Monday, May 2, 2016

Getting Older is a Privilege; Not a Punishment!!

My parents; the ones who gave me life!
Today is my 57th birthday; it is the first time that I have spent my birthday in tears. My tears are happy and sad tears; the flood-gates opened last night, shortly after midnight. My online crochet buddy wished me a Happy Birthday........the only other person that used to wish me Happy Birthday, precisely at midnight was my mother; my friend and I decided that she was my mother's messenger this year.

It never really occurred to me that I would miss that call, as much as I did. My mother would always say, "Happy Birthday my sweet, precious baby girl, X amount of years ago you came into my life, and you have filled my heart with joy ever since. I love you so much, you know that I do, right?"
Of course, I would always say, "Yes, Mom, I know you love me and I love you, too. Thank you for bringing me into this world, you deserve the birthday wishes today; you are the one that did all of the work!" So, so sweet and caring she always was; so needless to say, I am missing her terribly, today.

That emotional start to my birthday did not end; waking to all of the sweet birthday wishes from so, so many just continued my journey down the happy, sappy Birthday Road. The Internet may be a lot of things, some good, some bad,  but one special thing that it is, is a connection to so very many, that you would otherwise never be able to connect to. I cannot thank each and every one of you well wishers enough, for all of the kind words and wishes.


My Kiddos!
That being said, I look back at all of the years I dreaded "getting older" and I realize how very foolish I was; growing old is not a punishment, it is a privilege. A privilege that I no longer wish, did not arrive so quickly, year after year. Growing old is the greatest gift EVER!

Do I wish that my body still performed as my mind thinks it should? Hell Yeah!! Do I wish that I could take my life lessons back to a younger me and avoid some of the mistakes that I made? Sometimes. Do I wish that I could start all over, as a child, a teenager or a young adult? Heck NO!

What I do wish for, is that I will continue to grow older and wiser, and that I will be around for a very, very long time; cherishing my family, my friends and my life with every single bit of gusto that I can muster.

The Grands and Hubs!
That I will be able to continue to share my experience of living with a chronic cancer to all that I am able, and that I can continue to share my joy of living, to all I meet.

From the bottom of my heart, I thank each and every single person that enriches my life, not only today, my birthday, but every single day in between, too!

Today, is a GREAT DAY; tears and all!!



Son, Daughter  in  Love and Fam!!

Saturday, April 2, 2016

Yes, I am Going to Try Plexus!

Once upon a time, a long time ago, I was an extremely successful representative in a multi level company called ACN. I loved the company, the compensation plan and the services that they offered.

This structured MLM was, in my opinion, brilliant! The problem with MLM, once again in my opinion, is that the general population does not have belief in this type of business and does not have belief in their own abilities. Sad but true, most are more willing to work for some one else, rather than rely upon their own selves.

What many people do not realize is that nearly all businesses run in an MLM manner; you have the owner, or owners of the company and the "jobs" that fall in line from the top down; each and every position, an essential part of the structure, of the company.

The difference is with a "job" you are paid for the work that you do, either hourly or with a salary and it is guaranteed. It does not matter if your "work" produces a $10 profit for the company, or a $10,000 profit for the company, you still get paid the same amount. Unless you own the business there will always be a ladder of people from the bottom to the top; just like MLM.

In an MLM situation, your destiny lies in your own hands; you will only be successful if you help others become successful, too. You are not guranteed your hourly wage; you are in charge of your own destiny and your own pay check; the sky is the limit, and you do not have to "wait" to be promoted. For many that is much to risky, and too scary to ever entertain.

I find it sad that humans do not believe more in themselves and truly believe that instead of being a rung on a ladder, they can actually BE the ladder, climbing to the top of their own empire.

All of that being said, I am taking a leap into the world of Plexus; not necessarily as a business opportunity (shame on me) but in hopes of regaining some of my pre-CML energy and overall health.

