Quick Note

Just wanted to send out a quick note to let you know that I still have no answers in regards to my clinical trial…  Frustrating yes, Pat says I should get in my car and drive 7 hours to Houston and show them how to get the job done.  I unfortunately no longer have the strength and energy to do that so for now, will continue on the phone and hoping that someone will help me.

I also wanted to let you know that although we do not have a lot of detail, Michael’s lawyer called to say that the DA will be requesting postponement on Friday, December 2^nd so no real hearing will take place.  Basically, do not stop praying but nothing will happen this Friday.

Please make sure you tell your love ones ‘I Love You’ every day, if possible give them a hug.  This week I have received noticed of one friends step Mom passing away, another friends mother going into hospice and another friend sister-in-law going through double mastectomy…

Fuck Cancer

ME

I have faith that in the end it will all work out…

Did you all have a Happy Thanksgiving?  I did, we had 14 people and the food and company were excellent.  Once you have a holiday when someone is missing then you appreciate and treasure that much more every time you can all get together.

I know that some of my friends and even family members do not believe in the power of God and some even get chills when I talk about my faith but please know that without it, I have nothing.

I have faith that in the end it will all work out, my insurance website clearly says that they do support clinical trials as long as it is approved by the National Cancer Institute (NCI).  The NCI website clearly reports my trial as approved… so in the end, once the right person from MD Anderson calls the right person from Tricare/Humana and the paper work is submitted it will be approved and I will start the trial… but what about the time lapsed, that is my concern now.  Since I have stopped taking the alternative medicine I have greater back pain and less energy, and as I said before my next concern is the cancer spreading.

I was told a few months back that if the chemo worked, I could have 18 months to 3 years of life and if the treatment did not work, the statistics were 6 months.  As we know the chemo did not work.  My greater concern is that while undergoing chemo, the tumor in the adrenal gland doubled in size and it went from one tumor to three.  This clinical trial is not a cure for cancer but the hope is that it slows down the process and gives me a few more years.  You know what that means right?  If it works you will have to put up with this blog for a bit longer…  I pray.

Anyway, since my last blog I have to tell you what my amazing friends have done.  One sent a message to Anderson Cooper who is a daytime show host.  Another friend got on the phone and contacted the National Cancer Institute then sent me the emergency number to call for patient advocate for both the NCI and MD Anderson.  Another even sent a message to Ellen DeGeneres asking for help.  And of course the many of you who send me uplifting and supporting messages plus the ones that continue to pray.

I am glad that this time of the year is not called ‘Giftgiving’ or ‘favorgiving’ or ‘moneygiving’ because I could not afford that kind of giving but since it is the season for ‘Thanksgiving’ I want to thank you all from the bottom of my heart for your support and prayers. 

And one more thing, we (I) can’t let the ‘evil one’ distract us from the events of the coming week as Friday, December 2^nd  is a big court day for Michael and this is so much more important to me then my own health.  This hearing will show us which way the court system is leaning in regards to Michael’s fate.  The lawyers tell me that it will take a miracle, but since I believe in miracle I will continue to ask till the end: first, that Michael does NOT go to jail and second, that he is not charged with a felony.  Thanks for praying with me.

Love y’all,

ME

Clinical Trial denied

I should not complain and just count my blessing having Michael here but I just received a huge blow.  MD Anderson informed me that my insurance ‘Tricare Standard/Humana’ denied my participation on Clinical Trials.  This leaves me with nothing and it is a death sentence.

I have spent many hours on the phone, talked to almost a dozen people and what I have is Tricare DOES approve of clinical trials if they are approved by the National Cancer Institute (which this one is).  The proper paperwork is necessary including a medical necessity.  MD Anderson says that there approach is to first get a verbal approval that clinical trials are covered before they go through submitting all that paperwork.  So in the end they both say ‘my hands are tied’, well guess what ‘MY LIFE IS IN YOUR HANDS’ witch….

So MD Anderson will call again today and if Tricare says yes, will then submit the paperwork but I was warned that ‘It will be a MIRACLE if they approve within 30 days’. S H I double hockey stick.  As of today, I have been without treatment for 7 weeks; I need God’s help for the cancer not to spread too much in the upcoming days.

Just to let you know, I am sad and upset and wishes that the old Luisa could take over and ring their necks, but I know better and getting angry will not solve my problem…  So I wait and cry.

