Thoughts on cancer

 The thought of David losing his wife makes lightning explode in my eyes and heart.  When we said I do, it meant I will.  I will love you.  I will keep you first in my decisions and spirit.  You will be my one.  You will be my heart.  My soul and your soul dances through life intertwined like ivy wandering over the bark of a tree.  

Stage 4 cancer.  How can you take the peace and passion of my family and rip it in every direction?  With every scar, you take a piece of me.  With every surgery, it is one more ability I can’t get back.  Every scan stitches doubt into our lives.  Tears stain our minds.  Not only do you chain saw your way through the adults, but you grab our kids.  That angers me the most.  How dare you?  How can you poke these precious beings and shred their confidence in day to day stability?

You have met your match.  We will show you joy.  Our hearts will not be heavy with fear.  They will soar in the clouds and be a ribbon gliding on a summer breeze.  The meadows below our beloved mountains will see us singing as we walk together along this narrow path.  You won’t make us break, but we will bend in the wind.  We will be the oak tree.  My acorns are stronger than you.

You have tried to stop my voice.  Every time I have tried to start writing my story, you send me a lump in my throat or electricity in my tears.  I won’t let you stop me any more.  Crying over the keys is okay.  You won’t stop me any more. 

Symbols of hope.  Hatteras was our first love together.  We could see the sea lice glowed in the moonlit waves thanks to the knowledge of an old timer. My granddaddy was a fisherman; an ocean fisherman at that.  That huts and shacks of the outer banks are a rare sight now, but in the 80s I fell in love when mom took Grandmother, Wayne and I to see where Granddaddy fished. Glimmers of DeWitt are seen in all my men.  Integrity, grit, strength, love, laughter, song, bare feet, tenacity describe a fraction of the man that I see in my 3. It is only fitting that the Outer Banks has anchored itself in our love and life.  

Writing prompts

 Getting sons through high school as first priority (able to stand on their own)

Living during repeated medical treatment s and yet another surgery.... 

Working from chemo chair, 

stopping to walk to river on way to Dr. Appt., 

Handling the boys' childhood and teen anxiety and emergencies from hospital bed and couch. 

Planning, funding and enjoying beach trips no matter what's happening with you. 

Learning to accept help from those you are trying to help.Added difficulty for someone who declared her Independence at 6 months of age. 

Being a supportive daughter, sister and friend!

From Kelly

Having Having tough conversations

Celebrating victories
Feeling isolated from the world
Trusting doctors
Advocating for yourself
Making HARD life-altering decisions
Having your mom by your side
Wisdom gained
Saving graces
Making plans even when the future is uncertain
Things that bring joy
Joys that have been lost (such as cooking)
Handling physical pain
Keeping a sense of humor
Cancer during COVID
How has this situation changed your relationships? Are they more deep? Have some fallen away?
How has this situation changed/crystalized your priorities and values?
Celebrating victories
Feeling isolated from the world
Trusting doctors
Advocating for yourself
Making HARD life-altering decisions
Having your mom by your side
Wisdom gained
Saving graces
Making plans even when the future is uncertain
Things that bring joy
Joys that have been lost (such as cooking)
Handling physical pain
Keeping a sense of humor
Cancer during COVID
How has this situation changed your relationships? Are they more deep? Have some fallen away?
How has this situation changed/crystalized your priorities and values?

 tough conversations

Fringes of Sanity & other sobering thoughts

#fringesofsanity

My new hashtag comes with a lump of reality, signs of hope and true grit. Dr. Chang at Stanford has been a fighter for me. When Anthem wouldn't approve the specialized radiation they wanted to perform and felt like it was my best shot in 2018, Dr. Chang wrote emails, called Anthem countless times and would text and email me with updates. Dr. Chang took my case to the tumor board last month.  He called and said, "I have good news, kind of.  I think.  Maybe.  We have a surgeon that is willing to do this surgery.  It is on the fringes of sanity."

