Thursday, February 10, 2011

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

Wednesday, February 09, 2011

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

Tuesday, February 08, 2011

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

Monday, February 07, 2011

A Tale of Three Cities

Tonight's post will be a slightly contrived literary vehicle to illustrate the day's travels, using the three cities we have "visited" as characters. Not two cities, ala Dickens, but three.

Our story begins in lovely Cary NC, where the sun was shining, roads were clear, and it was 56 degrees. Above zero (an important distinction as you will soon see!). All was right and good in the world. Or so it seemed.... Our flight from Raleigh/Durham was delayed 90 minutes. Hmm, given that we only had 30 minutes between landing in Chicago and departing for Rochester, I quickly deduced that we had a problem. Pretty sharp for a Monday!

The agent at the gate re-booked us to fly to Washington DC, then to Chicago, missing the first Rochester flight but making the next. Then, he realized that if we just took the delayed RDU flight straight to Chicago, we'd land in time for the same Rochester flight. So, re-booked again! We left RDU, had an uneventful flight to Chicago, and landed in the midst of almost no visibility snow. I mean, all yours kids going nuts "Look at it snowing were going to miss school and build a snowman and eat snowcream and sled and then do it all again" crazy over the snow. Despite the 11 snow plows working in tandem at all times, there was at least an inch of snow on the runway when we landed. Seemed weird, but I couldn't really do anything except trust that smarter folks than me knew what we were doing!

So now we come to the first major transition in our storyline. A plot twist, if you will. We'll drag in a bit of poetry here. I remember Samara finishing in the top 5 in NC at a poetry recitation contest with "Chicago," by Carl Sandburg. Here are a few lines:

Hog Butcher for the World,
Tool Maker, Stacker of Wheat,
Player with Railroads and the Nation's Freight Handler;
Stormy, husky, brawling,
City of the Big Shoulders:

Well, that's appropriate; they may do railroads well, but they pretty much stink at doing airports! We landed, and then got moved to an area, shall we say, out of the way? The pilot announces that the storm hit about 20 minutes before we got there, and that as we landed the terminals lost power. How's that? Lost power? That seemed bad to us, but again, we're the livestock being moved from one staging area to another in the Chicago, Hog butcher to the world, part of this story. And, as mentioned, it's Monday, so what do I know. By the way, it was 56 degrees above zero in NC (did I mention that already?); we're now down to 21 degrees.

They tell me you are wicked and I believe them....
And they tell me you are crooked and I answer: Yes, it is true....
And they tell me you are brutal....

The pilot then continues: "They are unable to move the jetway portable walkways without power, so we're going to have to wait here. Relax, they tell me this is going to take a while." I'm not sure, but I think he groaned. I know everyone else did. We were seated a few feet from the flight attendant, who I think cursed and banged his head against the wall for a moment or two. Actually, he just said, "I've never even heard of this happening before." Great! Like Neil Armstrong, I'm all about being the first to do a new thing!

Well, praise God they actually got us inside fairly soon. And we hustled to our gate, and of course that flight to Rochester was delayed. And then again. And, then again. They actually just cancelled the earlier flight we were supposed to be on, so God had a plan and we didn't need to worry about it; seems like God would have put something like that in the Bible, right? They had those 11 snow plows all in a row on the runways, big fire-hose looking things de-icing planes, and lots of people wondering if they were leaving Chicago tonight or not. Many didn't.

But prasie God we did! On the only flight that actually flew from Chicago to Rochester after 10:00 a.m. today, because they also cancelled the flight after us as well, we made it to Rochester MN. Our third city. Where, when we landed at 8:15 p.m., it was MINUS 3 degrees (low tonight expected to be -15). And a wind that hadn't slowed down since it left Calgary or the North Pole (aren't they about the same?), and came in at a robust 25 miles and hour. Y'all know what does NOT live here? Snow owls. You know why? Because God gave them the good sense to fly somewhere warmer. My goodness, -3 with a 25 mile/hour wind will get your attention! The good folks here are excited about it, saying that it will be their coldest week of the winter. This week is their WinterFest as well, so we feel kinda like they rolled out the red carpet for us.

Well, in seriousness. the story has a happy ending. This place (Rochester, the hotel, the people) feels familiar to us. They are still friendly. After nearly 24 years, Dee Dee and I still enjoy just being with each other, even on long and somewhat trying days. God has given us enough grace to see the humor in things. The restaurant in the hotel was still open, and their grilled cheese sandwich still hits the spot.

We are glad to be here, just because we know it is His plan, and it is needed, and it is for our good. Okay, stike that; glad is not the right word! Content? Accepting? Maybe those are more accurate. We are eager to get the testing underway tomorrow morning, just because we look forward to being through with the testing. While we are praying for great results and great health, we are praying that we don't find our hope in health, but in Christ. We are praying that we don't make an idol out of results, but that we remember our savior. We are praying that we would walk humbly with our God.

Isn't that the way with our God? We think we know the story ahead of time, and we really want to know the plot. We fret when we aren't in on every little twist. However, in our more sane moments, we simply sit on the plane and trust that He will land us safely exactly where He wants us to be, and we happily go along for the ride, all for His glory. May it be so with us, and with you.

More later!

