~Verve~

Aloha!

I just briefly wanted to post to keep you up-to-date. I have been taking my antibiotics... and have started to double up on my pain meds... I'm not sure what is wrong ~ but without a doubt ~ the increasing pain is causing problems. I haven't gotten much sleep in the past two nights.
I have been waiting two days for an appointment with my oncologist, with whom, I will see later this afternoon. I am hoping to find some answers ~ and get this resolved soon ~ I don't know what we would do without modern medicine!!! Oxycodone ~ my new preferred drug of choice! lol...

I'm a tough one, so, albeit to say ~ I'm hanging in there.

I have been reading the book "Three Cups of Tea" ~ which was sent to me by my friend Greg. It is very inspirational, and my lucid dreams keep revolving around the idea and thought of building hospice centers in areas more suitable for end-of-life...
I'm trying to be somewhat cautious of how I phrase and or paraphrase my thoughts... I guess, basically, what I am thinking about... is a greater vision ~ one where hospice patients may feel more at home and one with themselves an nature.
I know, that I would prefer to die lying in a bed that overlooked the ocean; and I am aware, that many other's would too. I am sure, that perhaps other's would like to overlook mountains or fields...
I'm not sure why I am envisioning such buildings... or entertaining such thoughts; however, I continue to believe. Believe, that anything is possible.
Hospice centers which encompass and embody a greater sense of life ~

Wonderful! :)

I am still waiting to hear from the NIH. At this point, I am beginning to welcome the idea of treatment... I will be sure to post asap with all news. To all who are battling the fight and to all who support those who do ~ God Speed.

For my daughter

I have no captions for my photo post or words of wisdom...
this evening. I have honestly have alot on my mind. In all sincerity ~ it is becoming quit an emotional one. The onset of additional pain in my back, pelvis, and groin; are becoming an acute awarenss of the "surrealism" which superceeds.
I know, that many people live well beyond their expected years, due to cancer treatments. If it weren't for this thought... I honestly wouldn't be taking the chance with all these toxic treatments.
I'm starting to wonder, if God meant for us to have the choice, to manipulate our lives in such a manner. I am aware, that without a doubt, had it not been for modern medical advancements, I wouldn't be here today... wrighting to you... and audience ~ which has shown such great compassion.
I just finished reading Dr. Randy Pausch's book: The Last Lecture ~ and to be bluntly honest, I believe that the last two chapters held more value and significance to me, than any other; than any other message that may have been given directly or indirectly, intentionally or not.
Final Remarks can be powerful. So, let me start by borrowing some quotes: "to that end, I want my kids to know that my memories of them fill my head" ~ as my daughter is fully aware of the nature of my condition ~ it must be rough and difficult ~ especially in the teenage years. I am well aware, that our culture is very different from that of many. We do not live impoverished or malnuourished. However, I do believe that one universal is: the love of family. I can only hope, that well beyond and into the future years, Jennifer will grow to know, that even though... she is having difficulty now, dealing with all these emotions and feelings... that she was always and will forever be loved. It can't be put any better or simplier than as stated by Randy Pausch: "I want them to know that I will love them for as lonfg as they live. I will."
The memories that I will cheerish the most will most definately be the times when we took trips in the car ~ changing radio stations, until we both agreed upon a tune. Often, because I was a "victim" of the eighties, I would empose these upon her, and, in return, she would impose the latest music upon me.
I simply loved listening to hear sing along with the radio. She was radiant. She sang and recited each and every tune with a gracefullness, which daunts me, to this day.
While we were on vacation, I took her to a karaoke tiki bar ~ she finally had the opportunity to grace me with a song entitled: Unwanted, by Natashia Beidingfield. It was appropriate for her, at that particular moment in time. Teenager find meaning ~ and reflection in the words of songs... much like poets, whose passion fills the page with prose.
That evening... while she was on stage... the air was warm, the breeze was light, the moom was bright, the ocean was soft, and, my daughter, was the shinning star.
She will always be my star. I hope that she continue to sing... and enlighten many... in the years to come... wether it be on short trips to the mall with friends or long trips with family on vacation, to perhaps even.. greater events in future with husband and children.
Now, I am, by no means... giving up on life... but, I have been reading alot of articles that are meant as a means for cancer patients to help themselves express themselves... while they still can.
I have already promised my daughter, that I plan on fighting this... so that I may be around for her, for a very long time. It is very difficult for me, to think, much like Dr. Pausch said that when she is older, I might not be around. "But a bigger part of me grieves for them." That I might not be here to be a bigger part of her life in the future.
Nobody knows for certain what tommorrow may bring, for any of us. So, it is with today ~ the present moment ~ the here and now ~ that I say: I will forever Love You. You will always be wanted, needed, and loved, by me.