Nothing like that type of confidence coming from a doctor, but I appreciate the brutal honesty.  I met with the surgeon a couple of weeks ago.  Dr. Visser explained that the tumor is "engaged" with my pancreas. It is moving towards the celiac axis artery.  After the appointment I typed out the words that had been spoken not realizing exactly what they meant, but they hit me hard as I clicked away at the keyboard. If I chose not to do the surgery, they could keep me alive "for a year or two, because this is a very busy, complicated part of the body."  Never before have they put a timeline on my disease. He also said the surgery isn't a cure, but the hope is when it comes back the cancer will pick an easier part of the body to treat.

Surgery is evil.  Abdominal surgery is especially toxic.  Recover isn't pretty.  I dread the pain in my abdomen -trying to sit up, going to the bathroom, walking down the hospital hallways convincing the team I can leave, tubes and drains in my sides, measuring what is coming out of the drains, epidural side effects, pain management and so on and so forth.What I don't dread is the moment I realize I am getting better!  What I look forward to is giving the middle finger to cancer again.  I have learned so much about myself these last 7 1/2 years.  Some good.  Some not so good.  But, I know that I have lots of determination, grit and desire to overcome.  What I must admit is I am tired. 

There is risk.  I always hated when the doctor at Hopkins would talk about quality of life.  Here I am 4 years later with the same tumor. I now dislike the words risk/benefit.  This isn't a small surgery.  I have asked a lot of my body.  Once again, I am asking my body to recover and bounce back.  I'm ready to give it the final heave ho!

Mom and I are preparing for our 40+ hour journey to California!  The positive side is I will get to see my brother, Penny and the kiddos and the Grand Canyon.  The downside is - how do you say goodbye to your children for over a month. How do you do that?  What do you say? Will they know how much they mean to me?  

Weight of cancer

Tonight I grapple with more wait and see.  

The weight of cancer takes a toll.  The heaviest burden is what is has taken from my family.  My boys have had to deal with 7 years of uncertainty, a previously active, fun mom, pain, surgeries, treatments, side effects.  

People don't alway understand when I say that it is easier being the patient.  I can feel my body healing.  My appointments are sent to my phone.  The scan reports are available for me to reread.  I'm entrenched in the process.  Talking about all of that to the boys and David not only makes it more real, it takes us all to a different view point. I do avoid their involvement sometimes because I like us to live.  I don't want the procedures, appointments, emails with doctors, and uncertainty to be what they remember.  

My latest scan proved that the tumor at my celiac axis is growing and is entangled with the blood vessel.  This makes surgery (the only cure) less likely.  CEA is the tumor marker numbers that colon cancer goes by.  The highest mine has ever been was 36.  This was in 2014 when the cancer returned to my liver with 2 liaisons about 2cm each.  Currently, my number is 77. This number has weight attached.

Everyone in our world is dealing with weight.  The weight of the pandemic, whether you believe in it or not, you are spending energy on it.  Our political world, no matter your side, you are spending energy on it.  The racial divide, regardless of your opinion, you are spending energy on it.  Murder hornets, dust flume, returning to school, face masks, going out to dinner, and the list goes on and on....our energy is tapped out.  

The weight of waiting is one of the hardest things about cancer.  When there is a plan, you can figure out your next step and be preparing for it.  If the next step isn't clear, you wait.  As you wait, there is stress.  Am I at the right doctor?  (I have total faith in my doctors at Stanford) Should I look at alternative treatments?  Is my time limited?

Tuesday will be the next update.  Hope some weight is lifted.

Life to live

This weekend, we got to spend time with both our children.  Being 14 and 18, the moments with our boys are fleeting moments.  Grayson has had a way to blaze his own path since the time he was born.  Watching him spread his wings and try new things is heart wrenching, exciting, exhausting and so many other emotions wrapped up into one.  This weekend, he was in High School Musical at Fort Defiance High School. Seeing Grayson smiling, dancing, singing (a solo), handling a basketball like a pro and more was mind blowing.....who knew!?

