Sunday, November 29, 2015

It's Tonsillitis, Mono, Strep or Mumps

But my reaction to this simple sore throat is not reasonable.  Just taking her to Urgent Care and then to pick up meds made me very very grumpy.  

She is currently in bed with a very sore throat, a fever and no desire to move. It will be fine.  I will make a quick trip over the mountains and through the woods but it will be fine.  She is having her first real nasty bug since being released from her transplant docs.  Her immune system is less than that of a 4-year-old.  She is now considered "fully vaccinated" but we don't know if she has titers to the vaccines.  Yeah, did you know they can run a simple blood test and let you know if you need a booster?  One of many secret tests we learned about during the last 11 years.  
What I have learned from this experience is that my "okayness" is veiled behind a thin sheet of wet tissue paper.  All of the fear, anxiety, irrational worry and the rest is held back by a few atoms spinning around a few molecules and fibers.  

The question will be, how long before I am able to bounce back.  How long does this gripping fear last?

Hoping it goes before the last turkey sandwich. 

Friday, November 20, 2015

Cancer World Christmas

So before I begin, let's remember this entire post is from only my experience.  I don't have any significant experience with other hospitals. Also, I love Christmas more than anyone. 

What I love about Christmas is finding the perfect gift.  I have never been one to set a certain price or a certain number of gifts. It just has to be one perfect gift. It has to be thoughtful, and the
person has to know it was not random or obligatory.  Because of those rules, I sort of shy away from the tremendous gift giving to kids with cancer at this time of the year.  They are doing just fine. Lots and lots of people step up, and the kids have a great Christmas for the most part.  We all know it sucks and is hard but at Seattle Children's, nary a child is forgotten.  

So, The Wishing Rock Project is not going to do anything for the children.  We are going to continue to be there to support the Moms.  We are going to continue to visit the hospital, seek out new families and try our best to visit as much as we can.  Deliver as many Starbucks Cards, reusable bags, windchimes, and beads of endurance and, of course, some chocolate.  
We think this is a good idea because as soon as Christmas is over, Cancer is still there.  Moments of forgetting are real and necessary but having the strength to keep going is also a requirement. 

Please. after all the Holiday Season chaos is over, remember Cancer World is still there. 



Thursday, November 19, 2015

Getting It

I get it.  I understand it.  I have lived it. I have experienced it. I have witnessed it.  IT has changed me forever.  

I remember when one of my favorite mom's asked if living in Cancer World had changed me in any way.  I had not thought about the changes.  While your child is in treatment, there is so much else to think about; so many things to do; so much to worry about.  You are running faster than you ever imagined you could run.   It is overwhelming and more than you can ever imagine. Recently I have been thinking about it, a lot. 

There are lots of losses balanced by gains.  No one wants to hear about the losses.  I have stopped counting the times I have read the long slow creep towards death that many children make. Death is a reality for many children.  The longer you are around Cancer World, the more loss there is.  It makes me less than enthusiastic about the success stories.  When a family announces the last dose of chemo, the finish of radiation, remission, end of treatment, the end..... of __________. I shudder a bit.  I stick that bit of knowledge in the back of brain with a reminder to check back in a couple of years, and then in five years and then.... Relapse and the terror of a Bone Marrow Transplant. 

I just get it.  I want lots of remission/success stories.  I bet there are more than we know, but we don't hear about them. There is a group of families that just finish treatment, have a party and go on with life. They know they are lucky and are not bragging about it.  
The Relapse/Secondary Cancer Gang is loud and vocal.  It is necessary because if you believe you are scared the first time, the second time is over the top. It is not like a Relapse is getting a C. Relapse if an F.  It is hard to come back from it.  You need lots and lots of A's to make up for an F. Unlike college if you flunk you can take the same class again.  If you fail Algebra II, they don't make you take Calculus 4. 

In Cancer World, they bring out bigger and nastier forms of treatment.  Things they don't want to use unless absolutely necessary.  The Nuclear Bombs and other sorts of weapons of Mass Destruction.  Who knew there were so many ways to kill. 

As I sit here in year 11, I am beginning to forget what life used to be like when it was "Normal."  I don't recognize the landscape of my life in any ...way.  I see glimpses of it when I run into people I knew from before.  I am beginning to realize I have made an impact on people's lives in mostly good ways.  I was downtown and went to Cafe Zum Zum.  I walked in, and the owner looked at me and started to scope up my favorite.  He then chided me for my long absence, telling me he was still smoking because I had not been around to give him a hard time. 
It made me smile. While much has changed, change is part of life.  It is well past time I explore this new landscape.  When the
 Cancer World Asteroid landed in our laps, it forever changed the world we inhabit.

I get it. 





Friday, November 06, 2015

The "Giving Back" piece of Cancer World

If I had a super computer or a friend at the IRS, I would ask someone to figure out how many Foundations and other Non-Profit organizations are working to help those in Cancer World. My sense is that there are 1000's.  It makes sense because so many have been affected by this disease.  

After being in Cancer World, people either flee or feeI a need to give back.  One is compelled to try and return in some way the flood of what you have received.  It is important to shine a light on the path for those still in the dark place. Send something back to help those who are still climbing out of the despair which is Childhood Cancer.  

During the darkest times of our lives, we are given so much. It is impossible to meaningfully repay those that stepped in and lifted a burden from our shoulders.   The people that did our laundry took our dog, helped with trash, fed us, brought us groceries, prayed for us endlessly, and kept us in their hearts, never expected to receive something in return.  They were gifts.  Pure grace flowing from one heart to another. 

I have come to realize a small act. A small gesture. An instant of connection can make all the difference.  While I have a bit of frustration from not being able to organize folks and make things efficient, I know lots of people are making a little bit of difference, and a little bit is more than enough.