There will be a separate update on the amazing Tour de Pink ride by Richard and the awesomeness that was Jake and Laura in NYC with Jennie, but that will come later. Let's talk about the medical mumbo jumbo today and we'll get back to that (hopefully with pics) soon.
We dropped Jake off at school and drove to Tampa for the day o' tests. We checked in with the Clinical Research office and then waited for about an hour in a room where no one came in. My 1st appointment was for an echocardiogram at 11 AM. Heather on the research team came in around that time or just after. Stay with me, this info will be important later.
Heather brought in the 21 page consent form that we have already read and went over its contents thoroughly, which is what she was supposed to do. She said she would call over to the echo folks and let them know that I'd be late. (again, this will be important later) We went through the consent form, I signed it, initialed all 21 pages, etc. It was quite helpful and Heather was a delight to meet. She also did a physical exam which I passed with flying colors, functioning things functioning normally. Yay.
BTW-I can't eat fruit. Or drink fruit juice. Any fruit. At least for the 1st cycle (30 days). No smoothies, no chocolate covered strawberries, no bananas for potassium. Something about the way things get absorbed by the body. Now I'll have to eat more green leafies to make up for it. Dammit! Another thing to get mad at cancer for!
Then Kathy came in and we finally met face to face so she can see the annoying girl behind the phone calls. It felt like a reunion and everyone was very nice. It was going on 11:30/11:45 at this point. I asked about someone coming and taking my blood so that I could eat because after 12:30 I wouldn't be allowed to (scheduled CT at 4:30 PM).
A wonderful nurse named Chris came in to take my blood so I could eat. I did have enough time to start making a stick person, with gauze hair, out of a tongue depresser. We all loved Chris and I knew the stick person would have to be of her--especially because she would be the first at Moffitt to "stick" me. As we were laughing and getting to know one another's fabulousness, Chris mentioned that the echo people kept calling the receptionist asking where I was and she said she would take my blood and send me over there. I added a love note to the back of the depression stick girl and gave it to Chris as a momento of our 1st date. I'm sure she will treasure it always.
After the blood taking though, they decided to do my EKG there in the office. During this time, a frantic, official looking blond popped in to see where I was. Chris told her I would be right over for that echo and she said ok and ran off. We did the EKG and then my good ol' buddy, Kathy came back in.
Kathy said I would not be getting the echo today and not to send me over. I asked why and she said, you'll have to come back tomorrow. I asked why and she said I can't get the echo today. Again, thrice, I asked why and she said all of the echo people had left. LEFT FOR THE DAY. Me: Ok, let me get this straight-no one else in this hospital can do an echo? Kathy: No. Me: Do you have any relationships with other medical facilities that might be able to do it while we are physically here in Tampa? Kathy: No. You'll have to drive back over tomorrow for the echo.
Seriously? Is that all you got Moffitt, by way of solutions for the patient?
Me: Can we try to set up an echo in Orlando and send the results over tomorrow. Kathy: Let me check. (time passing and bullshit still lingering in the air) Yes, do you think you can arrange to have it done tomorrow. Me: Let me call and try to find out.
Then I initiated a series of phone calls to the schedulers of MD Anderson and Orlando Health who were as baffled as I was that the patient was trying to set up her own echo. Could someone at Moffitt have offered to contact my doctor at MD Anderson because their echo techs are a bunch of assholes? I should think so. But that's not what happened. I found the solution. The patient. It was also becoming clearer that they need me to choose Moffitt as much as I need them to get me into the trial for new meds.
I gathered what I needed from the schedulers and left messages for my doctor who ordered the echo through the schedulers on behalf of my doctors. Does that sentence make sense? About as much as this whole exchange did.
After what I will surely nickname THE GREAT ECHO LETDOWN OF 2009, we whisked over to the eye institute for my baseline exam with the ophtamologist (sp?). Everything is strong and normal with the eyes. Nurse and doctor perfectly lovely. Check.
There was an awesome lady working the front desk named Sherry. She was nice and funny and smart and helped me get to the 2nd lobby where I needed to be. They are very big on multiple lobbies there. While filling out preliminary eye exam paperwork, we found a typo. A very funny typo. You have to put a check mark yes or no next to the list of ailments you might currently have or have had in the past. With the exception of the cancer box, my forms say no to everything else. Crazy. If it weren't for this pesky little cancer, I'd be healthy as a horse.
Anyway, there was a line for diarrhea. No. And next to it there was a line for sore throat diarrhea. What exactly is sore throat diarrhea? Richard and Christy and I laughed and laughed. Then I brought the form over to Sherry to ask her. She laughed even harder. She called someone else over to see it. She said that no other patient had ever pointed that out. We joked that I was the only one to really read it. Come on folks, if you see sore throat diarrhea on a form you might want to mention it to the staff. Between the choking laughter, they will thank you for it.
