Monday, December 7, 2009

Keystone Cops Are Treating Me





I've been mulling some phrases over in my mind for my most recent visit to Moffitt. Referring to the people there as Keystone Cops are as nice as I can put it. Believe me, if I were talking to you in person, it would not be so nice.


This time it is the lab that is the object of my un-affection. But I'll get back to that.


So, we're all praying and hoping that this clincial trial drug is working. Every day at least 2-3 people tell me how amazing and "normal" I look. Yes, I use air quotes when I say that. The color of my skin is now healthy and I have a full head of healthy, shiny hair. I dropped 15 pounds just from being off of chemo. The steroids they give you with that stuff really plumps you up like something from Pillsbury. Most people I talk to are convinced that I look normal because the cancer must be gone or going away. I hope the same thing. I hope it's not just from being off of chemo and this is the calm before the storm. My hope of hopes is that the clinical trial drug is working miracles on those nasty hillbilly liver tumors.


We will find out for sure how I am doing the 1st week of January. CT scan in Tampa on January 5th and I meet Dr. Minton for the results on January 7th.


Tomorrow, I am having a brain MRI at MD Anderson Orlando and will meet with Dr. Bobustic the same day because he (in Romanian accent) "doesn't like to make people wait." It's a check in to make sure I still have that "normal" brain and that none of those pesky little brain tumors have returned. If there is activity in my brain, that will wreck everything and I'd have to come off the clinical trial. So pray, my lovelies, please-for tomorrow's test and next month's CT.


I look forward to my meeting with Dr. Minton to go over my experience with Moffitt thus far, in addition to getting on to the celebration that the medicine is working and I have less cancer in me now than when we began. The coordinator is doing better and that is going well. Of course, since the "echo" incident, I have learned from the staff that there is always an Echo Tech on call (hello, it's a medical facility) and that I should have never been told they were gone for the day at 11:30 AM and come back tomorrow. However, now I can get my Echocardiograms in Orlando, so something good happened from that. The nurses are still fabulous for the most part. But let's talk about that lab.


It has been our consistent opinion that the lab responsible for the clinical research unit is not as efficient as it could be. This last visit proved that beyond measure. Off the charts---crazy wrong awful Moffit lab-these words are too kind.


Every time I have to get an infusion or bring the pills in to take in front of a nurse, the first thing they do is take my blood then wait for the lab results. I cannot do anything until the lab results come back. In Orlando, it takes 15-20 minutes. In Tampa, it can take anywhere from 1-2 hours waiting on the lab. This is RIDICULOUS!!!!! The nurses just look at me like, there's nothing I can do, we're waiting for the lab results. So we just sit there. Waiting. Then once the results are in and your counts are ok, you can start getting whatever treatment you came for.


November 24th will mark one of the worst experiences I have had to date with ANY medical facility. It happened to be at the one now responsible for my life. I can almost hear the circus music in the background.


After waiting an unGodly amount of time for the lab results, definitely over an hour, I was allowed to receive my 90 minute infusion of Herceptin. Then I took the clinical trial drug. Because I have to fast 2 hours before and 2 hours after the pills, I was fasting for a long time. Remember, the labs will be back any minute now. So I was already hungry and angry.


This visit it was Christy and me, as Richard had to work. After getting to leave at 2 PM, frustrated with the inefficiency of the Moffit lab already, Christy and I made our way to the elevators which are pretty far from the Clinical Research Unit. By the time we reached the elevators, one of the nurses was running after us. She was out of breath and told us that we needed to come back to the Clinical Researh Unit because there was something wrong with my blood.


Now, a million things go through your brain at that moment, let me tell you, but the first thing was why on earth would the lab clear me to take the cancer medications if there was a problem with my blood?


So, I asked her, what's the problem? She wanted me to come back so the nurse who treated me all day could tell me. But I asked again-what's wrong with my blood?


"You're pregnant," she says.


To which I take a deep breath and say, "that's impossible. I don't have any ovaries."


Well, I had to go back to CRU with her anyway. There are 4 or 5 nurses sitting at the desk, most of them looking at me with anticipation. One of them says, "is there something you'd like to tell us?" I say, "yeah, there's no way I can be pregnant because I have no ovaries. This is ridiculous."


