All Done, again

So, it was brought to my attention that I had failed to actually write a final blog note about the outcome of the trip this year.  Yikes!  My bad - I am sorry.  I had posted on FB and emails, but no blog.  Part of the reason is that as times change, I have no idea who still hits the blog, versus the other means of communication.  I like the blog, 'cause I get to talk longer, and as anyone who knows me can attest, I like to talk!  Here's a picture of my new friend, George.  He and I talked for a while outside of Jimmy John's Subs - the best JJ's anywhere, by the way.  They had 12 workers at lunch, to make sure no one had to wait!

So, the outcome this year is "status quo."  No changes.  Nothing new to report.  Dee Dee still has just over 20 tumors in her stomach, they are stable and unchanged, and there is nothing else anywhere else. An outright miraculous cure would be the best news imaginable  but this is the next-best thing, and we'll take it quite happily.  She will have some tests done in NC next year, and back to Mayo in 2015.

After all the tests and procedures, Dee Dee always feels poorly for a few days, and this year has been similar.  I think the biopsies always make her feel sore and "off," and when she eats it hurts for a few days.  Thankfully, that is beginning to ease up a good bit.

When we left for the airport Wednesday, she was pretty rocky.  The agent at the American desk announced that our flight had been cancelled just as I began to check in; this was the last American flight of the day.  Dee Dee somehow physically shrank into herself as she heard the announcement; I told the nice lady that she could not have uttered anything worse at that moment!  The only other airline in Rochester is Delta.  They had one flight 30 minutes later than our original, and it took us to Twin Cities instead of Chicago, but they got us on that flight and we got home at about the same time we were scheduled originally.

Why tell that story?  Because God is good, you prayed, and in things both large and small, He smiled on us this trip.  Dee Dee would even say that the snow was a blessing, and she laughed greatly at the thought of me standing in the middle of the streets of Rochester, in a blizzard, taking pictures and talking to strangers.  My theory is a stranger is just someone I haven't met, YET.  And, how else are you gonna get pictures of snow-covered streets without standing in the middle of those same streets?

Thank you all so much for your concern, your love and your prayers.  The community of believers is remarkable, and the opportunity to serve as hands and feet and eyes and ears in the body of Christ is amazing.  Thank you all for standing in the gap with us!


Tony, for Dee Dee as well

Update from the North Pole

Okay, not really the North Pole.  Even elves have their limits!  Actually, it has brought Dee Dee considerable enjoyment to sit in the waiting rooms and look out on the soft, white snow falling (well, blowing horizontally until gravity finally overcomes wind speed), reminding her that God is creative, peaceful, and good.

She finished day two of the octreatide scan earlier today.  This is the scan that lasts 90 minutes, and she is strapped to the table to prevent movement.  Thankfully, she is allowed her iPod, so had Indelible Grace queued up.  They just took her back to do the last big test, endoscopy with ultrasound.  This is the test in which they will actually look directly at her tumors, and attempt to both count them and measure them.  She has had between 22-24 tumors each time we've been, and we pray that we see that or LESS!  We also pray that they do as few biopsies as possible.  Invariably, the more they cut, the worse she feels the rest of that day.  If the number of tumors has increased significantly, or any of them have increased in size dramatically, then they will advise us to remove the stomach.  Obviously, since I love my wife's stomach, and she enjoys having it as well, we'd pray that this recommendation is never forthcoming!

As we've been here, I am once again reminded of just how incredible a place Mayo Clinic is.  We know medicine, and we know hospitals.  This place is just different; better.  Their organization abilities are phenomenal.  Their CARE is amazing.  Heck, even the architecture of the place is calming.  They have grand pianos with folks playing in lobbies, they have opera singers, they have random hallways of Warhol prints.  They have folks stationed to help us anywhere patients might pause to figure out, "Which hallway do we take," or "Which elevator do I need?"  Just amazing.  Every time I'm here, I think that if I were deciding today which school to attend, this would be it.

