Thursday, July 09, 2015

Back and Forth

In and Out
Over and Under
Up and Down
Happy and Sad
Joy and Sadness
Fear and Bravery
Determination and Capitulation
Despair and Faith
Agreeable and Recalcitrant
Healthy and Sick
Life and Dead
Obstreperous and Tractable


This list is much much longer.  The one that we focus on is

Remission and Recurrence or NED and Recurrence.
I thought it was bad that we don't ever get to know if "Recurrence is going to happen or Remission Sticks.  It is such a roller coaster and so much happens in between.   We are close to the four-year Relapse mark.  We have passed the 11th Anniversary of being in Cancer World.  I am finally starting to breath again.  AND THEN.

She gets a stomachache, or she is really tried or her back hurts or there is a small weird bump or her eyes keep getting conjunctivitis or ____________ fill in the blank. I don't like to be a constant complainer or worrier but I at my core I am worried.  I am worried.  That little voice sits on my shoulder and keeps telling me to not let my guard down.  I am not out of the woods.  There is no exit to this genuinely secret glen.

I visit with families that have just entered Cancer World.  I spend time with them imparting secrets about hospital living and Cancer World survival.  I go to kid's funerals.  Those that Cancer destroyed.
On one day, I visited with a mom who's 4-month little girl was born with a tumor the size of an orange and the funeral of a fourteen-year-old.  Needless to say, I had ice cream for dinner.  It was all too much.

Many think I am just crazy to keep visiting and going.  I don't want to be one of those people that walk away from family and friends when it is tough.  I have seen that happen with many.  It is too much most of the time but in reality it is impossible to do it alone.  I could never have done it without those that stepped up and lent a hand and gave at the perfect moment.





Thursday, July 02, 2015

Been Dragging My Feet

For reasons unknown, I have not been able to make myself go to Children's Hospital with Wishing Rock Bags.  I have them packed, I have sorted, I have great new People Magazines, but I have not been able to go.  I plan it and then when it is time to leave, I take to my bed to watch Keeping Up With the Kardashians.  Yes, it is bad.  It can be very very bad.  

I had a million and one reasons for not going.  I was tired, I might have the bubonic plague, there is a terror alert, and I am on the top of the list. They won't let me in. The Seattle Guild Society was right, these silly little bags are meaningless. 
Then I had to go.  I made myself go.  I told someone I was going.  I had to do it.  And I did.
I went.  And I remembered why I do this.  I let someone tell me their story.  I listened to them, told them hospital survival secrets and let them know about Midnight Bacon. 

Something about the act of giving back and listening and just being there is so potent. We don't even have to know each other's names we just know.  We know the deep-seated fear, the questioning of everything that might have caused the issue. The wondering "WHY" no one found it earlier. The realization that no matter what you do or what you let them do to your children, it might not be enough. It might not work.  It does not work sometimes.  It might come back. The treatment might bring more cancer and an endless list of long-term side effects.  Knowing the fear never goes away.  Knowing the future is something other's can focus upon because we have just this moment in time.  

Life is so much more than what we had planned and more about what we can do this moment.  It's okay to watch your friend's lives continue.  Plans being made.  It is part of your stepping off the path.  

When I was in highschool, I read a Ray Bradbury short story about a man that returned to Dinosaur times to hunt.  There was required path, and you were only to kill the appointed Dinosaur.  It had been determined it would die soon and not affect the timeline.  This man stepped off the path and upon return he found a small glistening blue butterfly on his boot.  When the doors opened to return him after the hunt,
everything seemed familiar but were slightly off.  It was not the same.  It is never going to be the same.  No matter how hard we try and no matter how hard we pretend and no matter how hard everyone wants it to be the same, We stepped off the path.  

The only thing we can do is help those behind us.  
So.... I will consider myself cured of the plague, be kind to security and keep at it.  Besides, I'm almost caught up with the Kardashians. 






Monday, June 15, 2015

Rest-in-Peace....... Really

I suppose if someone dies in a war. Or if they lived a life of hardship and stress.  If they are from a country where bombs drop all the time.  Rest-in-Peace would be a great thing to say.  Simple, life-affirming, considerate. 


But... you can hear "the but" coming can't you.  
 BUT  I certainly am not tired.  I don't need to rest, except for nap time some days.  I have way too much to do.  I don't have time to rest.  I don't want peace and quiet.  I want to make a difference in this world. I want to make sure it is a better place than when I entered.  I want to find out stuff and learn stuff and grow stuff and read lots of good books and make up countless recipes and have wine on the deck, and the list is endless.  

