Wednesday, May 30, 2012

...the waiting game

Suggestions have come from many places as to just how to keep our friends up to date on the happenings at our house over the next few months.
I've finally decided to reactivate this blog, post it to FB and put the address in email correspondence .... and let people choose to read it or not. 
One of the hardest things about this past month is that we've not been able to let many of you know personally of Terry's cancer diagnosis - you either heard 'round about' or from another friend or maybe this is the first you've heard -  and we are sorry about that. We felt we needed to keep things low key until we had a plan and until we had the opportunity to talk to family members who were out of the country. 
Plus it is just a hard story to tell.  Here's a time line we wrote for our families, it will give you lots of the details.  I'll update, in a much less wordy form, as often as I can - 

May 1 – Terry goes to see our ENT for his opinion of the swollen lymph node in his neck at the advice of our friend, Declan Fleming, and has a CT scan
        2 – a needle biopsy is done for the suspicious node and he gets a possible/probably diagnosis
        3-6 – we wait nervously/hopefully for the diagnosis
        7 – our wonderful ENT calls us at 8:00 AM to give us the news that his diagnosis of throat/lymph carcinoma is confirmed; we process with our kids
A small tumor Terry can’t even feel at the base of his tongue (down his throat) is the place of origin, spread to develop several small tumors in several places in the lymph nodes in his neck.  So rare for someone without any lifestyle risk factors (smoking, chewing, heavy drinking) that there’s no doubt it comes from the one who comes to steal, kill and destroy.
        8 – we cry a lot
        9 – we see the ENT to plan for the next steps; we go to the Lance Armstrong Foundation for some resources, we get yellow LiveStrong bracelets and we wear them, we are encouraged
       10 – Terry has a PET scan...and our ENT calls us at 7:30PM (in tears of relief himself) to tell us he has asked the radiologist to stay late and read the scan and send it to him, he confirms that there is no spread to any other part of Terry’s body – we laugh and cry and dance around a lot.
       11-14 – we endeavor to get our heads around what this diagnosis means for our immediate future; we process more with our kids, friends, employers
       15 – we meet with the radiology oncologist and plan 7-8 weeks of radiation, radiation is 5x per week; we meet with our dentist to make certain Terry’s teeth are healthy enough for the radiation therapy, we discover a molar is not and will need to be extracted, the dentist makes molded “trays” for his teeth to keep fluoride on them all night during treatment weeks
      16 – we try to breathe deeply; we process more with our kids
      17 – we meet with the medical oncologist and plan chemo therapy; chemo runs concurrent with radiation and will take place 3x over the 7-8 weeks of radiation
      18 – we meet with a PhD/nutritionist who specializes in recovery from chemo and radiation, we are encouraged; Terry gets his tooth pulled
      19 – we try some more getting our heads in the game, we realize we are finished being sad and we are now really mad and ready to kill cancer cells
      20 – our church prays for Terry and many others with physical needs, our hearts are wonderfully encouraged by all the love, comforted by the Lord
      22 – we meet with the surgeon who will put in Terry’s port-a-cath and possibly a stomach tube later during treatment
      22-24 – we work hard at preparing 1000’s of details for the next season of life
      25 – Terry has day-surgery -  the ENT biopsied the tumor in his throat and the surgeon installed a port-a-cath just under his clavicle
      29 – Terry has one last CT for the making of the mask to use in correct placement of the radiation - he gets his first tattoo, cultural relevance at last! (FYI it looks just like this “ . “ and is for the purpose of getting those ray guns pointed just right. )

June 4 – 8 sometime this week both radiation and chemo will begin

So, for now we are playing the waiting game – waiting for the biopsy to come back, waiting for the radiology oncologist to set the treatment plan and to talk to the medical oncologist about when the rollercoaster can begin. On one hand it is finally good to have all the preliminaries over, on the other it is hard to wait – we’d like to start killing cancer cells today.

The tough news is – this is a Stage III diagnosis; on a scale of 1-10 the treatment for this kind of cancer is a 9-10 for difficulty, pain and hard side effects.

The good news is - God is good and faithful, Terry’s overall health is great, we have a wonderful medical team who say this is ‘treatable and curable’, we are surrounded by people who love us, Terry’s friend/employer is all graciousness and help, my work situation is mostly flexible, we four are doing well.

Please know we have everything we need....friends are mowing our lawn, making and freezing Terry beef & chicken stock, filling in for me on out-of-town/country trips, spending time with each of us to encourage and bless us, and people are praying for Terry’s complete healing all over the world.

Our plans are to keep things as quiet and stress-free as possible in June, July and August. Terry and I will work as much as we can – some from home, some in our offices.  We’ll watch movies, read - one of us will get radiated daily and eat a lot of sno-cones.

We know you’ll wish for something to do to help us....and we promise to let you know what we need when we need it. We most certainly need your prayers and encouragement to fight the fight, to love one another well in this season and to continue to trust the Lord.

Know we are well in the most important place – our hearts - and that we feel we are safely in good and loving Hands.