Nice to see you go 2011

Dear Lord,
It is me again, I know, I know, I ask for a lot but it is New Years Eve and today is the biggest wishing day of them all… and believe it or not I only have one request…
Please grant all my friends wishes for the coming year.
Amen

So many people look at a new year as a good thing, they have hopes that it will be better than the last one and look at the year gone by as a bad thing.  Do you realize that the fact that you can say good bye to a year and hello to a new one it itself is a good thing?

YOU ARE ALIVE

Not all made it, I lost some very special friends this year and although I miss them, the fact that they are now my angels in heaven makes it a bit better for me.

Now, I can’t count the year because that is 365 days too long, so I count the days and thank God for a new one, even if the weather is not nice.

Do you have a new years’ resolution?  Will you keep it?  Why bother?  If it is something important to you, it should be a new day resolution and do it every day…  How about if instead of giving something up, you do something nice?  Every day…  Think of someone, give them a call.  Your child has a nice hairdo, say it.  Your friend lost some weight, mention it.  Someone dropped something, pick it up.  It does not have to be something big like, paying someone’s rent for January, although it wouldn’t be bad, but any little bit helps to put a smile on people’s faces.

I smile just by knowing how my friends are doing.  Who got a new cat or puppy or car?  Or who won $10 Pearl dollars playing poker.  Just love it and makes me happy.

Today I say with a smile on my face ‘Good Bye 2011, it is my pleasure to see you go’ and ‘Hello to day 1 of 2012, hope to see lots more of you’.

Love yah,

ME

PS.  Now this coming year we will need to get serious about our health… expect some good stuff

Merry Christmas

… to all and to all a good night.  Wait, the day is just starting.  So still wishing you a Merry Christmas but adding a few things for the day.

First remember the reason for the season ‘CHRISTmas’ and do what HE would do.

Second, Love your family, kiss them, hug them….  Love them lots

Third, be happy, most people like happy people so smile a lot today.

Fourth, take time to remember and honor those that have gone before us.

Fifth, time is up, no need to be sad… rejoice and celebrate their life.

Sixth, count your blessing, keep in mind that if you can count, that is a blessing

Seventh, call your love ones that are far away.

Eighth, don’t drink and drive.

Ninth, eat, sing, dance and laugh tons

Tenth…  Merry Christmas to all and to all a good night

From my heart to yours, Love yah,

ME

Second Opinion - Number ONE priority

You owe it to yourself to have a second opinion and from the right institution.  It does not matter how much you love your doctor, how pretty she is this is about you and not the doctor.

When I first got breast cancer, I had a second opinion but for the breast cancer.  I never had anyone advice me on what to do about the spots on the lung.  So we did chemo for breast cancer.  We know now that the spots were a separate primary Lung Cancer.  If we had known then what we know now, would I have had chemo for breast?  Or would I have had the mastectomy and chemo for lung?  Would the outcome be different?

No one can answer this questions, if the milk had not spilled would you have drank all of it?

Once MD Anderson biopsied the lung and determined that it was Lung Cancer, they conferred with my oncologist and determined the chemo treatment needed.  The report indicating that my cancer had mutated already and it was a KRAS mutation did not come out until later but NO ONE mentioned it, at least not to me.  If I had gone elsewhere for a ‘third’ opinion or if they had known then what they know now would I have received the same treatment?  How about the surgery or even worst the radiation?  I read an article in the internet that it clearly says that mutated Non-Small Cell Lung Cancer (NSCLC) should not undergo radiation.  URRGGGG.  Even worst, if I had gone to a ‘fourth’ opinion once we realized that after radiation my cancer had spread, would I have started on a clinical trial earlier?

None of these questions will ever be answered, what I can tell you is: at the time, I did my homework (as limited as my knowledge was) and the decisions made were right.  I got a second opinion every time, but we were a step behind… no matter. I hope that you are reading this and keep it on the back of your mind in case that you know someone in a similar situation so that you can advice/guide them so that they do not have to second guess their decisions.

