Monday, September 29, 2008

Fierce!



Here is a TaeKwonDo picture of Morgan. She is one fierce doll!

Lolo

Sunday, September 28, 2008

Old friends feed the soul.

One more thing....Heather and I got to meet up with my highschool friend, Katie and her family on Friday night. Her husband and her are both doctors and live in Columbia. Their daughter, Elizabeth, is six and beautiful. We met them for a late dinner before heading back to the hotel for a quick swim. It was a nice dinner. Old friends really do feed the soul. I hope my trips to Jefferson City for this trial will allow Michael and me to stop in more on Katie and her husband, Jonathon.

It was a great night.
Lolo

Building confidence.


Heather and I took the kids on a road trip this weekend to Columbia, MO. It seems that life is putting me back into Missouri these days with travelling to Jefferson City on Thursday then turning around and going to Columbia, MO on Friday night. The Columbia trip was fun. We went down there for a Tae Kwon Do tournament. We are just trying things out and figuring out if we like Karate. Heather and I thought the tournament would give Morgan, Jack and Thatcher a bigger picture of what the sport is about. And, it would help me figure out what the sport is all about too.

Morgan, I must admit, made me so proud. She really stepped up to the plate. It is very confusing to compete for the first time and she got her form correct and then did some spot sparring, which is not something she is used to. She got stuck on one or two of her moves, but she worked through it herself. I was so proud of her perseverence. I could care less if she gets first, second or third. Fourth place, with a wonderful comment from the judge about her stick-to-it attitude, made me so proud.

Jack, who is pictured above, had to wait around quite a bit for his turn. Heather and I were hoping they would let Thatcher and Jack go earlier as they are members of the Tiny Tiger class. These are kids that are five and under. Anyway, Jack was just so cute. When he started to go, I watched him step up as well. They let the Tiny Tigers have a coach on the floor to help them with moves if they want. But, Jack didn't want any help. He just made up his own form on the spot and shouted "HIYA!" really loud. I was cracking up. The judges loved it. Of course, in the future, he would need to do an actual form of four to seven moves, but for yesterday...it was perfect!

I didn't get tp watch Thatcher because they split Jack and him up as Thatch is a little older. But, Thatcher seemed happy about the experience and was ecstatic to be there. Heather got to watch him and to video him. It was a very sweet event.

Blessings,
Lolo

Thursday, September 25, 2008

Hurry up and wait!

Alright, friends, we are now just waiting to hear form the drug company to know if we will make the trial. However, all signs look good that I will make the trial. I didn't get any new count updates today, but once they get that information, they will send it in to the drug company. We should know by Monday. We have an appointment scheduled for Tuesday in Jeff City at 10am for the trial to move forward. So, that is what I am going to focus on. I am going to just look toward the appointment and believe it will happen. I will write about and focus on other things, but will appreciate any positive thoughts and prayers you send my way. Life is good and I am healing!

It is all about the journey, I am slowly starting to figure that out. It is not about the end of the trip, it is what you learn along the way. I have learned that so many people love me and care about me and that I am worthy of it. I have accepted that I am an eccentric, tomboy, writer. And, I love my family with all of my heart. Though the cancer has been treacherous, at times, it is the burden that I have dealt with because I had to...a means to true understanding in this world. However, not much longer, because we are blasting this cancer out of me. We already have done so much, but there is much left to do.

Just think these new meds will allow my hair to grow back in, my weight to normalize out and I will be able to get back on the bike. Slowly, but surely, the journey is bringing me to a wonderful place.

Blesssings,
Lolo

Another adventure!

So, Michael and I are headed to Jefferson City today to get my official blood counts for the trial for this new medicine. We are still not sure if I am going to "Make the cut". On all, but one criteria, I hit the mark. My liver is functioning pretty well. My counts, at least, seem to indicate this. I must admit that I don't feel overwhelmingly wonderful all of the time. I think it will just take time for me to start to feel good again. Every time I eat, I feel the digestive process going on in my body. It is a bit wild. It is not necessarily bad, just a new normal that I need to get used to.

