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