Monday, March 18, 2013

It's gonna start getting worse

No one wants to hear those words when they aren't feeling good.  "It's going to start getting worse" says the radiation oncologist after my appointment.  I had told him that I've been dealing with a lot of symptoms from my granulomatosis but not so much from radiation.  I explained that when I do have side effects from radiation they don't last until morning.  My sore throat is usually gone when I wake up.  It's bad at night but I can sleep it off.  He had to break my bubble with those words.  He then said they have a prescription mouthwash that will numb my mouth and throat but they don't give it to you until the pain really starts, and they don't mention it until you're into the process either.

Well, thanks.

He explained that last week was only 4 times, this week would be five times.  Things would start to happen and stick around.  He said side effects aren't instant ... they grow, and continue to grow until sometimes months after radiation is over.  But, the long term ones won't keep me out of the game.  It's the ones that are about to kick into high gear that are going to cause me some sadness.

I also emailed my rheumatologist because things just suck!  I am WEAK! I was standing at the counter, trying to get my pills out of their bottles and my legs were shaking.  I wanted to sit down.  When I left radiation today, I was going to get a soft burrito from the new Chipotle but the line was so long and I knew there was NO way I could even stand in line to get it.  I've never felt like this.  Yesterday, when I sat in the seat and looked at the entrance to Trader Joes and knew I wouldn't make it ... I felt defeated and down on myself.  Now, this was even worse.  I am winded and it takes every ounce of my concentration to tell myself to move my feet up and forward.
My doctor wanted me to keep him updated on things that were going on.  But, he apologized to me that we can't start the Cytoxan yet.  He explained that once I do, things in Granulomatosis world will start to get better.  My immune system is having a party right now, going after whatever it can get it's hands on ... and unfortunately, while I'm being shot up with radiation, I am at it's mercy.  He promised we would start the meds as soon as radiation was done and we WOULD take care of this.  He seemed genuinely sorry.  I mean, as genuine as someone can sound when emailing. But, at least he seemed to be more int he line of yes, I have this disease, yes we'll fix it.  He gets it now.  I know he didn't want me to have it.  However, I do, what can we do but fight it?

Last night I got to spend some time with my family.  There were a lot of stories told about my parents.  It made my heart ache for those that aren't here.  Man, what I wouldn't give to be able to talk to my Dad about all that is going on.  Of everyone in this world, he is the only one who would understand.  He also had a diagnosis that required explanation whenever brought up.  Rare diseases and a sarcastic sense of humor.  That sums up Dad and I.  Ha Ha.  He would understand the frustration, although, he seemed to have the most amazing doctors ever.   I've yet to decide about mine.  But, anyway, what I was talking about is that I miss them so much.  It was good to talk about those funny stories though.  I have so many good memories in my past.   It reminded me that I have had a lot of life in my years ... even if I haven't used a lot of them to their fullest potential.  I could write a book of all the funny things that happened in my non-conventional family.

I'm trying to stay unruffled.  I'm trying not to stress about the things I don't have any control over, but, I'm not being successful.  It's hard to shut them out.  Taxes.  Paying Bills. Those weigh heavy.  I know my health should be on the front burner and it is ... it's just taking care of my health means hanging out at home, not working, while bills and taxes loom.   It's always been in my nature to jump to action, load up on hours, get things paid.  Stay ahead of the game! Now, I'm sidelined, and stuck, and forced to just think about it.   I feel helpless and stressed.  I know my health will be better.  That's the only thing I'm sure off.  Radiation will be done, cancer will be gone ... and then we'll kick Wegener's/GPA into hiding for awhile and ... then I have allllllllllll that debt waiting for me.  It's hard to ignore it.  It's like there's these big Emerald City doors that will open and release me back to my life ... but the Wicked Witch is standing on the other side with a giant bill from the IRS.  

I wish I could just see those doors, and know I can deal with what's on the other side later on.  But, I can't.  I'm trying.  I am.  I promise I am.  Maybe I should get back to reading, then I can just deal with someone else's issues and pretend mine don't exist?

I'll be back soon ... maybe tomorrow ...

Oh, I did write again today.  5075 words.  A little more than last time!  It's a start.

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