I am now a week into the trial and what I have not explained to you (all of you) yet is that on my scan last week, my brain still shows clear of cancer but my body lights up like a Christmas Tree.  At least I am in tune with the holiday.  But seriously, the cancer has spread to my good lung and my good adrenal gland.  At the request of the doctor, I have stopped all the alternative medicine until we see the effects of the new treatment.  It will not cure me but the success will be measured after 8 weeks to see if it has stopped the cancer from spreading and growing.

So we pray for that, yes 'you and me' pray because it is the one thing that no one can tell me to stop. 

The other night I went to a service at Michelle’s (my daughter) church where the speaker was a very interesting man.  He told us how he came about knowing Jesus… anyway, during the service the pastor’s wife wrapped her arms around me and prayed, then at the end of the service we went up to the speaker who is also known for healing and told him that I had cancer and was terminal and would like for him and his wife to pray for me.  The wife looked me in the eye and said ‘you are not terminal, your cancer is’ and they prayed.  It was amazing.  It reminded me of Randy when he tells me ‘don’t let your body participate with the cancer’. 

So the lesson for the day, ALWAYS have a second opinion, if it does not sound right is because it isn’t so find the right answer.  And believe, believe in God, Jesus and yourself because is the one thing that no one can take away and it sure feel good.

Love yah,

ME

Merry Christmas and wishing US all a much better year in 2012

This is the time of the year when most people send out Christmas cards wishing family and friends ‘Good Tidings and a Happy New Year’. Some people (like me) usually even write a bit or a lot about the events of the past year.  We believe that Luisa’s (my) blog has done that so we will not bore you any further but would like to highlight the blessings that we received in 2011.

Michael graduated from College with a degree in Japanese and he is now allowed to come to Oklahoma and be with us until the court case is settled. (Next Court date is January 13^th).

Michelle gave birth to an Angel named Magnolia Love (Maggie).  This little bundle of joy had a successful open heart surgery and has brought so much joy to us and everyone who sees her.
Michelle and Kevin are of course doing okay but now they play second fiddle to Maggie so all I can say is that Michelle is taking a sabbatical from teaching to care for Maggie and Kevin is rocking in college.
Luisa (me) started a clinical trial at MD Anderson for Non-Small Cell Lung Cancer (NSCLC).  This trial offers the opportunity to have a bit more time with y’all.
Patrick is the pillar of the family, we are blessed that he is still standing strong supporting and loving all of us through our ups and downs.
Other honorable mentions are my Mom (Betty) who has cancer but is still living life and loving Maggie and my mother-in-law (Louise) who is still with us and continues to laugh and smile.
And last but not least for the dog lover… Cosmo is doing fine and loving Maggie too.

There is more, some good and some not so good which you can read up on the blog http://luisajones-parrakeating.blogspot.com/ but for now that was a highlight of the most important events of the year, what I call my miracles.

So with that, from our family to yours, we want to wish you a Merry Christmas and that next year brings you lots and lots of blessings.

XOXOXOX

La familia Keating

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

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

Anticipation? No more

Anticipation?  NO more

They ended up doing a CT scan of the brain and all is clear… and there is a brain for those of you that were wondering, but ‘no abnormal enhancing lesions’… thank you GOD

Anticipation?

How can you control something like this?  I normally do not suffer from headaches but for the past two months I have had them off and on.  Is it the change of pressure in the air?  Or Is it the cancer traveling along the way?  Unlike some people, I like to know so we scheduled an MRI of the brain that will tell us.  If it is cancer then halt all treatment and regroup and if it is not then I will continue for the fight of my life.

Anticipation?  MRI scheduled for today, my life depends on it, well not really but still couldn’t sleep got up twice to eat and check facebook, I could even hear my little bitty dog snore in his kennel and the big guy too.