I don't want to Rest-in-Peace.  I want to RIP through life knowing it is a precious and limited thing. If I feel like this at 60, I am sure the children we watch die, day after day have other plans.  Seattle lost another one on Sunday.  Ahmie Njie was only 14.  She was full of life and cancer.  They don't go to well very often.  Cancer is atrocious at getting along with its host.   It kills.  In unthinkable, painful, sad and depressing ways.  It takes so much with it when a young one dies.  
Ahmie is another victim.  One that touches each of us.  I didn't understand how it all worked until I was reading a book that talked about a quantum physics concept of "Quantum Entanglements."  There are those that believe particles in far reaches react with each other even when they are far far from each other.  Cancer Moms have the same thing going on with each other.  We connect when we share our stories, and we continue to feel the story as it proceeds.  We react. We respond. We reach out. We recoil. We feel.  The empathy runs deeps and long and reaches across the boundaries of the world.  

Ahmie's Mom chronicled her story and shared the ending with the world.  I don't have the ability to understand or know what Gienna is feeling or thinking right now.  I would not presume to have words or answers or even know the right questions to ask.  I do know there is an ache in my heart.  A need to take many deep breaths.  There is an empty place in the universe.  A void was left by a child that was not ready to rest.  She had too many plans and too many ways she wanted to RIP through life.  

We have become "Entangled".  


Friday, June 12, 2015

She was Surprised and I was Relieved.



FOR IMMEDIATE RELEASE

Mary-Elizabeth Sierra Lanham Named to Dean's List at Gonzaga University


SPOKANE, WA (6/12/2015)—Mary-Elizabeth Sierra Lanham, a resident of Lynnwood, WA has earned placement on the Gonzaga University Dean's List for Spring semester 2015. Students must earn a 3.5 to 3.69 grade-point average to be listed.
Gonzaga University is a humanistic, private Catholic University providing a Jesuit education to more than 7,500 students. Situated along the Spokane River near downtown Spokane, Wash., Gonzaga is routinely recognized among the West’s best comprehensive regional universities. Gonzaga offers 75 fields of study, 25 master’s degrees, a doctorate in leadership studies, and a Juris Doctor degree through its School of Law.

Among her circle of friends, this is not such a huge thing.  It is something that kids do on a pretty regular basis.  She has always been a good student and sometimes even amazing.  But it is not easy and it is something she works so hard at doing. 

Every grade, every point, every single test and quiz and report is the result of hours of study and preparation.  Radiation and Methotrexate into her spinal fluid have robbed her of many things we take for granted.  She can't memorize.  She can't keep something in her short term memory if her life depended on it.  All those people that memorize, drop the info on the page and then forget have a skill she no longer possesses.  She has to do an extended solitary process of making sure she understands and learns the material.  

She does not believe she made the Deans list and even argued with the Registrar about the posting.  

I have watched her spend every bit of her energy on being a good student.  Lots of her fun time in life was spent in the hospital and then studying or getting ready to study.  

I think back to the first time I saw the 12 inch lead door closed her into the Radiation Suite.  I knew the damaging radiation was destroying more than elusive cancer cells.  I have come to appreciate how much was destroyed.  I think it is going to be okay.  It just made the hill higher, slicker, rockier, and more difficult.   

It didn't make it impossible. 


Tuesday, May 19, 2015

Emily is Gone

Another one... Another Loss.  It sometimes seems like a steady stream... She was a strong determined little girl. Her family was with her all the way..... Her family is exhausted and need lots of good energy sent their way.  Sometimes when I post these things people tell me they are sorry for my loss.  It is never about my loss... it is about the world's loss.  We all are less for what has happened here.  

Childhood Cancer is a tough one.  

Monday, May 18, 2015

Just Sent MEB to California for a Couple of Weeks ...... I am So So Lucky

As usual, this summer is not working out as I had anticipated.  Thought the child would be working in Spokane but as it happens, she is on a different kind of adventure.  Her summer is falling together with bits and pieces of this and that. 

Camp Sparkle for Gilda's Club will take two weeks.  It is a camp for kids that have had cancer somewhere in their lives.  Moms, Dads, Sibs... They spend a week doing healing things.  Fun things.  They all love Meb because she knows, she knows what it is to have cancer and to have lost friends to cancer. 

She is spending two weeks with her Uncle David, maybe more depending on how his summer goes.  She is going to get to work in the office with his great assistant Donna and learn the business side of things.  She is great at doing those sort of things and had lots of organizational skills. 

She wants to spend some time with her Grandma in Eugene.  Maybe for the Country Fair.... Maybe some time on the water somewhere in the Puget Sound,  Maybe some time in Central Washington with a metal lathe and some cutting torches,  Maybe.... The Summer is full of maybes... and Maybe that is okay. 

