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.

One Day At A Time

Still in a daze and a fog over my dad's death. It was so unexpected and I just can't believe I can't talk to him on the phone any time I want.

Here are the memorial pictures which dad/Tom's friend Larry put together. He has helped our family so much and these pictures show my dad over the years. Very cool.
http://www.z-pictures.com/rhodesmemorial/

Dad always wanted to be buried at Arlingtion National Cemetary so that's where the funeral will be. It will be held on November 30th so the whole family is going up. I'm hopeful that this will bring us closer together in ways we can't even imagine yet. I just can't wait to throw my arms around everyone and be together.

Still on the clinical trial and this 2nd cycle proves to be less days in Tampa, so that is good. The date of the funeral landed during a time when I don't need to be at Moffitt, so everything worked out there. I will be back on Nov. 24th but then it's taking pills from home after that.

The stress from not sleeping, along with some general vomitting from the meds, made me pull a muscle in my back along the edge of my rib cage. Last Friday, I had excrutiating shooting pains there and Kristen had to drive me to the doctor. Kristen was an amazing friend and talked me through the pain like a trained professional. It felt as if someone was driving an icepick into my back and turning it over and over, relentlessly. They gave me a pain shot in my bum... the same shot they give people passing kidney stones. Ouch! They took an xray and saw no other problems, so pulled muscle it is! Let's stay away from anything that might be the cancer going crazy, right? Every pain and stress is scary, let me tell ya. I'm taking a muscle relaxer and a pain reliever for a week and I was ordered not to do any housework for 2 weeks. Ha-broke that the first day. I'm not proud.

When this happened, I had to call the clinical trial folks to let them know and ask what I should do. I ended up going to my primary care doctor when I couldn't get anyone on the phone right away. I was in so much pain! So, I talked with the manager of the clinical trial unit and now I have all the numbers I need in case something comes up again. Wow, it's a marvelous thing to actually be given phone numbers you might have to use while undergoing cancer treatment.

I also found out that my CT scan will be at the end of December for sure. Something about my insurance not paying for one sooner, which is fine by me. I hate that fuckin' test. I get the metallic taste, the full body hot flash and the peed in your pants feeling all at once. Those are 3 things that could possibly happen and I get all three. Lucky me.

Praying and hoping that the CT will reveal that this clinical trial drug is magical and the cancer is gone. I cannot describe to you how awesome it is to not be on chemo. Wow. Please please please God help the medicine kick those fuckers out of my body for good. I'm pretty sure I have a charming and persuasive angel up there on my side pulling some strings. Thanks dad. I love you.

My Dad is gone

Dad passed away yesterday. I got the call after posting the last update. No words. Only sadness and a heavy heart.

My dad-fight fight fight!

Ok, I know I've been quiet on the blog. Quite frankly, I wasn't sure what to say. My father has been on life support machines in California since last Monday. There, I said it.

He was having a hard time breathing over that weekend and went to the Long Beach VA hospital Monday morning. He has one of the worst cases of pneumonia they've ever seen. And I'm pretty sure those docs have seen some shit.

They had to give him sedation so he wouldn't fight the tubes and he's been unconscious ever since.

So, we've been praying and hoping that he would come out of this and I gotta tell ya, that man is a strong son of a gun.

Tuesday night his heart stopped for about 2 minutes. They had to pound his chest or do things very movie like to get it going again. But it did.

Wednesday night was the hardest. The doctors only gave him a 25% chance of making it. Then the doctors called his wife, Julie, later in the night and told her to come back to the hospital. He would not make it through the night.

But he did it make it through the night. And the next night. And the next night. Here we are one week and a day after he was admitted and he is hanging in there. Damn. Awesome.

His lungs have failed. His kidneys have failed. He has had 4 days straight of dialysis. Perhaps today will be the 5th? I don't know much about dialysis, but I hear it has something to do with getting the toxins out of your system. Well, dad's led quite a hard life and had a lot of fun so keep doing that dialysis people! There are lots more toxins to go, I'm sure.

Blood pressure has been absolutely normal for a few days-a miracle after they had to restart his heart. There are miracles around us every day.

My dad was doing rehab from a pretty bad car accident six months ago, so I'm sure his defenses and abilities are down. We were comparing notes about both of us fighting our way to health.

Fight fight fight, daddy! You can do it! What a bad ass story when you are on the other side of this!