Overall, I feel better and I think my body is metabolizing food and medicine more efficiently. My bilirubin count is in ideal range, which says a lot about the liver. It is a resillient organ...an amazing one at that. It has stem cell functionality and can regenerate. How bizarre. Regardless, my liver is getting used to the stint and I am able to eat better and my coloring is back to normal. My peach fuzz hair is growing in. And, I am going to be starting a new medicine.

If, for some reason, I can't get into this trial now...we will just start on another medicine. It is not a one-medicine world. And, of course, if the clinical trial people push back on me about the trial, then Michael and I are ready and willing to argue and petition to see if we can get in. But, if it doesn't work, we have our alternative medicine ready to go and we will just keep moving forward.

I will keep you all posted about our road trip today when I get back!

Blessings,
Lolo

Tuesday, September 23, 2008

Whirlwind of a week!

So far, this week has been a whirlwind. I imagine the bulk of October will be like this with so many upcoming breast cancer awareness events. I am think I am starting to feel better with the outpatient surgery behind me. Sometime over the next couple of days, I will get confirmed blood counts on my bilirubin and liver enzymes. If all goes well, which it should, then I should be able to head to Jefferson City to have them do my counts and start me up for these new medicines next week.

I have to do my official counts on site at the Jefferson City location. This is because the drug company dictates that all test results must be done on the clinical trial site. I have officially been off meds for over 21 days now. I have to be off the medicines in order for me to qualify for the trial. There are so many little hoops that you have to jump through in order to qualify for a trial. I had no idea before I starting to researching this medicine that literally one small criteria can bump you from trial consideration.

However, once you meet the qualifications, then you are in the trial. It is strange to have this purging of medicine, though. I have been on medicine for so long that it has become a security blanket for me. With every little ache or pain that I have had, I have wondered if it is the cancer. Even though this last set of chemotherapy really did a lot of good in my body, I still worry that a small break from any medicines would cause me major harm. However, this trial seems to be the right medicine so taking a break is just what I have had to do.

Like I said, we have this last criteria of the liver enzyme count coming into check in order for me to qualify. The reason the number has been high is due to the scar tissue in the liver. Furthermore, I had the stint issue where my bile blockage was taking place. Now that the large stint is in, the inflammation from scar tissue should subside. They gave me a steroid in order to reduce the inflammation also. We will get the official word on all of this over the next couple of days.

So, what happens, if I don't make the cut in terms of these numbers? Well, my oncologists think this is highly unlikely, but we have options in terms of other medicines to use. However, I believe my body will be ready so that I can start another wonder-drug. If so, then I am hoping I might be able to document the trial on video so that you all can see what it is like to go to these treatments...and break down the fear of cancer.

Blessings,
Lolo

Saturday, September 20, 2008

Jana Peters Life Is Good Award

(A picture of me and my friend and co-writer, Tina Herold, at the In Living Pink event last night)
So last night, I won the inaugural Jana Peters Life Is Good Award at the In Living Pink event last night. This event was sponsored by Young Survival Coalition and Ribbons of Pink. I can only tell you that the night was a total blur. I know I wrote about this in my last post, but I wanted to write a little more today. I wrote and rewrote my speech over and over, but in the end, I was so honored and humbled by winning the award...I am not really sure what I said. My main thing is that I wanted to honor Jana. I truly feel as though I am a conduit, a flow-through to share information. Though I don't want to discount my accomplishments, my goal is not to achieve awards or recognition...and certainly, I did not believe I would get this award in Jana's honor.

Jana was one of the co-authors of Nordies at Noon. She and her co-athors, Kim Carlos, Patti Balwanz and Jennifer Johnson paved the way for an advocate/writer like me. They published their book while Jana was still alive. Unfortunately, Patti had already passed away from this wretched disease. Jana was diagnosed with metastatic disease just 18 months after her initial diagnosis. It is right the way this disease steals away the life of the vital and the young.

Though I have combed through Jana's website (ribbonsofpink.org) and the Nordie's web site (nordiesatnoon.com), I still find myself wishing that I had truly KNOWN Jana....that there had been time for us to meet. I had read and re-read her sections of the book so that I could be sure to prepare for the event last night. I wanted to make sure to capture her spirit during my speech. She strove to educate others while keeping cancer at bay. She had a wonderful relationship with her husband, Chris. They lived the last two-and-a-half years in her life in San Francisco, which was a dream of theirs.

