Last December as my Dad was dying he made a request. He asked that we be tested for genetic pancreatic cancer.
My grandpa had it, my dad had it. It made sense.
It took me 7 months to get it together. I already had a really crappy genetic disorder, and I was not interested in hearing more about my faulty mutated genes.
But I did it. Because I promised.
And in the midst of the chaos that was the week that was, I received a letter in the mail.
13 genes tested that are related to pancreatic cancer.
13 genes negative: NO CLINICALLY SIGNIFICANT VARIANTS DETECTED.
No guarantees. But, life has none.
Simply a straight answer that actually doesn’t turn my stomach.
There is so much more to say, but for today. Only this. Only positive. Only the good news that I passed none of these other mutations to my girl.
My friend in Australia reached out this week. My “blogging buddy” sensed the silence meant things had gone awry. Continents away; she knew. She was right.
Writing is my release, my sanity, my way of keeping Cowden’s Syndrome and the fast paced, quick changing world around us in check. Writing keeps me “honest” as they say.
And over the last two weeks there have been things to write about. There have been CT scans and fears, and mishaps. and pain, and hunting down doctors and bickering over erroneous bills. But, for the last few weeks most of those things have taken place hastily, in transit. I had some place else to be.
On Wednesday I got the call that Grandma Gen had died.
And as I sit here more than 48 hours later, I am sure it hasn’t sunken in. Not really.
Even as I look out the windows at the changing leaves, and I am brought back to last October, as Dad was getting sicker, quickly, I can not really process.
Gone too soon…
I sometimes feel like so much goes on so fast that sometimes the brain just has to protect the heart for a while.
I have an odd connection to numbers, so it struck me that Dad had died on a Wednesday too. 46 weeks ago. And as we approach what was sure to be some challenging anniversaries, my family will gather this weekend to remember again, a life well-lived.
Wednesday was my cousin Christie’s birthday. 23 years old. I so hope that she found her cake. Because Grandma would have never let a party pass without some cake.
Wednesday was my cousin Kim’s birthday too. 30 years old. One to be filled with joy.
I know girls. I really do know. A piece of my heart died forever on that November day, my 18th birthday when we lost Angel Meghan. And last year, on my 40th, Dad and I went to the VA for a really tough appointment. And then to get the legal papers signed. And as he signed he said, “It’s your birthday!” And I said, “There’s no one I’d rather spend it with Dad.” And there wasn’t. And I don’t regret any of it one bit. And in the end, that is what matters. No regrets.
So to my cousins whose birthdays will never quite feel the same I can tell you to focus on the connection. We all got a really strong angel in Grandma – but you girls… well you have something no one else has. I’d love to tell you “Happy Birthday” doesn’t still flip my stomach a bit, but I don’t much like to lie. What I can tell you is focus on the “happy” that was Grandma. Eat your cake. Always.
And Kim. The wedding will be December 6th. The shower is tomorrow. So compassionate. Not just to Grandma, but to everyone. Something unfair about the timing of it all. But, I can tell you I have a good feeling heaven will be tossing SHOWERS OF BLESSINGS your way.
It’s almost impossible to sum up my Grandma Gen to someone who has never met her.
Grandma was beautiful. Not only in a physical sense, but inside as well. One of the stories I never tired of hearing was the one of her and Pop’s first date. And because there is no way I could do it justice here, I will simply tell you she told it often, and rarely did a detail change. Decades after Pop’s passing, and 60 or so years since that date, her eyes showed the love in her heart. And even in her last weeks whenever we talked about Pop she would say, “God gave me such a GIFT when He gave me your grandfather.”
They were parents. Busy parents. Grandma was the Mom to nine children – 8 boys, and a girl. Most of us shudder at the thought of trying to raise 1, or 2, or 3 children. For Grandma there were never enough babies. Each one was a true gift from God. So for 20 years she had her own, from my Dad to my Uncle Gerry, and everyone in between. And then, just about three years after Gerry, my older sister Lisa was born. There was never a break. The house was always busy, and happy.