My oldest brother, Dave, is there this week, so that is great. Julie needs sleep and rest, obviously upset, but whenever I call her she says, "Don't worry, Laura, I'm taking care of your dad." and I know that she is in ways better than any of us could. We are all praying and hoping that there is a happy ending to this story.

For me, I've been dreading every single phone call. Every time my phone rings, I get an enormous knot in my stomach. But this is not about me. He makes a little bit of progress every day.

Keep praying an hoping everyone. Pray for us both please, as we pray for you. It is definitely working!

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

Goldsteins on TV!

As Pink October arrives, I want to once again thank you all for the support you’ve shown me for the past 2 ½ years of treatment. Wow! Has it been that long?

Just a heads up for those of you with a magical DVR: I’ll be on the 12PM (noon) news broadcast tomorrow, October 1st on WFTV, Channel 9. Vanessa Echols interviewed me and other survivors which she will air once a week through the month of October. My interview kicks it off tomorrow and I hope it looks good and that it helps awareness. If you miss it, the interview will be posted on the WFTV website (http://www.wftv.com/index.html) throughout the month of October. Bring on October pink ribbons!

Also-thanks again for the support for Richard’s bike ride in Hershey’s 2009 Tour de Pink. He flies out tomorrow to start the 3 day, 227 journey from Pennsylvania to New York and Jake and I are meeting him in New York City at the finish line. The riders (and supporters maybe, if we can get on camera-I’ll rely on Jake for that) will be featured Monday, October 6th on the morning show on Fox & Friends in NYC. It is the Fox cable channel (national!) and not the local Fox station. Jake and I should be there holding up signs of support. I’m not sure what time they’ll be on but if you start the DVR at 7AM (Eastern) and have it going for a couple hours, it should be in there. I watched last year’s video clip and it was at least a 15-20 minute segment on the show. Or you could wait for the edit and watch it later on the Young Survival Coalition’s Tour de Pink website (http://www.youngsurvival.org/tour_de_pink/index.html). This is the 6th annual Tour de Pink and we are so proud of Richard!

Thanks for all the love and support!

Love,
Laura

Fill out these forms... in triplicate...

Many of you are wondering what's going on with my wait for the clinical trial. Thank you for the prayers and the check-ins and the good vibes and the hanging back and waiting to see what I say about it. All of which are perfect ways to support someone that is going through the unknown every day.

After a week long display of left hand not talking to the right hand, the clinical trial nurse coordinator (a wonderful lady named Kathy) located the medical records that were sent from MD Anderson to Moffitt Cancer Center that she needed to be in the computer system before an official invitation could be extended to me.

At first she asked me to go to MDA's medical records department and get duplicates of my file and just fax them on over. That would speed up the process. However, at $1 a page that they charge for me to get my own printouts, I'd be in the poorhouse pretty quick. I explained to her that after 2 1/2 years of non-stop treatment and chemotherapy, my file was not a small one and that there were not enough hours in the day for me to stand at a fax machine and get them to her.

So, Kathy pushed harder on Dr. Minton's office that had the records. Remember, I couldn't meet with Dr. Minton until my records were sent over, so what's the holdup people? Kathy won and the files were released to the scanning department. Hmm? Aren't the files already electronic? In this day and age weren't they emailed over? These are intriguing questions, I know. And ones in which I do not have an answer.

Kathy and Dr. Minton's nurse said that my paperwork had been sent to the scanning department and until they were in the computer, I'm dead to them. Ok, they didn't say it like that, but a girl can read between the lines. I don't exist until I'm in the system. Got it.

Another week went by as some entry level professional or intern scanned each piece of paper in my file into the Moffitt Cancer Center system. I can't imagine that was fun and that worker was probably cursing my name the whole time. With each page the pile just wouldn't get smaller. This project never seemed to go away. Damn you Laura Rhodes or Goldstein-whoever you are. I had to skip lunch again! I missed my kid's soccer practice. Boo to you and your inconvenient Stage IV cancer!

Finally I am in! I'm in the system, just not the clinical trial officially. Yet.

We have forward movement. I will be going to Moffitt on October 6th for a full day of screenings, lab work, scans, whatever other ways they come up with to violate me so that Moffitt can have their own data on my eligibility for this clinical trial.

Stay tuned friends. I'm still on a need to know basis and right now, I just don't know what exactly happens next, when I start the new medicine, how often I'll be travelling to Tampa, etc.