When I was told I received the award, I could not believe it. I felt unworthy and as I went back to research Jana more, I connected so much with her as a fellow writer. I still felt unworthy when I accepted the award and gave my speech. Yet, I know her better now and that will help me to better advocate for others, to educate people on cancer and to write my story. Look at the impact her one life had on me, I only hope that I can help others in the way that she did.

Jana wore Life Is Good hats during and after treatment and truly believed that life is good, just like I do. Regardless of Stage IV status, my life is still good. The committee gave me beautiful pink flowers and a wonderful engraved pink statue. They also gave me a pink Life is Good shirt which I have been wearing all day. I am trying to embrace the pink and keep on keeping on!

I am truly honored to even know of Jana. Please check out the websites above if you want to learn more about the other Nordie's at Noon girls. I can't guarantee that you won't shed a tear, but I can guarantee you will be better for the experience. I will also add links to the right.

Blessings,
Lolo

Friday, September 19, 2008

So, all this good karma keeps coming my way!

Alright, one of the things I don't really like about cancer is that it has compelled me to tell my story. That is why I blog, because it helps me get rid of this energy and desire that dictates what I need to say. I don't like talking about myself. If given a chance, I would much rather talk about any of you and all the wonderful things you are doing. Yet, in order to advocate for others, I have to share about myself. I hope that never seems braggy. I always try to approach it with humility, but I also want you to know the good things that can come from this disease. There are many unexpected gifts along the way.

Tonight, I will be accepting an award for my advocacy efforts at the In Living Pink dinner. The award is in honor of Jana Peters, who was a breast cancer survivor and co-author of Nordie's at Noon. Jana was a nurse and she was a fighter. After finding out I was so graciously nominated by my friends Rose and Tina...yes, I cornered them and made them fess up...I also immediately found out that I had won. The book Nordie's at Noon has done a lot of good for a lot of young women. It has helped many people to see that you don't have to actually get cancer in order to learn the wisdom of survivors.

Jana was like me. She was passionate about education. She was also Stage IV from very early on like me. She was an advocate for herself and for others. She advocated for women to do self-exams and she started the Ribbons of Pink organization that focused on educating young women to do self-exams and actively advocate for themselves.

After the nomination, I read and re-read her sections of the book in order to prepare for my acceptance speech. I was pleasantly surprised at how much we all have in common. There were many times when I was reading her and thought..."those very words have come out of my mouth before". Eerie. I must admit I don't feel worthy of the award, yet I will glad accept it. The reason I don't feel worthy is because I am alive and here and I get to live out my passion.

My passion is to help all of YOU! My passion is to educate people through my writing and other communications so that other people don't have to get a disease in order to find joy in their own existence. My passion is that you will appreciate those small moments in each little day be reading this blog or some of the other stories I am working on.

I remember when I was young, people would always say..."well, you always have your health" when things didn't seem to be going my way. Yet, now that my health seems a little shaky, I still have so much more than I ever thought I did. I have a voice in my existence and an effect on this world. Jana did too. Reading about her and just knowing of her existence really helped me to do many of the things that I am doing. She paved the way for me to survive and thrive with this disease.

Unfortunately, Jana lost her battle with cancer a couple of years ago. I hate to say it that way because it really connotes that cancer had a victory over her, when I believer she and her legacy are the real victors. I know she is missed, tremendously, by her friends and I wish I had known her personally because I get the impression we would have been great friends. She was a spit-fire like me, very spunky and vibrant...very full of life.

I have told you all that I consider my fight against cancer to be a full-time job and I take it seriously. I am still recovering from my surgery, but my bilirubin count is back in line! Yes, totally back in line. This permanent stint is doing its job. Though I feel uncomfortable throughout the day after eating, I know that my liver is healing. We still need one more liver count to come down so I can get on this trial. We believe that should happen over the next week and then I will be in the trial. I visualize myself in the trial as I can not accept anything less than that. I will meditate on my healing and believe we will get there. We have come so far.

So this awards ceremony is tonight and the wonder drug trial is around the corner. So many good things happening to me. I am truly blessed. I hope you feel the same.

Blessings,
Lolo

Tuesday, September 16, 2008

What to look for!


