Good News, Good Weekend

We kicked this weekend off with good news.  Friday afternoon, I got a call from the head of the oncology Patient Assistance Program (PAP) for Novartis, Alissa.  She started our conversation telling me that they did not need to provide PAP to Ron because Medicaid would pay for his monthly Sandostatin injection.  Exasperated, I launched into my spiel, which went something like this, ‘Of course Medicaid will pay for it.  Now.  Today.  Because we are not in hospice.  We were in hospice because someone from Novartis said they would pay.  Then they wouldn’t.  And hospice won’t pay.  And Medicaid won’t pay when he is in hospice.  So he had to drop out of hospice in order for him to get his shot.  So you are essentially making him choose between hospice and his shot.  And you have no idea how much his shot helps him.  Without it . .  .’ And at that point, she was saying, “Stop.  Stop talking.  Stop.  We will just do it, OK?”  And I was like, ‘OK.’  No, really, I was beyond OK.  I was all over her with appreciation and told her how happy she had made us.  She gave me her full name and direct phone number and said if we ever had any problems to give her a call.  She said she was telling the representatives she supervises to mark the appeal approved and to send out the shots ASAP.  HOORAY!!!!!!!!!!!  YAY!!!!!!!!!!!!  The big pharmaceutical company came through for us.  They do have hearts!  Ron and I hate the hassle we have been through over the past month with all of this, but that does not change how grateful we are that it is finally over and we can breathe easier knowing he will get the treatment he needs for his symptoms and the hospice support we both need.  When we meet the new oncologist tomorrow, we plan to get a referral back to hospice. 

The good news, paired with how well Ron is doing since his procedure on Friday, have made for a nicer, more worry-free weekend than we have had in a while.  He was a little sore and very tired on Saturday, but we took it easy.  The wound nurse came out and took off the dressing that the hospital gave him.  We were all relieved that the hole where they took the Pleurx tube out seemed small and was not leaking or weeping at all.  She said it looked good, but not to be surprised if it did start to leak more as his belly gets fuller.  She changed his dressing and used the fancy silver one that prevents infection.  She said we didn’t have to change it until the dressing is soaked half through.  Today, it appears to be pretty dry under the Tegaderm, so we left it in place.

Before and after the nurse left yesterday, I worked on shoveling, chopping wood, cleaning the house, and stoking a warm fire.  When chores were done and Ron was still tired, I alternated between dozing and reading on the floor beside the wood stove, which was heaven and something I have not had time to do yet this winter.  It was so nice.  My brother, Dustin, and sister in law, Carrie, came over with sushi (just Japanese noodles and no sushi for me) and Coke, since Ron and I had been craving Coke, but not wanting to leave the house.  It was great.  We ate and played Skip-bo and just talked and joked and told stories.  This morning, Ron’s brother, Doug, and friend, Brian, came down from Alma and took Ron out of the house for a bit.  It was the first time he left the house, other than for doctor’s visits, since last Sunday when he sprang a leak at the breakfast table.  He really is not supposed to leave, but he was going a bit stir-crazy being stuck here all the time.  So, they just ran a few quick errands and had him back here to relax and watch a movie and then we all had a late lunch.  Ron was tired out after all the excitement, but I know it means so much to him to have visitors. 

Basically, it has been a pleasant weekend and I am sad to see it end.  This week brings more appointments and trying to figure out what to do about work.  I had planned to be home to take care of Ron this week, but he is doing so well so far that I am not sure I am needed.  We will see what happens after his appointment tomorrow, but if he gets back into hospice, there is a chance I will wind up back in the office after all.  And yet I don’t feel quite ready.  I have been so stressed for so many weeks . . . and especially since losing hospice on 1/3/12 . . . that it all seems surreal, what has happened, and I am just tired.  I am really tired.  It is like my adrenaline has been kicked up for these past several weeks because I was in such a big fight, advocating for Ron’s care.  And now that things are finally starting to fall into place and he is more stable and I am starting to relax, the fight is leaving me and I just feel exhausted.  I know it won’t always feel like this.  I will get my energy back.  But for now, I just feel compelled to take it day by day and see what tomorrow brings and how he is doing and how I feel before I make any decisions about what happens next, with work or otherwise.  

If anything, this whole cancer thing makes me really look at my priorities, especially in terms of what I worry about.  And sometimes, when I find myself in those special moments, when I am reading by the wood stove and look up at Ron at the couch and he is looking back at me and I feel happy – I just let myself feel it.  I don’t worry about what I should be doing instead or how I might be wasting valuable time just laying around reading.  I just accept it as a nice moment.  We have had a few of those over the weekend.  Anyone who knows me and my near-constant level of guilt, judgmental self-talk, and OCD-like worry knows this is HUGE progress.  I don’t really want to thank cancer for anything, because I fucking hate Ron’s cancer with a burning passion, but I am glad that this whole process has allowed me to accept and enjoy the moments like these instead of second guessing them.  Here’s to the quiet times, and to many more of the same.