and that I was glad when they put needles in me because it meant they were making me better.
I iced that cake pretty thick.
They looked a little sad and mournful, then Chloe walked up close to me and said "even if you don't have hair Grandmum, I think your pretty!"
Pre-schoolers just don't say things like that. They are dear. And I am blessed.
The knock-down has begun, and my eyes are sunk in and Scott says I am walking too painfully again, so I'm stepping back down into this canyon again but have all those around me linking to my safety rope, guiding me along.
I passed a little cancer patient in the hall of James/OSU when getting my Neulasta injection on Saturday. Those kids rip my heart out.
So, all in all, I'm doing just fine.
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