Since Thanksgiving is tomorrow and I do not believe in leaving my readers with sadness I want to let you all know that MICHAEL IS HERE.  As indicated in my last blog, the court allowed him to leave rehab and will return to California for the December 2^nd hearing.  We will pray a lot next week but for today, tomorrow and the rest of this week, we say thanks. 

I thank God and Jesus and all of my family and friends for your fantastic support.  My sadness will go away soon and the happiness of having Michael will take over.

Happy Turkey day,

ME

Week of Learning

It has been an amazing week of learning and I will share all of it with you today.  But first things first…  Michael is out of rehab and will be coming home by Sunday.  What I learned today is that the more people that pray the more people God listens to and it does not mean that he will always say YES to the majority, but it means that today he did, he said YES to your prayers and mine.  Thank you God and thank all of you who helped me through this.  Now, with the celebration in my heart, please remember that this was only a petition; the real thing starts December 2^nd, when Michael goes to court where they are appealing the charges in hopes that they are reduced.  Don’t worry; I will post a message asking for prayers for that day as well.

Something else I learned is that my daughter is more especial and precious than I could ever imagine.  She made the trip to Houston with me and had to bring Maggie.  Some of you can imagine what it is like to take an 8 month old baby on a long road trip and out of her element.  It is the kind of stuff you do for a well worth vacation but not to stay at a hotel and make trips to the hospital.  So Michelle, thank you…  You are the best.  And before closing this subject, I want to let you know one more thing that I remembered (learned a long time ago and had forgotten), even angels like Maggie, with the biggest smile on her face all the time, DO NOT do well on drastic changes like long trips, eating times and sleeping bed.  We are fortunate that my next trip to Houston will not require that I have someone with me so I can do it solo.

Another thing I learned this week is that Non-Small Cell Lung Cancer (adenocarcinoma) is one of the greatest mutant cancer cells and that is why doctors have not been able to control it and the death rate is so very high (80% within 5 years).  With that said, the clinical trial that I will start is dependent on what mutation I have, and the best hopes is that the treatment makes the cells go dormant for a long time but know that I will NEVER be cancer free unless of course there is a miracle…  it can happen!!!! 

One unfortunate event is that doctors do not believe in alternative medicine so I have to discontinue all my meds and potions for now.  It is the typical situation where a doctor will prescribe a medicine they know little about into a body they know less about.  Also it is the pharmaceuticals that mostly sponsor the research so for now; I will keep my opinions to myself and try this in hopes for a better and longer life.  Remember, I am not ready to die just yet.

I want to give a special thanks to two beautiful nurses at MD Anderson, one is Nina who took care of me pre-op, when she realized that I was alone, she gave me a hug and said a prayer for me, and the other one that took care of me during recovery, her name is Eliza Rodriguez.  I was alone because they would not let Maggie in the IR so Eliza held my hand, listen to me moping about my pain, gave me good stuff too and we shared, and talked.  It is fascinating how God just puts people in your path just when you need them.

Love y’all, thanks for the support and today I cry happy tears

ME  

“I’m Gonna Love you through it” – Martina McBride

Have you heard this song?  I know, it is considered country and most of my friends are NOT ‘Country or Western’ fans but the words and the message are amazing. It basically talks about a husband promising his wife that he will love her through the breast cancer fight.

I like it because it reminds me of how wonderful my husband has been through all my fights with cancer and all our mishaps in the past few years.  From that thought I go onto my children, Mom and sisters who have supported me and have tried to alleviate the weight that Pat carries.  And from there I go to the many friends who are loving me through it.

It is not easy to keep your spirits up day in and day out when your love one is hurting.  So this song is a good reminder that it is not all about me, that I am not the only one suffering through this horrible disease.

When I went to the internet to find the words, I found other websites where people made comments about parents that could not take it and left the spouse. Or maybe stayed but after a while faded away.  I can’t blame them.  Don’t get me wrong, it is not that I agree or believe that it is okay to walk away from responsibility especially during adversity.  But there are times that I wish I could walk away.  It is like having a colic baby that never outgrows the pain and crying, at first you try everything and in the end you just put on ear plugs…  I promise I didn’t do that as I never had a colic baby, but I know of people who have; and again I can’t blame them.

And this is really not only about cancer but it is about love and support through the hard times in life.  So today, please turn to your partner, your family or that best friend and say ‘thanks’ for the many times that they have loved you through it.

Love yah,

ME

PS. Here is a link to the song http://www.youtube.com/watch?v=ZYNOXRifXKQ&noredirect=1    

Pillar

Some say that the wife is the Pillar of the family while the husband is the Head of Household.  Some say that the man is the Pillar and the wife the scaffolding; neither makes sense without the other.  When I Goggled it, it even said that in some villages, the first male born is the pillar.

