Phone calls, LiveStrong, e-mails, & want to do’s…

Just when I think things may be ready to quiet down, I seem to find more things to be taken care of. 

Nathaniel & I fed the horses this AM… rather I toted him around in the backpack & sweated profusely doing all of the work!  

I got a phone call from a friend & former co-worker & we talked about life without John.  She’s a very positive person & she said… “keep fighting, you’ll make it.”

Nathaniel & I went to town to visit the cemetery.  I feel like I have to go everyday.  Sometimes, I just stay a minute.  Good thing it’s close!  We went to the post office, the  grocery store, ran into John’s aunt & enjoyed seeing her, and bought baby food & milk.  No matter what happens… the kid, the horses, & the cats still have to eat 🙂  I think I’ve mentioned the emotional moments that come out of the blue, when I’m not expecting them.  In the store, I went through the self checkout & the employee commented on how well behaved Nathaniel was and how he was so quiet & watched my every move.  It was all I could do to not cry!  WHY???  I just thought, how proud John would be of Nathaniel.  He’s (usually) such a well behaved kid & quite a charmer…. not to mention he’s handsome like his daddy!  So, in that instant of happiness there was such a feeling of sadness and missing John.  Strange how that all happens.  Luckily, I was able to hold back the tears… I can only imagine how befuttled the poor cashier would have been had she given my child a compliament & I started bawling! 

I made so many phone calls today… scheduling appoinments, finding out about child care benefits from work… I THINK I should qualify… it will help a little bit…  Sometimes a little bit is better than nothing. 

I also contacted the Lance Armstrong Foundation to get more info about the Philly Challenge.  I had a LOVELY conversation with Dylan & told him what a fighter John had been & how much John suported the Lance Armstrong Foundation.  John was a true believer in the organization… Here’s a link in John’s own words.  Here’s John’s page for this year’s Challenge.  Team Smitty is up to 21 people with $6061 (after I add a few donations & maybe more than that… I don’t believe the Team Smitty Event at Stan & Joe’s has been included yet).  I’m just $105 short of my goal (have a donation to add).  So, hopefully, I can make $500.  We’ll see. 

I also looked through John’s e-mails to see if there was anything I needed to take care of.  Boy that was bittersweet… reading what he wrote was like having him here with me again and it made me both smile and miss him terribly at the same time.  I found the e-mail where he had written to Rising Sun’s chief telling him that he wouldn’t be able to handle the fire trainer anymore.  John wrote the grant that awarded the fire trainer & John was one of the main people who operated the trainer.  It now bears a plaque dedicating it to him… The webpage now refers to it as John P Smith II Training Trailer.  In his e-mail he wrote, “I‘d like to help out with the grants but I’m not sure how much of my time this cancer things going to take up. It’s bad Karl. It’s spread to my liver and bones. I’ve got to get an MRI to see if it’s in my head. The doctor’s told me I can’t go back to work & suggested I apply for disability & social security. The treatment options are limited and not very effective.  

I feel fine, but the odds seem stacked against me.”

In a letter to his cousin, he wrote of his IL2 treatment, “Hopefully we can get this crap to stop growing at the least, or get rid of it once and for all at the best.” 

And an e-mail to his cycling buddy & co-worker that he wrote after we found out about the stage IV diagnosis, “went to the doctor today. He said the PET/CT showed “inoperable” lesions on my liver and in the bones of my pelvis and femur. Plus some lymph nodes in my groin– I think, need to double check the terminology– in addition to the spot in my neck. The PET isn’t able show stuff in the brain, so I have to get an MRI to see if it may be there or not.

 

He said I can’t go back to work and suggested I apply for disability & Social Security. He made it sound like I could snap my leg or hip by stressing it… I think he was serious.

 

He referred me to another doctor. Had an appointment. There’s a chemo-type treatment option… I have to decide what I want to do. The doctor is recommending a clinical trial which would start in 2-4 weeks. It’s basically two types of medications taken in pill form.
 
My other option is the “standard” treatment which is pill form & included in the trial.
 
Another option is high-dose IL-2 (one of meds I’m currently taking- the one that I have to take sick leave for) It’s given IV and in the ICU because the side effects are so bad.
 
She’s also sending my stuff out to Hopkins & the NCI to see if there may be other options. I need to do some research and may look for someone to give a second opinion… not sure who I need to look for atm. What she said seemed in line with everything I’ve read about though.

 

The pills have a 10% chance of short term improvement. The IL-2 has a 15% chance of long term improvement. She recommended doing the pills first and the IL-2 later if need be.

 

I asked her how much time we had to screw around with and she said it depends on how I respond to the treatment. Considering that 4 1/2 months ago none of this crap was around I’m thinking we don’t have much time.

 

I’m not sure I like the idea of waiting a possible 4 weeks for the clinical trial to start…

 

I think I’m pretty much fucked. The good news is that I don’t have to go through surgery on Monday and I no longer have to give myself shots. They cancelled the surgery because it isn’t going to do much good to cut out the place in my neck when I’ve got all the other stuff going on and it’s an easy way to judge whether or not I’m responding to the treatments.

 

I’m just not sure about a lot of things. I’ve got a lot of stuff I need to get in line in case the worst happens.

 

Thanks for being my friend. I hope I get to ride with you in the near future.”

Sadly, John never got to ride his bike again. 

One of the things he wanted to do so badly was to take Nathaniel on a bike ride.  When I went on the walk at the dam, I thought, wow, this is a nice flat trail and no traffic, it would be perfect for a bike trailer to take Nathaniel on a ride.  Guess, I’ll have to get a bike trailer and make it happen. 

John also wanted to play “Return to Pooh Corner” by Kenny Loggins for Nathaniel on the guitar.  We bought an acoustic guitar for John, but shortly after, he was too tired and sick to play.  I don’t know the first thing about how to play a guitar, but I want to learn.  Hey, I’ve already got a brand new guitar 😉  Might as well use it.

Another thing that John wanted for Nathaniel was that he learns how to play catch when he’s old enough.  I think I’m going to have to recruit somebody for that one… I don’t think my ball skills are even on the level of “throws like a girl.”  Any volunteers?