They took this shot as often as they could…
As a young child, the cousins just kept coming. There was always a baby to play with, and Grandma ALWAYS had a smile on her face. I believe between 1980 and 1990 – the core of the cousins, 13 if I have the numbers right- were born. Some just a few weeks apart. When all was said and done she boasted 27 grandchildren. There were busy Christmas Eves on Kingsley Avenue for a long time. There were swims in the pool, and dogs to guard the door instead of keys for the lock. There were trips to “Bud’s” for milk, and always a sweet treat. There were green mashed potatoes on St. Patrick’s Day that at the time just amazed me. The little things. So many, really, are the big things.
When I got to call Grandma and tell her that she was going to be a Great Grandma, she let out tears of joy. She was thrilled beyond words. 2003 was a good year – 2 grandchildren and 2 great-grandchildren. 9 more great-grandchildren have followed Meghan and Luke. And she never resisted an urge to tell friend and stranger alike about how proud she was, of all of us.
The first “great grandchild”
Maybe one of the most special things about Grandma was that everyone had their own “one of a kind” relationship with her. When you spoke to her you were the most important person in the world. And we were all perfect. In case the rest of the world missed the memo, or noticed a few faults along the way, you must have been mistaken. Each of her children, her grandchildren, and her great-grandchildren could do no wrong. And while in reality, we know we are all far from perfect, there is no denying that that kind of unconditional love felt awfully good.
Uncle Paul and Aunt Rita’s 25th Anniversary
Grandma had a firm, strong belief in God, Jesus, and she adored The Blessed Mother. She would often tell me, if you REALLY needed to get a prayer answered to pray to The Blessed Mother. She’s get word to Jesus, and He’d never deny His Mother.
Motherhood was her core. From her days playing with her baby dolls she prayed to be a mother. And boy were those prayers answered.
And through the years as the family grew, and changed, Grandma could be found smiling somewhere.
Grandma with Poppy Hollywood and Barbara and Gerry OGrandma and Aunt Shirley
I can say with confidence, that for all the years I knew my Grandma she never acted with malice in her heart, and always had the best of all intentions in all she said and did. Somewhere along the line I became a middle aged grown up, and I’ve picked up a few things. That pure heart, that is what defines people. At the end of the day it is the knowledge that they did the best they could with what they had where they were at all times that really separates the pure in heart.
And as sure as Jesus said, “Blessed are the pure in heart, for they shall see God…” I have no doubt my Grandma was welcomed into Heaven-warmly.
Because even after the stroke that was to be the beginning of the end, she was the most polite, well-mannered patient you ever could have imagined. In the hospital, in the nursing home, to anyone who did anything for her, “Thank you.” “They’re so good to me.”
Even as she waited for visitors, she stared at the picture of her children on the steps at Dave and Margie’s wedding, and she spoke with pride about each of them, and how their hugs warmed her soul.
Sometimes when I was visiting her alone she would tell me about the places she had been. Of course these were voyages of the mind, but I listened, as we all did, with intent excitement. These last few weeks were interesting, because you truly never knew who had been in before you, or who came after you, but we all had our times to listen and chat.
She and my brother used “FaceTime” so he could chat with her from Texas, and she sure knew it was him, somehow coming through my phone. Shane may very well be the first Thompson male to have his facial hair approved of by Grandma. He booked the first dance with Grandma at Kim’s wedding. And without fail as the call would disconnect, she’d say, “Shane, I love that kid!”
And there were days my Dad must have visited with her when she was lonely, and her brothers, and some others who gave her comfort, because we heard all about them too.
Even as her mind took her farther from reality, she smiled. She regaled us with tales of how we were all going to gather for family dinner. She told me one day she was buying 2 houses to there would be enough space for all of us. She would talk about the family being close, and how my cousins from Washington were coming with their families too! (We can dream!)