Richard's riding in the Tour de Pink this weekend and Jake and I will be in NYC to cheer for him at the finish line. After our fun weekend, I'll get back to wondering what happens next. Thanks for everything! I am so grateful for you!

Clinical Trials, Side Effects and Me

I called Moffitt Cancer Center in Tampa this past Tuesday to make sure I was really on the list for the clinical trial. Sometimes doctors say things and there isn't good follow-through so I thought I'd call the clinical trial coordinator directly and make sure I was on her grid.

I've been in touch with a lovely nurse coordinator named Kathy ever since. She gave me her direct line and I can leave her messages, and ask questions. It's a pure delight. Kathy told me that I was on the list and that she would be contacting me for the next step. More waiting.

So, this is where we are. The clinical trial hasn't officially opened yet, as they have many steps in the eligibility/qualifying area before placing people in the trial. Kathy was asking me for my medical records in order to qualify me. She wanted all of my medical records. She asked me to go to MD Anderson's medical records department, get copies and just fax them on over. I told her I'd be happy to do so. However, after 2 1/2 years of treatment, my file is so thick that there just aren't enough hours in the day to stand at a fax machine. I also told her that I was confused because I thought that my medical records were already there with Dr. Minton's office, which was a condition before meeting with the doctor.

I was very nice of course, because I don't want them to kick me out because I'm not cooperating. I also know that medical records will charge me $1 a page to get the docs myself which I simply cannot afford-you should see that file! Kathy did email me this morning that Dr. Minton said she would give Kathy what she had and that she thinks all will be right with the administrative gods. She will let me know if they need anything else and then I'll fetch it.

Also in good faith, Kathy emailed me the 21 page consent form for this specific clinical trial. Now, we are not at that point yet, she just wanted me to have a heads up. There are at least 3 scheduled meetings/orientations with doctors before you make the final decision on joining the clinical trial and sign the consent form. The form is pretty daunting, of course, and there is an extensive list of possible side effects that were not mentioned to me before. There are apparently some risks with the eyes in which I could get pink eye -ewww-which is news to me. The doc just mentioned the rash, remember? I'd have to meet with an ophtamalogist (sp?) every time I go to Tampa for treatment. This is the part that makes me nervous. But it's all about information and I just don't have any so I'm trying not to freak myself out of the excitement of the clinical trial.

It's a big question mark--is this a list of side effects like the ones you hear on drug commercials that they put together just in case (may cause oily discharge or compulsive gambling) or is it high probability these things will actually occur? Obviously as a test subject I'm agreeing to report on the side effects I'm having so if I'm the one with oily discharge, that information would make it onto the published inserts of the medication. One could only hope to be so proud.

Apparently, they will schedule me to go to Tampa for some blood work and lab work before I can finish qualifying for this trial. Then we'll have those informational sessions with the doctors and get our questions answered. Hopefully this will all happen over the next two weeks because I'm off the chemo and those liver lesions are having a redneck party--definitely a kegger.

I'm just going to keep enjoying the chemo break of energy and keep praying that I'm heading in the right direction. Love to you all!

Muchos smoochos!

Do some shots with me while we wait

Come on, do some shots with me.

I wish I were talking about the fun kind of shots, but I'm not.

Having a little bit of extra energy with this current break from chemo, my mind was starting to race with possibilities of what I might be able to do that I haven't had the energy for in quite some time. Perhaps I can go for a bike ride. Maybe it's time for that trampoline workout class. Rock climbing wall?

Yet my imaginings were quickly halted by reality when my left foot was ripped open by a wayward nail. What is Laura doing walking barefoot through a construction site when she is fighting cancer, you might ask? Oh, this nail was in my living room. It is a nail that frequently shimmies up from a transition strip in the flooring. It is a nail that we have had every intention of replacing for awhile now. So, please people, finish your household projects. That's my PSA for the day.

Which brings me to what happens when you don't finish your projects. Yes, I did have to get a tetanus shot because there is no record of one in the past 10 years. While I was there, what the heck, I got a flu shot also. One shot in each arm. Neither one was painful upon entrance, but mother trucker---what is up with that tetanus shot? My arm has been killing me for 2 days!

The good news is that I'm healing quickly while off of Avastin which is a chemo that delays wound healing. Oh, and I know that I could never function after being stabbed, so I'll know to avoid potential stabbings. I think I invented some new curse words when the accident happened--at least some more colorful word combinations, that's for sure.

Still waiting for the call from Moffitt. with the green light for the clinical trial. Left a message for the clinical trial coordinator yesterday. Hopefully hear something today.