Anticipation?  Got up before the alarm went off, took a quick shower, took all my morning pills which are a lot, Pat even made me coffee (hmm?) and off I went to the hospital for my 7:00 am appointment. 

Anticipation? Fill out paperwork, sign then the kid from before comes out, not sure I like this as he has pocked me before for the contrast and bruised the heck out of my arm but oh well, maybe he has learned in the past year or so.

Anticipation?  First set is without contrast, lay here, head here, ear plugs, starts to roll me in the machine…  I say ‘By the way, just to make sure you know I have a port on my right upper chest and boob expanders’… as indicated in the many pages filled out and signed a few minutes ago.

CRASH, OOOps, no can do, can’t do an MRI with expanders; well I know this but was under the impression that because they were so far away from the brain that it would be okay.

So, here I am at home with my empty hands, no sleep, early wakeup, even some makeup, no breakfast (will take care of that soon) and no way now to make a solid decision.  No matter, I am convinced that I do not have cancer in the brain as I have not had any headaches in a week or so and if it was a tumor; they would not come and go, so there.  No worries.

I will now go on with my day, my very long day.

Love y’all,

ME

PS. And because the day is crap, here is a picture to cheer us up.

Platelets, Michael, Michelle, Daniela/Barbara, Astrid Salazar/me and mammogram

So this message will be a mix, a long mix maybe but since I have been up since 3 am and all these thoughts were coming to mind I decided to write about it.

Platelets, as of last Monday mine were only 38, the normal is starting at 150 and for chemo you need 90 maybe but for sure 100 (these number are in the thousands so add 3 zeros to it).  The nurses and doctor said that there is nothing we can do, if it gets too low then I would need transfusion, they also said that platelets regenerate every 3 days so maybe I would have more in a few days.  I do not like it when someone says ‘no’ so I went on the internet and realized another thing I do not like is when people have answers to your question but they want you to pay, buy their medicine, or buy their book; luckily I found two sites that gave me the same answer, to increase your platelets you must take extra vitamin C and Papaya leaf extract.  Well vitamin C is not a problem but finding papaya leaves in Oklahoma? I had papaya enzyme which by the way it is a natural help for heart burn, doesn’t cure whatever the problem is but it sure helps when you have acid indigestion and you can take as many as you want…  good for pregnant woman and other people with problems in their digestion.  Back to platelets, so Monday I started the extra C and papaya enzyme.  By Wednesday my platelets were up to 58, a bit more than 50% but not enough so I went to my local health food store ‘Dawson’s’ I found a Papaya Leaf Tea.  Woohoo.  Came home and made 3 tea infusions on Wednesday, 5 on Thursday and one Friday before my blood test.  The result?  101. Double Woohoo.  The nurses think that time did it but I know better.  So for now, I will add the papaya tea infusion to my list of medicines.  Spread the word.  Also know that Randy ‘My Energy Doktor’ said all ‘P’s’ are good for you, plums, peaches, pears and now papaya… this does not work in Spanish but I am in the USA and it works in English.

Michael, for those that are friends with him in facebook, you must have read his latest note by now.  Michael is by heart a poet and a writer.  He is an excellent writer that writes with manly emotions (yes, there are men that do have emotions) unlike Michelle and I who write with girly emotions which turns some guys off…  By the way, male friends, please don’t give up on my blogs, continue to read, it might just teach you to be more caring and understanding of the beautiful women around you like your mother, wife, sister, daughter, niece or even neighbor.

Anyway back to Michaels note, it was intense, heartbreaking and beautiful but there are two things I would like to mention, one is ‘Someday hopefully soon you and others like you might come to the agreement that your Power of the Universe is My God and that he is good.  You can get mad at him at times but in the end, do not stay mad too long as it is not healthy.  And maybe, just maybe your situation will not be resolved until you come this realization.’  The second thing I want to say is about your comment on burning the AA book, keep in mind that it has helped others, not all but enough to say that it does work for some so before you do something drastic, find a person that might learn from that book… just saying and also saying I LOVE U more than Life.

