Angry Birds

Bren and I are sitting here playing Angry Birds.  Here's what I'm learning:

1. It's no fun when you finish a level without using all of your birds first!  You don't have the opportunity to play with all the birds.  In fact, if you do well on a level, you might as well cry.

2.  It's not about winning (as we already learned), it's about the excitement of buildings falling, the blowing up of anything, and the pure joy of holding mommy's phone.

3.  Listening to birds is fun

4. Did you know that you can slingshot the birds backwards without any fear that you'll finish a level without using all of the your birds ... totally cool.

Hmmm... I lovc learning from my toddler.

Clean CT!

The Onc called to tell us that my CT was clean.  There's been no changes from the last CT.  To say that we're excited and relieved is an understatement!!!

Helping this old lady cross the street

When I think of helping others, I think of -
1. helping an old lady cross the street
2. picking up a lost article of clothing and returning it to its owner
3. volunteering at a soup kitchen
4. shoveling a neighbors walkway
5. Bringing a meal to an elderly man or a family with a newborn
When I think of helping others, I don't immediately think of responding to an online public forum. But, I should. People on public forums have helped me to navigate through the Hodgkin's battle and to fill in the blanks the doctor's inevitably leave behind.  These fellow Hodgkin warriors have helped this "old lady cross the street."

The Wait

That's Brennan ... yesterday.  He lined up the bears himself and sat between them ... himself.  He's so darn awesome.

I had the CT scan yesterday.  It wasn't a fun experience, but it's over and we are waiting for results... and waiting and waiting.  As I told Eric yesterday, if the Hodge is back, we'll be OK.  If the Hodge is not back, we'll be VERY OK.

Something I discovered recently:

A new drug - Adcetris or SGN-35 - was FDA approved for recurrent and relapsed Hodgkins in Aug or Sept of 2011 (that I knew).  This is the first FDA-approved treatment for the Hodge since 1977.  It is currently being studied as a front-line drug used in conjunction with AVD (3 of the 4 chemo drugs given to me).  The initial results are that 97% of interim PETs (after two months of chemo) were clean. (I read that right now the percent is 70-80% but that seems low to me depending on stage)  The possibilities of this new drug are very exciting.

My shoulder is very sore ... only on the side of my body touched by the Hodge.  I feel it as I write.  My jaw and neck are also very sore (It's impossible for the Hodge to be in the jaw; there are lymphnodes under the jaw but not in it.)  If the CT is clean, why do I have this soreness?  I can explain the soreness at the old tumor sites.   Hodge patients have soreness at old tumor sites.  No the oncologist didn't tell me this; my fellow patients did.  More on this later.  It's caused by scar tissue, chemo doing damage to the lymphnodes, and the way the disease grew in my nodes (Nodular Sclerosing HL).  Fine .. I have no problem with a little soreness; I can live with it the rest of my long life if need be.  Why is my jaw sore? Why is my neck sore?   hmmmmm... good question.

I just found out today that a few of my friends touched by the Hodge have read my blog and were helped by my blog.  This is a very big deal.  We all or most of us want to be helpful to other people, but to be told that we have succeeded at being helpful makes the bird's sing and the grass grow.  What an amazing feeling!  I love all my friends touched by the Hodge and will pray for continued happiness in your lives.

I think I say "the Hodge" 1,246 times in this blog.  Doesn't it sound cool?

A microphone

I still don't know what the swelling is, but it is definitely real.  It's not cool.  I've decided to think about this swelling and related issues between the hours of 8 and 9 pm today - after Brennan's gone to bed.  In other words, I can't think about it now.

The Robbins' fam had a great night last night.  We decided to go to our favorite restaurant ... Pizza D.O.C (on Lawrence east of Western.  Go... it's good).  It was packed! But we were immediately seated to the last or almost last table.  A few minutes after we sat down, the guitar music began right next to our table.  The musician was fabulous.  His singing was better than most Idol's, and he was playing a mean acoustic guitar.  Brennan immediately started dancing in his chair.  He does a sort of reverse spin with his arms, and grins from ear to ear (It's the same grin I fell in love with five year ago when I met Eric; it shows almost every tooth.)  It didn't take long for three waitresses to line up in a row, stop working and stare at Brennan.   The audience had an audience.  What an absolute joy!

Brennan has inherited his love of music from his mum and pop ...we love it so much.  Josh Mollan ... if you're reading this, we need to meet around a fire sometime soon.  Josh is my cousin and a magical musician.  I grew up listening to him play his guitar around the campfire.

Bren's experience #2 - Before we left the restaurant, the musician said "Bye Brennan" into the microphone.  The first time Brennan's name has ever been said into a microphone.

Drop kick

So, something is wrong. My neck feels swollen. Not from the outside, but from the inside. There’s also some pain in my chest in the “right” area … if you know what I mean (pectoralis major muscles). Now, what the hell does it mean? First, I worried .. that’s so last week. Then, I got real. What could it be? It could be an ear infection considering I think I have an ear infection. The chest pain could be muscular since I think I kinked my neck a few weeks ago and I still have some tight muscles.

What’s the next right thing to do? I don’t know, but here’s what I did.
1. I waited two weeks. Perhaps the symptoms would magically go away.
2. I scheduled an appointment with the Ear Nose and Throat doctor to check out the possible ear infection
3. I called my Oncologist’s office (the Onc). The crazy nurse who I know well, told me to go to the Ear Doc, possibly get a massage, and if the symptoms persist in 7 to 10 days, we’re moving up my mid-April CT Scan.

So, we have progress. It all sounds like a plan. But, of course I am thinking about the “what if.” Now, I think “what if’s” (for some people including myself) have a bad rap. Hasn’t anyone ever heard of the country song – Live Like You Were Dying. It’s a great song about how lucky this guy is to know he’s going to die relatively soon, yet he still has some time left to live. It’s important for me to know what the “what if’s” are… so here it is.

If cancer comes back, I’ll do radiation and a stem cell transplant. There’s a very high probability of not being able to have anymore children afterwards. There’s a 50 plus percent chance of living for more than 5 years after the transplant, and depending on how the transplant goes, the odds of living more than five years can be rather high. I will most likely have to spend a month away from my son which may kill me before the cancer.  There's a lot of blood transfusion involved in stem cell transplants, so please if you can, give blood.

Thoughts? Dying young OK but that would suck for my son. So, maybe I’ll put together a little book on my experiences or something. It would still suck for my son, but it would suck and he’d have a book. He likes books.  I think it should contain his experience's as well.

Yesterday, Bren's experience #1 was learning to drop kick.  Yes.... Brennan can drop kick anything.  Specifically, he likes to drop kick a stuffed Mater; he's a tow truck.  When's the last time you drop kicked something?