It’s Time To Stop Fighting It

voices in my head signNo matter how old you get, or how much stuff you think you know, there are a few little traps that still snag us.  Steven and I both know that enjoying life to the fullest really depends on living in the moment.  As I key those words, I’m realizing that I suddenly sound like one of those yoga pant-wearing, “Nameste” quoting Mellow McMellow nuts…and I kinda want to punch myself in the “OMMMMM.”  But if I dig down deep into my yoga pants, I can see where we’ve been going wrong here in Gainesville.

Cancer is definitely not something you should sit back and enjoy.  Neither is chemotherapy nor is the aftermath of side effects.  (As far as I can see, the only really good thing is the automatic weight loss.  It’s a fat chick’s dream, but no matter how thin you are, it’s hard to rock the bald look!)  Back on point, once a treatment plan has been determined and everyone is on board for the ride, it’s imperative to ride that prancing pony with all the enthusiasm you can muster.  I say that as the voice of experience.  Steven’s saying is, “If you’re gonna be a bear, be a grizzly.”

Being an expert on making plans, lists and schedules, Steven can be a handful when anything seems to be at a stand still.  I take a little longer to lose patience with a gridlock, but I’m not THAT far behind him.  Consequently, I think we’ve both been driving the Shands’ doctors and nurses crazy.  When we were on the “other side” (In-Patient wing of the BMT floor) Steven couldn’t wait until his numbers recovered enough to get out.  He kept telling the doctors and nurses that once he got to go to Hope Lodge, he’d start getting better faster.  On the other hand, they already knew that he would get better and better every day…that was kind of the point of this whole adventure.  But, they didn’t want to let him go until they knew he wouldn’t fall on head, go into cardiac arrest or just simply drop dead in his sleep.  In retrospect, all good reasons for their hesitancy to discharge.

In reality, Steven has gotten better and better every day.  I’m doing a fine job of nursing him at our home away from home.  But after about 2 days at the Lodge, he started with his push to go to our home-home.  Even I was beginning to think he sounded like a broken record.  (“broken record” is an idiom, kids.  Google it)  But no matter how hard he has pushed, the docs have pushed back…or at least politely and gently fended him off.

So here’s the deal.  The chemo that Steven had in preparation for the transplant was very hard on his body.  His system is trying to recover, but over the years he’s had a lot of different chemo drugs that all have a tendency to screw up the way his body is supposed to work.  So his levels show up really wonky on his daily blood tests.  Where it gets a little blurry is that in regular life Steven doesn’t feel really bad, just utterly and absolutely tired.  So from his point of view, he could sleep at home.  From the doctor’s point of view, they don’t want to sign off on sending him home until they’re sure he’s stable according to the levels in his blood.  And it’s taken all week for both of us to accept that the doctors are going to trump us every time.

Yesterday we finally decided to stop fighting the medical professionals.  It’s hard to believe that it’s taken this long, but that’s how we roll.  So today we sit again in the chemo room.  The usual on the menu for him is IV fluids and potassium.  He’s in a circular holding pattern that the docs have not been able to break.  He had that really bad diarrhea, (you can re-read that post if diarrhea is your thing) which made him really dehydrated, which caused a low level of potassium which affected his blood pressure.  In order for us to go home, we have to get Steven’s potassium level up.  He’s fine if he gets it in an IV infusion., which means we have to be here.  If we want to go home, he has to take potassium supplements orally.  If he takes the pills, it gives him diarrhea and yada, yada, yada…we’re still here.

So I just got an appointment card with visits for Saturday, Sunday and Monday.  Which means we’re not going home this weekend.  We’re not even sure if we’ll be going home next week.  At this point, I just want to be home before December!  We have good reason to be festive and thankful for the holidays.  And of course, we have another birthday to celebrate!

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widgetTHIS IS IT!  WE’RE WALLOWING AT THE HOME STRETCH! Unfortunately, we don’t know when Steven will be released from Shands out-patient treatment or how long we’ll be at Hope Lodge. What that means is that I don’t know how much time I’ll be away from work without pay. I’ve only got 2 sick days and 1/2 a vacation day left and our bills still keep coming! If you think you’d like to help us, we’d really appreciate it. Visit our GO FUND ME page and drop some kibble in the kitty if you have some to spare.

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