"Have Fun"

WE are all "one of a kind"!

I was just sitting here, after finding a new website entitled: Im too Young For Cancer, thinking about choices that we have in life.

The one that happened to stand out the most was engraved in a coconut cup that I had bought while on vacation. It simply stated: Have Fun.

Many of us take life way too seriously. We don't take the time necessary to "de-compress" from the day and the events in our lives... and truly learn to live and enjoy life ~ for what it is. We are enwrapped and entangled in our daily pursuits and endeveaors. Today is never promised to anyone and tommorrow is always a blessing.

We are all unique in some peculiar sort of way. Use this, for your life's full-fillment of happiness, not merely; attainment.

I've been rousing through many websites today, trying to begin to place things in order in the dreeded case, that my cancer continues to grow and spread. Basically, I believe it is called: hospice care. I am trying to make my wished known verbally to my family and friends ~ in any event.
I as well, have a greater mission to accomplish... because, I believe that the power of: you should encompass all... I will continue to advocate my thoughts about end of life, rights. Our rights to choose... and make dreams come true.
What cancer patient honestly wants to die either in a hospital bed or enclosed in their home? ~ Shouldn't we have other choices availible to us? ~ Shouldn't we be able to decide where we would like to be ~ upon our death? Simply because we are aware that our time may be limited, we should take steps to allow our uniqueness to shine through.
I'm sure, that for many... I will inevitably, continue to hear about the "selfishness" aspect of this thought... but, I must say... given all that we as cancer patient's face and endure... it's not that I believe it's an entitlement, so much as a request... to die in peace ~ through happiness and fun.

Introduction to the TIL

"Curiosity is an intregal part of life..."


I know that many may be unaware of what the TIL treatment is or what it stands for ~ So, I thought that I would post the "Description of Research Study" from the NIH. I requested it, for my benefit as well... because, I do believe that curiosity is an intregal part of life. It is a necessity when dealing with cancer treatments. There are options availible on a limited basis ~ and determined by many factors: the stage of our disease, prior treatment hisotry, blood markers, and the list goes on and on...
This week will none-the-less... be a long one. Waiting and hoping, once again... that my cells are "receptive" in the lab. It is yet, another vital component and detremental factor to link me to the availibility of the treatment.
So, here's "hoping" ~ that my cells grow in mass... the "gazzilions" :) as many on the mpip board have cheered!!! and that they actively fight the beast in the lab!!!!

