Happy Everything to You!

2009 has offered many challenges and many blessings for me and my family. We are so grateful to you, family and friends, the most for the caring and support you offer during the good, the bad, and the ugly. Thank you for all that you are.

Hug and kiss one another and be grateful for every minute of every day.

While you're doing that, send up some prayer flares for me. As the day gets closer and closer, I can feel my anxiety building, although I promise to try to live in the moment the best I can.

January 5th-CT scan at Moffit in Tampa

January 7th-CT scan results and meet with Dr. Minton whom we've only met the one time

If the CT scan shows the medicine is working, I will continue on the clinical trial. Less side effects-more hair and energy!

If the CT scan shows the medicine is not working, I will proably go back on chemo and return to getting treatment in Orlando.

Either way, I have lots of options so we'll just take it as it comes.

I love you all very dearly!

Happy Everything!!!

The Right Person for the Job

Yesterday I was home in bed fighting a horrible sinus infection that has kicked my butt all over the place. I called the clinical trial coordinator, Kathy, to tell her about my itchy rashy side effect (under my arms-don't get any dirty ideas) and mentioned the craziness of the last visit. I was so upset and I didn't even go into that much detail. So I asked Kathy for the number of the Clinical Research Unit Manager, Jill. I left her a message about being very upset about my last visit.

Jill called me back within an hour even though her vm greeting said she would be out of the office all day. She said she really wanted to hear what I had to say. I spoke to her for about an hour about everything that was said on the last visit regarding the pregnancy test. Jill and Kathy both told me that Dr. Minton's office was supposed to call me and explain why I might have had a false positive pregnancy. It seems that some cancers give off low levels of hormones that might give a false positive and the doctor's office should have called and explained that to me.

While it would be nice to receive a call from the doctor's office once in awhile (we have only met Dr. Minton the one time), if ANY of the nurses had explained that to me in an intelligent, clinical manner, I would have felt better that day.

When I went over what was said to me with Jill, she seemed appalled, shocked, embarassed, all at once. This is the only proper response.

Jill was a much better person to talk to then the Patient Relations Rep. She seemed genuinely interested in how I felt about things and put a lot of emphasis on ethics in the hospital. She told me she is going to have a meeting with all of the nurses to discuss what happened with me and that EVERY aspect of that incident was handled poorly.

Jill also knows I got a rocky start with my experience with Moffitt and we went over that as well. She asked what she could do to make it better and I just don't want anything. I just want to give the feedback to the proper person so that future patients don't have to experience the emotional roller coaster of having nurses tell you you're pregnant when it's not biologically possible. Putting it on me, the patient, "maybe they only took one ovary, not two-are you sure they took both?" That is definitely not the way to go. Jill vehemently agreed.

It was nice talking to someone that was really listening. I hope the nurses don't all hate me for this. I'm just trying to survive cancer with a little bit of dignity and positivity.

Keep praying that the drug is working. I'm so very hopeful that it is. We'll find out for sure the 2nd week of January. I'm sure that will be a lengthy post indeed.

Love you all and Happy Everything!!!

Good News at Last!

I was back at MD Anderson for a follow-up MRI yesterday. My brain is still stable. No new activity! Hoorah!!

I've been off of chemo and any other medicines that cross the brain/blood barrier for 4 months now on the clinical trial drug. I didn't think there would be anything in my brain (empty brain jokes please) but it's still pretty nerve wracking waiting for the results.

Same old spot on the brain is just sitting there. No swelling (swelling is a sign of live tumor) and not much dye intake (another sign of active tumor) so the doctor is guessing that it is still dead tissue from the original brain radiation. Will get another MRI in 3 months to check on it again, because you just don't want to mess with things that might pop up in your brain.

One of the most encouraging things the doctor said was that no matter how far away the other cancer is in your body, if it's growing, there is a good chance activity will show up in the brain as well. So, he was hopeful that this was a good sign the trial drug is doing it's job. Dr. Bobustic is just wonderful and he has been very encouraged by my scan results and he was quite enthusiastic about the clinical drug I am on and the data that is out on it.

Great appointment over all.

I went by the ol' chemo floor and said hello to the front desk gals. Elaine says she saw my news interview on tv but she knows the truth that I am not that serious. Ha! Went by Dr. Shah's office to say hello and give some feedback on Tampa.

There was one pretty awesome random act of kindness. There is a woman named Miriam that is very helpful when I have to schedule my brain MRI's. Well, the other ladies always give me a hard time when I want to schedule the MRI and the doctor's appointment for results on the same day, which is what Dr. Bobustic has always told me to do. But it's easier to spread it out so I have to tell certain people that I would like the appointments back to back. And their response, well I don't know if I can do that.... then I assure them they can do it and thank them for the extra effort. Miriam, however, always offers to do it right off the bat. We love her. So, anytime we walk through that hallway at MDA, I always go by her desk and say hello to Miriam.

Well, apparently she has been looking for me for a few months because she bought me the cutest hat. She was so happy to see us yesterday and ran around the desk with the hat. It was one of the cutest things I have ever seen. She just said I was always so nice and she was keeping it at her desk in case I walked by and there I was. How do you like that for random act of kindness?!

People are good.

Keep praying, friends. It's working. CT results on Jan. 7 will tell us how the clinical trial drug is doing. Pray Pray Pray!

Love you all!

Laura

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.