lack of patience...

Do I really admit that I sometimes experience a lack of patience? Do I really admit that I get short fused with someone who is ill? Do I really admit that AND NOT feel a sense of guilt about

"CHEMO BRAIN" (which is what Michael and others refer to it as!)

Many people with cancer experience memory changes-such as mild forgetfulness, an inability to concentrate on more than one task, or more severe memory loss-after undergoing chemotherapy or radiation treatments. In other cases, as in a person with a brain tumor, the cancer itself may cause memory changes. Surgical interventions, particularly for brain cancer, may also lead to memory loss.

Studies show that patients experience trouble with memory and language skills after chemotherapy. Scientists are searching for the exact cause, but they believe the chemotherapy agents may be associated with this side effect. The drugs are designed to attack cancer cells, but often kill healthy cells in the process. Researchers are studying whether chemotherapy agents may be damaging healthy brain cells. Others believe the cancer itself may be responsible for the memory changes.

Even knowing all this to be true....I find a shortness of patience....and wonder WHY it is that one can remember the mundane football scores of 20 years ago...but can't remember what was told to them 5 minutes ago! Short term memory loss is a very difficult thing....I DO understand because I suffered from it myself (after my own surgery)....and probably drove people crazy to.....I am trying so hard to get a grip on this.....

And there....I just admitted it all here.....perhaps now I WILL FEEL BETTER!!


All systems are GO....I picked up all the tickets for Disney today...along with the itinerary... We leave in 12 days!! YAHOO!..... All of the scans have now been assigned a date and time...along with the consultation with the bone marrow team...along with Dr. appointments...We will have a very busy May...Going to Doctor appointments and testing at least twice a week....but that is A-OK because we can do that from the comfort of home....we can do that ALL after Disney and meet each challenge after a much needed free time....
All the news is good for what we had hoped for in respect to how we would like things to be handled. Although Michael is not thrilled with having to go through more tests...not thrilled with dealing with different Doctors...he knows it is necessary to find out if anything more can be done for him....This is the only option left....I am still not sure what his decision will be regarding the bone marrow transplant if he is a candidate....He is tired...some days more so then others....So I wait, patiently for him to make that decision for himself....I can give my views...I can voice my opinion...but ultimately it is his decision to make....
For now....I am happy that we are going to be getting away with our little love....and that I do not have to travel to Memphis for any tests.

Have you ever felt....

Have you ever felt like you had a tightness that you just can't seem to get rid of...a tightness around your throat so that you have a difficult time forming words....a tightness around your brain so that you have a difficult time even thinking....a tightness around your chest so that your heart seems to be hidden....a tightness around your hands so your creativity is not flowing.....a tightness that just does not seem to want to unfold???????????????
Stopping you from anything...everything? I have been feeling that tightness the last few days...And really I have no reason to....what is it that causes ME to put a HOLD on
I have so much to focus on that is much to be grateful for....and yet this tightness has captured holding me prisoner....
Or am I just holding myself prisoner?
Deep thoughts at the bottom of yet another cup of coffee!

Off the subject....

Today, I want to share something that is off the subject of illness...of the road that I travel...
I have 2 grown children....(36 and 34) and a grandson (my littlest of loves)....Yesterday, while sitting playing...talking...laughing with my littlest of loves and knock came on the door and the door opened.....AND THERE was my son!!! My son, has been living in North Carolina....gone from me accept for phone calls and the occasional visit... WHAT A SURPRISE! I knew he was coming into town, but did not expect to see him till Monday, the 20th.....I was overjoyed!....
We sat we caught total immediate family surrounding me! My son, is almost sure he is moving back to our home city....He will be staying an extended period to set up work and get organized....the circumstances of his return are not ideal...but to say that I am happy about this is an understatement!! He makes me happy...he never complains (even when he could!) he has a positive outlook on everything and it rubs off on all around him....He smiles and laughs freely...he gives the best hugs...and he is extremely supportive....
Being surrounded by those I love....and who unconditionally love me........PRICELESS!