I have been observing the testimonials of so many people that I personally know for the past two years, with and without chronic mylogenous leukemia, and have marveled at how convinced they are that their overall health, well being and energy levels have improved on the Plexus products; I no longer wish to be a skeptic.

What do I have to lose? If it works, then I benefit by feeling more like my old self, if it does not, then I am still wearing the same shoes, as I was wearing before I gave it a shot!

And hey, if I DO lose a few of those TKI pounds, then there is an extra added bonus.

I promise not to become one of those annoying MLM Facebook friends that are constantly begging their friends to join them in a better lifestyle, but if you have any questions, feel free to ask!

I shall post my progress on a weekly basis; feel free to read it, or delete it!
Off to drink my very first "Pink Drink"!

By the way, my husband is going to join me on this journey!

Just thought I should keep you posted!

Tuesday, March 15, 2016

Sprycel Dosing: On and Off Days

Since many have asked, I thought it prudent to explain my treatment for chronic mylogenous leukemia.

I was diagnosed with CML on Feb. 9th, 2011, a little over five years ago. After much research and doctor shopping, I selected an oncologist that not only is a CML specialist, but connected in the realm of CML research, as well. For me, I wanted some one at the top of the CML food chain, as I knew that I would have CML, for the rest of my life, and I plan on being around a very long time; I still travel from Boise, Idaho to Los Angeles, Ca. to see him.

That being said, my Sprycel journey has been an up and down journey, full of peaks and valleys. The manner in which my treatment is established correlates directly to my PCR results and the common Sprycel side effect; pleural effusion. During the past three years, my PCR has ranged from .0000% to .432% and I have had periods of pleural effusion, along with several bouts of double pleural effusion.

A common question that often arises is, "Since you suffer from pleural effusion, why not just change TKI's?" I have often had this very same discussion with my oncologist, and my reasons are quite simple, to me, although maybe not very logical to others. I prefer to take a TKI that does not have a Black Box Warning, and there "seem" to be so many people that suffer greatly, on Gleevec, that I am reluctant to take that risk, until I am left with no other choice.

As far as the newer TKI's are concern, my oncologist prefers to monitor their use, for a while longer, before leaping to one of them.

This being said, we are constantly adjusting my medication regimen to avoid pleural effusion, have an acceptable PCR, and as few other side effects as possible,in order to give me the best quality of life that we can.

This results in different doses of Sprycel, in varying frequency, throughout the week. My best PCR results seem to be when I take 140 mg, six days a week, however, I always develop PE after about six months. At that point, I take a few days off, the PE resolves and I resume my treatment.

Currently I am taking 140 mg, five days a week; down from six days per week for the past six months. My PCR will be tested next month to see the result of this schedule.

My oncologist truly believes that my body needs the break of one or two days a week, to allow it to recover and rejuvenate from these potent drugs. He feels that this is the best choice for me, although others believe that you should never skip a day; he believes that not taking this break may lead to toxcicity, in my body. Thus far, for the past five years, my PCR has not risen above .432, which he feels is an acceptable PCR. My latest PCR was .06, after six months on 140 mg, six days per week.

Unfortuantely, the PE always creeps in at this dose, and a reduction in days, always follows. I am always disappointed when this happens and I keep hoping that some day, my body will adjust to this dose, and allow me to remain on it, as I have my best results during this period.

I hope that that answers any of the questions that you may have, on the "why" I have "No Sprycel" days on my calendar, and assures you that these days are at the recommendation of my oncologist; please do not make any changes to your treatment based on any thing that I say, but please feel free to discuss my situation, and treatment,  with your own oncologist; if you wish.

I implore every single person that lives with CML to find the best possible CML Specialist that you can; one that will answer all of your questions, spend time discussing your frustrations and fears, and be willing to discuss your treatment, to find figure out what is best for YOU! Not just follow protocol "because", but to treat your CML, specific to you.



Bricks for the Brave!!