No matter, in my house I worked hard to be the pillar or glue, the one that always knew where everything was, how everyone was doing and where we needed to be and when.

Now, there are days when I want to give up the role.  I know, some of my ex-coworkers must be saying ‘Luisa, giving up control? No way’ but ‘Yes way’.  It is too much responsibility and stress to have your family wellbeing in your hands.   On the other hand, is it right to quit a day here or there?  I have not done knowledge transfer for the role to anyone so… What to do?

Nothing, just write about it and move on…  Thanks for listening.

Now on updates, after I wrote the last blog, on the same day, an hour later I got a call from Sloan-Kettering with a phone consultation.  The doctor told me that there are several other chemotherapy drugs that I could use and might prove successful for my cancer; he suggested I wait a week for MD Anderson before moving forward with his recommendation.  A few minutes later we got a call from Michael’s lawyer basically indicating that he should be able to talk to the judge and have Michael out of rehab until the next court date (December 2^nd).  I of course have my hopes up and will be very sad if this does not happen, the hearing is scheduled for Nov. 18^th so loads of prayers and positive thinking.  And ½ hour later I got a call from MD Anderson confirming my acceptance to the clinical trial and that I will be scheduled this week for some testing and start the trial in 2 to 3 weeks….    Hurray…

So Pillar or glue or whatever, I have a lot to look forward to in the next few weeks and I am happy.  How about you?  Are you happy?  Remember if you are not having a good day or you need a pick-me-up, visit my daughter’s blog http://leachlove.blogspot.com and just look at the pictures of Maggie smiling, which will make your day.

Love,

ME

Fantasy Fest has Angels too

As most of you know I had a few hard days before heading down to Paradise, with platelets and red blood cell transfusion the day before the trip and the day we left I had a bad cough and laryngitis.  Oh, well, no matter I still had a good time even though some things were left undone (for now).  For those that do not have access to Facebook, click on the link below and it will take you to my facebook so you can see how much fun I did have.  Keep in mind that there are a lot of more pictures but not for internet publishing…

Link https://www.facebook.com/media/set/?set=a.2626888711017.2154117.1219280294&type=1&l=3ba522b201

 So about the Angels…  We are at the Boob, Pole Dancing event and it starts to rain, a man standing under an umbrella makes space for me (which was mine in the first place), anyway, as he is looking at my boobs which were well covered but he was short and that is what he was looking at, he noticed that I had a port.  He proceeds to show me his scar and tell me that he had colon cancer and that he has a pump for maintenance but that he is cancer free…  Nice.

When we left that event, we went to Caroline’s for a Rum Runner…  I know, I am not supposed to have alcohol and worst rum but I just had to do it, it is tradition.  While there a lady named Brenda Lee from Tennessee starts talking to me and after a few words she proceeds to tell me that she runs a ranch outside of Nashville that is for alternative medicine and learning what to eat and what do for cancer patients.  Incredible, I am to call her and she will get me in if I decide to go that route.  At this point and not hearing from anyone it seems like my only alternative.

Believe it or not, when we left there and continued to walk towards home it started to rain again and we pulled over a gelato store and guess what, the owner saw my port (must have been looking at my boobs) and showed me his port.  He is a stage 4 cancer survivor as well and was treated by a doctor from the University of Michigan. More than unbelievable, I think God was sending me Angels to remind me that there is hope and that I have loads of options.

To learn more about Fantasy Fest in Key West Florida, please Google it as what you will find is much better than me trying to explain.

There are two pictures here; one is the group that we were with the night of the parade which has

Wish and Suzanne Washburn (Pat’s cousins) who live in Key West and are gracious enough to let us come and stay with them during this fun time.  There are Louie and Maureen who own a sign shop called Montage http://montagekeywest.com/ , don’t miss it if you go there.  Our friend Connie Martin who had come to see us in Oklahoma in late August and managed to be in Key West at the same time…  coincidence, NOT; and finally my hubby as the Sugar Cane man and me.  The second picture is me with my boyfriends; I have now taken a picture with these guys for 4 years in a row and I only know that because they wear the same outfit every year.

 As you can see, fun was had by all…  Now for updates, THERE ARE NONE.  I have not heard from MD Anderson, Sloan-Kettering is suppose to call later today and we have not heard from Michael’s lawyers on updates of his condition of bail changes…  So please keep praying and sending positive energy our way.

Love y’all,

ME