Now to Michelle, Oh before we do that, for my earthly angel friends, please continue to pray for my dear Michael.  Okay onto Michelle, so not too long after Michael wrote his note, Michelle wrote a lovely message in her blog, you can go to leachlove.blogspot.com or click on leachlove located on the upper right hand corner of my blog.  Anyway, she too wrote ‘Processing’ from the heart and it is about her daughter, but mostly about me and my current status.  So to Michelle and others I want to reiterate ‘My dearest Michelle, first I want to say that this is one of my favorite pictures of us, we both look so happy and alive. My answer to the question "What's it like knowing that you're going to die?", 'I don't believe in witches but that they fly they fly' basically I am not done fighting yet and I still believe that there can be another miracle here and there but at the same time, I have started to take care of things so that it will be easier for my family if/when I go.  Another question you have about the ‘answers?’, well you answered that one yourself at the beginning of your blog ‘My family tells it like it is and will always share their opinion whether asked or not’ so you are blessed with 6 aunts and a grandmommy that would be more than happy to answer any questions you might have and do not forget your aunt Sonia.
May God continue to bless you my sweet daughter. MOM’

Daniela Amado is my godchild and her mother Barbara Vettor and I have known each other since we were 2 years old (that is a long time).  Daniela not wanted to accept my status, went on the internet looking for a doctor that specialized in ‘adrenal gland’ cancer not understanding that mine was lung cancer in the adrenal gland.  She found Dr. Hammer from the University of Michigan and had her mother send him an e-mail.  Barbara explained a bit of my history and this doctor wrote back within 15 minutes, can you believe that? He told Barbara that it most likely was not adrenal gland cancer and referred us to the lung cancer team.  Why am writing about this, first to let you know what wonderful angels I have on earth (Daniela and Barbara) and second to let you know that there are doctors out there that do care. 

So with that entry line I will now talk about my latest, I had chemo yesterday as the doctors here think I should at least have two more treatments before accepting that it is NOT working.  I have a brain scan scheduled for Wednesday and hoping that nothing is there.  In the meantime I had contacted MD Anderson, Memorial Sloan-Kettering thanks to Astrid Salazar Paiewonsky who was a student at ‘El Sagrado Corazon’ in Venezuela and she is now an Oncologist in Santo Domingo, another angel on earth who gave me a contact name for MSL, and of course there is Dr. Hammer and the lung team from Michigan.  I had decided that whoever called me back first with an offer of a treatment I would put my hot little ass in an airplane and go to where ever I needed to go, as I said before ‘I am willing to do anything necessary (within moral and legal grounds) to stay alive’.  Last night I got a call back from MD Anderson indicating that I qualify for a trial treatment that does not involve placebo.  The lady said that the trial team will call me next week to set up the initial consultation, so now I continue to wait and see who gives me the first date…  please continue to pray because it helps me.

Mammogram, mammogram, mammogram to my female friends, please make sure you have done yours within the last 12 months…  please, please, please even if you are under 30, call your insurance and make sure that you are covered, if you have a close relative that had breast cancer, by law the insurance has to cover the mammogram.

Love y’all,

ME

October

I wish, oh how I wish that other cancers got the support that breast cancer does…

October is Breast Cancer month and even though my focus is on Lung Cancer I should not forget that I am a Breast Cancer survivor going on two years.  I am not sure if I ever shared the events on how my cancer was discovered but it is important that you know so here it is.

In May of 2007 I went in for a follow-up check to my hysterectomy and at the time I mentioned to my Colorado doctor that I had a pea size lump close to my nipple in my left breast.  She touched it and said it is most likely just a cyst so don’t worry.  I didn’t.