In case you haven't figured it out from earlier posts, I love movies.  I echo David Bowen from Church of the Good Shepherd in Durham, who memory tells me sees life and gospel applications in movies.  (I remember one Sunday when he got amazing mileage out of the classic "The Dirty Dozen" - amazing.)  Well, one of my favorites is Shawshank Redemption.  Tough, gritty story of injustice and joyous redemption.  Of love, and friendship, and of never ever giving up.  I wonder if Jim Valvano thought of Andy Dufresne when he gave his astonishing speech at the ESPYs just before he died?

In that movie, there is a scene in which Tim Robbins' character, Andy Dufresne, crawls to freedom through a sewage pipe filled with the excrement of an entire prison.  He emerges into a wonderful rain, a downpour of God's grace that washes him clean again.  The enduring image, of Dufresne standing in rapturous joy as he is cleansed of decades of oppression and filth, is a near-perfect moment of film-making.  And, every time we come to Mayo, I am reminded of that scene by a 40-foot sculpture hanging in one of the 2-3 story lobbies.  I am reminded that we must, at times, crawl through sewage before we are cleansed.

This sculpture is unnamed, untitled, and simply hangs to remind those who come here that we have feet of clay, and that we are dust, but that we have wondrous glory ahead!  And that while we labor here, we do not labor without hope.  And that our faith and our hopes are not in vain.  And that we can reach high, we can avail ourselves of mercy, in heaven above.

I am reminded that Christ Himself, our great high priest seated at the right hand of God the Father, makes intercession for us!  We are cleansed, not by rain, but by blood; the blood of one who was truly innocent, unlike Andy Dufresne who finally realized that while he did not pull the trigger, he was guilty just the same.  We all are; Christ was not.  His perfectly innocent blood was shed for redemption and for forgiveness and for merciful grace to us, His children.  Praise God!

And, thank you all for praying with us as we crawl through the muck and excrement of human frailty and disease!  We look forward to lifting our hands in glorious praise on the other side, right along with each of you!

Blessings,

Tony

I must be planning to kill Caesar!

Anybody?  Anybody?  Bueller?

Okay, in Shakespeare's Julius Caesar, act 1, scene 1, Brutus cannot sleep.  Why?  Because he has joined the plot to kill Caesar.  And tonight, since I cannot sleep, I am looking for reasons why, and killing Caesar is all I can come up with.  

Except, of course, that Caesar died a long time ago, and all we have now is a salad to remember him by.  Ah, fame; fickle, fleeting at best!

(Look at that, folks!  A Ferris Bueller reference mixed with a William Shakespeare reference!  The sheer scope of useless stuff floating around in my head is either amazing or depressing, depending on your point of view; Dee Dee sees it as depressing, since I cannot remember what time we lead small group every single Sunday night!)

Actually, some psycho-mumbo-jumbo-logists would suggest that our flight leaving in just a few hours might have something to do with me not sleeping well.  Hah!  Just because they have years of training and book-learning behind them, should we listen to such outlandish theories?

Probably.  No matter how many times we do this, it seems that every time, as it approaches, we are forced to contemplate hard things.  We are forced to look at our kids' worried faces, hear their concerned voices from afar.  We are forced to put even the difficult things of life into the "theology blender" (new term!  Like it?  I think I'll call it "Clark's Paradigm") and find out if our doctrine still trumps our circumstances.  

I guess, given that God trumps all, and He is the author of doctrine (and an infinitely better author than ol' Billy Shakespeare or John Hughes!), our answer will continue to be that whate'er our God ordains is right!  As you pray all those other things that make good sense to pray, would you also pray that our faith is made deeper and richer and fuller and wider through these circumstances?  Would you pray that Romans 8 is very real to us over the next few days?

Romans 8:10-11 - "But if Christ is in you, although the body is dead because of sin, the Spirit is life because of righteousness.  If the Spirit of Him who raised Jesus from the dead dwells in you, He who raised Christ Jesus from the dead will also give life to your mortal bodies through His Spirit who dwells in you."

Romans 8: 16-17 - " The Spirit Himself bears witness with our spirit that we are children of God, and if children, then heirs - heirs of God and fellow heirs with Christ, provided we suffer with Him in order that we may also be glorified with Him."

Romans 8:18 - "For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us."

Romans 8:26 - "Likewise the Spirit helps us in our weakness.  For we do not know what to pray for as we ought, but the Spirit Himself intercedes for us with groanings to deep for words."