24 years married!...(well 27 this June..2 years of dating!) And what an anniversary gift we got...
The VA approval for ALL the tests....and for the bone marrow transplant evaluation! Not sure yet when all that is going to take place...hopefully AFTER we go to Disney....not knowing what the news will be, we would rather take that on after a visit with the mouse!
The best part of this is that we were under the impression that the VA would have us travel to Memphis for the testing at the VA hospital there that specializes in it...but they have approved us as an outpatient at the Wilmont Cancer Center here in upstate at the University of Rochester.
I could not be happier about this....My network of support is is Michael's and if he is a candidate for this then we will have those people close by to support us...It is a very hard treatment to go through....If any of you have read the comments here on the would of read about Pat and her son Dan....And what Dan has endured over the past several years...He is doing GOOD now though...In life!
So Happy Anniversary....To Michael....To Me... TO LIFE!


The Journey

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice --
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do --
determined to save
the only life you could save.
- Mary Oliver

I am so aware that I can only SAVE my own life....and although that seems totally selfish I realize that it is the RIGHT thing to do....I have to mend too....I have to heal also...I have to be whole. It has again come to my attention the role of caregiver...and I am tired these days...wishing for a reprieve....So DISNEY can not come soon enough for me....Where I will laugh with the Mouse...enjoy the delight of a small child...and sit by the pool in the warm sun....


Easter Greetings!! Well...the arrangements have ALL been made and paid for....We are OFF to May!! I can't believe that I pulled this together and for a great price in the mater of 24 hours....LIFE IS GOOD!!!
I hope everyone has a delightful Spring celebration ....I am certainly smiling today!


There is something that touches my heart in such a profound way about the written word...doesn't matter if it comes in the form of a letter or an E mail....what speaks to me is the heart to heart...I have been so blessed to have words come my way as I travel this path....words that I now am much freer to pass onto others...words and even art that comes from my heart and is offered to someone else for no other reason than to let them know that my heart hears heart holds them.
We as humans have at times lost this connection....this neighbor helping neighbor .... I WANT IT BACK!! And I am GETTING it back in my own way....HERE....I have had the opportunity to be touched by and touch so many people that I would of never heart is full tonight...for words...for connections....for love.
As I continue on this journey with Michael I am discovering how precious time you cannot continue to put things off for a better opportunity...a better day...that we have no idea if that opportunity or day will ever come and therefore we missed doing something. I do not wish to miss anything anymore....I wish to laugh with all my and then watch as I make those dreams come in the living room as the oldies play on the radio....and sing off key if that is what strikes me...not worrying if it is considered the wrong thing to do...or if I look silly in any way....I wish to be open and know and be known...I wish to share who I am and what I do...along with learning about others...touching hearts...
I strive now each day to remember to ENJOY almost every moment....It is a lesson that I am FINALLY learning....And although this situation is not the one that I would of wished had finally given me this valuable lesson....I am grateful none the less for learning it....I am DISCOVERING that life is FULL and BEAUTIFUL if you just allow it to be and by letting others INTO your life ...You become that much more whole....

April 3....2009

I can't even begin to explain the feelings I have this morning....It is a rainy day here in upstate...
but I feel re-energized! Today, is the anniversary of my father's would of been my parents anniversary also....So a double whammy for my mother.....but today, I reflect on how much love my father brought into my wonderful and beautiful he made me feel almost all the time....I was my fathers' QUEEN (I had won a beauty contest when I was in my Junior year!!...tiara ...sash...and the wave perfected!!) But more than that he laughed with me..gave me a sense of humor and a quick wit....Got to love that....
So today, I am feeling all those emotions and more....I am planning a trip to Florida, as Michael wants to make sure that our little love of a grandson has something to remember him about...He is only 4 right now, so memories will be important....
We are in a "resting" time right now....and the Doctor has told us that if we are going on vacation...NOW is the time to do to the Magic Kingdom....hopefully the beginning of May!!