This is the Redbook magazine that is coming on the shelf this week. I am on page 130! Still can't believe it, but wanted to share. I am grabbing up as many as I can, but I still need to get more. It is a really nice article and they were so kind to put our pictures and a snippet of our stories in the magazine.

Morgan was stoked to see her name in the magazine. She feels as though she is famous rock star already. :)

Blessings,
Lolo

Monday, September 15, 2008

Had my outpatient surgery.

I had my outpatient surgery today. They were able to put a larger, more permanent, stint in my liver. I am already starting to feel better, but am tired from the medicines. It will take a couple of day do feel more normal. I am not sure if the Jeff City trial docs will want us to drive out there later in the week to do new blood counts, but my counts were already a lot better today...even before the procedure. Go figure. The body is pretty resilient, even under stress.

I am planning on going to bed soon, but just wanted you all to know that things went well and I am recovering well.

Blessings,
Lolo

Sunday, September 14, 2008

New things.

Added my other two Why Pink photos to the blog below on the right. I am working on finalizing some book signing events and awareness events for October. Though my treatment is still in full swing, there is still a need for advocacy! So, I will try to fill it. I will keep you posted on all these events. I will have my outpatient procedure tomorrow and will write when I am back at the house and recovered from the loopy pain meds!

Have a wonderful Monday!

Blessings,
Lolo

Saturday, September 13, 2008

Lolo Update!

Well, Michael and I spent Thursday and Friday in Jefferson City. We met with the doctor and his medical team Thursday and they ran various medical tests on me. Then I had scans run on me on Friday. I had four scans...an ECHO for the heart, a CT, a brain MRI and a bone scan. I took a sedative because the MRI is pretty traumatic. Even if you aren't claustrophobic, it is hard not to be when you have your head in a cage and a lot of metal sounds on the outside of the machine. It literally sounds like heavy artillery being shot at me in a random fashion. Horrid! They even give you head phones, but it doesn't matter. The only thing that helps is semi-sleeping through it so that is what I try to do.

I think we have jumped through most of the hoops to get on this trial. We had a series of questions for the doctor there, the main thing being that he would be comfortable with working with my oncologist here in KC. I want my medical team to expand, as it needs to...I don't want to have to exclude my old team. In fact, I just won't do it. The trial may be run be a site here in Overland Park, yet they are wanting me to transfer everything to them for a year and basically not keep contact with my oncologist. Not sure that I understand that.

I had our insurance company try to make me switch last year also. They said he wasn't on our plan. So, we have forked out a lot of our own personal money to keep this team because, quite frankly, they have proven themselves several times over to SAVE MY LIFE! I am not really putting that in all caps for you all, but for the doctors or the insurance companies who would try to make me switch for sub-par medical care. I am not sure they realize this, but my life is hanging in a delicate balance right now. I can not get my choices wrong. So, I won't.

My story is not about dying from this disease, but about living with it until I can find that magic bullet to blast it out of my body for good. That does not mean I don't have bad days. To be honest, this week hasn't been very good. I have had digestion issues because the benefit of my stint is wearing off. It is a small stint so we did not expect much from it, yet it is horrible to feel as though you are hungry, yet you are not sure what a food you are eating is going to do to your digestive system.

Anyway, because of this problem, my bilirubin count was high when we went in for the bloodwork on Thursday. However, this is not a non-starter. This does not mean I can't get in the trial. Besides this residual liver issue, I have never really had been symptomatic with my disease. I have endured side effects from medicines, but my actual cancer has not caused me many, if any symptoms. Funny, huh? I am a great candidate for this trial. My heart is good and I tolerate meds with minimal side effects. It is a targeted drug that goes after my type of cancer...so what are we going to do about the counts?

Well, this is what happens when you have a great medical team (and a great husband). While I was in scans Friday, the Jeff City doctor's office got a new appointment for my next bile duct stint, which was very kind of them. However, none of us were happy with the lateness in appointment (about 10 days out from now) because this would push my being on the trial out for a bit longer. We have to give the liver some time to work the excess bile through my body before we do blood counts again.

