Thursday, August 01, 2013

Patience Fatigue

Team Miner:  

Jeff has his PET scan scheduled for this upcoming Monday.  It has been over three months since we initially found out he had a mass in his chest and, for me, at least, this scan cannot come soon enough.  Our life has been all topsy-turvy since April 30 and I am so anxious to know how the lymphoma is responding (hopefully, total annihilation) to all this chemo.  

But, alas, Jeff is still a patient, and with that title comes the requirement that I've written about before.  You have to actually be "patient."  So, we are waiting for his white blood cell counts to come up.  Waiting for his mucositis to clear up.  (Another new word thanks to this experience meaning "painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy."  Delightful.  NOT.)

To pass the time and to address this terrible soreness in Jeff's mouth, I have managed to cook two additional things that Jeff has successfully consumed:  black bean soup (I simply pureed ordinary black beans that I had cooked in the slow cooker with homemade chicken stock) and congee/jook (with chicken, ginger, and some coconut milk for added calories).  I am also forging ahead, with my mama's help, to combine existing furniture with a couple of new pieces and create a shared room for the little ladies.  We conquered IKEA yesterday and tomorrow I will procure a power drill (whee!) to assemble the furniture.  Expect a lot of frustration and possible cursing in our apartment as I construct these pieces.  However, when I'm done, Stella will be one step closer to having the "rainbow flower butterfly rainbow sparkle butterfly" themed room of her dreams.  (Have I mentioned that the girl likes rainbows?)

While I keep myself occupied as we wait, the other thing I'm struggling with - aside from waiting, which I have always been really horrible at doing without griping and whining - is a feeling that we can't always get what we want in terms of medical service.  Don't get me wrong.  UCSF has been great.  But I had envisioned, perhaps incorrectly, a rather immediate face-to-face meeting with the oncologist to review the results of the PET scan.  Turns out we can expect a phone call.  And then, "if we have questions," we can call and schedule another call.  

I'm sorry. IF I have questions?   I always have questions.  I am that "(im)patient advocate."

But anyway, the PET scan approaches and we'll hear, at some point early next week, over the phone, how things go.  Stay tuned.  And meanwhile, please do your thing sending supportive thoughts, vibes, etc Jeff's way.



Erika said...

I am a completely impatient patient, I can't imagine how frustrating this is. I WANT IT TO BE LIKE THE MOVIES AND HAVE A SERIOUS CONVERSATION AT YOUR DESK, DOCTOR! Gah.

Brooke said...

I am also contemplating moving little brother into big brother's room. So please post any inspiring before-and-after pics, IKEA survival tips, etc. And good luck with the Rainbow Room--I hear that name is available again :)

dirteens said...

Erika - you know me so well. So well. Gah indeed.

Brooke - The only reasonable IKEA furniture survival tip I have is to GET A POWER DRILL. Well, that's for assembly. Obviously, go on a weekday if you have to venture into the godforsaken place. Let's just say that if I had not been equipped with a power drill for the making of this behemoth of a day bed, I might have smashed it to bits out of frustration. But it's done now and we are giving Stella at least a few nights in her toddler bed before we convert it to a crib and have her start sleeping in the new cama. Then we'll wait a little longer before introducing Lydia to the equation. Time will tell, but I'll let you know of any major pitfalls we encounter that you'll want to avoid.

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