Laptop Kindness

I haven’t written in this blog for quite a while.  I am sorry. 

In fact, there are many other “normal” things in my life I haven’t done for quite a bit, and there is a good reason for that.

Actually, it is a BAD reason.  A horrible, anger inducing reason:  my sister Annette has been diagnosed with brain cancer.  Glioblastoma to be precise.  I hate saying (even typing it).  I hate the reality of it.  I hate the severity of it.  I hate the look in people’s eyes when they hear it.  I hate that John McCain just died of it.  I hate SO MUCH about it. 

Annette a couple of years ago, caught mid-jump :)

But it has happened.  Our family is, of course, reeling.  She is young, only 57 years old.  She is otherwise healthy.  She has 2 grown kids and 4 adorable grandkids.  She has SO MUCH TO LIVE FOR.  She had surgery to remove the tumor (after several days in the hospital post-diagnosis waiting for the swelling to go down and the surgical team to be assembled) on July 30^th.  Many fretful, stressful days later, the final pathology report finally came back and told us what we had all feared: it was glioblastoma 4, an aggressive form of brain cancer.  The surgeon did a great job with the operation – got all he could see with a microscope.  She starts radiation and chemo this week (how sucky is that, that for this form of cancer patients have to do both forms of treatment simultaneously).  Our family is doing what we always do: SUPPORTING ONE ANOTHER, LOVING ONE ANOTHER, AND EMBRACING THE GOOD MOMENTS (that do show up, though interspersed with the sucky ones…).

Annette minutes before being wheeled in
brain surgery.  I told her she looked like a big
BAKED POTATO.

I am not the type of person to ask for help.  I am guessing many of us would say that phrase, “I don’t ask for help”.  Seriously, I am the person who GIVES help, I don’t ASK for it.  And I don’t say that to brag, because when I look at that part of my character now I see that it is a serious flaw, not something to brag about.  Not being willing/able to ask for help means not being able to connect with others, not offering them the opportunity to do for me what I so love to do for others – TO HELP.

And look, I am not looking for life lessons right now.  At this point I am looking to keep my head above water, to be able to function enough to continue my professional life so I can keep my job (and therefore continue to pay our mortgage), and to spend time with people I love.  But damn it if life lessons don’t keep seeking me out…

So yes, this experience may teach me more about being vulnerable enough to ask for help.

But I refuse to label that a “good thing”, because I am not going to say “good things” come out of this horrible disease.  (Though I will admit that learning to ask for help is something that I needed.)

In keeping with that, if I can find the head space to write and take photos, this Kindness Activist blog should be cranking out the KINDNESS stories soon, because kind people are coming out of the woodwork to help my sister and our whole family during this ordeal. 

So, let’s meet the first Kindness Activist to be featured here because of dumb stupid unfair stinky glioblastoma (angry much??):  LEAH!!

Leah and Evan on their visit to Florida (he loved the ocean)

Leah is a woman I met a few years ago when I offered up our basement apartment for sign language interpreting students from my alma mater to stay in while studying at Gallaudet (a renowned university for Deaf students located in Washington DC).  She and her friend Lauren stayed with us for a couple of weeks and we became friends. 

Fast forward to now – Leah is a successful interpreter, awesome mom to her son who just started second grade (he was just a toddler when she was brave enough to come across the country to further her education), and an all-around great person.  She and I keep in touch via Facebook, see each other once in a while in person for coffee in Omaha, and she and her son came and splashed around in the ocean with us in Florida for a few glorious days, too.

Back to my sister Annette:  she was encouraged by her physical therapy team to write a blog to talk about her cancer.  The premise was that writing it would give her something to look back on when bad days rolled around, and that by reading past entries, she would see that, actually, she has come quite far since this all started and be motivated to continue to push forward.  I am not sure that the therapy team meant for her to share her blog publicly, but once she had the idea to do that in her head she would not be stopped.

Annette with her kids and grandkids the evening before surgery

She is writing and sharing an amazing blog which she has titled “Let’s Kick Some Mass”.  She has been so brave and authentic – sharing her thoughts and feelings about this whole experience.  When she started the blog, she couldn’t move her left side much.  It had been grossly affected by the swelling in her brain and the surgery.  She was also quite medicated sometimes.  Those things would have made it very difficult to TYPE, so she and I began the process of writing her blog TOGETHER.  Wait, that is wrong, SHE WROTE IT, I simply transcribed it.  She and I sat in silence.  When she talked, I typed.  She would ask me to read aloud what she had composed – over and over and over.  Each blog entry took a couple of hours.  We shed tears.  We laughed (sometime laughing so hard, we shed more tears).  But the process was:  she was the author.  All thoughts, all words, everything was HERS, I was just the fingers on the keyboard.  I loved our time working on her blog together.  It was quiet, magical, and special.  I felt (still feel) very honored that she allowed me to support her on such an important and personal task.