So Michael called my oncologist at KUMED to see if he could help because he knows my the surgeon. Michael left messages with everyone on our doctor's team and told them of the dilemma and they were able to work with the bile stint surgeon (real title, unknown to me so I hope that does not sound insulting - he is a guru to me) to get me in this MONDAY morning at 9am. Yes, I said Monday morning at 9am! There was a late cancellation so the pushed me right into the appointment. (On a side note, I am not sure how you could cancel with a doctor like this because there is usually a need for the procedure, but I will not question it too much.) Michael and I were so ecstatic because, mostly, this will minimize my days of discomfort. But, if things go like clockwork I could start the trial without a glitch in Jeff City, MO the following week. There would be no delay from our original plan.

We will call our team in Jeff City on Monday to let them know of this change in scheduling. They are very kind and courteous, hardworking. We can tell they want me in the trial because they want to help me. They were never possessive of me, even offered to let me come back to KU once they are able to get the. However, the drug company would not allow that. This is okay because Michael and I are not immune to weekly travel. The infusion time is short and I owe my life to Genentech. They created Herceptin, which has helped me and so many of my friends. You know there used to be so many stories and movies about young women getting breast cancer and dying young because there is nothing they could do for them...well, Genentech is one of the drug companies who has changed my story and the story of many of my lovely friends. They are running this trial and if they want me to stay in a specific spot, I am fine with it.

So that is my plan and that is what I will pray for and meditate on. Sometimes, these bends in the road (like with my bilirubin) are actually just bends in the road, not ends to them. Sounds cheesy, but it has been true with me. There is always an option...sometimes you just have to do the hardwork to get there. Thank God, I am a hard worker, huh? :) Because the Jeff City site is one of the first places to get this trial going, I could be the first woman in America to be on the trial. How cool is that? I can put that on some credentialing list for advocating for my own health. Now, keep in mind, I would much rather have good health than to have credentials in fighting so hard for it, but that will come in time. I am sure of it.

If I am a little quiet over the next couple of days, it is because I don't feel great and/or I am recovering from this surgery so don't read anything bad into it. There is nothing bad about it. We are chasing this cancer out of my body and that does not come without side effects. I will definitely write when I can and I will be as open and honest as possible. But, God has made my body resillient and I will be back in action as soon as possible.

Oh, and the Redbook is out...the one with me in it! Yikes! I will post the cover in another post...if I can figure out how? Diane Lane is on the cover, but I am in the middle! ME! So exciting and humbling. Thanks for reading the blog and ask as many questions as you would like.

Blessings,
Lolo

Tuesday, September 9, 2008

Here is the book I am in!


I have attached an image of the book that one of my short essays is in. The book is coming out tomorrow and I am working on coordinating some book signings during the month of October. My story is called My Third Lung and is listed as the second story in the book, as I was first runner up in the contest. So exciting! The first place winner and I, along with the second and third runners-up. will be featured in Redbook in October. Very cool!

I will keep you posted when I get book signings set up so hopefully some of you can come to the event!

Blessings,
Lolo

Monday, September 8, 2008

Update!

So, I have found two other locations that my trial might be taking place at...so my researching continues. These two locations are here in KC so it would be much easier for me to juggle my life and treatments if one of them works out. I am trying to get in contact with those locations to determine if either of them could take me on the trial. In theory, it is the same trial as in Jeff City, MO so they should be able to take me. It is just that getting in touch with all the right people and getting things coordinated can be a bit chaotic, but I will keep plugging away and keep you all posted. I plan on being on this medicine at one of the facilities! I am determined.

I am still a little sore and I am having some digestion issues. Yesterday, I was down-and-out...so to speak. I barely made it through church, just felt bad the whole time. Then, I came home and slept quite a bit. However, I think I have realized that this stint I have in is pretty small. They plan on going in and changing it to a larger stint in a bit, but for now, I will just have to be kind to my digestive tract. I am going to try to juice veggies once a day to help with this.

Sometimes, I think all of this is such a pain and I do get down. Yet, I have no other choice. I am alive and am able to spend my days with my family. I live a pretty good life for someone who is technically "unhealthy". The road back to good health will be a long, but that doesn't mean I need to feel defeated on this journey. I have decided to that I will do whatever it takes...so if that means I need to juice veggies and avoid certain foods, then I will just have to do it. All in all, I don't really care too much about food. I just want to eat to be healthy.