Smooches!

Tomorrow! Tomorrow! I Love Ya! Tomorrow!

I'm channelling the only Annie that is real to me, the movie, the Annie of my youth...

Yesterday was plain awful... you can say that again... yesterday was plain awful... but that's... not now... that's then!

Hello friends of Cancercopia! I must admit I wasn't completely honest with you yesterday because I knew people would be worried but I didn't want them to be unglued like we were. The truth is, the area of tumors collecting on my liver is 9 cm x 9 cm. I wasn't more specific about the nines because I was protecting you. Don't look at a ruler people! It will only upset you. This is a larger than a baseball and smaller than a grapefruit, but Richard says it's a perfect circle target for the cancer killing shit that comes next. It's all about visualization, right?


Today we traveled to Moffitt Cancer Center in Tampa to meet Dr. Susan Minton. She is notoriously late because she takes so much time with her patients and our 1pm appointment happened after 3pm, but since this was our first visit, I won't hate. She was a pure delight. She was thoughtful, informative and thorough-and she's a hugger, so we love that.


The day ahead was daunting for me. My previous excitement gave way to dread as I wondered what would happen to my potential arsenal if I were turned away for a clinical trial. I had put all of my eggs in the Moffitt basket and I was worried.


We picked Christy up on the way to Tampa and arrived around 12:15pm. Complimentary valet parking for everyone. Nice. Beautiful facility. Nice. Friendly, helpful woman at the reception desk called me honey and darlin in a genuine, non-condescending way. Nice. Got called back right away by the admissions folks. Very nice. Then the wait.


The wait really would not have been that bad if it weren't for a certain couple that joined us in the waiting room. They interrupted us talking to a lovely man by the name of Max that was waiting for his wife who was getting a mammogram. Stephanie and Mark were their names. They are sweet, well meaning folk. They didn't mean no harm. But my worry and waiting got the best of me and I just wanted to punch them both in the face. Many times.

Stephanie is also Stage IV and has been in treatment since 2004. She talked to me all about how to be in ongoing chemo treatment (thanks helpy!) and told me to keep my chin up and I would be ok. We learned that she is on bi-polar meds and Mark is an alcoholic that doesn't work. He also eats when he's worried so he's gained a lot of weight while his wife is on treatment. We learned way too many details of their life at a high volume so everyone could hear. We learned about their dog and cat and their unnatural love for Star Wars. She presented herself as a science fiction writer (although currently unpublished) and explained to me the differences between the atmosphere on Mars vs. the atmosphere on Earth. The amazing thing is that I don't think either of them took a breath in over an hour-and I am not exaggerating. Just because she is my cancer sister does not mean she wasn't damn annoying. When they finally called my name, it was like winning the waiting room lotto!


In the examination room Tarina took my vitals. A substitue nurse said hello and asked questions (usual nurse was on vacation). Then we waited... and waited... my theory that if you mess with something in the room, they'll come in was disproven several times over. I took out 4 of my original mammogram xrays and lit up the xray viewing thingy and we studied the insides of my breast for quite some time. Nothing. There was a computer in the room and I found a website to play solitaire. I did consider doing a Facebook posting, but big brother would have found me out. So I'm using the computer in the examination room, wearing the drafty gown with my breast falling out of one side (Christy is still mesmerized by my breasts, I'm sure) and waiting for over another hour. Nothing. Christy went on a hallway quest for the doctor. Nothing. Then finally, there she was! Dr. Minton.


Dr. Minton had a medical resident following her around and watching. She was talking abstractly about this clinical trial and that clinical trial. She went over my history of the treatments I had already tried. She agreed that Dr. Shah had been doing the best, most cutting edge treatments for me and that I was in good hands at MD Anderson. She was talking to us as she was going through her own thoughts. What kept her from being excited and throwing me in a clinical trial right away, was yesterday's magical numbers: 9 cm x 9 cm. She thought this was an extraordinarily large area on my liver and that made her nervous. The Doxil chemo should work very well for you, she said and if the tumors shrink we can put you on a clinical trial later. I could almost feel the hope draining from my body.


Then Dr. Minton was paged and left the room.