Description of Research Study: (provided by NIH)
Your doctor has told you that you have been diagnosed with melanoma and there is no treatment availible at this time that has been shown to cure your melanoma. We invite you to take part in this research study that is trying to find effective treatments for patients with melanoma. To participate in this study you must have a specific blood type known as HLA-AO201 and you will have had to been treated with interleukin 2 and had to have progressive disease to be eligible for this study.
The purpose of this study is to determine whether we can treat melanoma by taking cells from your tumor called tumor infiltrating lymphocytes (TIL) or cells from your blood called peripheral blood lymphocytes (PBL), then put an anti-melanoma protein receptor in the cells with gene therapy, and growing them in the lab in large numbers to then give the cells back to the patient. We will test whether this experimental regiment can cause your tumor to shrink, as well as test the safety of this and the effects on the immune system.
Before giving the cells back to you we will suppress (make it less able to fight) your immune system with two chemotherapy in order to create room for your cells and to prevent the immune system cells from causing a negative effect on the tumor-fighting cells.(sometimes, we are unable to successfuly gow the tumor fighting cells needed for this procedure...if your TIL or PBL do not grow..you will not be able to recieve the cell infusion...) Although, these gene-modified cells can destroy tumor cells in the test tube, this has only recently been done in humans...
If, your cells grow and you are eligible we will begin a chemotherapy regimen followd by giving you back your cells through a small plastic catheter that is put into your vein in your arm or neck, if the cells need to be given through a larger vein either in your upper chest or in your neck. You will be administered to the hospital (the NIH, in Bethesda, MD) For seven days prior to receiving your cells you will be given two chemotherapy medicines to suppress your immune system so the cells we give you can work without any interference from the cells in your immune system.
The two chemo medicines are called: cyclophosphamide and fludarabine. The cyclo..will be given into your IV over 1 hour for two days and the fludarabine will be given into your IV for 30 minutes every day for the fie days following the cyclo...
All patients will be given the cells through their IV over 20-30 minutes one to four days after the last dose of chemo. Within 24 hours after your cell infusion you will be given high dose aldesleukin(also called interleukin 2). It will be given as a 15 minute infusion every 8 hours for up to five days after the cell infusion.
(we will watch you closely during this entir time for any side effects of this regimen-)
Side Effects: The risks and discomforts of this research study can be significant and participation is only offered to patient-volunteers with metastatic disease who have not responded to standard treatments for their cancer. It is possible, but extremely unlikely, that this experimental treatment may cause your death. Other side effects:
Chemo:
significant decrease in the number of normal white blood cells in your body for about 2-4 weeks, increasing the risk of infection
significant decrease in the number of platelets (blood clotting cells) increasing the risk of bleeding
significant decrease in the red cells in your blood, makin you feel tired
nauseas and vomitting
hair loss
loss of fertitily
Fludarabine:
can frequently cause sore mouth, diarrehea, rashes, fatigue (including extreme fatigue) muscle or joint aches, and loss of appetite. An extremely rare effect: blindness
Cyclophospamide: may cause heart damage, lung damage, extreme fatigue, or kidney damage. Bladder irritation that cause bleeding.
Supportive medicines: bone pain, adult respiratory distress, fever, skin rash with itching, Stevens Johnson Syndrome, which can be fatal, (if you get a rash..notify your Doc immediately), delirium, tremors, coma, emotional changes, abnormal eegs, stomach upset headache, sweating, blood in urine, low blood pressure, low platelet count, constipation, and in rare cases uremic syndrome or clotting abnormalitites, infection of a virus which causes a type of cancer or precancerous condition that grows in the brain and spinal cord.

ok...
the list goes on and on... (whew... I think that's enough for now! more than I cared to know... but glad... that I was curious... I can at least now inform my caregivers what signs/symptoms to look for)

After your last dose of IL-2 you will recover in the hospital from the side effects until your blood counts recover and you feel well enough to go home. This usually take 5-10 days aftery your last dose of IL-2. You will continue to receive the G-CSF (filgrastim) until your blood counts recover. You will need to continue to take the Bactrim for at least 6 months.
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If I am accepted into this protocol trial ~ my mother has informed me, that she will be by my side throughout treatment... and some of my family members will try and keep up my blogsite the best they can... (they first need an introductory lesson: 101 "blog-posting" LOL)
My mother has asked me, if I will shave my hair before treatment... I'm not sure if I will.. however, I am considering cutting the majority of it off and donating it ~ to a good cause/organization ~ any suggestions would greatly be appreciated. She has also asked, if I wanted her to shave her head too?... she said matter-of-factly... It brought/brings tears to my eyes... to think of the generous offer... and it would absolutely mean alot to me. I told her... not to expect me to hold back the tears on this one! I am strong... yet, there is a certain aspect of the human element at hand.
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So, once again.. hang on tight ~ with me. We are waiting the results of the growth of my tumour cells...
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I plan on fighting this damn beast with all I've got ~
I've got a rainbow and the end awaiting me! :) My Tropical Oasis... home away from home... and alot of Life to LIVE!!!
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As ALWAYS... I Thank YOU ~ my reader's for your continued private/personal thoughts and messages of warmth, love, and prayer ~ it truly is a healing aide. I continue to believe in the power that other's have ~ to make a difference ~ in the lives of another!
Stay Strong ~ Live Long ~ and Enjoy Life (the simpliest of pleasures are often the ones are severely overlooked) Don't forget ~ enjoy each other... find good in all.

