New York Trip

Jake and I were so lucky to be able to stay with my wonderful friend, Jennie, in New York when we were there to support Richard in his ride

in the Tour de Pink.

Jennie is so beautiful and kind and smart and funny and spending time with her was most excellent. Jake loves her as well. She is really good peeps.

Our friend Minby also came down from Syracuse which was a fabulous treat. Both John and Jennie are great friends and we are lucky to have them in our lives.

Richard had an awesome time on the bike ride. He said it's one of the best things he has ever done. We had the honor to meet some of the other riders and survivors and I just have to say that people are good. They just are. People are good. Lots of warrior women inspiring me in the fight, along with their fabulous husbands. Thank you amazing people!

My husband consistently blows me away with his support and love and this ride on my behalf was no exception. I am so humbled by all the people in my life.

Jake and I had an amazing time. It was our first trip with just the two of us, even if that part was only 3 days. He is so funny and thoughtful and it was my extreme pleasure to see him discover the magic of New York City and Broadway for the first time.

Every day I get to stay on this Earth with these wonderful men is a good day. I love them so.

Thanks to all that helped make the Tour de Pink possible. One more step closer to the cure!

Peel the layers

Let's get serious. I promise it won't last long. :-)

I've been so blessed the last couple years to have so many people cheering for me, praying for me, sending me good thoughts and all around positivity. Please don't stop. You know who you are and you probably don't have any idea how much courage I get from you.

Some of you have accused me of being an inspiration, courageous, super woman, etc. I receive these compliments whole heartedly and put them into my toolbox to fight cancer, but I have to be honest with you. Super woman I am not.

I do believe that this cancer trip happened to me not only for a reason, but many reasons. If I can encourage anyone to keep their chin up or laugh at adversity than I definitely think it pushes me forward in the fight. I get my strength from you.

This transition from MD Anderson to Moffitt has not been an easy one. MD Anderson saved my life. Simple as that. They saved me from an unnecessary mastectomy and a waiting period that would have delayed chemo and then where would I have been? Not here, I assure you.

The staff, nurses and doctors at MDA have always treated me like I'm a person and gone out of their way to take care of me. It hasn't been perfect, but when it's not, there is always someone trying to make it better.

The last month of waiting to see if Moffitt even wanted me or if I would be accepted into the clinical trial has been one of the most frightening since this all began. It brought a rush of fear back reminiscent of the first days of diagnosis. These are feelings that no one should have to experience ever, and definitely not multiple times.

When you are categorized at Stage 4, most everything you do is about time. How much time do I have left? How long before the side effects kick in? How much longer can I take this medicine before I have to switch again? Thoughts go to when we were growing up... anyone that was Stage 4 was a goner. I admit to you, dear friends of cancercopia, that at times it has been hard to embrace the idea that I am not a goner.

The facility of MD Anderson helped me see that I am far from that. There is hope and lots of it. Look at all of the miracles I have already experienced. The cancer has gone down in ways they couldn't have imagined in the beginning. I am still here and there are lots of choices of medicines and treatments to try along the way. And for that, I would like to say thank you to everyone associated with MDA. Thank you for saving my life. Multiple times. From the chemo to the brain radiation to the energy medicine to the pharmacy, every one of you is responsible for my still being here.

So, you see, it is just a bit challenging to transfer the trust of my care, and ultimately, my life to the Moffitt Cancer Center. But as we conclude our first week together, the fear is subsiding. The waiting is over and now there is action. The nurses have made it more than obvious that they care about who I am, my family, my future. I can feel the air entering my lungs again. I will release each white knuckle holding desperately to the MDA baton and let the blood flow back into the flesh. I'm reaching over to Moffitt slowly and holding on for dear life. My new Moffitt friends, we had a bumpy start but I'm learning how to trust your wonderful caregivers.

Thank you nurses and doctors for grabbing the baton of saving my life.