Well, while she was gone, she obviously took a closer look at last week's scan results. Ah--it was not one big tumor, but many smaller tumors gathering together to make such a large mass. Remember Cletus and his friends like to party together. This seemed to change everything! The tumors grew together and not apart in all different directions with new offshoots at every turn. She re-entered the room, sans medical resident, with new excitement. She said she went ahead and put me on the list for the AKT clinical trial and if I qualified, the person in charge of clinical trials would call me next week. Since I have to be off of chemo for 4 weeks for clinical trial data, I would not start the trial until 2 weeks from now (break!) Right now it's about 90% that I will get on this clinical trial and we all wept with excitement, Richard, Christy, Susan (we're tight now) and I held hands and danced in a circle around my mammogram xrays. Ok, maybe that just happened in my mind but that's what it sure felt like.


Details:
This is a dual agent clinical trial. It is a drug (oral pill I can take in Orlando) that combines with Herceptin (IV every 3 weeks) to break up the DNA of the cancer cells in my body and the cancer cells then die. Here is the best part: it is not chemotherapy! Side effects would be minimal and I would keep my hair. If I can get the tumors on my liver to shrink without chemo (the future of cancer treatment, my friends) and they shrink down to a much smaller size, then perhaps we will radiate the tumors or blast them out with radio waves or some other cutting edge awesomeness. This is excellent!


Cons:
This is not chemo. The tumors may be resistent. Also, the meds I am currently on to keep tumors from going into my brain would have to go away. But really, would God let that happen to me again? I think not. Driving back and forth to Tampa, inconvenient but totally doable. Side effects would be an annoying, itchy awful rash for a week or two but then my body will get used to it and it will go away. Steroid cream will not help. It's as if my previous experience with bedbugs at a swanky Orlando hotel had prepared me for this moment. This is not a drill!


Pros:
This is not chemo. Quality of life and energy would improve. After the start of the trial, they will scan me as early as 6 weeks into it. During these CT scans I will not have to drink the nasty contrast because the IV contrast will suffice to show the liver. Is that the hallelujiah chorus I hear in the distance? If the scan shows that it's not working, then I will be taken off of the trial and put on the chemo called Doxil as originally planned. Because I look so healthy and my body parts function well and my liver feels normal and functions normally, she said it was worth a shot. If I had any pain or symptoms of any kind, it would be a no go. And the best part--early data from this combo of drugs is very promising for shrinking cancer without chemo!


And the number one reason we love Dr. Minton: She uses the word remission! As in "if this combo of meds puts you in remission" or "once you are in remission" and I said "wait! my doctor in Orlando doesn't like to use the word remission since the cancer is always there, even if it's inactive." And Dr. Minton scoffed and said "inactive cancer is remission! It's a lovely word and I think we should use it." And I agreed and all was right with the world.

So, please think good thoughts that the 10% won't sneak in and kick me off the clinical trial. Either way though, everyone is optimistic that either the trial or the Doxil will work and kick these tumors' butts. I now have two official doctors that are working together in my best interest and the power of two award winning, cutting edge cancer facilities in my arsenal. Cancer better step aside or feel our wrath, bitches!


Rock on my lovelies! Keep praying and hoping and supporting. I love you so much for it. Tomorrow... tomorrow... you're only a day away.....

9 is not so fine!

On this date of 09/09/09, today's scan results are pretty spooky. The good news is that the cancer is stable everywhere except for that pesky little liver. The lesions are growing and they are significantly bigger than before. There is an area of tumors on the liver that is measuring 9 centimeters! 9! Freaky huh?

I wrote out the word centimeters so you would be sure to know that it was no typo. 9 centimeters of cancerous tumors on my liver. That is a big area. Wow. I've never loved a millimeter more than I do right now.

So, Richard and I have decided to name the tumors on my liver to help with the visualizations I must do to help my body along with getting rid of them. I'm sorry for anyone born in remote areas of the country, but I think I feel better calling them Cletus, Cooter, Earl, Homer, Otis, Rufus. I think Cletus is the ringleader and we should take him out for sure. Interesting that these are all boy names, I know, but I can't imagine a girl would put me through so much rootin tootin trouble.

The next choice of medicine is IV chemo called Doxil which I'll google and freak out about later after I finish processing these latest results. I would get Doxil once a month, so that is good not to have to go to the hospital as much. And once again, getting conflicting answers to whether or not I'd lose my hair, so we'll just see. I'm actually starting to like my hair the way it is now, so I guess that means it's time for it to go. This whole process is increasingly ANNOYING, but I am glad I'm still here.

