Friday, February 26, 2010


I've been looking for some know it does get boring when you are a
"shut-in" even with all my electronics, books, puppies, etc. to keep me entertained. So, I have to admit I've been yearning for something different, some excitement.

I got it today!

First when I went to see Dr. McCourt for my pre-chemo check, she told me that my blood count was low again. She sent me to the lab to have the blood work done again...that means two needle sticks in two days.

I didn't hear from them yesterday so I didn't know if I had passed and if I should go to chemo this AM. I called and left a message at 7am. We got up, dressed and headed to Providence. I called again when we were en route and talked to XXXX, who told me that my white count was good and they were planning on me getting chemo. ALL RIGHT!

When I got to the center, the receptionist told me "XXXX left a lab slip for you to have a CA125 test done" (June usually draws this from my port, sparing me the needle stick) "they FORGOT to mark it on your lab slip for yesterday." That was BOGUS! I was going to the lab yesterday to have my white cell count checked. I got pissed....but I took the slip and went downstairs and had the CA125 drawn.

Even the ladies in the lab said, "hey wait, weren't you just here yesterday?" I said yes. They said, "what did you have done, maybe we can use it to get this test done." I told them "CBC" and they were bummed, because they couldn't use it. They still checked the computer to make sure that's all that was drawn. They drew the test and told me "you should find out the different tests that they do, so YOU CAN CHECK TO MAKE SURE THAT THEY INCLUDE IT ON THE LAB SLIP!!!" See, MY RESPONSIBILITY! So I have three needle sticks in three days.

It's not that it doesn't. It's the fact that my counts are low, I get stuck and I swell and bruise. It hurts the vein and creates more scar tissue. I have a lot of scar tissue all ready from all the times I donated platelets and blood over the years.

I am tired of this. I'm supposed to ride herd on everyone to make sure that they do everything they are supposed to do, the way they are supposed to do it!

So, I go back up and June takes us right into the back. I ask her, (NICELY) "XXXX, can't I get the CA125 test drawn through my port like before?" She gave me a funny look and said, "oh yes! Did you have it drawn downstairs?" LIKE SHE DIDN"T KNOW!!! Give me a friggin' break. I have had it with this bullshit! She makes mistakes and then covers it up.

I want my test drawn through my port....I have to save my veins. I'm insisting on it.

THEN....THEN! She says, "the protocol says that you are supposed to have your CBC drawn EVERY WEEK and it says that you were informed of this!" BULLSHIT! If I had been informed of this requirement, I would have been having it drawn every week and I would have a standing order for it at the Backus lab. I was never told! Maybe she was the one who was supposed to have told me? Maybe SHE screwed up....again?
Maybe I've gone through six weeks of the protocol missing an important test?

Sandy stayed while XXXX hooked me up to the IVs and started the benadryl. I insist on getting that first so I can be semi-lucid in time for lunch. Sandy left to take Lily for a walk and spend some time with her while I dozed off.

Things were going uneventfully. Sandy brought up my lunch and went back out with Lily. I got my Taxol (the really potent stuff) and then they started up the Carboplatinum...the one that has a high risk of allergic reactions. Sandy came up shortly after they started that one....and it's good that she was there.

A little while after they started the drug I needed to go to the toilet. I was getting warm too and took off my blanket (I freeze for a couple of hours there, it is SO DAMNED COLD!) and my fleece zippered jacket...and my hat. Then I started to get up as Sandy went around back to unplug the IV pump for me. I got real sick feeling as I stood up and things started going black and felt like vomiting at the same time. I thought, "this is a fine mess!" and I sat down and put my head down. Sandy noted that something was going on and reminded me to lay back in the recliner and get my feet up.

I did that and things felt a bit better. Then I got REALLY REALLY REALLY HOT!!!! I said, "I am so hot, I feel like taking all my clothes off!" Sandy told me I couldn't do that, but you know, I REALLY WANTED TO!
She got me a wet papertowel and put it behind my neck. Then my hands started itching. I mean REALLY itching. I was scratching them so hard. Then the itching started spreading to my wrists and forearms. Sandy got up and told XXXX.

XXXX said "itchy palms is the tell-tale sign" and I knew I was having an allergic reaction. My face was RED, my head was breaking out in hives, my abdomen was bright red...but what was funny was my suture line was Blazing White and all my stitches could count each stitch!