(You know, Dickens wrote many of his novels in serial format as well... I'm just sayin'!)

Tony


Sunday, February 06, 2011

Super Bowl (and getting ready to fly North!)


Greetings! On this amazing, 56 degree sunny day here in NC, we are busy packing, getting things ready to head out tomorrow, and wondering why on earth people voluntarily live in places as cold as Rochester, Minnesota. High tomorrow: 5 degrees. Tuesday? 3 degrees. Wednesday? 4 degrees. Low each night between MINUS 12 - 15. Astonishing. Simply hard to fathom for folks like us. I know people live there and do well for their whole lives; the question is WHY? Maybe they don't know about better weather? Dunno.

Anyhow, packing is thankfully keeping our minds off the upcoming Steelers triumph (please, please, please...) over the team from a similarly cold place whom shall remain nameless. Nervous, nervous! All us Clarks are fully decked out in our Steelers jerseys, shirts, hats, etc. Terrible towels are ready to fly. Voices are rested, ready for the yelling and screaming. Food is ready for consumption. Hopefully, they'll give us great memories and moments to think about as we dwell in the land of airports all day tomorrow!

Thank you all for your love and prayers. No testing tomorrow (other than patience as we travel), but everything starts up bright and early Tuesday morning. Dee Dee will start fasting for that first round of testing beginning tomorrow evening. Basically, every day she has tests done that make her sick, she recovers enough to feel like eating anything around dinner time, and has to start fasting again for the next day by about 8:00 or 9:00 p.m. In the past, while she was in a test or scan, I would run across the street to grab a sandwich from Jimmy John's (first place I encountered them; glad there's one in Cary now!). Given the temperature, I am going to have to pretty stinking hungry to just "run across the street" to JJ's!

Take care everybody! Root for the Black and Gold, and I'll post later.

Tony

Monday, January 31, 2011

Again?


Greetings All! After quite an absence, I am back at this blogging business. Some have asked why I did not continue; I guess since there was nothing going on with the carcinoid cancer stuff, I did not have much to say.

Well, those of you who know me know that statement is blatantly false! I ALWAYS have plenty to say! However, most of my musings have been on my FB page, and any time you want to know about my theological rants, my political observations, movie recommendations (go see True Grit - now!), just check me out there.

However, we have reached a point where it is time to once again travel back to Mayo Clinic, so Dee Dee asked that I fire the ol' blog back up. We thought about using FB for this as well, but this format seemed a bit more private, more like family. Dunno, maybe we're a bit nuts, but it's our thing to deal with, so there. (Kidding!)

We fly to Rochester Minnesota one week from today. I am painfully aware that Minnesota is not exactly tropical this time of year. Please, don't remind me. Please. I am slightly in denial at this point! However, the docs wanted to move things up a few months, we felt that it fit life schedule chaos issues better, so we are just going to brave the frozen plains of Minnesota in February. (THIS, by the way, would be prayer request number 1!) One day a week or so ago, the high in Rochester was 2 degrees F; the low was -21. That is MINUS 21 degrees. That, friends and neighbors, is stupid. I know, I'm not supposed to use the "S" word, but c'mon. I still, for the life of me, do not know why reasonable people choose to live in such a place. Other than ice fisherman, every other job there can be done in places where you don't run the risk of death just by going to the mailbox. And in fact, every downtown building is connected by underground tunnel, just to lower the demands on the E.R. at Mayo Hospitals.

So, we fly up on Monday, the day after the Steelers win yet another Super Bowl. That will be number 7!!!!!!! (Count 'em - that's 7 exclamation points; I may have been away for a while, but this is not my first rodeo!) Her testing starts Tuesday morning bright and early. She was originally scheduled for Monday, but that would have had us in a hotel in MN during the Super Bowl, which would just be wrong. I made that decision before the playoffs even began, just on the hunch that the Steelers would be playing. Whew!

Testing will take place basically all day Tuesday, Wednesday, and half of Thursday. Most of the morning tests require 12 hours of fasting, so she will basically eat after lunch every day, and stop by 7:00 p.m. Most of the tests are basically horrible, with lots of injections of vile substances that make her quite ill, nuclear medicines, etc. Another prayer request here! Pray that she has little nausea, and that when she is given the opportunity to eat, she is actually able to do so. Pray that the tests gather all needed information as well.

If everything goes well, we will be back in NC very late Thursday night. If history is a judge, she'll be pretty wiped out for a few days after. We are supposed to do some things with a marriage conference at church that weekend, so pray that we are able to do and to enjoy those events.

Also, our prayer is that if the cancer is not miraculously cured, that at least it is stable. She has had 22-25 tumors in her stomach when viewed in the past, all fairly small. Our prayer is that neither the number of tumors nor the size of any individual tumor will have grown since last evaluation. We pray that there are no tumors of any description anywhere else in her body. And, we pray that no other cancers have "piggy-backed" onto her existing condition. This is actually the greatest risk, according to the Mayo docs.

Mostly, pray that we would learn anew the goodness of our great God, and the fullness of His mercy. Pray that He would be sufficient. Pray that Christ would be our aim, our fervor, our goal; not health nor long life, but the cross. We pray for long life, but pray that we would do so as grateful servants who desire to serve Him here longer.

Thanks, and we'll keep in touch!

Tony