A year later we had moved to Oklahoma and I had a mammogram done in July of 2008.  I did not read the report but my doctor said that all was well and I should have another one the following year.  Had I read the report I might be in a different place today.  The report clearly said ‘a few scattered appearing calcifications noted’.  This doctor did not know I had a pea size lump and I did not know what the report really said so I went on with my life.

By February of 2009 the lump had started to grow, I suspected the worst but hoped for the best and decided in my not so ‘infinite wisdom’ to keep my mouth shut and wait until after we had taken our first and final family trip to Europe.  Pat, Michelle and her husband Kevin, Michael and I went on an unforgettable trip to Ireland and Italy in May/June of 2009.

In July I had a new mammogram done where they identified the tumor, did an MRI and a biopsy to confirm.  I was then diagnosed with ‘Invasive Ductal Carcinoma’ considered stage 3 because it was over an each big.  I then had a PET scan and it showed the tumor as growing but no signs of it in my lymph nodes.  Unfortunately it showed two small spots in my lungs but they were too small to biopsy.

The recommendation was to focus on the breast cancer, have 4 rounds of chemo of Taxotere and Cytoxan and then a mastectomy.  After searching and second opinion I choose to move forward with the 4 rounds of chemo and a double mastectomy…  Funny to think now that my main reason for the double mastectomy was that I did not want to deal with cancer in the future…  Little did I know.

Keep in mind that I had a pretty good attitude, so much so that I chose when to cut my hair, when to shave my head and I had four wigs, a blond, strawberry blond, wine red hair and a brunette with highlights (thanks to Pam), just to be different.

The chemo worked so well that the tumor reduced to less than half and the cancer was changed to stage 2.  Because I am post menopausal I take Femara and will continue to take for 5 years.  My follow-up reports indicate that my breast cancer has not returned therefore making me a two year survivor.

All this to say that my treatment for breast cancer has worked, the advancements made in diagnosing and treating breast cancer are incredible and it is all thanks to the support we give to the cause and the awareness we receive every October.

Lessons learned:

   1.Yearly Mammogram, yearly mammograms, yearly mammograms… can’t cure without a diagnosis

   2. Read your own report…  ALWAYS, and ask many, many questions.

   3. Do not leave any stone unturned.  If they see something, make them investigate.  No one knows if I would be in a better situation if I had forced them to find out what the two spots in my lung were.

   4.Always get a second opinion as there are so many options out there.

   5.  Stop smoking, drink less and eat better

   6.  Support your local Breast Cancer research center

   7.  And don’t forget the mammogram

Love you,

ME

PS. Please share this story with everyone you can as it might save someone’s life

No answer

Sorry, no answer.  The doctor can’t explain how chemo worked with some cells and not others, that is a mystery to all oncologists I suppose.  She is also not convinced that the treatment is not working all together as some tumors responded and some didn’t so her plan is to continue with the current plan for two more treatments, except for the fact that my platelets are dangerously low so chemo is postponed for Friday.

In the meantime, I requested a brain MRI to make sure that part is still working without any cancer cells…  ‘NO WISE REMARKS BECAUSE MY BRAIN USE TO AND STILL WORKS PRETTY GOOD’.

I have also contacted MD Anderson and Sloan Kettering (thanks Astrid Salazar) and see if they would take my case and put me in some experimental treatment that works.

Hard to hear that they can’t even answer if I have 6 months or 18 months both of which are not enough anyway.

So for now, I pray and continue to hope that Michael will be free in December so that we can all be together for Christmas.

God Bless and thanks for all the positive responses sent to me so far…  and I do love you all.

ME

Good news, worst news

I truly dislike when I get good news and then the bad news outweighs the good news.  One other thing that I dislike is watching a movie or show and falling asleep and missing the ending.

So today I will share both of these with you, mostly because I am somewhat upset and need to get it out but here you will read the good news, the worst news and the ending will not come until tomorrow.   If this upsets you then stop reading and catch up tomorrow.