So this weekend we will gather together again. This time for the first gathering without our matriarch.
And we will spend Saturday showering Kim and Nando with blessings for their upcoming wedding. Because Grandma, who believed so much in weddings, and marriage, and love would have had it no other way.
Then Sunday we will get together in Harmon Funeral Home again. And in Irish fashion we will have a loud celebratory wake for a woman who lived a full, happy life. And we will look at pictures and tell stories, and we will laugh and smile. Together.
On Monday we will travel, and bring her back to Pop. 21 years later they will be reunited again, a love story never ended, simply interrupted.
Together again – together forever
Then the real work begins. It’s our job now. We need to stay focused. We need to stay connected. We need to stay together.
For so many of my cousins Grandma Gen was their last grandparent. I have a guilty amount of good-fortune, and celebrate three grandparents still. But. the significance and the importance is not lost on me.
In the end it is really only about one thing.
In our loss, we must remember their freedom. In our loss, we must remember the gifts they left behind. In our loss, we must remember they are never truly gone if we keep them alive in our words, thoughts and actions.
I miss my Dad. I miss my Grandma.
Their physical bodies are gone. Their energy, their spirit, their love remain.
Grandma Gen we’ll do our best to stay “on the right path,” as you so often said. And at every dessert table there will be an extra piece of cake or a “dollie” shared for you.
Enjoy Pop, and Daddy, and Angel Meghan, and Bo, and all the rest of those you love so much. No worries. When the time is right we’ll all be together again.
It wasn’t too long ago in conversation with my husband that we started to talk about all the things that have gone on in our lives in the last 2+ years.
The life changing diagnoses of Meghan and I and the correlating surgeries and appointments. just about took control there for a while.
And Felix studied for and ultimately obtained his electrical license through the drama, and extensive, ridiculous hiccups in the process.
It all just blurred in and we never properly celebrated that accomplishment.
Meg changed schools. Well, twice now.
We changed churches.
And the car accident, and the back trauma.
The rotted bay window, and the pool with the hole in the liner.
The loss of my father after a brief, battle with pancreatic cancer that had life changing ripple effects everywhere.
I actually sat down to write a list at one point. Maybe I felt, albeit temporarily, the need to justify the un-returned phone calls, the missed dates with friends, the chaos shoved behind closet doors, and the overarching feeling of disorder in my life. I wanted a way to explain why I felt like I was existing, not living. Why every weekend was faced with catching up, and why we were missing each other. I wanted to explain to the world how I was nutritionally healthier and stronger than ever before, and excited about my new products, but I was/am struggling to get out of my own way.
But this year has served up some intense wake up calls and I am trying to give them my full attention. Because if any reality resonates clear it is the one that there is no guarantee of tomorrow on this earth.
I am not trying to be morbid. Quite the contrary actually.
It is that very realization that caused me to shred that list I was making. It’s counterproductive to dwell. We must press forward anyway. So why stay stuck in the past?
There is a point in your life where you have to stop. And look around. And focus on the blessings around you. This paradigm shift, while far from perfected, is a work in progress.
We have taken steps to transform the house, even if that stands in the way of clearing off the credit card bills. Because, we are not extravagant, and never will be, but living in a neat, clean, organized house, when done well, is easier to maintain, and therefore an investment in our time together
We have family. And lots of it. At 40 years old, I can boast 3 grandmothers and a grandfather. I am becoming more aware each day of the depth of the value of those relationships. In addition to those 4 great -grandparents, Meghan has 4 grandparents of her own. I am beyond thrilled that Meghan, now 11, has had the opportunity to have created life long memories with all of them.
And sometimes it is within thoughts of those closest to us, that we remember what is the most important.
And if I really remember who I am, I have to speak of my grandparents, most especially today Mom’s parents.