As a mom, I hope he keeps soaring through life.  Also as a mom, I hope that he doesn't have too many casts, falls, or face plants!  Life can be rough, but I believe that living every day is imperative.  We must rise to the challenge and grow.  Fail, fall, get up and try again.  Grayson lives life with fullness. He takes risks and knows there will be bumps in the road.  He has taught me a lot about living!

Journey started. Path found. Mountain ahead.

I remember telling someone when I was about 20 years old that I would be ok if I died.  My life had been great. My biggest love was being on the back of a horse or playing tennis.  Both were available to me on almost a daily basis.  Our farm had acres filled with a creek, pond, old tobacco barns, corn crib, garden, orchard, woods with worn paths from the cattle and horses and much more.  My mind was free to become a writer, famous horse trainer, farmer, Miss America, Dallas Cowboy cheerleader, President of the USA - my options and imagination were endless.  

   Then, I was 42 years old. It seemed options were diminishing. 

January 16th, 2013, I have 7" of my small intestines removed including the tumor that was found in December. 

The next day, my recovery started and sent our family on a path that sometimes felt as if we were walking on fiery spikes.  But at this moment in the hospital, it was all about wanting my boys to know I was there.  Truly there.  

January 18th, 2013  The only one in the room with me when the doctor came in was my father. As the doctor stood there, I could only feel emptiness.  Nothing else.  Just hollow.  

As Mom and David came in from getting a bite to eat,  I told them it was cancer.  Colon cancer.  Stage 3c. 4 out of 15 lymph nodes effect.  Stage 3b would have been a much better choice!  The statistics for survival are much better, but at least I was still a stage away from the ominous stage 4.

Gabe and Grayson each crawled up in the bed with me understanding at different levels our new truth.  How do you explain to family and friends the diagnosis?  How do you tell your 7 and 11 year old children that you have a disease and the statistics aren't in your favor?  One at a time, mom would take one of them down the hall for a walk. David and I laid out in careful words what had happened to me....to us. 

The boys were a bit dazed and concerned.  They just wanted me home.  Everything would be okay if we were all together at home.

I seemed to be able to handle the days with humor.  Nights, well, I still struggle with those. Humor became my survival mode. Whether it is a defense mechanism or instinct is unclear. Nonetheless, I knew I needed to open, vulnerable, and have a lot of laughter in my life.  

Healing from surgery was much quicker than standing up straight again after gut punch of the C word.  How would we make it?  How long would I be here?

Every day I think of these.  But anniversaries seem to bring all these memories flooding back.

We have been on the journey for years.  The path isn't always clear and it looks like we still have a mountain in front of us.

Some days we all still look/feel a bit dazed and confused.  But, we get up and keep going.  I want to go out and live life every day.

Today is no different.

Living.  Laughing.  Loving.  

Results: scanned looked stable. Not going for more chemo at this time. CEA rumor markers in my bloodwork when from 9 to 25 since August. 

Would appreciate prayers, positive thoughts, love and light. 

Love to you all!

2020

Wow.  Another year.  #7.  Okay, so this year, I will turn 50, but I will also turn 7.  Many people make resolutions to change the bad habits they have into better ones.  I beat myself up like most women and most moms over choices of words, foods, and everything else we are critical of when we look in the mirror or do reflection on the day.  Should I try to force myself:
     to go to bed on time every night?
    drink less wine?
     stop saying words that others have said are bad when I cut myself or can't make it up or down the              stairs in the morning without lots of grunting?
     feeling like I am less than because my body, skin and bones are shot and I don't look or act like                 my age?
     pretend I am not a passionate person that overreacts and regrets their emotions
And the list could go on and on!
So, how does one go about making a resolution when they are purely happy to be alive?
Well, I am not exactly sure, but this blog is the start.  I intend on acting more on my intentions, continuing to improve on what needs improving, taking as many negatives out and laughing at myself when I fail.
Maybe those are resolutions afterall.  Here is to 2020!  Wishing everyone a healthy, happy and successful year.
Here is our major party in the Sheets household!