Today, my sister, my mom and my friend, Jennifer, came over to help clean my house. Because I have had such low energy while winding down on this chemotherapy and having to do the bile duct stint surgery, they have decided to help me keep the house clean. It was just so kind of them. Even though I was still in my jammies, Jennifer let me lay on Morgan's bed and tell her what to toss or to give away or to keep. Then, we moved on to Jack's room. My sister folded laundry before her animal advocacy meeting and my mom cleaned out our playroom and cleaned up the rest of the house after Jen and Heather had to leave.

I am amazed at the love that was shown to me by these three women who I admire, just when you start to get down...three angels come your way and raise your spirits. That is what they did for me. They expect nothing for it, just for me to get well. So, that is what I will do.

Blessings,
Lolo

Saturday, September 6, 2008

Feeling better...

Hi friends, just wanted to let you know I am feeling better. It takes time to recover from bilirubin issues, but I am getting there. I am on task to go to Jeff City later this week to get scans for this trial. I am stoked! I really want this medicine, can you tell? Anyway, I have been relentless about my medical care since the beginning so I guess there is no reason to stop now.

There is a possibility that the study will be available closer to us so I will look into that, but for now, I am just glad that I made the first hurdle of acceptance with the clinical trial coordinator and now they have booked scans for me. All scans have to be redone for the trial, it is like anything else at other facilities don't count. So, I will have a CT scan of my chest/abdomen and pelvis, an MRI of my brain (ick!) and a MUGA scan, which is a scan of the efficacy of my left ventricular function of my heart.

I despise scans, but I am becoming friends with them. After all, they have saved my life many times over and I chose to go to a facility that uses them for staging cancer so it is my own fault. I am proud of myself in that I asked for sedation on the brain MRI because it is pretty scary. This is the one where your whole body is put in a tube and scanned for about 30 minutes. The scan is very noisy, it sounds like heavy artillery is being used on the outside of the MRI machine so it is very hard to relax. I am not normally claustrophobic, but even the bravest of souls would be claustrophobic in this setting...so I am opting for a little sedation to help me relax and I would recommend it for anyone who ever gets a full MRI.

Alright, I will write more later. Right now the kids are settling down to watch a movie and I am going to try to relax. Please be sure to check out my new picture from WHY PINK? I have a couple of others to upload to the web site. They did a great job on my photos. Very exciting!

Blessings,
Lolo

Friday, September 5, 2008

Fatigue.

As I am coming off of the major side effects of chemo, the one side effect that lingers is fatigue. Sometimes the fatigue makes me feel bone-tired, and I truly mean I can feel tired in my bones. I am sure there is a medical reason for this, but I don't really know what it is.

Today, I feel much better...however, every so often, a cloud of fatigue sits over my activities. It threatens to overtake my day, but I just keep moving forward and pull myself through it. On days like yesterday, my legs feel like lead weights and every activity requires a significant amount of energy on my part.

I can tell you that I know this will change. What is happening is that the fatigue is the one characteristic of chemo that build over time. So, even though I am getting this last chemo out of my system, the fatigue will stay around for a while. It will probably be a day-by-day thing. For instance, yesterday was a bad day, but today seems to be better.

It will probably take a couple of months for me to feel normal, but I will just live how my conditions are in the current day. I will let this energy dictate what I should do during the day. I will accept the help of others to keep my house clean and to get my mailing out and to do all the things I need to do. This is because part of my journey is about letting people in, about accepting love from others. So, I do my best to accept the current conditions of my body.

So, for today, I am going to work on writing and preparing for the "pass it on" campaign. I am also going to meet with some people regarding an upcoming speaking event in relation to breast cancer awareness. Life keeps moving and I will move with it.

Blessings,
Lolo

Wednesday, September 3, 2008

Fighting cancer like it's a full-time job?

So I have come to the realization that my fighting cancer nearly takes the attention of a full-time job. I am not complaining as there is nothing productive that can come from that type of behavior. I am just letting you know that I approach my disease as I would any job....with professionalism, completeness in care and thoroughness in research.

With the pending change in medicine approaching, I spent last weekend researching clinical trials that might affect my health. There is a new drug being tested called DM1. I assume if this drug is successful, then it will get another name that is far more difficult to pronounce. :) However, until then, DM1 is the name.