I'll report back soon on my trip to the Moffitt Cancer Center in Tampa tomorrow. I am hoping to be able to get on a clinical trial for some newer medicines and am meeting a metastatic breast cancer specialist tomorrow at 1PM-that's 09/10/09 so let's break up the crazy, ok?

Love and appreciation for all the prayers and good thoughts. Thank you for always supporting me. I love you guys!

Going Up?

So I'm cruising along, doing my thang, bothering no one. I was just trying to enjoy the news that I have a normal brain. The cancer experience (remember I hate the term "cancer journey") is one intricate roller coaster-up and down, up and down. It is part of the treatment (remember, I hate the term "new normal") that sometimes you get good reports and sometimes you get bad reports, but you keep on going the best you can. Mostly because you have no other choice.

So, I'm floating along on my little cloud of clean brain mri happiness, when all of a sudden, my tumor markers didn't feel like they were getting enough attention. They have jumped from the 35-40 range to around 250. This is a significant, scary jump, people. Watching those numbers go down over the last 2 years has provided a steady stream of joy. So when the doctor brought in a graph showing this horrible upturn, I was pretty shaken up. And pissed off, quite frankly.

The tumor marker tests is an indicator of whether or not the current chemo treatment is working. So how does the cancer go away in the brain and the tumor markers jump up so much? Can anyone explain this crazy f***ing cancer beast? But wait-don't get ahead of yourself. The tumor marker tests are not an exact science and are used simply as a red flag. So, this week I will have a CT scan and a bone scan to get the real verdict on what's going on in there. I will get the results next week. More waiting and wondering.

I'm supposed to enjoy myself now and over the Labor Day weekend, as this should be a high energy non-chemo week for me. I'm supposed to not worry about my tumor markers until I get the results from the scans. I'm supposed to take it all in stride and if the cancer is progressing, we'll just try something else-I should be used to this by now. I wish my logical brain would talk to the fear and anxiety and tell it to simmer it's shit down. For now I'll just bounce between peace, fear, anger, annoyance, empowerment, weakness, all of it. Cocktails are in order!! Will that make you happy, liver?

True courage comes from dealing with what comes at you, not from what you seek. I'm proud of myself for overcoming a personal fear and taking on the challenge of getting to the top of Half Dome, but I drew strength and learned a thing or two about overcoming from a high school friend of mine, Laura Rhodes Goldstein. At 33, engaged to be married, she was diagnosed, out of the blue and with no family history, with stage IV breast cancer. Reading her blog, http://cancercopia.blogspot.com, I've come to deeply respect Laura and her courage to look the disease head on and to not let it stop her for a moment from living a life full of love and laughter.

Laura, I wanted to bring you to the top with me, this time in spirit, to thank you for your strength and your example. You are my definition of Super Woman.Vincit qui patitur - She who endures, conquers. Keep on fighting, friend, put this chapter of your life to rest and come hike this damn mountain with me! XXOO

Friends of Cancercopia: The above post was on Facebook from my high school friend, Laura Brandon Schulz. I am still overwhelmed that she contacted my husband (who never said a word) for a picture of me, then she prepared this inspirational sign. Then she packed all of her hiking stuff for a hike she's been planning for over a year or something like that. Then she gently tucked me in next to the gel packs and granola, I imagine. All that work to take this AWESOME picture.

Laura, I cannot ever express how much this gesture means to me. I am fighting like hell out there and trying to make sense of why this happens is useless. And then sometimes someone does or says something that makes it crystal clear about why this happened to me and all of the good that can come out of something so bad. It is my honor to have any contribution to your strength and courage and I am humbled anytime what I do affects anyone else. Thank you for reminding me that people are paying attention and rooting for me. I fight like hell for me and I fight like hell for you. I fight like hell for all of us. Cancer is messing with the wrong bitch.

You have a normal brain!!!

Hooray! I have a normal brain once again! Insert joke here!


Quick recap: As if having metastatic breast cancer wasn't scary enough, back in February 2008, the cancer moved into my brain by way of 2 brain tumors. Luckily for me, they weren't located in a place that would affect any of my normal functions, and we were able to zap those little buggers with precisely aimed radiation lasers. I had outpatient brain radiation. Awesome!

Follow-up brain mri's showed that the radiation was a success, but those 2 tumors kept showing up on the scans. We moved the mri schedule to every 2 months. With my ct, muga & bone scans still every 3 months, I can definitely glow in the dark now.

