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

Platelets

What are they?  Why are they so important?  What is normal?  This blog will be for education as I am trying to understand why this is happening and why is everyone concerned when I feel fine (for the most part).

Platelets- are small fragments of cellular material in the blood. They originate by splitting off from large cells in the bone marrow.
Why are they so important? - They are necessary for the process of clotting when blood vessels are damaged, both by providing crucial chemical substances and by physically plugging the hole.

What is normal?  A normal platelet count in a healthy individual is between 150,000 and 450,000.

Alrighty then, mine were 19,000 yesterday when they sent me to the hospital for a transfusion so now I know.  My nose was bleeding nonstop for over a day when I called the nurse to make sure that it was okay and she calmly and told me to get there right away.  Once the blood test was done and she was sending me to the hospital she very sternly said, do not get in an accident, do not fall, do not cut yourself… hmm, it means that if I had an accident I would have bled to death as I had no platelets to coagulate my blood and close the hole… also, I might be bleeding internally and not really know. 

Why is this happening? Interesting, they are giving me 3 different types of drugs for my chemo, two of which are real trouble, carboplatin and avastin.

The most troubling effect of carboplatin tends to be damage to the bone marrow, in a process called myelosuppression. This leads to anemia. Blood cells produced by the marrow can drop to 10% of normal levels. This level bottoms out a few weeks after carboplatin administration.

Avastin or Bevacizumab inhibits the growth of blood vessels…the FDA warned of the risk of developing perforations in the body, including in the nose, stomach, and intestines.

So as we all know, in the process of trying to cure my cancer other problems are starting to surface therefore proving that the treatment is not working.

Okay, so now I know…  More reason to ask you to pray that MD Anderson or someone calls me back soon with other offers or clinical trial or solutions as I will NOT continue with chemo.

And one more thing that I learned, there are some angels out there that donate blood and other even more important angels who donate platelets.  To donate platelets the person must be connected to a machine similar to dialysis for 3 hours…  To any and all donors, my hat is off to you and may God bless you as you have blessed me.

Enough of that now to the fun part, back in April, before we knew that my cancer was going to metastasize Pat and I made plans to once again go to Key West for Fantasy Fest, and although we do not have costumes yet, we are going ‘platelets or not’ next week for a week of fun, fun and more fun…

So long for now as I will not be writing until I get back… unless some good news comes along.

Love y’all

ME

 BTW, did you schedule your mammogram?  October is almost over!!!

Another BTW, my sweet husband took charge and made me breakfast and dinner and my sweet daughter and Maggie sat with me at the hospital today…  Love you all

Are you my friend?

It is incredible the amount of friends I have, God has blessed me with the most amazing friends that when I try to define friendship, I can’t.  Since I started this latest journey I have had some friends go into hiding and that is okay, please know that I still consider you my friend.  Some friends are playing Pick-a-boo ‘I see you, no I don’t’ and some have come out full on out.

In the past few months I have received calls from all over the world, and I mean all over the world, Costa Rica, Venezuela, Argentina, Ireland…  I have received e-mail and messages from all over the world like Spain, Italy, Germany and of course Argentina and Ireland as we know who those two are…  And the ones in California who open their house for Pat and/or I whenever we need to come out for Michael, and the ones who stay by our side in court month after month and visit Michael at the rehab… Plus the local (USA) calls from very dear friends some call every week some less but still loads of calls and then there are those that say ‘what the heck, let’s go see her’ and I have been blessed with visits from Diana, Diane, Sandy, Solange, Katy and Dirk (who owe us dinner), Connie, Celene, Linda and Charlie, Anita and Steve and this weekend Alan, Teresa and for bonus their daughter Lauren.

Can you feel the love?  I do, and hope to continue on this path as it is so rewarding. 

When people talk about BFF, can you really say that?  Each friend to me is my best friend forever, each friend feeds different parts of my soul and body; I either do not have a Best Friend or I have hundreds of Best Friends and ‘LIKE IT’ and all friends are ‘FOREVER’.

So whatever kind of friend you are, please know that just having you makes me happy but hearing from you is like the top of the top.  Just saying.  Now go phone a friend and make them happy.

PS, I was not going to still another picture from Michelle to put on my blog, but sorry, I could not resist, here are Maggie and Kevin.  Kevin just finished a 'Spirit of Survival' 1/2 marathon in support of Cancer research...  Love you Kevin

Love y’all,

ME