The good news, remember when I mentioned on a July blog ‘Blessings’ that Mary had taken away my tumor from my neck?  Well, after yesterday’s PET scan, it is less than 2 mm and considered a non-issue… but we knew that.

The worst news, remember when I mentioned that among my several tumors, one was over 2 cm in the adrenal gland, well… that one has doubled and multiplied.  Don’t know how 3 tumors respond to the treatment and one goes crazy.

So here comes the missing end of the story, I do not know what I am going to do as my appointment with the oncologist is not until tomorrow.

Is there another treatment for the revel cancer cells?  Chemo, proton?  Should I just forget it and know that I can’t win?  Should I go to one of those clinics in Mexico or Burzynski and use up our retirement money?  Is this really bad or maybe not so bad?

I might not have all the answers by tomorrow but will post whatever I get.

Love y’all

ME


PS. These are Maggie and grandma's toes painted blue

The face of Cancer

Well, I guess that no one wants to be told that they talk too much…  I got little responses, no matter, at least you read it and now you can do with it whatever makes you happy.

Today I want to tell you about what people with cancer look like, which of course the right answer is ‘it depends’.

If the person is going through chemo or radiation and their cancer is advance you probably would not see them unless you are close to the person.  When cancer has consumed you and you add the toxins provided by the treatment then you will definitely not even recognize the person except for their eyes.  Their eyes will always tell you ‘I am here and I love you’.  For these people we pray that their pain goes away.

There are some who have not been consumed by cancer but the treatment of chemo or radiation is making them so sick that you would think they too have an ‘expiration date’.  The more I learn about cancer and various treatments the more I believe that each person has the right to do what is best for them, even if it isn’t the best answer.  There are tons of people who have been treated with chemo and radiation who are alive or lived for many years, so I am not saying it does not work; it just does not work for everybody.

There are some that are going through treatment like me and you can’t tell that I am sick unless you come to my house during the 10+ days from chemo.  But all in all, chemo does not affect me in a real bad way.  Radiation is another story as I believe that radiation is what made my tumors spread but again that is a story for another day.

There are those who have cancer (like my mother) who will not undergo any treatment and look great.  My mother even laughs when she answers ‘I’m fine, I just have cancer but I am fine’.

Finally there are those who choose alternative and unfortunately I have not come across any of these people so I can’t say too much.  But do hope that they look and feel great as my hope is to only do alternative when the time is right.

The reason that I am writing this, is for you to know that sometimes you run across a person in the grocery store, or the mall or just out and about that looks like something does not fit, so before you go laughing or judging, stop and think what that person might be going through and say a quick prayer.

The other day I had to go to Target so I put my mask on as it was within my 10 days from chemo and I was already coming down with a cold.  I wanted to go in and out but as I went down the aisle, the lady in front of me stopped to chat with a lady coming from the other direction.  I waited for 10 seconds and said ‘excuse me’, as one of them started to barely move the other mouthed off ‘you have a problem with people talking?’… Well, my response was calculated and said ‘No, I actually love talking, but usually I enjoy it when the person that I am talking with is considerate of others.  My friends are usually not this rude’ and again as I moved away, one laughed and said ‘what is up with that mask, does she think she is a superhero?’  And once again I turned and said, ‘No, I have cancer and can’t afford to catch your germs.  Would you like to trade places?’  It was at this time that the look in her face was, open earth and swallow me.

So, be considerate of others as you do not know what they are going through.

Love y’all,

ME

Do you talk too much?

Are you sure?  Well, I bet you do.  Do you know how annoying it is to be at a gathering and have someone not shut up?  It bothers me and reminds me that I do not want to be like that person.  Then before I know it, I find myself talking away.  We need to be more kind to others and ourselves and take turns, my goodness.

Honestly, the worst part is that most of the time the people that do not shut up, all they do is talk about themselves or things no one cares about.  And you know why I think it is so annoying? because it takes away our chance to talk about ourselves and our silly stories.

