Shannon’s Story

Site created on April 4, 2018

On Saturday, March 31, Shannon was diagnosed with a type of leukemia called AML.  She was admitted to the cancer care floor at Sacred Heart. She started treatment immediately. Her wonderful doctor, Dr. Tana, suggested that Shannon be moved to Rochester Mayo to continue her treatment for at least another month. Her husband, Tim, will be with her every step of this fight. Her children, her extended family, and her hovering friends are also standing close to her side (although the nurses would like a few of them to leave-probably the real reason she was transferred to Rochester).  At this point, they are good in terms of meals, kid care, transportation, dog care, etc. Visitors will be limited during periods of Shannon's treatment. Shannon and Tim arrived in Rochester tonight.  We pray that the team in Rochester is ready for this high-kicking spirited ball of fire. They are in for a real treat! The team at Sacred Heart already want her back. And so do we. 



Newest Update

Journal entry by Timothy Camlek

I have original thoughts. Despite my 26 year marital status, I can think, plan, and act for the benefit of both of us without spousal input even when she’s in the passenger seat right next to me.

This past Sunday morning MRI in Rochester revealed “no significant change” in Shannon’s cavernovous brain mass and bleed in her left cerebellum. Sunday appointments at Rochester Mayo allow for just about any parking spot you wish. The feeling of primo parking elation lasts just about as long as the echo of the beep on your key fob lock button. Much like a bird into a window, I put my upper body into the giant glass revolving doors of the Gonda building. Unlike the bird, I expected some resistance. Also unlike the bird (although I can’t 100% vouch for our avian friends) I wasn’t expecting to leave a smudge on the glass. I fully realize I’m not going to win any body building contests although for some logic-defying reason people continue to call me for help moving pianos and other furniture; however, automatic revolving doors shouldn’t kick my butt. Locked!  

I had dropped Shannon off right by those doors and circled the truck around. Truth-be-told, I saw the great parking spot right then and there, but a favorite comedian was on satellite radio and the tall Mayo buildings were blocking the signal. No problem. Drive a few blocks up, reaquire the signal, listen, laugh,  and go back to the parking spot 15 feet from the building doors. After getting my feathers ruffled by that stationary revolving door (oxymoron, I know) Shannon called letting me know I needed to go to a different building entrance. I’m not sure what surprised me more: Shannon finding her own way in, or Shannon having her phone with her and charged enough to call me. Off to a different parking spot. 

After a quick visit with Rachel H (Tom and Wendy’s daughter) Jan and Mike Oestreich had us meet for supper and stay overnight. Shannon stayed with them for two months in the fall of 2018 when I had to return to work. Great, great people. Lots of good laughs and conversation. They’re moving to North Carolina in a month, so of course we ended up with Jan’s mother’s old foot- operated Drake fold away sewing machine to deliver to our Amish friends in Augusta, WI. 

Monday morning had us parking in our usual and familiar Graham ramp. Coffee and tea at Fiddle Head with Dr. Gangat followed shortly thereafter. What a spectacularly impressive person!  The best in the world at hematology has Shannon in her personal phone contacts and makes time for non-appointment visits. So serious at her job, Dr. Gangat was soon exchanging barbs with Shannon and making her laugh. With all apologies to my female family members and work colleagues, on a cheap coffee shop couch not three feet from me were parked the two most powerful women in my recent life.  I kept my mouth shut and listened. And learned. And had time to eat a small almond pastry. This would factor heavily later on. 

“Why did you pay for my tea?  And why is your book not published yet?” Gangat asked knowingly. 

“I owe you WAY more than tea AND if you people would stop making me come see you for all these tests, I might have more time to get my book to a publisher,” an unwavering Shannon shot back. 

Next up was a consult with the top neurologist, Dr. Flemming. Vestibular system nystagmus means that when Shannon moves her head, it takes awhile for her eyes to track and catch up giving her a drunk-like sensation. This makes for a much cheaper out- to-eat date night bill for me.  “Water for her since she’s already tipsy, and a 32 ounce beer for me, please.”

Dr. Flemming, who hails from Whitehall, WI and went to UW-Madison, explained that there’s no real cure or treatment for brain bleed cavernovomas. 75-80% get right back to good after one incident. This takes anywhere between three months and one year. There’s a 20-30% chance of a rebleed within five years. These don’t kill people and this type is not hereditary. If Shannon has a reoccurrence, it will slowly come on, causing balance, vision, and emotional (oh, wonderful!) issues. 