XXXX hollered for the kit and everyone came running. I heard someone hollering for a doctor or a Nurse Practitioner. Mary Artery, who is a Nurse Practitioner that I have seen before, came and supervised. She asked me questions while the nurses unhooked the chemo, hooked up a bag of saline and started pushing benadryl and cortisone into me. They also hooked up the pulse oximeter and the blood pressure pulse had shot up...but only 20 points...I get it higher than that when I at the gym...way higher!

I slowly started feeling less sick and the heat was subsiding, no longer felt like ripping my clothes off. I was still itching and it spread to my feet.

A doctor came in and asked me about the itching and then asked if I was having trouble breathing...which is what they were most worried about. I told him, "trust me, if I was having trouble breathing I'd tell you right off!" For awhile they were questioning if they should call for paramedics to come to take me to the ER. The doc told them that if I was breathing okay, the meds they were giving me was working and not to call for more help. GOOD!

Then XXXX screwed up the ending, made me sit there an extra 25-30 minutes for nothing. She is a mess. She also screwed up the lady in the room with me....during my "episode" the ladies pump went off and XXXX asked the Mary Artery (great name for a nurse, by the way) to hit the big orange button at the pause the pump. Then XXXX forgot that the pump was paused and the lady sat there for a LOOOONG time with the pump on pause. XXXX finally came to check, realized what happened and turned it back on. When someone asked her about it, she said "I guess Mary Artery was trying to help!" What a jerk. She blames everyone else for her empty-headedness.

Am I going to have a thesis worth of information to give to whoever is in charge of this program when all this is over. I was debating about whether or not I should say something, but everytime it gets worse.

I said before I was lucky Sandy was with me. I think if she had not been there I wouldn't have told XXXX about the symptoms I was having in a timely manner. I am reluctant to interrupt her as she gets so flustered and defensive. I probably wouldn't have said anything until the itching hit my feet and who knows, maybe I would have gotten to the breathing problems point. This isn't right.

So, I have my list of things to do:

Call Wendy and find out what the protocol says about having a CBC drawn weekly...I hope not...I want to spare my poor little veins.

Call Mary Artery and ask her to talk to Dr. McCourt about the Carboplatinum. Mary mentioned that maybe they would have me get my chemo as an inpatient, so they could desensitize me and observe me closely. I LOVE THAT IDEA!!!

By the way, XXXX didn't tell me anything about what my options might be about the carboplatinum. We had to ask her about it and all she said was talk to Dr. McCourt about it when I go for my next visit (which would be two days before my next chemo). Sandy and I don't think this is a good's not enough time to arrange for in-patient if that's the route we decide to go. I do want to keep getting the carbo, even though the side effects are the ones that bother me a lot--the cardboard mouth, etc. So, I'm not taking XXXX'S advice (SUPRISE!)...I'm going to talk to Mary Artery about it first.

I am going to insist that my CA125 be drawn from my port. I have to have it drawn at Providence, to keep it consistent. XXXX or whoever is my nurse will have to draw it from the port.

I hope I get to have at least one chemo as an inpatient and I hope that I get Marcia as my nurse. I called her and told her what was going on (I couldn't go visit her, I was too woozy). She said she would love to be my chemo nurse again.

So that was a long and exciting day. I have learned, as Charmine said, "watch out what you wish for!" I could use a little less of this kind of excitement.

But you, Dear Reader, have to admit that it's more fun reading this stuff than it reading about what games I've watched and how much time I've spent on the "throne," now isn't it? Yes, yes you are all sick, depraved people...thriving on the misfortunes of others.


HA HA!!! I love you are people "after my own heart."

NIGHTY NIGHT! (I won't sleep again tonight...not diarrhea...the cortisone sends me zipping along until about tomorrow afternoon)


Sue said...

Sorry to hear about the medical bozos you are dealing with...been there, done that. I didn't do it very well and still don't do it very well. MAY THE FORCE BE WITH YOU! Cause, if I offered you any advice you'd probably end up negotiating with the prosecutor for community service options. Dealing with the medical establishment is definitely frustrating at times...maddening...and scary.

Be grateful that you have enough on the ball and Sandy, with valuable experience on your side...there are so many who are outmatched and defenseless against an inane system.

Carol said...

Dear God, will it ever end??? How horrible...all I can say is we are all in for a load of crap...God Bless Us All....