I decided yesterday that Maybe this is just a great gift from the Gods.  Maybe I we just need to settle an unusual summer,  one not dominated by BMT fears.  Maybe this is what it is supposed to be.  I just keep receiving notices and reading posts about kids that will not be spending the Summer with their Mom's.  

Our little world of Childhood Cancer is losing some bright futures right now. Young lives are winding down and people are just down right sad.  No other word for it.  Sad.  Emily seems to be done after cramming so much into her "life list".  This was the post this morning from her family.
We are losing our Emily. She is still paralyzed. I thought today would be the day, but this little girl is a fighter and came back to tell me how much she loved me, that I am the best mom that she could have asked for, and that she is so happy that she chose me to be her mom. She is not in pain anymore, but is struggling to breathe. Please pray that God brings her home to him, so she can dance in fields of flowers. And run and play with her friends Becca, Albert, and Sarah. And be greeted by my dad and her Nonna. This is heart wrenching to watch. As selfish as I want to be, I won't. I need God to answer my prayers!
This is a very personal time for us, I ask you please to respect our privacy. I have shared her for four years, i need this time for me. I am spending every second with my baby. It hurts so much to imagine that I will never have another hug or kiss from my girl. Or hear her say "mommy" the special way that she does. This hurts so damn bad. 

Enjoy every breath your child can take with ease.  

Sunday, May 10, 2015

Peeking out of the Rabbit Hole....

We are coming up on 11 years from the moment that Doctor Balter looked into Mary-Elizabeth's eyes.  Eleven....  People talk about water flowing down a stream or river and washing away the  pain and fear and despair.  After 11 years, I am sure I have seen these same water molecules more than one time. 

Running water is very healing.  It heals our souls and allows us to move forward.  It takes great efforts to stop water.  It will travel great distances and make amazing detours to get where it wants to go or must go.  Sort of like Cancer Moms.  We are pretty unstoppable. 

I spent the week-end with a bunch this week-end.  I was invited to join nine other women in an amazing house in Leavenworth.  We were taken care of in a wonderful way.  Laughter, Wine, Good Food, Quiet Time.  It's so weird to be able to walk into a room and not have to introduce yourself.  The very fact you are there is enough.  No on is "there" unless they have been through the entire process.  We are Moms of Cancer Kids.  We are the lucky ones and have kids that are still with us. 

I have been trying since the beginning of all of this to figure out how to heal. The entire process has been so difficult, time consuming, soul consuming.  In all the rush to keep Mary-Elizabeth alive and handle life, lots gets pushed aside.  I know people are just sick and tired of hearing me talk about being a Cancer Mom, other kids dying. All the struggles with Hospital food, insurance companies, medication side effects, cost of job loss, cost of unreimbursed medical stuff, everything.  It should be over, it should be done but I have not been able to put myself really back together.  

As I look back, I had started the process three and a half years ago when Relapse reared its ugly head. Things were starting to turn around.  I was flirting with maybe having a real life.  I was working on my weight.  I was paying attention to the new lines and wrinkles that had appeared and put some of the world back into perspective.   

I have been bashing around and trying to figure it all out.  A bit of escape, a bit of fun, a lot of miles on the car. Some pretty special times away.  Cruise to San Diego,  Time on a beach on Camano Island, time alone in my house, time..... but inmost cases I was still worried about someone or something.  There was always an element of care taking going on.  I was worried about the people with me or needed to do something for someone.  

The Leavenworth Retreat for Momcology was so different.  We were in a wonderful place but we had only one thing to do.  Be pampered.  Food, treats, massages, henna tattoos, quiet time.... I even tried Yoga.  It was so amazing.  Time and NO worries was the required activity.  Time with coffee on a deck and a bit of wine.  Some much needed retail therapy and time to process, listen, commiserate.  

Most of us have a strong support system.  People that made it possible for us to come out of this tornado with some semblance of a life.  They did our laundry, sent us money, fed us, brought us wine, cleaned up our back  yard and were on call for everything we were willing request.  It was remarkable.   But.....

There is something so healing to be with your  Peeps... Those that have walked that mile and been on the same journey.  We don't have to explain the anxiety, the fear, the anger, the disappointment, the loss of the certain well planned future of our children
.  We are freed up to speak and know we don't have to explain.   I came away in a completely different space.  As I packed my bags and combed my now curly hair, I felt restored and revived in a great way.  I felt encouraged and newly connected to those that spent the week-end with me.  

Let's be honest.  We need way more slumber parties.  The YaYa Sisterhood had much more content about the needs of women to help each other and we should pay more attention.

Time to spread the word about Momcology and work on making more retreats happen.