Getting more vitamin D (mowing the lawn), continuing a statin for cholesterol, and avoiding processed foods containing emulsifiers (gourmet meals made on the grill while it’s sunny out works for me too) are researched methods proven to help avoid rebleeds. Shannon signed up for and went through with a research study blood draw with a goal of attempting to better predict brain bleed reoccurrence. 

The last appointment of the day was at the St. Mary’s campus twelve blocks away. We had an hour to get there. Both of our stomachs were competing with the rotor sounds of the Mayo One helicopter occasionally flying overhead. We needed food. I decided that we should drive instead of walking. (Remember that tipsy condition Shannon has??) 

Windows down in the 83 degree sunshine, we cruised down 2nd Ave SW. I put on the turn signal for the parking lot next to Canadian Honker restaurant two blocks away from St. Mary’s hospital. “Oh, you’re not going here are you?”  How do you answer that and maintain current marital status?  I had a plan. Free parking and walk amongst five different eateries that I would have (at best) a 49% decision in choosing. So, I bypassed that original thought and drove another block down as my eatery decision-making stat plummeted from the aforementioned 49% to the same % chance of Shannon actually mowing the lawn. 

Lots of parking was available with meters. The meters require an app to be downloaded on your phone. No problem. 5G in Rochester!  By the time I located the app, downloaded it, typed in my location zone, signed up for an account that didn’t like the password I picked (swear words must be easy for hackers) my hatless head had absorbed enough vitamin D, in my humble opinion, to warrant a plateful of emulsified foods with no brain bleed risk. 

Standing and waiting to be seated at stomach quieting establishment #1 produced a lone overworked waitstaff who would “get to us in a bit” after taking care of the other three tables of customers looking as if they had all been waiting since the king’s coronation for some service. 

“Shannon, it’s going to have to be the McDonald’s right next door or nothing.”

Have any of you experienced immediate success at these self-ordering touch screens?  Has McDonalds installed these things just to make the kids working there seem like geniuses? Geniuses are the exact opposite of what we looked like trying to navigate that technological marvel. Billions and billions served??  At least two befuddled and ticked off!

“Can we make it to the Holiday gas station across the street in time?”

“Shannon, you beat leukemia. You are going to beat this cavernoma. I don’t think a Big Gulp and bag of Corn Nuts is worth you crossing four lanes of Rochester lunch time traffic in your current condition.”  

So we went in to meet Dr. Lenzino, neurosurgeon, hangry. “He’s the best, but he’s sometimes grumpy when he gets out of a long surgery,” warned Dr. Flemming. Perfect. Emotional Shannon and hangry Tim vs the grumpy Italian neurosurgeon. We parked our reduced selves into the waiting lobby where I witnessed a patient receiving a hand massage. “What the hey?” I thought, “I’m doing this!”  The volunteer’s name was Pam and she did not find my feeble humor attempt of “Is that your name tag or an ad for the type of oil you use?” funny at all. Shannon got called to the consult room and skeptically left me with Pam rubbing oil on my hands. The last time I saw that look from her was when she was wheeled back into the room after finally getting a shower following Emma’s birth and finding me sitting on the edge of the hospital bed with the extremely good looking lactation nurse explaining her area of specialty. 

An unshaven Italian-looking man in surgical scrubs stoically moved through the waiting lobby and through the “you have to be called back here” double doors. It had to be Lenzino. Sure enough. Not two minutes later, Shannon informed Pam that my newly oiled hands needed to come with her. 

Like a scene from one of The Godfather movies, Dr. Lenzino explained in his Italian accent that surgery in this case was too dangerous, but we were still part of his family now. I kid you not!  He said it twice!  I thought for sure he was going to grab my face while lightly slapping my cheek.  “You’re a good guy, Timmy!  But you showed my parking meter disrespect.  That’s not what family does, is it now, Timmy?”

Temporarily forgetting our hunger, we left our parking spot after deleting the app. We made it to The Panther drive in located in Durand, WI. 45 mosquito infested minutes after ordering (from an actual human) we had our burgers, fries, and shakes. Probably enough emulsifiers to cause another brain bleed, but with the quart or so donation to the Durand mosquitoes, we parlayed our chances. 

Last stop was Eli and Rebecca’s Amish farm to drop off that sewing machine. Despite not seeing them for over a year, they recognized us right away and were extremely thankful for the donation. Weird parking a Ford F150 XLT next to an Amish buggy, but happy for no app required meter. 

We’re now parked at home. And so is Shannon’s cavernoma. Just like the non revolving Gonda glass doors and the time sucking parking app, it’s going to give some temporary problems, but provide new connections with people, learning, and laughs. Hope to see some of you at our new family reunion in Italy!
Ciao!
Tim and Shannon








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