Tides of Time...

Before I begin, I would like to let you know, that I will continue to post photo's from our much needed trip ~ away... it was extremely relaxing, beautiful, warm, and peaceful. I know, without a doubt, where my heart lies. I found a beautiful beach on the last day of my stay ~ about an hour south of Cocoa ~ which had some very nice and friendly resident's. The ocean was a marvel; beautiful shades of aqua and blue, with a crisp clearness. We found some of the best seashells! Brilliant colors and textures ~ and some awesome small conk shells! Without a doubt, this is where my heart of all heart lies.
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Alright ~ now, to post the news from today's visit with the NIH. I am still trying to absorb it all... the "shock and awe" ~ stage...

To begin, there is some activity in my upper thigh where my last biopsy was performed. However, it is hard to determine ~ because the sample/tissue may not have been a good one ~ and it may be lighting up due to scar tissue...

Next ~ the lump that I mentioned in my groin ~ which has become relatively large, and which is causing me some extreme pain ~ is indeed Melanoma. It is in the lymph nodes within the lump.

And finally ~ the 7mm of tumour that was left in my pelvis from the last surgery ~ has definately grown. It has become of some concern... it has grown enough that it is enlarged and entangled around even more arteries/nerves; so that... a) it may not be removed surgically b) it is causing the fluid in that area to push up against my bladder ~ and I now have an infection, which needs to be cleared up with antibiotics ~ asap c)the pressure from the fluid combined with the added new lump ~ is causing the blockage of my lymph nodes and slowing them down ~ which is causing all the swelling in my right leg.

So, what does all this mean? ~ basically ~ Dr. Yang said that the lump isn't a main concern at this time ~ it can be surgically removed, if necessary. However ~ the bigger problem/issues lies within the pelvis. The tumour that has grown and entangled itself even more... which is causing and will continue to cause more problems... needs to be taken care of.
My only option... is the TIL treatment.
The doctor called the lab while I was there... and they are working on growing my tumour cells to see if they will combat active melanoma in the lab setting. He said to give them about 1 week for the results. If, it works... I will be called to come in and do the TIL treatment within the next 3-4 weeks. If not, he will be looking into other alternative's similar to the the TIL.
The TIL is ~ to say the least ~ rough. I was given a packet of info and orally informed of the possible side-effects. I will Definately, loose all of my hair. I will be extremely sick ~ vomitting/nausea, etc... all the good stuff. But, I will be monitered well. There is a possibility of bodily function damage ~ kidney, livers, etc. There is also, a small percentage change that I may have permanenet brain damage. About 1 in 100.
So, there it is.
Basically, as the Dr. stated... if I choose not to do the 3-4 week long intense treatment... the tumours will continue to grow and spread...with the inevitable. This is the best chance and option that I have at the moment.
Am I scared?
Scared to death.
Absolutely.
Do I want to loose my hair?
Absolutely not ~
but, like the doc said: "it will grow back"
and the possibility of further complications/damage... well, that outweighs the alternative ~
I do agree with the doc...
deep down... I know, that the situation I am in... is not good. not good at all.

So, for now... I am going to pump in the antibiotics... and take the pain meds as needed... my immune system needs to be up and ready...
before they wipe it all out!!!

I've got 3-4 weeks to try and take care of some personal issues and prepare...

(I most definately need to get a cd of the ocean to take with me during treatments!)

quick post...update

Good Day All!

I just wanted to quickly post ~ for many of you who follow ~

We made the trip back from Florida ~ we had a wonderful time!!!
We are now at the NIH in Bethesda, MD.
Yesterday was such a long day...
we got up early to make the drive from Florida to MD ~ and then I had my Mri and Ct scan ~
I have been having increased pain in my groin/pelvis from a lump that continues to grow...
this will all be checked today.
I will as well be getting the results from my scans...
I spoke with my new doctor ~ with whom I gave my recent pet disk scan and pathology report to ~ I asked her to clarify... and she did confirm that there is some melanoma activity in my inner thigh as well as in my pelvis...
I will have all the current results/info today...
so, hang in tight.. as I am.
It is, once again... time to get back to "reality" ~
in the so-called world of Melanoma.