Jackie, the nurse that had been treating me all day, comes in looking frantic, as she has been trying to track down Dawn, the Nurse Practitioner (Heather no longer works there and Dawn has been assigned to me). I tell Jackie I don't have any ovaries and I'm not pregnant.


So, interspersed throughout my exchange with Jackie and Dawn, the nurses are talking to me. There is one nurse, we'll call her Jokey Smurf, who keeps making inappropriate comments which I'm sure she believes is lightening the mood. "What are you going to name the baby?" "I guess it'd be a surprise once your water broke" that sort of thing.


Another nurse, let's call her Stupid Smurf, asks if I'm sure they took both ovaries out. Maybe they only took one. Yes, Stupid Smurf, I'm sure they took both ovaries out. I'm sure you're usually smarter than the patients, but I'm quite sure. And BTW, I haven't had a period since May 2007.


Then Jokey Smurf asks if they put my ovaries in a jar and kept them. To which I replied, yeah, and I pulled them out and shoved them up there so they could make eggs for this occasion. Are you people kidding me?


One of the nurses, I'll name Helpy Smurf says, well, I have heard in a rare cases of someone growing an ovary. Really, Helpy? I told them all that if I magically grew an ovary and was pregnant, that would be about the worst news they could possibly give me. I was told that if I got pregnant, I would die because I have an estrogen driven cancer. That is why we decided to have the oopherectomy. So please do not tell me it's possible to grow an ovary. Come on!


And I'm really not holy enough for immaculate conception, let's face it.


So, Jackie and Dawn show up and I'm told they have to take more blood because they need the negative result. I asked what could make a false positive and no one gave me an answer. Ok, so then Dawn, the Nurse Practitioner says I think the real question is who's blood was it that tested positive? Yes, we were all thinking it and even your staff member called it. My blood must have been swapped with someone elses. Did that pregnant lady get chemo that day? So many questions.


While we were waiting for them to take my blood, I called Richard and told him I was pregnant. He laughed but when I told him what had happened, I had wished I had kept the phone on speaker. His rant about Moffitt's incompetence on this point was quite colorful and entertaining.


So they took my blood and said they'd call me if they got another positive result. On the way, I was like, hell no, you'll call me either way. So I called the coordinator and that was the 1st she had heard of this, of course. She said she'd make sure they call me either way.


So, we're driving back and are about midway to Orlando from Tampa. Now, the best word I can think of for this entire experience is mindfuck. That's what they did to me. The lab, the nurses even implying that I could somehow be pregnant. The whole scene was wrong on so many levels. All I can think of is, these are the people responsible for my care. Dear God, this clinical trial drug better be working and it better be amazing. You couldn't possibly put me through all this if it wasn't, right?


So Dawn calls us in the car and starts asking questions about the traffic. Where are you? Are you on I-4? Is there a lot of traffic? What is she doing? I screech into the phone-do you have something to tell me? She says, you were right, it's negative, you're not pregnant. Thanks. Good-bye awkward one. Hello, that should have been the first thing out of your mouth. What is wrong with these people? I'm sure the word they are looking for is that they are EMBARRASSED by this whole thing. And they damn well should be.


So, let's pray that this whole experience is worth it because the clinical trial drugs are working and I'm supposed to be a pioneer for future survivors. Yeah, let's go with that.





2 comments:

  1. Wow! I am so glad you can find humor in all this even though it is sarcastic! I am sure it's a nightmare for you. When I start losing my faith in humanity I look up...

    Psalm 121

    1 I lift up my eyes to the hills—
    where does my help come from?

    2 My help comes from the LORD,
    the Maker of heaven and earth.

    3 He will not let your foot slip—
    he who watches over you will not slumber;

    4 indeed, he who watches over Israel
    will neither slumber nor sleep.

    5 The LORD watches over you—
    the LORD is your shade at your right hand;

    6 the sun will not harm you by day,
    nor the moon by night.

    7 The LORD will keep you from all harm—
    he will watch over your life;

    8 the LORD will watch over your coming and going both now and forevermore.

    Keep fighting the good fight!

    ReplyDelete
  2. That is just unacceptable. I'm having a mindfuck of my own right now!

    ReplyDelete