Then she began to get healthier.  “Lefty” (as we called her weak left side) started getting stronger.  She got better at walking.  Took less meds.  She was becoming more independent again, as she had always been.

She tried to compose her blog entry on own using her phone a couple of times, but it was super difficult.  One problem is that she got her new phone the day she got sick.  This whole illness came on so suddenly – one day all 3 sisters were in Florida kayaking, three days later she was in the ER with strange symptoms that turned out to be a mass in her brain.  So, the phone was brand new and she had not had time to figure out how to use it.  Plus, she was writing very complex, emotional, difficult things, and a phone was not conducive to that kind of work.

Also, I (her typing fingers) had to leave town.  As much as I wanted to stay in Omaha, we had a vacation home in Florida that we left at the drop of a hat when she got sick, and we had to go back and close that up.  Plus, we had to drive our car back to DC and be there in time for my sweetheart to start teaching this semester.  So, I booked an airline ticket to go home and get some loose ends tied up, then return to my family in Omaha. But that meant being away for two weeks, and surely she would need to blog while I was gone.

Team Nettie party at the hospital - shortly after pathology came back.  The fight was ON!

So, I got brave and decided to ask for help.  I posted this on my Facebook wall (hiding Annette and her kids from the post, I am not sure if that was because I wanted to surprise her if it all worked out, save her from disappointment if it didn’t work out, or because I was embarrassed to ask for help…)”

“Omaha area friends - does anyone have an extra laptop that they no longer use?? My sister has been writing a blog about her glioblastoma and we have been using my computer to compose it. But I have to pop home for a couple of weeks, and it would be lovely if she had a laptop she could use. Writing long stories (and her stories ARE LONG  :) ) on a cell phone just doesn't cut it. She would be thrilled with any brand/type - Apple, PC, it doesn't have to be fancy, just functional. If you have one laying around collecting dust, we will be happy to come pick it up anytime!! Recycle the old fashioned way - by giving to a friend!! Thanks for considering. #NotUsedToAskingForHelpButTryingToDoItMore”

Not 30 minutes went by after posting before the first offer of a laptop or iPad popped in.  Then another.  Then another.  4 people offered to let her use and/or keep the equipment they had.  I was so inspired by the outpouring of help!

In the end, we got Leah’s laptop.  It was just missing the plug, which was easily replaced at Best Buy.  It is a beautiful, shiny, well-functioning computer and is PERFECT for Annette.  I put a photo of us 3 sisters on the beach on the home screen and got it set up with her “favorites” online, which of COURSE includes her blog!!

Tada - her new laptop!  (And yes, she looks THIS AMAZING just 3 weeks after major brain surgery)

Yesterday my sweetheart and I made the 13.5 drive from Florida to Virginia.  At around 2:30 am EST, Annette texted me.  She was working on her blog (the first one she had typed all by herself) and was running into a couple of glitches trying to POST what she had composed.  As soon as we pulled in the driveway I set up my laptop so she and I could be looking at the same screens and we talked through it.  We didn’t hang up until around 3:15 am my time, so I think she worked on that blog entry for a good 4 hours. 

Because it is a laptop, she can carry it anywhere to work on her blog

 BUT SHE DID IT.  (Oh sure, a pop-up screen foiled the final attempt to publish, but she had worked out how to copy and paste it to me, her back-up editor, so as a team that puppy made it online!!)

Leah, your laptop offers her independence.  It gives her a way to look at the photos she loves in a much larger format.  It lets her express herself – her happiness, her fears.  And it will allow her friends, family, and strangers she has never even met to follow this journey.

THANK YOU FOR BEING A KINDNESS ACTIVIST Leah.  Your generosity means a ton to our family. 

If YOU would like to be inspired and informed, please read Annette’s blog.  She is doing an outstanding job writing it.  You can see it here:  Let's Kick Some Mass

P.S.- I will be asking for help more often.  I am learning.

P.P.S. – There are loads more Kindness Activists that have appeared during this difficult time.  I hope to find time to recognize many of them here.  Those entries will not be as long, since I have laid the groundwork with this post and filled you in on what is happening.

Bonus photo:  sunrise sisters.  Birthday celebration on the beach in Florida just 5 days before her diagnosis.