Even worst are those that interrupt you… just when you finally got a chance to say something, they interrupt because their version is better than yours or whatEver….

When my friend Connie was here, this worked out pretty good because she was here for over a week, so in the beginning either her or I would take the center stage on a story or a subject… boring or not, we let each other talk and by the time she left we had covered almost everything imaginable, including solving other people’s problems. 

But when you only see someone for a cocktail, a dinner or a party, there isn’t enough time for center stage… and why does it have to be I, me, my… 

One thing I am starting to exercise is to use a third person even if it was me.  For example, ‘there was an article in the paper the other day that said that bla bla bla’.  There was no article and it was my opinion but it is better received when is not all about what I think or say.  Don’t you think?

So now, do you talk too much?  Do you annoy people with your conversation?  Some people are naturally boring and others naturally entertaining.  When I tell a story or describe an event I try to make it exciting even when it isn’t.  Do you consider your life exciting?  To get to where we are, we all had adventures along the way.  So paint me a pretty picture, make it colorful and ‘tada’, you have my attention.

Anyway I am not sure why I felt the need to write about this as it has nothing to do with cancer, or the weekend but in a show last night the one guy wouldn’t shut up and then this message came to my head.

So in summary, don’t take the center stage for the whole evening, don’t just talk about yourself, make any topic colorful… or you will watch people walking away from you.  Get the message?

Love y’all,

ME

Wish list?

Or check list, or Bucket list, or things I want to do before????  It does not matter what you call it but they are pretty popular now.  I remember as a child like around 12 years old, all I wanted was to someday get married and have children.  It was that simple, I am sure that on a daily basis I had different wishes, like maybe having a friend visit, or maybe just not have homework but I remember the wanting to get married.

That I did and did well and also had children and did great, then what…  Again on a daily basis you wish for your family to have good health, for a good day, or a promotion or more money but those are not the same as the BIG wishes.

Unfortunately, the big ones come and go as life moves on and most of the times we do not do anything about it.  Now going back to an old post, if you can make it happen, then make your dream come true sooner rather than later, but if you can’t control it, then stay wishing!!!!!

Ummm, nope, I have a problem with that.  The best thing you can do is let your love ones know…

Ha, ha, ha

So when I was first diagnosed with breast cancer, my sister Ligia asked if I had a wish list of things to do before I died, not that she or I believed I would die any time soon; in either case I said I would love to go to Vegas and see a show some day and maybe go to a nice place to eat and drink and walk the strip…  Well, this past weekend, my dear sister took me to Vegas and we did all of that and more.  I even did IN-N-OUT burger.  Thanks Ligia for making it happen, thanks Paul Z for the Le Reve tickets, thanks Paul (Ligia’s old boss) for the IN-N-OUT burger and Chandelier drinks at the Cosmopolitan, thanks Thor and Megna+husband (Ligia’s current boss and co-worker) for Dinner.  You all made it possible for me to ‘check’ that line on the wish list…  Now what?

Okay, to be honest, here is where it gets tricky as I no longer have items that I can make happen in my wish list and it will take for the most part, an act of God for them to come true. 

I would love for my son to be free and become a productive member or society

I would love for Maggie’s Corpus Callosum to appear and for her grow up to be a beautiful healthy girl

I would love for cancer to leave my family alone

I would love someday to go back to Venezuela and see my friends (all of them)

I would love to either go visit or be visited by friends every month

I would love to be loved so much by so many 

You are reading this and saying, gosh, this is not possible and you can’t help me, but that is why I said two things above ‘let your love ones know your wishes’ and ‘Act of God’ so please let us all repeat my wishes together every day you can, every time you can and they will come true as the power is in the numbers…  Or you can even sing it if you can find a tune… as it is written in this one little book ‘Mat 18:20 For where two or three are gathered together in my name, there am I in the midst of them.’

Thanks and Love y’all,

ME