Romans 8:28 - "And we know that for those who love God all things work together for good, for those who are called according to His purpose."

Romans 8:31-32 - "What shall we say to these things?  If God is for us, who can be against us?  He who did not spare His own Son but gave Him up for us all, how will He not also with Him graciously give us all things?

Romans 8:35, 37-39 - "Who shall separate us from the love of Christ?  Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword...?  No, in all these things we are more than conquerors through Him who loved us.  For I am SURE that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord."

AMEN and AMEN!  As it is in Heaven, may it be in our hearts (and yours!).

Now, go and enjoy your Sabbath!

Tony, for Dee Dee

So, we're baaa-aaccckk!  Sorry, it's tough to do a good movie impersonation in a blog, and I'm sure Heather O'Rourke would be disappointed in my Poltergeist effort there.  (Confess: who knew Heather O'Rourke?  NO ONE!)

I'm back because one week from today Dee Dee and I take to the skies to head to lovely Rochester, Minnesota.  Okay, lovely is a stretch.  Needful.  Utilitarian.  Necessary.  It's been two years since our last trip to the great frigid north, and the time has come to go again.

Quick recap: Dee Dee still feels fantastic.  Looks...spectacular.  Healthiest person that I know.  However, until proven otherwise, she still houses 22-24 small carcinoid pseudo-cancer tumors in her stomach, and those wannabes simply love to invite other, meaner cancers to the party.  So, she has to get checked every year for things much nastier.  Some years, we can do the tests in NC; every other year we go to the gurus at Mayo Clinic.  This year is one of those years.

I think this is our seventh trip to Mayo.  Every time we go, the lead-up is a stressful time for us both.  It has been smoother and less tense this year, and for that we are thankful.  Please pray that this week would be no different.

Also, if you could begin praying now for all the normal things: cure; if not cured, at least perfectly stable, with no spread to other organs (would be terminal) and no appearance of other party-crashers (think Heath Ledger as Joker in The Dark Knight Rises, when the Joker crashes Bruce Wayne's party). Pray that our time together would be sweet, and that the gross circumstances would simply be the tools God uses to bring us closer together.  Pray that I husband well.  Pray that our kids, both away at college and at home, rest secure in the knowledge that the God of the universe has promised them that He will only ever do good for them, and for us; and that His promises are true and trustworthy.

In church today we sang my favorite hymn: "Whate'er My God Ordains Is Right."  I have quoted it many times in prior blog entries.  Pray that Dee Dee and I are both able, as we go through the minutes and hours of testing, waiting, testing, etc., to "take content, what God has sent...."  Pray for her, that as she undergoes tests with horrible concoctions to drink and nuclear medicines injected that make her feel pretty awful, she can find moments of humor, moments of introspective reflection, moments of grace, moments of joy.

Thanks for following, and for joining us as we head back north!  More thoughts and ramblings will follow as we near departure, and as we go through the belly of the beast!

Tony

Done. Praise God for:

Everything. Done on time. Will not miss flights. Lots of loved ones praying. Sweet time together to reflect on whoe we are, where we are, why we are.

Oh, yeah; praise God for great results as well! The endoscopy showed many small lesions (carcinoids) but no large ones, basically nothing new. ALL other scans were clear and healthy. The head doc just calmly reassured us that she looked great, and to go home and not worry about it. He said that now that we have 5 years of regular monitoring, and everything has been stable and good, that we can stop doing the horrible scan (octreatide) altogether, stop doing the CT/MRI altogether, just do sort of an enhanced physical every year and do the endoscopy every two years. If anything ever shows on endoscopy, then we can add some of those other things back into the mix. Wooo-Hooo!

So, we're gonna grab a quick bite to eat, grab our bags, and head to the airport. We love and appreciate all of you, have enjoyed praying for you as you've commented and posted and texted and emailed (y'all are a lot to keep up with!), and are extremely thankful that God has brought us to this point. He is always showing His children more about Himself. This includes who He is as king, judge, and ruler of all things. Today, we rejoice that it also includes His nature of mercy and grace and gentle love.

By the way, next week the temp here is going to be 40 degrees, low of 20, little wind. So He also has a sense of humor!

Tony

Good morning!

(In my best Robin Williams voice...) Gooooood Moorrrrrning Everyone!