We tried to get me on another version of this trial about four months ago. However, we were not successful because my liver enzyme counts were out of whack from the cancer that had grown on it. Over time, my liver enzyme counts have gotten better. This bile duct surgery that I had recently should help to bring most of those counts down for good. However, the liver enzymes are extremely reactive...to everything. So, my counts were always high while on the chemo and that is typical. My counts switched from being high based on cancer to being high based on the chemo.

Regardless, I felt slighted because I didn't make the cut in this first trial. I am so competitive. I try not to show it to the outside world because it can be an unattractive trait, when out of balance. However, this is me. I am competitive at my core and I don't like getting a bad grade or being rejected on a clinical trial. I like to be the best that I can be and I want the best medical care.

Let me stop and clarify that I absolutely believe I have the best physician for me. He is so thorough and kind. He has hundreds of patients, yet he always gives me his time and 100% of his focus. If I send him information about research, he will always follow up. If I need other doctors, such as in the bile duct surgery, he sends me to the best one he knows and asks them to expedite the surgery as best they can.

I believe in him and trust him implicitly because over time, I have learned that he believes in me. He is always up-to-date on the latest medicines and pursues optimal health for me. All that being said, sometimes the best medicines are not always available in all facilities.

With DM1, it is doing so well, that the drug company has opened up a new trial. I found the trial on clinicaltrials.gov, which is a web site my oncologist told me to view. The original trial was closed while I was on this last set of chemotherapy so I didn't think I would get in. However, this new trial opens things up for me. It is so new that the web site doesn't really indicate where the trial is available.

So, I spent the weekend trying to figure out the closest location for the trial. I found a co-survivor who is on the first trial and she told me this second trial might be available in Jefferson City, MO....about two-and-a-half hours from me. She found me the contact information and I called the doctors office on Tuesday. I got as much documentation from them and handed it over to my oncologist on Tuesday morning.

This is how you know you have a good doctor...when you give them information about a competing facility that has the right medicine for you and they encourage you to pursue the medicine. So, our next steps are on hold right now until I figure out if I make the cut for this trial.

My oncologist's office is forwarding all relevant health information to the Jeff City office. Once they review things, and if I make this first cut, then I will go to Jeff City next week and they will do scans, bloodwork, etc. Trials are very specific...in most instances, all work on the patient must be performed in a specific facility. So, even though I had scans three weeks ago, those won't count for the trial. It is fine. I don't really care because my family and I will do whatever we can to get me the best treatment.

People often think you have to go to MD Anderson or Sloan-Kettering to find the best medical care. This can be helpful, but is not always necessary. The purpose is to find good care in a quality physician who knows how to tap into the right resources and has time to research. I also think it is helpful that my oncologist is ONLY focused on breast cancer. Each cancer is so unique and complex. Just focusing on one cancer is still overwhelming, but this type of approach ensure that you are getting someone who focuses on your disease.

So, the plan is to pursue this trial. The medicine is chemo-powered, but is only tagged for her2neu cells. What this means is that it has the power of a chemo, but will not kill good cells in my body with the bad. There are her2 cells on the heart that can be affected, but that is the only other concern when dealing with her2neu drugs.

If, for some reason, I don't "make the cut", then we will continue with another milder chemotherapy and the two maintenance drugs I am currently on, Herceptin and Tykerb> See why this cancer-fighting business seems like a full-time job. Whew, so many drugs to consider, so many effects to consider.

Regardless, with any of the drugs in my future, my white blood cell counts should normalize, my hair will grow back and I will not be anemic anymore. With my bile stent, my digestive system is getting back to normal and I am feeling better.

I am not delusional, this year has been a difficult one. However, my story is a testament that paying attention to your health and being in charge of your medical team can make a difference. I don't really mind focusing on my cancer like it is a full-time job. I wouldn't know how to approach it with any less zeal than if I were getting paid for it.

Please take charge of your health now because it matters. You can make a remarkable difference!

Blessings,
Lolo

Monday, September 1, 2008

Thought I should clarify...


Attached, is a photo taken of me at our recent "Pass It On!" photo shoot. I am not sure if I am going to use this specific photo in the campaign, or just use it on the web site and for other things. Regardless, this is what I looked like a couple of weeks ago. This is what a cancer survivor looks like. I am a little down on my weight because of the last bit of chemo, but I am starting to have more energy. It will take time, but I will get back to a normal version of me.

