Saturday, February 27, 2010

The Day After

Sandy went off to an agility trial in Rhode Island today with Truman. The other three snuggled in the bed with me. I got up at 10:30, because Bubbles decided I should get up. I let them out to pee and got my protein shake and we all went back to bed. I sipped my shake, downed all my vitamins and supplements and then just laid there for about two hours, relaxing with the pups and reading the paper.

Jean showed up at noon...she's spending the night here to be with me while Sandy works. I thought that was overkill, but after I took my shower I felt so woozy and I was happy she was there. I sat in the recliner and she made me a cup of soup and a chicken salad sandwich! She spoils me I swear!

Last night when I made my blog entry for the day I was steaming mad. I calmed down a bit today and edited out the nurse's name. I shouldn't have put her name in there. And, maybe someday she'll read it and sue me, who knows? Anyway, I calmed down a bit and as they say, "cooler heads prevail."

That's me in a nutshell...I get "hot" and then I think about it and cool off.

We know what we have to do now and we will do it. Sandy and I know what we have to do. Again, I am SO LUCKY that I have her with me all the way.

Watched the Huskies play Georgetown and Tina Charles have a wonderful game to end her career in Connecticut. Tomorrow the guys play Louisville I believe. They need to win this one too. But we will be watching the Americans play the Canadians in hockey. The only hockey game we'll watch for the next ten years! I swear, I haven't watched hockey since the "Miracle on Ice Game" and you know how many years ago that was...I believe 30???

I have to call Maria to work out the trip to Sweden details. We have to figure out the dates and where and how. It's getting more real now. She's going to love it there. I know I do.

Well...back to the Olympics!

Nighty night

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)

Thursday, February 25, 2010

Nine, nine, nine,nine,nine, let's sing a song of nine!

That's my CA125 level! NINE!!! Anything under 30 is considered normal!
After I heard that news I felt a great weight lift and I was so ENERGIZED! And HAPPY!!

Jean and I high-fived and then I had my pelvic exam. Everything "felt normal" according to Betsy, the Nurse Practitioner.

They are concerned about my diarrhea. So, they are giving me a prescription for.....get this.....Tincture of Opium! Jean and I both gasped aloud when Dr. McCourt said this. I said, "sounds sinister," while Jean was thinking of a Chinese opium den, with the pot or whatever it is, with the hoses coming out of it.

Anyway, obviously they think they need the "big guns." We'll see how that goes.

I can't operate heavy machinery when I take driving. Given my history of getting loopy on the mildest of drugs like that, I think I should avoid the blender!

I came home and the diarrhea started up again....I went to bed and slept for a few hours. I'm hoping they can stop this diarrhea and I can get some sleep.

They think this problem is more related to my gastric by-pass and not the cancer, chemo, etc. It is a rare side effect of one of the chemicals I'm getting. So, hopefully, it is happening just because my system got all riled up and when it calms down it will cease.

I don't really mind it now...just knowing that my cancer level is so low puts me in a place where I can tolerate anything!

Nighty night!

Wednesday, February 24, 2010

Trying to regain my serenity about going to the doctor tomorrow. For some reason, I am really nervous about what I'm going to hear. I haven't felt this way before in this whole process.

I shouldn't say "for some reason" I know the reason. Tomorrow I should get my the results of the CA125 test they did the last time I was at chemo. It would show the effect that the first round of chemo had on the cancer. I'm hoping it shows that it has knocked it down significantly.

The "for some reason" is really more about me not feeling the confidence that I used to feel. Maybe it has something to do with not having Dr. McDreamy any more...although I do like and respect Dr. McCourt. Maybe it's because I really feel tired and run-down most of the time. Something is making the experience this time around feel different...I have to admit it, I am not as confident.

I want to be confident and I'm hoping that the old feeling of kick-ass confidence comes back. I'll bet if I get good news tomorrow my confidence level will be flying high.

Jean is coming with me to the appointment. That's different, it's usually Sandy or Lynne. Well, Sandy is working tonight so she won't be in any shape to go on a road trip. Lynne has to work, so she's out. Jean is willing to go along even though it may be "bad news" tomorrow. I consider anything less than a significant drop in the CA125 level.

Of course, I exaggerate. I will consider any drop in the level as a good sign.

But I really want it to drop a LOT...under 30 would make me very happy.

The next episode in this melodrama coming up tomorrow night....

Nighty night!

Tuesday, February 23, 2010

Not much going on here, except more snow that we don't really want, or need. I suppose if we have a drought this summer, I'll be regretting that last sentiment. That's the breaks. Deanna and Lorraine came by Sunday. I took the opportunity to get out. I drove down to Norwich and we picked up pizza and brought it home for lunch. Of course, Maria called me while we were out and now thinks that I'm out galavanting all over town!

It was nice visiting with those two gals! They had gone on an eagle watch and had some great pics and videos. I downloaded them onto my computer. A cormorant had dropped a fish and two eagles were fighting over it. I tried to post it here, but for some reason it won't. I'll try again another time.'s a great video.

The Husky guys are coming back with a vengeance! They have won three in a row now, including over #3 Villanova and #7 WVa...which was the game last night. I'm hoping they pull the comeback of the decade and win the Big East and go far in the NCAA tourney. I have two dogs sleeping on my lap. The same two who were snuggled up to me all night. Bubbles and Rocky, of course! Bubbles still growls at Rocky and is very possessive of me, but I note that once Rocky gets in the bed, she snuggles up to him, just as she snuggles up to me. It's sweet, really. I haven't watched much of the Olympics the past few days...I'll have to check out the American hockey team. They beat Canada the other night...maybe they'll keep on going. Now I'm listening to Howard on the computer....later I'll read some more of Ozzie's biography. I'm too cool for school.... Later!