Early in my life, when things were jostled around and life was uncertain, they were there. We lived in the first floor of their 2 family for the most formative years. They fed us breakfast and met us after school. They took us to sporting events and school activities while Mom worked 2 jobs. They were just always THERE.
And Pop was there to fix things, and Grandma to play cards and cook with.
There were summers in Ocean City, New Jersey – the best summers of my life.
There was a whirlwind trip to Disney, and so many more adventures.
I remember them as a young child, watching them. They never separated, even for a few minutes, without a kiss goodbye and an, “I love you.” This practice, perhaps formed after a lengthy service in WWII, and a full career in the FDNY seemed rooted in their deep understanding that we need to appreciate each other here. Now.
And when we moved into Mom and Ken’s house there was the summer Pop and Grandpa Al sided the house.
And in my own house the woodwork. The beautiful labor of love that is each piece of trim, each windowsill, each doorframe. In his 80s when I bought my house Pop trimmed each piece, and even helped Felix put in the front door. He shared his craft with my husband, and did so with patience and ease.
So much of the last 40 years of my life revolve around Grandma and Pop.
Never a task too difficult. Never say no. Always giving. Always sharing. Always loving.
When I think about my list that I had started to write, and then I think about them, I get a bit embarrassed.
Born in 1919 and 1920 they have seen more changes in their lifetime than any other generation. They lived through the Great Depression, and participated in World War II. They spent years apart, in touch by letter, only to marry a few weeks after Pop’s return in December 1945.
They built a family, my Mom and my Uncle, and the family branched out.
Pop worked in the Fire Department, and at Zion. Grandma took care of everything else so that there was never a thing out of place.
During their life transformations like – no phone to cell phones, and no TV to HD flat screens, and so many more have happened and they persevere. Pop Emails and surfs the internet, and even carries a cell phone – though it’s rarely on!
Times have changed and things slow down a bit. But it’s still a huge highlight to stop in for a visit and chat.
And when he can, Felix still picks Pop’s brain for suggestions of things he’s about to try.
All my life I remember them doing. For everyone. All the time. They are the ultimate lesson in “pay it forward.” They are for me the ultimate reminder of those vows we make before God and family and friends on the day we marry. Regardless of the wording used, the sentiment is the same. They promised to love each other, in good times and bad, in times when there was a lot, and in times there wasn’t, in times of sickness and in health, and to stand by each other for as long as God gives them life together.
Love my Grandparents!Christmas 2009Grandma’s 90th birthday on 2010At Pop’s 90th birthday in 2009
And even in the toughest hours, they make it look easy.
That is almost 69 years of marriage as God intended it.
There are so many things I share. And there are some that just aren’t to be shared. But make no mistake about this.
I’ve learned how to be a better person, and a better Christian from my grandparents. I learned how to be a better wife, from my grandparents.
This doesn’t detract in any way from the love of all the other influential adults in my life, including my own parents. We learn different things from different people at every place in our lives.
But today, it’s about Grandma and Pop. And how their selflessness and pure love never cease to amaze me.
I pray that though all adversity, my husband and I may set the same example for our daughter.
We are deeply, thoroughly, and completely blessed.
And when making lists its far best to make lists of your blessings than your struggles.
I sometimes hate the saying that things work out the way they are supposed to. Sometimes I just don’t buy it. But, then there are other times.
I have suffered with varicose veins since I was in my early 20s. I had 2 stripped surgically before I was 30 I had 5 VNUS closure procedures in 2011.
Over the years I have tried compression stockings, switching to comfortable shoes, losing almost 40 pounds, and the veins just keep on bulging.
It gets to the point that the throbbing in my legs is the last thing I feel before I close my eyes, and the first thing I feel when I wake up in the morning. During the day I get distracted. And when I get home at night to take off my shoes and switch to pajamas, the size of my legs is noticeably larger. The swelling is evident. The blue veins bulge.