So it is 6:15 a.m. here. We got up at 5:30 (not a huge deal for Dee Dee, but not my cup of tea!), and headed across the street to the the hospital. It is currently -13 degrees here in lovely downtown Rochester. Brisk! Officially awake now!

Not much to update. Dee Dee is pretty much dreading this day. I talked with her primary doc last night by phone (he called me on my cell at ~10:00 p.m.), and we feel pretty good about things being back on track. I think. Dee Dee's not saying much on that front, so maybe it is just me who feels better?

By the way, how weird is it that here in Rochester, where almost every single person we see is caucasian (and most look like vikings - tall and blonde), there are 5 Muslim television stations, and one Somali station? They have al Jazeera on 24/7, for example. There is one channel that has Muslim soap opera, talk shows, etc. Just strikes me as strange!

More later. Her test is 45 minutes, so it may be nap time.

Tony

Update, please pray

Well, mixed bag of goodies right now. The morning tests went well, ended a bit early. We then came back to the room and rested a little while (as best we could given the constant renovation noise in this hotel which we are never staying in again ever).

Back over for the endoscopy. In she goes. 1 and 3/4 hours later they come out to get me, and I'm thinking, "Excellent! Finished early!" WRONG! They never started. The doc looked over her case, and told Dee Dee that he was not on board with the procedure plan as it was laid out. He did not feel that she was slated for the correct anesthesia, and that there was little point to just going in and looking. "What if I see some that are bigger, and in my opinion need to come out?" Since he and Dee Dee's main doc had not discussed her case specifically, he did not feel comfortable proceeding. Her main doc was in surgery, so he could not talk at that time. What did we want to do?

Well, they were able to reschedule her procedure to tomorrow at 10:00 a.m., which will give him time to talk to the primary doc, as well as get the better/easier anesthesia. For that we are thankful. I am also really thankful that the doc today looked at this case with a sense of ownership, a sense of doing the best thing for my wife, and not worrying about less important things. This cost him a procedure (he will not be the doc tomorrow), so it cost him some money. It cost him time, as he spent more time talking to us and coordinating her rescheduled procedures than it would have actually taken to do the procedure in the first place. It was all done for what he felt was in our best interest. We are grateful for these things.

We are also disappointed and Dee Dee is wrestling some emotional demons after today. This adds a bit of confusion to our overall understanding of this condition, and of her risks long-term and therefore treatment protocol long-term. It means that tomorrow is a HARRRRRD day. 6:15 a.m. for the first procedure. 10:00 for the next. Consult at 1:30, then to the airport. Home at 11:00 p.m. Dee Dee is really worried that after having this procedure that has been rescheduled, which usually makes her feel pretty yucky, flying is going to be difficult. This is also the first time in almost 5 years that any docs at Mayo have differed at all in their approach; there has been comfort in the fact that they have all "sung from the same page," so to speak. This guy today did echo her main doc's assertion that Duke's original approach of removing the stomach was outrageous, which was good to hear again. Every once in a while I suspect that a bit of doubt creeps in for my bride.

So, pray. Pray for hearts/spirits/emotions. Pray for strength; she is really pretty whipped right now. Fasting since last evening, with the prospect of repeating again tonight and tomorrow. Pray for a solid unity between docs once they all talk this evening, and that this consensus is obvious tomorrow. Pray that she fares well with the procedures tomorrow, and that there are no lesions large enough to remove. Pray that I am able to understand where her heart is, and meet her there. Pray that we don't miss our plane tomorrow; it is the last flight out of Rochester tomorrow, and staying another night would be BAD. All caps. As my daughter would say, "For realz." Pray that is just all goes smoothly and well, and that we meet each moment with the grace of hope, with the certainty of a loving Father and Savior.

Thank you all.

Tony

Morning of the longest day

Good morning! Well, the day is underway here in balmy Minnesota. We had a good dinner last night, managed to make our way around downtown without going outdoors, where the "real feel" temp was -26 degrees. Actual was a much warmer -4, so it wasn't as bad as it might seem. (Just keep telling yourself that over and over, and eventually your mind starts to believe....nah, doesn't work. It's still cold.)

