Sunday, January 22, 2012

cleveland closed...for now

Some doors have recently been closed. We prayed hard for the Lord to show us what we were supposed to be doing. We have often felt lost during this time or like the cast members of a really confusing movie (like inception). Last week a BIG door was closed. We didnt realize right away because we were too busy freaking out...but a big important door closed. We will not be going back to Cleveland. After much prayer and lots of consultation with his MANY doctors that see him here, a decision was made. Chasing a doctor that can "cure" Justin is becoming a burden that is just not worth it. Not that Justin's life isnt worth every dollar/plane trip/doctor visit in the world. It is. He is worth more than the stars in the sky. He is a son to the king. He is a daddy. He is a precious and handsome and amazing husband. He is a friend. He is really funny. It is just physically, emotionally and medically no longer necessary for him to "chase a cure" It sounds like defeat, but it is really so much more. It is rest. It is peace. It is understanding. We are helpless and hopeful at the same time. That is a pretty tricky place to be. It requires LOTS of constant time at the foot of the cross. Continuously pouring into His word. Asking often for forgiveness and more strength for when we get angry/mad/really sad. So what does this mean? It means for now we are going to stick with the 9 local doctors that he has. We are going to consider the term that he has been deemed "unfixable"...and we are going to just wait for the Lord to show us what to do next. He saw a nuerologist on Friday who really gave him a lot of insight into what he should look forward to and what he should just accept for now. He sent him for a brain MRI and did a few other tests that we will hopefully have results from on Tuesday. He will also hopefully have some results available tomorrow from the eye specialist. So when the doctors from Cleveland called to cancel Justins was really an answer to much prayer.

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 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.

Sunday, January 8, 2012

get busy

you know that speed clean thing that we do when someone is gonna pop over or our hubby's are in route home from work? oh you had a rough day/you were on facebook too much/there was a real housewives marathon/you get the idea. you run around in a mad panic and throw things here there and everywhere. shove the unfolded clothes back into the dryer. pull the comforter up..who the heck cares where the sheet is. a quick counter top intervention. flush a few toilets. slap on some lipstick and VOILA! you are a domestic goddess.

oh you dont do this ever? then stop reading now because we are no longer friends.
anyways, i was thinking today that there are times that i do this with my spiritual life. i get fired up and run to my bible and soak as much in as i can or i start a new study or have a great conversation with a friend about where the Lord wants me.
but the thing is...i always realize that the Lord wants me with Him all the time. i have this bursting "camp high" feeling right now and its so moving that i want to bottle it up and spritz some on next month. i have come a LONG long way in the past 18 months. i have redirected myself in many areas. some were harder than others. i had to mold my surroundings and do some serious spring cleaning before i was able to give a big part of myself to Him.
i thought i may miss out on something cool and worldly if i gave too much of me to the Lord. well i was missing out big time. i am so excited that i stopped and smelled the beautiful roses that Jesus laid out for me. i have learned through the past 5 years that He is without a doubt my strength and heart and guardian....but there is SO so so much more. He is my all. ALL. that is a lot of stuff.
i read recently that ghandi said "i like your christ, but i do not like your christians. your christians are nothing like your christ" well humph. and darn because that is true in many cases. i will speak only for myself, but judgmental and irrational and over emotional about silly stuff....i bet those were things that Christ was NOT.
how can i strive to be more like Him?
this does NOT mean how can i strive to be more like him when:
a. i am at church
b. i am praying
c. i am at a church function
d. i am doing bible study
e. you get the idea
how can i strive to be more like Him ALL the time.
a. when i am in a bad mood
b. when i want to punch the insurance lady in the face
c. when my kids dump out the blankety blank all over the flipping blank.
d. when justin works late for the 9th day this week
e. when haters are hatin
f. when the doctor tells justin his prognosis just got a wee shorter
g. oops....i have a lot more of these :(
i want people to look at our family and see His light shining through. NOT just because we have a juicy story to share...but because THAT is just who we are. i feel like there is this huge parade going down main street right now and i want to be IN it screaming and shouting my love for the lord. i dont want to be standing on the side waiting for a lollipop to smack me in the face. i dont want to watch the parade go by. i want to be more purposeful in all things that i do.
i am thankful for the last 7 months. its been like a boot camp for life. we trimmed a lot of fat around here. ooey gooey non christ filled fat. yuck. goodbye.
i dont know if we would have the focus we do right now if justin was not sick. so i am thankful for this opportunity. its an opportunity to put a WHOLE lot of things in order and perspective. its a DEEP CLEAN. its a bleach the toilets and dust the ceiling vans and vacuum under the couch kind of cleaning.
i am going to deep clean my life. over and over.
you should join me.

Tuesday, January 3, 2012

twenty twelve.

I am not usually much of a resolutions girl. I constantly make resolutions all year and the pressure of big ones in January usually just stresses me out. But this year I have decided that this is a perfect time to get focused and make some goals.

1. We are back on the makers diet. We fell off for a little while there with all the craziness of life BUT Justins resting blood sugar level is around it was time to make a lifestyle change.
2. I will continue to trust the Lords big plan for the peeps in this mac shack.
3. I will shake them haters off.
4. I will read the bible chronologically following this plan:
Thanks Mandy for sharing!
5. I will yearn for my loved ones with the love of christ jesus (phil 1:8).
6. I will make a better effort of QUALITY time with my family and close friends.
7. I will try to have less urges to break my phone when doctors offices/insurance companies put me on hold for 57482 hours.
8. I will love my family each day like it may be our last day together.

Ok so I dont have 10. But I think 8 is good for now. I am not sure how I feel about a new year. What could this year possibly have in store for us? I dont know...but bring it on twenty twelve.

In other news: We are currently scheduled to follow up/more testing with eye dr, see the neurologist, pain management dr, pulmonologist, hematologist, have a chemo infusion and go to cleveland. It is going to be a busy month. Scheduling all of that was just short of a nightmare, but I kept my panties out of a wad (most of the time) and got it done. Please pray that each appointment is informative and that we do not need any new doctors. I think we have each part of the body covered at this point.
Pray for sweet little Bryce Mac as he has been asking lots of questions lately about Daddy. He is concerned and although he is easily distracted by fruit snacks or the disney still hurts our hearts to hear him ask. He has a tender heart and we share with him as much as we feel is necessary for a six year old and we ask him to pray for daddy every single day. And he proudly does.
There is a contract on our Houston house (PRAISE JESUS!) so please stop and pray that everything will be smooth sailing and we can kiss that baby goodbye! It would be one less thing to worry about and then we can start making big decisions on our long term plans here.
Trying to keep this world organized is becoming a bigger task each day. I am comforted in knowing that this is the specific job that the Lord chose for me. I am sad that we have to know this type of "suffering" but I am thankful for the way God has made his presence so very clear. Doing this without Him on our team is unimaginable.
Join us in our makers/paleo fast at
thanks for keeping up