My Sister...

Good Morning All!

Hello :)

~I wanted to post a photo of my sister & I~ this one was taken several months back. I thought, that perhaps, that it may be nice for many of you to be able to put a name with a face. ( I do believe that my mother is in the background of this pic as well)

I can't imagine that this has become any easier for my family. My sister gladly offered to post on this site as well as the mpip site. I know, that this may all ~ be very difficult ~ to try and put into words ~ to make shape or form ~ of ~ not only for herself ~ but other's as well.

However, it was the thought and effort ~ which touched me the most. This "blogging journal" ~ has become my forum for discussion and thought ~ which ~ has, at times, become an inavaluable resource for healing.

Regardless ~ My love and support for family at this time ~ are to be praised. My sister drove two hours with her daughter's to come help me ~ and, my mother; was by my side the entire time. And yes, I know, I am not the greatest of all patients~ (lol...) (a families inside joke ~ I'd imagine you would have to know me, quit well, to truly understand!!! ~ because I am unable to swallow pills ~ I must ask for either liquid prescriptions or crushed pills in applesauce or pudding ~ I, as well, am not much of one for medications ~ so, it takes my mom... a whole lotta convincing before I will even begin to think about shoving med's down my throat! ~ plus, I'd imagine ~ I'm very cautious ~ I want and need to know about the details of all procedures ~ including side effects, etc... I could go on... and on... but, let's save the fun stuff for my fam!)

What fun would life be ~ if we truly couldn't laugh at our ownselves?
That's all right ~ We are all different ~ in our very own special way :)

So, enough, enough, all ready... yes, it's late, and I'm once again up. I took a bit of a nap when I got home earlier today. I am (overall) feeling quit well. OOOOhhh sooooo much better than last week. Now, that was a total nightmare! Who would ever have imagined that such an obstruction to the kidney could cause such freakish pain? Although, the incident in the er that evening came relatively close ~ they tried six times to get an IV placed & failed ~ blowing out two of my veins in the process. But, that's ok ~ it took my mind off the back pain for awhile!
As many of you may be aware, the er took a ct scan ~ which revealed that the tumor mass in my pelvis was pushing against the ureta ~ which was causing the blockage of the flow from the kidney to the bladder. Of greater importance in the ct scan findings is the overwhelming and sudden growth factor of this tumor. It has been measured at 9 cm X 4 cm. Within less than two weeks it has grown a substantial amount ~ causing much alarm.
My oncologist at home ~ to say the least ~ has been a blessing in disguise. She is very concerened and determined as well, to try and help. Basically, she believes that this has become a "time-sensitive" issue ~ and that a course of treatment/plan, needs to be in place ~ NOW.
After many phone calls to the NIH ~ she has gotten in contact with those whom, she beleives may be able to help "expedite" the process. Unfortunately, it has been mentined that in leu of recent events ~ and with the placement of this stint in my ureta ~ (which is now considered a foreign body) ~ I may be ineligible for the TIL treatment. None the less... this treatment takes anywhere from 4-6 weeks to process ~ time, which, I do not have. So, it is in the hands of the NIH at this point. They have suggested IL-7 as an option.
Monday is the big day at the NIH when all the doctor's meet to evaluate all cases ~ and I do believe that I will be of priority. There is not much time to spare ~

So, naturally, yes; I have been taken aback by this news. Wow. It is extremely hard for me to internalize and intake. I have a mass ~ a soft foreign body ~ within my body ~ which has tripled in sized within less than two weeks time. It is overwhelming. This disease. It is unpredictable, unstable, ruthless, and reckless.
I have, over the course of the past two years become very familiar with this deadly disease ~ or, as it is referred to as: "the beast". I have read many heartwarming and touching stories of the struggles and battles that patients and families have endured along their path in life with this disease. I have grown to respect human ~ and human nature ~ by far ~ now, more than ever in my lifetime.
It goes without saying ~ that the power does lie, within oursleves. Just knowing, that I had such a wonderful support from family & friends ~ makes such a grave difference in the healing process ~ and yes ~ from each and every one of YOU ~ my reader's ~ just knowing, that you are keeping up with my daily life, endeavors, trials and tribulations ... shows too.... that you care ~ compassion is abound.

That is what life is about.

So, in the meantime ~ while we continue to wait to hear from the NIH ~ your thoughts and prayers mean the world to our family at this time, in our life. It is a new experience ~ life experience to us all. I know, that it most definately, can not be easy for my loved one's to sit an watch me "suffer"; in pain. But, it is part of the process. It is part of the the irrevocable truth. The truth that I have decided to share.
There is no way or reason to sugar or candy coat that which is ~
I've been thinking alot about how I have been feeling over the course of the past two years or so ~ off and on ~ sick, and then, not. The rollercoaster ride, which I have been on. The bad times, eventually, make way to good and the good ~ help me appreciate that time, all that much more.
I am ~ feeling absolutely better now. The back pain is all but void. Such a wonderful relief, without a doubt. Who would ever have thought that a simple placement of a stint could help alleviate all the pain and unnecceassry suffering?

The next step ~ is not going to be the easiest either. I'd imagine that I can bet, that I will be on a plane to Bethesda by week's end or soon thereafter. I am hoping so, because, at this point, as my onc has mentioned: "I am at their mercy". There is not much more, that can be done. I have faith and belief that they are working to find a solution; one which apply's to my current situation and on my behalf.
I have many thoughts, in regards to many issues. I have been made aware ~ that if the tumor growth persists at such a rate ~ and there are no real treatment options availible ~ pallatative care ~ is availible. For many, who are unaware of this term/phrase... it is just, merely, a nice way... of saying... that because there may be no further treatment options... the tumors can be managed... with pain relief/killers... so that a cancer patient may at least try to enjoy their time ~ free of pain.
The mass, which has grown, yes... I can "feel" it. I have been asked that and it's not so much, that the tumor actually causes the pain ~ it is what the tumor does... which causes the pain. Whether it is pushing against nerves or other internal body organs or the like. There is some pain associated with my tumors at times ~ but, overwall... it has been the internal destruction which has been most compromising.

I am sure, that I could continue to go on and on tonight ~ I once again have alot on my mind and in lieu of recent events... I am once again left to re-evalutate my life and life's choices.
It's not been easy... for my family to hear me think this way... or speak this way. But, as I continue to re-iterate and say... I will not allow myself or body to be a complete "guinee pig" for medical purposes. There will come a point... in time... when I will most definately say... that I would prefer pallatative care... so, that I may life out my life... one, left, for peace.

God Bless you all.
I will, as always keep you informed ~ and keep you in thought.
I send my love to all.
Becky