The brain specialist wanted to watch the spots on my brain closely although his feelings were that they were probably necratic (sp?) tissue, meaning dead brain tissue from the radiation. But in the last several scans, there they were-not moving or growing but still there.

As an added bonus to hearing the terrifying news that I had brain tumors, the doctor also explained that I was now in a category of people who are at risk for seizures. Are you freakin' kidding me? So I was put on meds for that. One more pill to take twice a day. Bleh.

HERE'S THE GOOD NEWS: Last Tuesday, I had a follow-up brain scan. The tumors weren't on the scan at all! They were totally gone!! The doctor said that if he didn't know my history, he would think he was looking at a normal brain. Hahahaha-I'm not normal anything. :-)

I can now stop taking the seizure meds. Yay! I don't have to come in for another mri until 4 months. Hooray!

The current chemo combo I'm on apparently crosses the brain/blood barrier and is doing its job. At any time the meds could stop and these tumors can come back. But for now, I'm celebrating my normal brain! Thank you everyone out there praying and following what's going on with me. It's working and please don't stop. I love you!

Laura

Goldstein Staycation

We are wrapping up 2 weeks of vacation time with us off of work and Jake out of school.
It has been fantastic!

A few highlights.... Zipline Safari at a place called Forever Florida. It was actually sprinkling
the day we went so we opted not to bring our camera. Talk about missed opportunity.

But it was amazing. I was terrified because I'm scared of heights but after you go the first time,
it was pretty awesome.

Then we stayed 2 glorious nights at the Portofino Hotel on Universal property. We went to Islands
of Adventure whereJake rode his first roller coaster! It was the ice side of Dueling Dragons.
He loved it so much that he went on to ride fire andThe Hulk. This was a big deal and I'm so lucky
to experience things like this with Jake.

We also went to Kennedy Space Center and Fantasy of Flight. If you've never been to Fantasy of
Flight and live in Orlando, you are missing out-that place was awesome. We also took Jake to a
show at SAK Comedy Lab - so fun to see him discover the thingswe have loved over the years.

Now it's back to reality---work and treatment, back to school and soccer season. I'm so lucky to be
here!!

Laura

It's My Birthday Month!!!

That's right people. I have a birthday month. Tra la la!!

I made it to 36 years old! Life is good. I am surrounded by people that love me and care about me and I'm grateful for each and every one of yous out there.

The new medicine has a lot less side effects than the last one so I am doing really well. I'll get scanned again in 3 months and hopefully it will also be kicking serious cancer booty. I'm just keepin' on keepin' on for now.

All is good.

Love, Laura

Life Enthusiast

Waiting for Side Effects

So, now we wait. I got an infusion of the new medicine, Navilbine, this morning. It was much shorter than the old one, but I'll have to get them more frequently. So far so good. I slept for a bit afterwards, but don't have the feeling that I was run over by a truck like I used to. So that's good.

It will be 3 weeks on, 1 week off-what a pain in the ass to try to plan things around. But I'm glad I'm still here and able to do things, don't get me wrong.

The waiting to see how the medicine affects your body and your emotions is one of the worst parts about "the cancer journey". Did I ever mention that I hate when people call it "the cancer journey". Really? Journey? Like self discovery and personal growth and all that shit? Yes, it happens but it doesn't feel as pure and spiritual when the journey was not your choice. Cancer---go journey with someone that deserves it--someone in jail for messing with little kids or someone who hacks into emails because they really could use some chemo distraction to fill the void.

Journey shmourney. Cancer's a trip!

Smooches!
Laura

Stupid Liver

Apparently, my liver is not on board with the gameplan. My liver does not realize that I am kind of a bad ass. My liver does not appreciate that the cancer is shrinking in EVERY other area of my body except there. My liver is a stubborn ass.

The brilliant, non-committal, too much of a wuss to make a decision because they are so afraid to get sued radiologist put in my CT results that instead of the two remaining lesions (that word's my favorite), there are multiple lesions. And the largest of the two previous lesions has grown an entire centimeter. Just what does multiple mean? No one can tell you. Multiple means more than one. Could be 3, could be 15, could even be 50. Lesions, lesions, lesions.

So, tomorrow I will start a new IV chemo and get off the Ironitican (yay!). Navilbene is what I start tomorrow and I will be going once a week for infusions for 3 weeks on, then have one week off. They think the side effects will be less than this last one, but we'll see. I should definitely experience fatigue and maybe hair loss again, but that depends on who you ask. When I ask each of the nurses and then the doctor, I get 3 different opinions on what will happen to my hair. It's like a mini-adventure.

