Wednesday, January 18, 2012

no sleep for the whiny

I do not even know where to begin.

So, how about with a verse.

Philippians 4:6-7
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

Yup. I will need to remind myself of this one like every single five seconds.
The past 10 days have been busy busy. Thankfully some good time with friends sprinkled in...but mostly business. Doctor business.
His swelling, vision, reflux and stomach pain has been the same = not so good.
Justin saw the pain management doctor. He was extremely aggressive with the treatment plan, so let us just pray for some relief! He saw his pulomonologist who reported minimal changes in his lung function. He will continue to keep a close eye on him, but was mostly concerned that he needs a new treatment plan. Justin had chemo on Thursday at the Boerne Start Center. He took it like a champ and our Pastor came and kept us company. It really wore him out and he was pretty much down and out for the following three days. He saw his hematologist on Monday (liver doctor) and he has some serious concerns. He will need to do a liver biopsy in a few weeks to get some more information. Not excited about that. Obviously. Saw the gastroenterologist today and he is hoping now that Justin is off the fancy antibiotic (voriconizole) that he will be able to start domperidone aka cananda med (that is no longer a canada med but now the matt med). He reported that Justin's motility is definitely impaired and that issue along with the hardened esophagus will probably not see better days. He had a few new ideas on how to work with reflux/other tummy issues. We brought home some samples and will see him again soon. While at the gastro, the eye specialist called to ask if Justin could come in quickly for some additional testing. There is concern about permanent vision loss...results will not be available until Monday when he returns to the office. He will see the nuerologist on friday.
Monday we are scheduled to see the eye specialist and then leave for Cleveland.
Late this afternoon the Cleveland Clinic called to let us know that Justin's appointment will need to be rescheduled. The doctor has jury duty and there is no availability until March.
Oh yeah. You bleeping read that right.
There is a little man hammering at my heart right now and dropping rocks into the pit of my stomach. I know for sure that the Lord has big (great) plans for us....including the whole Cleveland biz...But phooey. We are weary. Worried. Frustrated and oh flip flop...

Philippians 4:6-7
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

I knew I would need this reminder. SO HARD. Harder than hard. I am thankful for the peace he washes over us when we are in our most wacked out weary moments. When we flip the lid and lose our marbles. That peace is always there waiting for me when I shake the yuck outta my head and open my eyeballs. Always there.
OUR plan was to go to Cleveland Monday...hopefully not get admitted...do second round of chemo thursday and then have a nerve block pain back shot thingy friday. Maybe that is still the plan. It is so hard not to know. I am a planner. A check off the list, pack three extra outfits, plan snacks, write itineraries kinda gal. This is no bueno for me. Justin finally reached the doctor in the 11th hour and he basically said there was nothing he could do. He said he NEEDS to see Justin and assess him. He said the long term affects of being on such a high dose of steroids continuously for 7 months are unmentionable and he cannot make treatment changes over the phone.
Can I just say BLEEP one more time?!
We will here back from the Cleveland Rheumatology Department tomorrow.
Humph. And Ugh.
I need the peace train to run me over right about NOW.
Hopeful and Thankful and very very Blessed.
PS: Our house is on the market. HA right?! Justin has a plan for this family and he is boss. So come buy our house! :)
The End.
Phew.

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