Anyone who is new... who may be reading... I would be more than willing to answer/share anything...
don't hesitate to ask.
You may send private messages to Summerbead69@yahoo.com

PS ~ I continue to wish Simon in England the best~ I send out my positive thoughts for recovery.

I will post ASAP with all results.

Have a Wonderful Day :)

Chance Encounter...

It was an absolutely beautiful day ~ and one, which; I will never soon forget.

I had ventured back out on the beach, in the early evening ~ to take in some more of nature's beauty and splendor. I couldn't help but notice one very young girl impaticular. Without a doubt, I knew, in my mind and heart; that she was a cancer patient undergoing chemo treatments.
She was a wonderous beauty, who was enjoying the beach with her family and friends. I watched as she picked up sea shells and even captured a crab, to her amusemument!
Without a doubt; as I have always stated, God works in mysterical ways. Everything, DOES happen for a reason.
I spoke with Lilly's mother for a bit and asked if she would mind that I put her daughter, Lilly's story on my site. She kindly accepted. She will be forwarding her daughter's carebrigde page to me ~ and in turn, I will post it on my site.
My recent venture ~ to try and help terminal cancer patients live their childhood dreams ~ begins here. I told Lilly's mother, that I would try to raise some funds; so that their family may spend the much needed time together ~ as they were, on this very day.
ANY and ALL funds, that will be recieved will go to Lilly's family. However, prayer is always a wonderful support and gift ~ just the same.
It is in The power of: YOU ~ that I believe.
Encounters are never chance. Today, I was graced by the presence of an incredible little girl ~ who was enjoying Life...
God Bless.

A pearilous journey of thoughts...

She sat sheltered by the shadows of the wavering umbrella with nothing more than a minut insight into what lay ahead. Her golden hair glistened with the reflected light. The sun was now setting and the moon appeared as the dawn of daybreak ended. Fine course granuetes of sand were ingrained in the golden girls smooth, silky skin. As her eyes glared; fixed at an unknown point in the horizon where the horizontal ocean meets the the sky, she feel, subcumb and numb to the events which were surround. A wedding party made way, and as calps, chants, and cheers, of happiness came closer, so to, did the tears. The shade could only shelter her sorrow momentarily.
As children laughed, screamed, and played; so to, did all the adults around. But one, in particular, unflinched by humans meanuduring to and fro, had stopped remarkably close to medidate. The golden girl watched with admiration, starring with gentle curiousity. What could this woman, this figure of existance be focused upon?
So, she too, decided to to try to practice a forum of meditation. At the very point where her mind began to rumble and stir, the sky opened and unveiled the slightest hint of the cloudy white moon.
It had taekn her all day, to come to peace with her intermost personal turmoil and the long, jadded walk from the evening before had brought much pain. The lymphatic leg and the previous night's moonlite walk brought about hopes with romantic ferver, which often swallowed and enveloped her. Her longing and desire to share the beauty of nature and life; within love, would be one, that she would continue to silently long for.
Her perilous journey seemed frivolous ~ to many, and even to herself. Her quixotic quest was impervious to all. She didn't feel as though, she were dying ~ all but the contrare. She was supremely alive. She had become one with nature; but uncertainty had set in, as the nature of human relations. Was she merely alone with these thoughts? Had she become more introverted than in her delicate youth?
~These days brought upon many unanswered questionable thoughts~...

Melissa

*I wanted to post this for you to read. Please feel free to contact Melissa or leave any responses for her. Melissa can be reached privately at: dr.doolittle1@sbcglobal.net Thank you soooo much! *

Hi Becky. Read your blog. I hope you will read this.
From: "Melissa"