Although this is far more than a cosmetic issue, the ugliness and the irony doesn’t help. Last summer I bought shorts. In a size 2.
This is not my leg – but a close comparison…
This summer I barely ever wore a pair, and despite having a pool at home, I never put a bathing suit on.
As Meghan has battled with her AVM (Arteriovenous Malformation) in her right knee since around 2009, I have learned more about the vascular malformations that can be associated with the PTEN mutation that causes Cowden’s Syndrome. It seems the connection is documented, but small sample sizes make it hard to study the specifics of this rare disease and all its variations in detail. See there are differences even within the PTEN mutations that link us all. Some are germline mutations, some are frameshift, some are missense, others nonsense. AND, there are further specific differences too complicated for me to process. It seems, in layman’s terms, that each mutation manifests slightly differently, although there are major criteria that link us together.
And, it seems that the frameshift mutation Meghan inherited from me, is likely at the root of our vascular problems.
Another symptom I have dealt with for years, explained, but not gone after this PTEN diagnosis.
I had an appointment with a highly recommended vascular surgeon on Tuesday. I expected what I have come to expect.
There was the sonogram. The attempt at settling out the roadmap of veins, so many of which have already been treated. It is no easy task, and I leave them at a disadvantage because I have had my vascular work done in several different facilities. (You can read that as difficult to please.) Though for the first time I was told that the deep veins in my left calf are so dilated that they are at great risk for blood clotting. The blood sits stagnant there. That apparently is not the most intense of my issues.
Then there was the visit with the doctor. A young, bright eyed, refreshingly competent doctor who was very interested in my Cowden’s Syndrome, and my previous abdominal surgeries.
He asked if things got worse with the vein in my leg after the tubal ligation in 2011.
“You mean the hysterectomy?”
“No, that was the following year.” He was reading from a sheet I had given him. He was right.
I guess somehow I had blocked the tubal ligation which had become unnecessary less than 12 months later when Cowden’s and a uterine polyp (post breast cancer) necessitated a full hysterectomy.
“I’m not sure, why?”
“I am wondering what is causing these veins to turn. And I have to look at every possibility.” As he places his hand on my abdomen.
“How long had that pulsing been there?”
“Um… I don’t know. (Feeling incredibly dumb for ignoring my body) Why?”
“Well, I won’t even consider surgery without some major tests. First I want a full abdominal CT to check for vascular malformations.”
Now truth be told I wasn’t shocked to hear this. I had a nagging, behind the ear voice telling me to get that pulsing checked out. But I had met with a vascular surgeon in July and that turned train wreck. So I was a bit delayed. I also I guess didn’t really like the fact that he could feel the pulsing too. I thought, well I thought that was just mine….
So I left with a script for the CT, waiting for authorization, and a script for blood to assess my kidney’s capability to handle the CT dye.
And as I tried to process that, I thought of everything. I ran the gamut from aneurysm to AVM.
As I washed my hair the next morning (I do my best thinking in the shower) I had one more thought.
MY SPLEEN!
I had never mentioned my spleen. The hamartomas/lymphangiomas/masses on my spleen, the largest of which are 4 cm round. I was told they are vascular. I have been watching them with periodic MRIs and I was told as long as they stayed stable I could keep my spleen.
I really hope they aren’t misbehaving.
I like my spleen.
I also like that this doctor cares enough to check everything out first.
Pain in the butt? Absolutely. Life-changing? Maybe.
The other doctor was ready to take the vein out in the office with no prior testing. This guy told me I need an ER and tons of pretesting. You know what? At least he takes things seriously.
So now I wait. For authorization. For testing. For a whole host of inconvenient to schedules to processes.
And fortunately there isn’t much time to waste on worry.
Life is busy. We squeeze what we need to into the crevices.
We can’t let Cowden’s Syndrome distract us from this life that needs living.
This one is a favorite of a dear internet friend 🙂
beatingcowdens 