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?