Hi Becky,I am crying while reading your bio and thinking what an inspiration you are to me. Im feeling guilty that I worry so much about getting a melanoma metastasis while you are facing it yourself. I crave for your attitude and the POWER of YOU. How did you get it???? My brain is my worst enemy and I have been struggling for YEARS to change my thought pattern. I cant seem to get rid of it. No matter how hard I try. I am actually a very postitive person when it comes to everything but myself. I too believe everyone has a purpose in life. I found mine thru having cancer. I am thankful for that. I believe everyone you meet is to teach you something. Is there anything you can teach me??? I am 38. Married and have a toddler. I live life each day as it is my last. I constantly worry about death and dying from cancer. I have nightmares every night. I dont like to talk about the future in fear that I wont be here for it. I hate living this way. Its such a lonely existance........ Every day I am poisoning my body with my toxic thoughts.... I want to be like YOU..... I feel HORRIBLE for asking you for some guidence with what you are going through. I hate whining when someone else is going thru something so much worse than me. I stuff all my emotions and no one really understands the road I have been down. Its been a long one.....not just cancer. I had open chest surgery to remove a mass in my chest 4 years ago which was thought to be melanoma that had spread. It was actually a pre-cancerous mass but the surgery was so hard on my body that I developed Lupus and a blood clotting disorder that causes strokes & heart attacks. I am on immuno-suppressants for the lupus and sometimes I feel really sick. So, I guess I have a lot on my plate which contributes to my fear of dying... I understand that you probably dont have the time to give me some tips. But, maybe you could lead me in the right direction to heal...... I just cant figure out how to do it on my own. Huge hugs,Melissa

*Melissa and I have just begun corresponding. I know, that I recieve many private messages, and I do try to respond to them all. I can only tell you, from the heart, much like, you tell me; how you are feeling at the moment, how I feel in reply. I do believe that we are all here to help each other and one another. Encounters are not chance ~ believe in that and believe in yourself.
As always... Stay Strong... and Live even stronger!

Life is short: Eat Chocolate!

Unbelievable. Unbelieveable, is all I can say! Ok, so, we found out that Florida's Mall had an M & M's store... needless to say... since we have never been to one, or seen one, we were excited and curious to venture off.
I have never seen soooo much chocolate candy. Candy coated in every imaginable color of the rainbow! And, although my all time favorite color is dark blue; I have been having a tendancy to sway to aqua. Hence, the aqua shirt that I wore this evening to the event!
Naturally, I choose an array of my most recent colors ~ dark blue, aqua, red, and brown. I'm not even sure, where or why these four colors have become so significant to me.
Regardless ~ everyday brings about something new.
Today must have been a chocolate day. After the M & M store we ventured off to the Godiva store ~ for my all time favorite chocolate cup filled with red raspberries. Usually, I get these after my flight to the NIH (National Cancer Institute). Since, I will not be flying next week to Md I just couldn't resist ~ it has become my new tradional ritual ~
Next stop... Dylan's candy shop! Everything imaginable can be found in this all in one stop! Upon meandering around, I came across a shirt which simply stated: Life is short: Eat Chocolate!
Wow ~ I couldn't have expressed it any better or simplier. Chocolate. Another of Life's simplier pleasures.
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We are having a wonderful time ~ on vacation and enjoying each other's company. We will be heading back to the beach ~ which, I am sincerely looking forward to. Yes, it is a great feeling... being able to enjoy life.
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I had almost forgot to mention ~ while I was on the boardwalk at the beach several days ago, enjoying an ice-cream, the view, my daughter's company, and the breeze... a middle aged gentleman in a wheelchair made his way over to speak to us. It was obvious that he had some speech impediments, yet; he was very skilled and determined to converse.
He began to express his unhappiness with life ~ and his unfortunate circumstance. He was struck by a drunk driver in his teenage years and his father had passed to cancer. I felt compelled to express my thoughts... and assure him, that life was a blessing.
He continued to tell me, that he was alone and that he had never set foot in the sand. Unimaginable. Simply unimaginable. He was less than ten feet from the sandy beach and shore and had never experienced the sand beneath his feet or the water rushing over his toes.
I had hoped to helped this gentleman... but unfortunately, I was unable. There were, needless to say; many people around. None of whom, offered to aide. I can't say, that I didn't try; because, I did.
At times, I am appauled by behavior; and yes, that includes my own. It truly takes alot to step out of the "character of normalacy" ~ that is to say... societies percieved inhibitions.
The Power of: YOU ~ is a self-emplorement. A self-empowerment, that is meant for the greater good ~ of all.
If you ask me; "normalacy", simply is a state of controlled mind. Going beyond the boundaries... now, that is what I call... an act of kindness and graciousness.
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Find it in The Power of: YOU ~ to make a difference. To go beyond boundaries. (and don't forget: Life is short: Eat Chocolate!)