Thank you supporters for coming with me on this trip. Most of the time, I'm in fight mode, and I know that we will win. That God is good and wants good for me. Thank you for letting me be scared and crazy and silly along the way. Thank you all for letting me be myself.

Nurses save the day! as usual!

It's back to Moffitt today for some labwork follow-up.

Jackie was the nurse assigned to me yesterday. She was a pure delight. And funny! She had us cracking up the whole day. And after I had to fast until 12:45, she brought me the most delicious chocolate covered macademia nut treat to break the fast (as the jews say :-)

Christina was there too, which was nice to have a friendly face we already knew. Some shameful person threw away her tonge depressor person I made for her though. I'll have to pilfer some medical supplies soon to make up for it.

Maria breezed in to help and was very smiley. That's all the contact we had on the 1st day, but more will follow I'm sure.

Brenda was the third nurse that worked with us. She came in and told us if we needed to go take care of Jake, that we could go early and they'll just document it. She said it won't affect the trial or get me booted out. She agreed that we should have been told it's a 14 hour day, not a 10 hour day. She also went through my whole schedule with me to explain what would happen on each day. That way we'll know when to get Jake picked up after school and when we'll be home early. It was a great relief to get that information and she is just as nice and awesome as everyone else.

Heather also explained things really well and we are finding out if I really need to get Zometa every 3 weeks for the rest of my life or not. I'm going to talk to Dr. Minton about stretching it out because a few ladies I know that have been on it for a few years (I've been getting it by IV every 3 weeks for 2 1/2 years) have been experiencing jaw problems. Their bones start coming out of their gums-it's really gross. And once it happens, you can't fix it. So we're looking into maybe giving it to me a little less since I'm so young and healthy. Well, except for my own cells are trying to kill me.

Dr. Hahn stopped by to say hello. (I'll check the spelling on that later) Apparently she works with Dr. Minton and has shared patients with Dr. Shah in the past. She came by just to introduce herself to me. We asked her a few questions and she was awesome too.

So, thank you nurses for turning my Moffitt experience around. I look forward to kicking cancer's ass with you!

Feels Like the 1st Day

Well, I'm having a much better experience today at Moffitt than last week. The nurses are the absolute best. They are friendly and efficient and laugh at my crazy ass, so what more can you ask for?

We learned that Kathy was a nurse on the floor who started as a coordinator about 3 months ago. That explains her tentativeness and reluctance to admit the echo team is a bunch of douchebags that don't care about patients. I guess I'll let her off the hook--well, right after this....

Kathy and Karen both told me it would be a 10 hour day and be prepared to be here for the long haul. Then that adds about 4 hours drive time from Orlando as well. What they weren't clear about, was that it is 10 hours from the dosing of the medicine. After labs are drawn and run in the lab and after a 90 miunute infusion of Herceptin. So, I didn't receive my medicine dose until 10:45 AM which means my last blood draw of the night will be at 8:45PM. Which means I cannot leave this hospital until then. Which puts us back in Orlando after 11PM.

Now, we could have planned for accommodating for Jake better had we known this information, but oh well. I am hopeful that they will use some of this experience when communicating with patients in the future. Please oh please, tell people it's 10 hours from the dose, not 10 hours from when they arrive at 7 AM.

Also, it is unclear how many of these crazy long days are ahead as the schedule seems to be revealed as you go. This doesn't help with communicating to my employer or with child care, but I'm trying to learn to go with the flow.

Christy and Richard are here and we all got up at a horrid time. I am grateful for both of them for being here with me. Also, Julie's brother, David Sindler, dropped by as he is a medical student here at USF.

It does feel good to be getting medicine again. Let's kill some cancer, bitches! Really.

My local TV interview

Click here and see me on WFTV Channel 9. You might have to wait a few minutes for the ads to go away, but the video should be there all through Pink October.

Hope you enjoy it.

Moffitt's bloom is off the rose, but I still like flowers.

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