Then, Dee Dee had to drink liquid nastiness to start to purge her system of the nuclear medicine that they injected earlier in the day. There's a lot more detail that I could share here, but...I'd better not.

Today begins with a 2 1/2 hour scan, started at 7:30. For this scan, she is on her back, with large velcro straps fastened at chest, waist, and knees. The scanner is between 1/2 to 1 inch above her body. For 2.5 hours. She gets a bathroom break at the 90 minute point. Egads. She told me that my brother Randy would simply have to be unconscious, knocked out, and even then might not be able to do it. (Randy, you see, does not do well in confined spaces. At all.) By the way, Randy would have appreciated me singing Radioactive yesterday!

After she finishes the scan-athon this morning, she has an endoscopy with ultrasound today at 2:30. She has to fast for six hours before that test. She had to fast for 12 hours before the morning scan. Add it up and she has fasted from yesterday at 7:30 p.m., and will be able to drink or eat again today at about 4:30 or 5:00.

Me? Well, while she is in the scan this morning, I wandered over to my favorite Rochester cafeteria, Pannekoeken. They serve traditional Dutch food, and they are amazing. I had my daily serving of fruit (pannekoeken - think pancake/pastry cross, finished to a golden crisp on a griddle - with sliced apple and cinnamon sugar!) When you order a pannekoeken, they bring it to your table on a run, while chanting, "Pann - e - koek - en" over and over. Fantastic slice of Americana. Strangley, Dee Dee recommended that I get my Pannekoeken fix while she was otherwise occupied. She puzzles me....

Prayers for today are for strength. It is a tiring day for her, a really long day. She feels worse today than any other. If they decide to do biopsies during the endoscopy, she gets pretty sick. So, we're also praying for no biopsies. I'm praying that she is able to sleep between tests.

Listen, this whole thing reminds me that we all know a lot of people with cancer. Pray for them, for their families, for their medical teams. Pray for ways to plug into their lives and show grace and mercy to them. It's a tough road, and they need it.

We appreciate you all, and as we read your comments and FB posts pray for you as well.

Tony

Going nuclear

Hello all! Well, we are about 1/2 way through day #1 here at Mayo. Some discoveries today:

1. Caribou Coffee has a pretty good Irish Cream Latte. Dee Dee got a hot tea (pomegranate oolong tea) and veggie bagel sandwich. I got the latte and an apple crisp pastry. She said that did not count as a fruit serving. Huh? Apple...hello! Also, "oolong" is not a real word. Somebody made it up, stuck it on a tea bag, and now everyone just accepts it as legit. Not me!

2. Caribou also has "homemade custom oatmeal." Ooo-kay. Then, as they prepare this oatmeal with fresh blueberries and almond slivers, they put a cooking thermometer into the oatmeal to make sure they serve it just right. I kid you not. By the way, this counted asa fruit, but the apple fritter did not?

3. When you walk around in 3 degree weather, it does not take long to realize that you're a wimp. My forehead was freezing. Who knew a forehead could feel that cold? Took about a block for our bravado to wilt.

4. I must have a unique sense of humor. Today Dee Dee had a bunch of blood work done (needle number one, if you're counting), then over to the Nuclear Medicine center. They injected her with the nuclear medicine dye, which she tells me really hurts and makes her feel quite strange. Her whole arm burned for about 2 hours after. Thankfully, Mayo still bans all medical tape, so they use cotton gauze to pressure patch all injections, and we're thankful for the little blessings. Anyhow, after her injection, as we sat in the waiting room, I started singing Radioactive by The Firm; she found zero humor in it! I thought it was perfect, borderline genius, but she informed me that I was nuts and should stop bothering her and all the other patients as well. Not one other person thought it was funny. So, either I am wrong and it actually isn't funny, or I am right and the rest of the world is wrong. Jury is still out....

By the way, Dee Dee informed me today that the Kahler Grand restaurant grilled cheese sandwich actually only hits the spot for me. For her, it was necessary calories. What's that saying about opposites attracting?

Spirits are mostly good, emotions doing well, faith holding strong. Body is coping. Hearts are grateful for all your love and prayers, and for God's mercies, new every morning.

More later.....

Tony

Well I'm not uptight
Not unattracted
Turn me on tonight
Cause I'm radioactive