Cancer in Our Family: The Journey Continues: What Living With Cancer Can Mean
For many years a most unwelcome intruder settled into our lives. With no warning, it marched in and became a part of the day to day life that we had found so idyllic to that point. In fact, living with this insipid illness has become our new normal.
A number of hubs that have been shared by me are on the topic of my daughter and grandson and all that it means to their lives.
Many precious readers send blessings to us and we are so thankful.
"He, she, they.....LOOK SO GOOD..."
You may not understand why those often spoken words bug me. Here is the reason....because looking at someone often, very often does not tell how they are.
My baby grandson looks okay if you look at him...he is adorable so if you do not know that his body is wasting away right before our eyes or that he is in bone marrow failure and no match has been found ...then you think he looks great.
And my daughter....if you look at her and witness her drive and determination to be there for her sons...you may not suspect her body is ravaged by MS and cancer throughout and a new diagnosis of leukemia....
Do not get me wrong....I WISH WISH WISH that they are well and that they will be on the planet for many years....
I wish they are as well as others perceive them to be.
And if you read my writings about their illness....you know that we do not live in sadness....we do not dwell on the diseases but we revel in the time we have together....every minute of every day.
Two Sweet Peas in a Pod
Introducing My Family for the Very First Time by Name
For all of the years that I have written about my daughter and grandson, I have only referred to them as 'daughter' and 'grandson'.
It is time now to put a name to their faces...it may help you to become more in tune with our story if I do. Maybe not. I never really know what will be the reason someone finds these hubs and reads them. But for me, it is more personal and they will seem more real to you.
Stephanie and Heston
My First and Only ....
In many hubs I have written of the journey of this young woman. As her Momma, I find great joy in presenting to you....Stephanie.
Stephanie came into my life 43 years ago and nothing was ever the same again. Time does not stand still when you have children. How can this many years have passed by in what seems like an instant??
Stephanie was diagnosed with her first type of cancer 13 years ago (soon to be 14). We had no idea that over a decade later she would be totally living a new life that is directed to some extent by the cancer.
It by no means defines her but because of it her daily life is affected. She takes a medicine cabinet full of meds mainly to counteract the effects of the devastation that cancer has caused.
She has many health issues that she did not have before cancer showed up. if I had to single out one, I would have to say the most serious of all is the damage that has occurred to her heart. She is monitored and medicated carefully in an effort to keep her ticker ticking. And, yes, one thing we have learned to do is to try to make light of some of the more serious issues that come.
-It's only when we truly know and understand that we have a limited time on earth - and that we have no way of knowing when our time is up - that we will begin to live each day to the fullest, as if it was the only one we had.— Elisabeth Kubler-Ross
One of Stephanie's Mantras!!!! "HEAR ME ROAR!!!"
My Eldest Grandson
When my daughter was in her mid twenties she married (a marriage that did not last). But the best thing that came out of the marriage was my eldest grandson, Jay.
Jay was sick from the time of his birth. One hospital visit after another until finally an amazing doctor who has since passed away, diagnosed his cancer.
That was when he was four. He turned 20 in February.
We were told he would not live long so we braced ourselves and held on for the roller coaster ride that would ensue.
He is the apple of my eye, the frosting on my cake, the twinkle in my eye. and every other cliche you can think of. I loved him from the time that I petted him in NICU at Arnold Palmer Hospital..and that love has only magnified over and over and over as the years passed.
We were told that sadly he would not live to be 6. And when he did, surely he will never be 9. And when he was 11, the doctors decided we could have a birthday party because there was no way he would live to be 13.
And how filled with wonder and joy we are that he walks the planet today.
A Little Peek into Jay's World
Jay was never able to attend school.
His immune system was almost nonexistent and he had almost no ability to fight infection. He has spent much of his life in and out of hospitals, many times for things that others would not have been admitted for but because his immune system was so weak, he was seriously ill. And, as an adult the same thing happens....he was recently hospitalized with pnuemonia because he was seriously ill.
And you would think someone who grew up without being able to have any normalcy to their youth might have a really really negative attitude.
You would be pleasantly surprised if you could meet him. He is a gem!! Of course he is...he is my grandson, right??
If We All Would Do This, Our Lives Would Be Richer and Fuller...
Do not miss one minute of any day trying to second guess the future.— pscott (I think)
Five years ago a most wondrous stork decided we needed a newbie in our life. And of course the doctors disagreed. My Stephanie was told that she would not live through the birth due to high stroke and heart attack issues. And that little unborn sweet pea would not survive either.
How blessed we are that they were wrong on both counts. She was meant to have this baby. He was meant to be on this planet.
As if it is not evident enough, I adore both grandsons so very much. It is with joy and great pleasure that I introduce Heston, my youngest grandson.
I never knew I could love another child as much as I loved my grandson, Jay. And then this doll appeared and once again I am awash in love that is difficult to describe.
How does your family deal with serious illness/cancer?
Jay and Heston
It is Important for Me to Say This
Purposely I have refrained from naming possible conditions.
Many have told us that his symptoms 'sound like'.......whatever it is they know about.
Doctors have suggested many names of scary things it might be.
Until a diagnosis is made, we are not giving it a name. We are just feeding him whatever it is he will eat and can keep down
And, know that he has many Angels from near and far who are watching over him.
Little Man Heston
For almost two years Heston has been sick. With gastrointestinal disorders which cause flu like symptoms (without being more graphic) and acute pain that causes him to awaken in the night screaming and crying in pain.