So, being stable for 8 months on Ironitican/Avastin/Zometa/Tykerb combo was a very good run. Now we are looking for the same stability with Navilbene/Avastin/Zometa/Tykerb.

Lesions.

Damn you lesions!!!

Yes, sometimes I am not cheerful

The last 4 or 5 scans have been amazing! The cancer is shrinking and I am a walking miracle. They moved my schedule to chemo every 3 weeks instead of every 2 weeks which has been super awesome fantastic. I can't even tell you how great having an extra week of energy has been and how lucky I feel.

Which brings me to today.

I had a CT scan last Monday. I'm supposed to meet with Dr. Shah on Tuesday, June 16th for the results. Regularly scheduled chemo is June 17th but my doctor and I have been entertaining the thought that if this CT scan is the same good news, perhaps we could do chemo every 4 weeks. I've been praying and hoping and clinging to this! I was sure this was going to happen, people. I felt it in my soul that it was going to happen. But alas, it's not happenin'.

My boss approached me about doing a pretty big project next week and I wasn't sure I could commit with the upcoming doctor's visit and potential chemo day. So, I called yesterday to try to get my CT scans early, expecting it to be the same news it's been for months. I asked if I could skip the appointment (they are usually quick anyway) and get the news over the phone. Still sure the news was good.

Jeanie, a nurse I have never spoken to that was covering for my regular nurse, called me to say that Dr. Shah would like me to keep my doctor's appointment on Tuesday because ... and I quote ... "the lungs look better but the liver looks worse." But then Jeanie could not tell me anything else and told me that I had to talk to Dr. Shah on Tuesday. I quietly got off the phone and cried.

Then I called back and left a message asking if I could go in today for the results rather than wait until Tuesday. Then the amazing and wonderful Natalia called me back. She is Dr. Shah's medical assistant that I've known for quite some time. She had overheard Jeanie calling me and knew she was the one that needed to call me back.

Natalia said that Dr. Shah is out of town both days and that I have to wait until Tuesday to see her. She said that yes, that was how the scan went, but not to worry because Dr. Shah would have a plan. She called it a minor setback and encouraged me to try to have a little fun this weekend to keep my mind off of it for now.

So that's what I'm doing. I'm working and I have to work this Sunday. I'm battling to push the dark thoughts and fears out and sometimes that goes moment by moment. It doesn't help that we lost 2 women in my Mets support group this past week. Crappy timing for a bad scan.

But hey-I'm not in charge and never have been. I'm a walking miracle and God is still here.

And I went to a "bring your gold" party last night and made $84 off a necklace that I never wore because it pinched my skin. So that's good.

Smooches!
Laura

Hello everyone!!! I had scans at the end of April and met with the doctor at the beginning of May. I'm happy to report that all is stable in my world still. The cancer activity is about the same and nothing new is popping up which translates to something pretty spectacular from a medical perspective. So yay!!! Celebrate!

I received these amazing graphs from my doctor showing my tumor markers (numbers measuring the # of tumors flying around my body) dropping dramatically for the last year. There seems to be a problem with our scanner and if I can figure it out, I definitely will have it posted here. That visual following the treatment journey is priceless.

So, we are currently continuing with the same chemo combo--Tykerb pills in the morning, then an infusion of Ironitican/Avastin every three weeks. Manageable for now, I'm a lucky, lucky girl.

This week, I did experience some chest pain which was, to say the least, kind of scary. When you're in cancer treatment you have to alert your medical peeps right away if something changes. So I did. They ordered a CT scan (my personal favorite-NOT) STAT to rule out a pulmonary embolism. So there we were, rushy rushy freak out... to make sure I didn't have a clot in my lungs. And just as a tip, don't google "pulmonary embolism" if you're waiting for test results to tell you if you have one. Do as I say, not as I do. Heh heh.

So, I ended up at my primary doctor who is AWESOME!! And realized that I have something normal people can get which is not cancer related at all. Hooray!!! The constant sneezing (and other details I will spare you) from seasonal/all year round Florida allergies has stressed the cartilage around my sternum and inflamed the tissue. I got some new meds to get the allergies under control and I'll probably see some relief to the chest pains in the upcoming weeks.

So, let's pop some Advil in the meantime and if you see me grasping my chest in pain, don't worry. It's all good.

Muchos Smoochos!
Laura