Back to the Moffitt office to check in for the CT scan. Mind you, when we met with Dr. Minton, she said I wouldn't have to drink anything for my CT. I had told her about throwing up the Redicat shake and she said that since they only need to see my liver and not my stomach, I shouldn't need to drink anything at all. She thought I would be ok to just get the injection. In past experience with the left hand not talking to the right hand, I asked everyone in the morning if I was signed up to drink the contrast. Let me check. No, you won't have to drink it. That's right, my lovely readers, you know what's coming next.
So, we check in for the CT with a woman named Mercy-how cool is that name? This is clearly not her first day and she was nice and knowledgable. I told her the doctor said I wouldn't have to drink anything and she didn't think that was right. I told her about my puke incident and she called back to see if I would need to drink if it made me puke. Mercy told me a tech was calling the doctor to double-check and would come and talk to me. She made me promise to let her know if they didn't come out within 20 minutes so she could follow up again. Love that.
So the tech comes out and says he talked to the doctor. He gave me some company line about this being the baseline scan and the importance of using the contrast... blah blah blah. I cut him off and said, "I get it, my new doctor's a liar. Right." He laughed and then told me about a drink I had not tried before. It's something mixed with Crystal Light. He didn't seem to have heard of the water soluble thing I'd been doing in Orlando so I agreed to the Crystal Light thingy. What else is a girl to do?
Tech #2 brought out a tray with 4 cups of contrast. We decided we had scared the 1st tech off. I was to drink one cup every half hour and then get scanned around 5pm. 1st and 2nd cups not so bad, 3rd and 4th cups not so good. It was almost as hard to swallow as the realization that everyone we had asked about the drinking things up until the CT room, were liars. A bitter pill and let me tell you Moffitt staff, you can't build a relationship on lies. I am not new to this rodeo and do not need to be humored or placated. Save that for some moron smoker that you need to make feel better about the cancer they got from sucking in tar and tobacco for 30 years at 2 packs a day, by their own stupid choices. But I digress.
While I was waiting and drinking, the three of us reminisced once more about the THE GREAT ECHO LETDOWN OF 2009. Christy and I decided we'd like to give the hospital some feedback on our 1st screening day at Moffitt. We were directed to the Patient Relations office where they were having cake to welcome someone. Fun! We were there to break up the fun.
Kyle listened to us tell him about what happened and he was deeply embarassed. It was obvious to him that something like that could make a patient leave Moffitt and not come back. He agreed with us that they could have called and said if she doesn't come now, we're going to leave--some warning--anything. Kyle promised to send a strongly worded email to the echo divas that think they can just leave when a patient is scheduled to come over. Scary, scary email man.
The CT went very well, although I felt like I was cheating on my beloveds at South Seminole Hospital-Simeon, Angel, Arlyn, Michelle. The tech I had was named Gary and he made me take off my pants. Yes, it's true and I want to make sure you're still paying attention. My pants had a metal clasp so I pulled my pants down under a blanket so they wouldn't get picked up in the scan. Gary was hilarious and found a vein on my left arm that they never can seem to find in Orlando. Even his deposit of contrast into the vein was gentle. It was good.
On the way out of the hospital, it was evident that the Crystal Light nasty drink offers the same diarrhea after blast as the Redicat shake. This was a precious discovery, as we were still 2 hours from home. These are the moments that remind me that cancer isn't all fun and games, kids. It is a big pain in the patootie that I'd like to be done with please.
So, echo with my homie techs tomorrow. Kathy will call me by Friday to let me know if I am in the clinical trial for sure. If so, we will start the medicines next Tuesday. Yippee kye yay, mother truckers! Let's kick some cancer ass!
I love you all!
Laura
Boo-the blog settings aren't holding the returns I put in between paragraphs-sorry for all the text running together. Smooches!
ReplyDeleteIf it weren't for the possibility of it messing up your chances to get into the trial, you should have checked "YES" to sore throat diarrhea. Just to see what they said about it.
ReplyDeleteMarlene, I laughed so hard when I read your comment. Hilarious! and so true!
ReplyDeleteJust when Kathy sounded like a team player...she had to go and drop the ball on scheduling an echo? what's up with these huge hospital systems? my mom had to wait a week to have surgery on her neck and ankle. its as if there's only one doctor in the whole damn bldg. You keep pushing at Moffit and come hell or high water...you're gettin' in! I love you and your sore throat diarrhea!
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