Pretty little liars......

We were at the awesome, new Stephanie Speilman Center today for my 1st round in my 2nd cycle of chemo.  So I have one cycle of 3 weeks down, 5 cycles to go -- YIPPEE!!!

As noted before, the nurses at the OSU Trial Phase One Wing told me last week that I was done with Ro....... wROng.  Pretty little liars.......that I love.

I will be taking Ro the whole 18 weeks.  Making that 3 nasty days of chemo each week for longer than I want to think about.  Making that a crush on my WBC counts and platelets and body slam steroids than I do not care to put into perspective as of now.  Making that an almost 4 day recovery each week, that is too big of a picture to look at right now.  So as Kristi and Cal say - I don't look at it right now, I just look at this week........

I want the Ro badly because of what it is doing, but I don't want the Ro because of what it is doing.  I feel like I am crawling out of my chemo-cave on Saturday mornings and start to feel better, then slam into Sunday, not feeling so good again.  Then Monday, I try to find my cleanest dirty shirt, and do a week's worth of "stuff" in two days.  (don't worry, Scott is doing most of that and "secondary-chemo" is maybe going to kill him, poor guy) but it makes for long weeks of search and destroy and recovery. 

The appointments all went well.  In fact, I sideways confirmed this with Scott, and it appears that my Oncologist stated that I - trial member #6 - had been her best patient yet.   So she and the trial nurses in the lab last week all said to keep doing what I was doing - taking my nausea meds, eating, sleeping, doing the low-bacteria diet and avoiding every germ that might give my poor sinking white blood cells any kind of challenge whatsoever - that was all doing me well.   I suddenly felt it was kind of lonesome at the top of the trial heap here......

Scott agrees with my nurse friend and says that I am just a "chemo-super-soaker" - you put it in my body and my body cannot stand up fast enough and welcoming enough to show it every comfortable place it can creep into, lounge over and take down - read:  there's not too many places it has not found.....  So maybe it knocks me on my butt, maybe I turn downright bearish and hibernate and recuperate drinking large amounts of water and orange juice (frozen-kill the bacteria remember), black tart cherry juice, and beef.  I have been craving beef, plus my lovely 2 banana smoothie every morning to prop up my weight and get lots of calcium, magnesium and I even throw in Vitamin D3 throughout the day. 

All this aside, this morning we arrived at *ahem* - 7:20 on "icy roads" that had lots of warnings in Columbus - when we northerners 'up here' on days like today, just tell our kids "not to slide under the bus when they are getting on it - and if you do be sure and have your brother yell it to the bus driver before he pulls away" kind of thing - but it's a different animal just 100 miles south of us, yet we got there in good time to get a nice early, dreaded results, blood draw.

This blood draw lady encouraged me to get a port.  She is the only one so far, so I think as long as my veins hold out, we will "stick" with them (pardon the pun ;). 

Then we went to the appointment room to wait on Dr. M, and talked with her nurse for maybe 1/2 an hour.  Then talked to her Nurse Practitioner for maybe 1/2 hour.  During that time the lady came in to take my vitals.  I wasn't paying too much attention as we were answering 56 'vital' questions for the study, when the blood pressure lady says "wow, you're kind of low today".  I didn't even look because my blood pressure runs low anyways, and I tell her that - then I look - it was 88/44.

That kind of caught my attention.  That is kind of like 2 steps out of the ground in case you are not familiar with such things.  They thought I might be dehydrated and brought me in 4 - 8 ounce bottles of water.  I drank them all.  They really have no idea how much water I drink, but, I had not had my morning "usual" so I downed those pretty fast hoping that I was 'just dehydrated'.

They laid me down on the table to take the next one and it came up some.  Then gave me more water.  Then let me sit up, stand up, sit up lay down and it finally popped back into my normal range of 127/67 or there abouts.  And yeah, I was a little spooked.  And for the first time in my life I heard this phrase with a little-lot of concern "your temp is up a little - 98.8".   hmmmm????

Then I got a little emotional when talking to the NP and told her that I was a little concerned about my blood draw since I had already missed one week of treatment and knew what that meant for my type of cancer - and when she saw the tears well up because it really is that important to me - she left the room, tracked down the results and asked Dr. Ms permission to go ahead and tell me - and she did - they were ok to start treatment.

Imagine immense, sunny day beach, relief.

They still don't look pretty, but good enough for treatment.  My liver jumped on the bandwagon this week and stated it's very belief that we are all trying to kill it, but it also got the usual pep talk about "you are processing toxins - do it or die".....

She can say those kinds of things so sweetly. 

Dr. Mrowzik said her mother in Poland had been very sick.  I told her I had been praying for her and was so glad she was back in the states.  I also told her maybe half of Ohio was praying for my blood work results this morning, and she looked up at me, smiled and said "so was I dear Karen"......

And this is the most amazing part of the day - Dr. Mrowzik asked me if I was having any other pain (we had been through the other stuff ad-anauseum) and I told her that this was weird, and I didn't know if it was my imagination or not, but "I could actually feel the lymph nodes being attacked, squeezed and even a little choked".  I knew this was weird because that is not how chemo works usually - it works all over your body - not just at the cancer sight - so I felt a little sheepish telling her this.   

She smiled really big and said "this is what I was hoping you were going to tell me - that is the Ro drug working.  It is attacking the specific cancer cells." and she smiled some more.

All I can say is, well, hello Ro, my new worst best friend I've ever had. 

Then they kindly showed me to my chemo room, set me up with the preps, and excuse me, but I think my new chemo nurse had no idea how much my body cannot stand steroids - it might invite chemo in and let it take the car and tv too - but steroids is another story.  I think she pumped them in just a little faster than what they have been doing the last couple of weeks at OSU, and the blankets and the pillows flew across the room once.  Or twice.

But then that sweet injection of Benadryl takes over and I fell asleep.  Too long.  I woke up to the fact that my 8 - 8 ounce bottles of water needed somewhere to go immediately.  So I grabbed my iv pole and started purposefully to the bathroom.  Where we met both Chris and Diane. (Scott had thankfully thought to unplug the iv and was carrying the plug behind me- he's good in emergencies like that)

I was never so glad to see someone on a bathroom trip, let alone chemo room.  We had a really good visit and they let us talk a lot because you just need to talk about it although you are tired of it and don't want to talk about, but we did. 

We love them so.  And they are so much what God wants us to be in *community*.  How did we get so blessed? 

*********


So I ask a lot of questions of a lot of people throughout the day in those buildings because it's really a good way to soak up some information and get different viewpoints of the same view.   I asked my new chemo nurse today what she thought of the low-bacteria-diet as I know there is some controversy over it - and she said - drumroll please - "oh do go and get yourself some lunch - get out"....  I took her words trembling to heart and after we finished up and left there (after the not-so-fun wig-lose-your-hair-session which I am not ready to talk about yet) Scott - Scott himself who does not like to create a scene and ask for something as mundane as salt at McDonalds - walked into 5 Guys, asked them to use gloves (which they do we found out anyways) and got himself a cheeseburger and fries, and got me TWO cheeseburgers without the bun or any fun tomatoes and onions and lettuce and stuff - but it had been cooked in front of his eyeballs with no finger touches and can I just tell you how stinkin' good it was.

Tomorrow, we go back on the straight and narrow that my doctor suggests as she taps the table between us for emphasis; and the trial nurses who had to live through my rejection week meltdown spelled out plainly and painfully for me; tomorrow, we will be once again BACTERIA FREE.

But those hamburgers with no buns made on their grill were so good.....