He continues to lose weight and doctors still are unable to determine what is causing his illness. There is much more to his condition that I will not go into at this time because a definitive answer has not been found. He has had stellar doctors at an amazing medical facility here in Florida and still this elusive malady has not been given a name. A slew of " possibles" have been tossed around but we do not know exactly what is causing him to have these issues.
His family and he moved to a new town and he will be seen at another well known hospital with a stellar reputation. We are only hopeful that they can at last define what causes his symptoms.
He has to drink at least 2 PediaSure a day. O, my. Have you ever smelled it? Tasted it? Next on my agenda is to write to Abbott. My request will be that they make a product that is palatable and that has a pleasant odor.
Often after he has spent a LONG time trying to get it down, it comes right back up. That is another issue...frequent vomiting (even when no Pedia Sure is involved).
So, looking for answers right now
The really good thing, remarkable thing is that he is not lethargic. He just does not eat. He shows little or no interest in food because it gives him a tummy ache. He has begun to associate food with pain. So again, lest I sound redundant...looking for answers.
LIVING with Cancer Means Embracing Your Passions
I was told not to long ago by someone who doesn't know me that it would be selfish of me NOT TO CONTINUE treatment..
I don't see it that way ..I see a LIFE ahead of me of kindergarten cupcakes.. First plays.. Jay starting school.. Weekend get a ways.. Memories..
We are not guaranteed tomorrow..
Me being in bed ..hospitals.. Hours of infusion rooms.. I HAVE DONE THIS ..
Anyway I don't know my path this go round .. But for now I leave you with this.. WE GOT THIS— Stephanie
Health Updates as of June 2015
Not many days ago, my Stephanie and Jay went to have bloodwork and when the results came back they were not what we were looking for
My daughter's numbers are 'in the toilet' and so are Jay's. For Jay that means he will have more rounds of chemo.
Stephanie received new information on her tumors and it was not good, not at all what we hoped for. She has also begun to have many seizures again (she has a brain tumor that is inoperable) not to mention tumors that are in more places in her body than you would believe.
So, he we are again. What is the prognosis?
We do not ask. Both Stephanie and Jay are survivors in the truest sense of the word. So many times we were told that they would leave us very soon and here they are, walking around the planet with us.
Believe in miracles. Believe in endless possibilities.— Lailah Gifty Akita
Stephanie and Her Soulmate
Blessed and Then Some
Just like it is impossible to describe the love I feel for and from my grandsons, it is not possible to really express how blessed I feel. How blessed WE feel.
Stephanie had chemo and radiation time and again and it made little difference.
I watched my Stef (what I call her) curled up in a chair, snuggled up with blankets, after she had about her tenth clinical trail of chemo. It was that cocktail that was one of the times that almost took her from us.
It was then she decided no more chemo. She has had radiation since but no more chemo.
She wants to live and have some quality of life in whatever time she has. She wants to be a part of life and not have it pass her by.
Jay has not had to have treatment too often so his body has not been as devastated by it. But he has many health issues and his numbers too are not at all what doctors are wanting for him.
We watch him when he does have treatment though...as it is stressful to his body.
Blessed, yes, we are. Each one of us on this planet has our MOUNTAINS. We all have difficult journeys to take. We are no different from any other family.
Stuff happens . You have a choice. We have a choice. Wallow in the unfairness of it all and miss today. Or, deal with it and move on. Give in and give up or dig in and survive. Perhaps you may see what avenue we have chosen.
Some questions we are asked:
Do you ever cry?
Yes we do. We all do.I cry because I cannot fix my girl or my grandboys. That is my job I think; I should be able to FIX them!!!
Stef cries because she is in pain or frustrated at the illness...but rarely rarely will you see her cry unless it is for someone else's pain. And she does say..."Mom, they don't see me cry because usually I cry in the shower and besides crying gives me a headache." (It gives me one too!!!)
Are you afraid?
Yes. But as I have said in other hubs and say again, we do not live in that dark place of fear and worry. We recognize when we are feeling fearful, we address, and then we get back to the business of living.
How can you joke about something so serious?
It is a coping mechanism I suppose.
We have often said that when one of us dies this is what should be done:
Rent a hearse with a glass enclosure, preferably horse-drawn, put a cut out life-size likeness of the person inside, and drive down Main Street throwing out candy!!!
How Do You Do IT?
More times than I can count I have, we have, been asked that question.
It is a life choice. It is something we decided to do. When my Stef was first diagnosed, we cried and cried and wailed and wailed, and then we stopped. And we made a promise and this is the promise:
Do not miss one minute of any day trying to second guess the future.
That really is key. That is how we do it.
Life is too precious to waste worrying about shoulda' woulda' coulda'.
- Take these minutes in this day and get lost in them
- Squeeze every bit of living that is possible out of them
- Become intoxicated on the wonder of this day, these moments.
- Feel the joy.
- Show your love and say how you feel to your precious family and friends.
- Do whatever it is with your family that you really enjoy because 'someday' may never come.
Today is your gift. Unwrap it and be thankful for one more day to share with those that you love.
This journey is hard at times and certainly not one we ever thought we would take.
But difficult events often bring unexpected positive rewards.
And in our case, it is the love and caring of so many here on HubPages and in our lives outside of sites on line that help us to feel lifted up and so very blessed.
So, thank you thank you thank you for caring and wishing us well.
And know that many many Angels are winging their way to you now.
© 2015 Patricia Scott