Sometimes, cancer interrupts. It takes over my world and demands attention, yet other times I am able to manage my disease well and keep it stable. When it is like that, our life is pretty normal. I can work out a lot and I have great energy, which helps. Working out while on meds helps because it helps my body tolerate the side effects very well. For the most part, I do handle the side effects very well. I can live a very normal life where I can be a part of the kid's days in a major way.

I will tell you that I can't always get everything done, like house cleaning. It tends to go to the wayside because the kids come first. Michael and I focus on them as much as we can. However, I do have a point. I will finally get to it!:)

I just wanted to clarify that all the cancer I am dealing with is breast cancer. It gets really confusing once cancer starts affecting other organs, but the cancer that I have had on my liver is actually breast cancer. That is the only cancer I have. I thought this would be a good thing to point out because I forget how confusing this disease can be from an outsiders perspective.

What happens is that cancer originates in one area and is named for that area. There are sub-categories of breast cancer and various types within the type...so it gets pretty confusing. However, all of it is breast cancer. What happened with me is that breast cancer originated in my left breast. Small cells broke off from that primary tumor and moved through my blood stream. Breast cancer likes to travel and "stay" on the liver, lungs, bone and brain. That doesn't mean my little cancer cells didn't go to another organ, it is just likely breast cancer would not grow on another organ like it has on my liver.

All cancers are unique and each person is unique. So, doctors try to speculate, based on clinical trials and working with colleagues, to figure out what meds will work great for what type of cancer. However, cancer has DNA just like any other cell in your body and the problem takes place when the DNA in cancer cells evolve and work around the medicines to find other ways to fuel the disease.

What does this mean? For example, my cancer is not fueled by hormones, but it is fueled by an oncogene. An oncogene is a protein that is found on cancer cells that allow it to multiply out of control. It is the gasoline for the car. My oncogene is "her2neu"...we will abbreviate this as "her2". I take a targeted drug called Herceptin that tries to squash this protein from developing new cancer cells.

For me, my cancer has a potent amount of her2..which means it is an aggressive cancer. I have known this from the beginning and have just decided that this is just information. I don't give it any more power than it needs...because having this characteristic also helps my doctor feel comfortable with us trying certain meds. These meds are focused on attacking her2. For the most part, these meds have done wonders for me....truly, they have saved my life.

But...remember that cancer has DNA and it is smart. Cancer can find a way to go around the her2 cell to fuel growth and it can use her1, her3 or her4...which are other oncogenes similar to and present with her2. I don't really understand the cell biology, I just know we need to shut her 1 through her4 down. Untiil then, I believe we will be on meds for about three to six months and then will make switches.

My own speculation is that after about three to six months my cancer cells find a way to work around the meds and find a new way to grow a little. This last string of meds really shut the cancer down in many ways, but it is still on the liver. Please know that with breast cancer, the goal is to shut down growth...not necessarily for cancer to disappear. It would be nice if it would totally go away, but it will take time for that.

I am always hopeful regardless of this aggressive disease. We are contemplating new meds right now. I will stay on two drugs that block her1 and her2. We are just trying to figure out what other medicine to get on for now. The purpose, once again, is for no new growth and I think we can do that. I know we can.

There is a new drug being studied right now that shuts down all four her proteins. I believe I will eventually be on this medicine. It is not available on the market yet, but if the study goes well...it will be available in a year or two. Also, there is another drug that has the power of chemotherapy, but is tagged for only her2neu cells. It is being studied now too.

FIve years ago...or even just before I got diagnosed with cancer, which was three-and-a-half years ago, these drugs were not even available. They were only in clinical trial. But, Herceptin became available to me immediately during treatment. I believe it is one of the tiny miracles that have taken place in my life to prolong and ensure healing.

I have always believed my story is about healing...about living with cancer. I plan on living a long life and I also believe this cancer will be deemed "stable" consistently over time. We may have some more bumps in the road along the way. But, I am young so my cell division process moves pretty quickly right now. Eventually, that will change too...which will slow growth.

Alright, enough with the confusing medical information. Let me know if you have questions.

Blessings,
Lolo