The End

Jenna Catherine Langer Vancura, 28, passed away January 3^rd 2015 surrounded by her close family after a 12-year battle with osteosarcoma, a pediatric cancer. She was born in Edina, Minnesota but moved to New Ulm at the age of seven. Early on she twirled her dresses, parasols and red hair, and she invited the good in people.

Despite treatments for her first bout with cancer her entire senior year of high school, Jenna graduated from Cathedral High School with her class in 2004. She left, bald, for the University of Minnesota, from which she graduated magna cum laude in 2008. She lived her dream of hastening to work in a crisp business suit at agencies in Washington, DC and Chicago. In between, she would need a bone marrow transplant, the marrow donated by an incredible college sophomore in Boston, Maxine.

Jenna met the love of her life, Jimmy Vancura, when she played Anne and Jimmy, Gilbert in a middle school production of Anne of Green Gables. The teasing line “CARROTS” was probably the most descriptive of their relationship until both had graduated college, and Jimmy couldn’t resist Jenna in a dirndl. They married September 28, 2013 amid a church-full of family and friends.

Jenna is survived by her husband Jimmy, her mother Lisa Langer, her father Kurt Langer, her brother Jack Langer, and a bounty of extended family and friends. The first people she’ll greet in heaven are her grandpa Kurt Domeier and his sister, Sr. Anna Domeier.

Jenna loved to laugh at Jimmy’s playful sense of humor, explore the side roads with her dad, joke with her smart aleck brother and just be with her mom, her caregiver for 12 years, in any shape.

-Jenna Catherine Langer Vancura

In lieu of flowers please select from the following to send memorials to:

• Jenna Langer Vancura Memorial Scholarship– This scholarship will be awarded to students at New Ulm Area Catholic Schools. Memorial can be made out to New Ulm Area Catholic Schools.

• Baldrick’s Foundation – They work to fill the enormous gap to fund research that impacts childhood cancer. Only 4 percent of the National Cancer Institute’s budget is directed toward childhood cancer research, while the average number of years of life lost to cancer among adults is only 15. For kids it’s 71.
• Doctors Without Borders– They deliver emergency medical aid to people affected by conflict, epidemics, disasters or exclusion from health care.

Arrangements:

Visitation Friday the 9^th of January 2015 from 3 p.m. to 8 p.m. at the Minnesota Valley Funeral Home: 218 North Broadway Street, New Ulm, MN 56073

Saturday the 10^th of January 2015 at 11 a.m.: Mass at Cathedral of the Holy Trinity followed by an afterglow party at New Ulm Community Center

Church: 605 North State Street, New Ulm, MN 56073

Community Center: 600 North German Street, New Ulm, MN 56073

Incomplete

Incomplete

“Okay. I know I haven’t written in a while. A really long while. Sorry. Admittedly I’m a little lackluster in terms of motivation.

Since Thanksgiving, I’ve been home from the Iowa tropics and in New Ulm. It’s a tough decision but luckily Jimmy was home for most of it. I’ve come to the point where I can’t be home alone all day and I don’t have near the support network in Iowa City as I do in the motherland.” – Jenna C. Langer 

Jenna died on Saturday, January 3^rd, 2015 at 9:30 a.m. before she could finish her last Redhead Report post. Her last post, as quoted above, remained incomplete for good reason. It wasn’t incapacitation or a lack of her ferocious redhead fighting spirit that prevented her last post; rather, Jenna put what remaining energy she had into the people that she loved. This is the abbreviated story of her last month.

Jenna always wanted everything to be wonderful and beautiful. Thanksgiving was no exception. Her infectious radiance permeated Thanksgiving at her Aunt Cate’s. She continued the beautiful mission of her life a few days later when her childhood friend, Danny Schreiber and his fiancé, Shannon, invited her to a friend’s 30^th birthday party. Jenna accepted the invitation, wore a stunning dress, and defined beauty and class as she sat and conversed with friends and complete strangers alike. She then fussed over getting Christmas cards out and picking the perfect gifts for her family and friends. With that goal accomplished and the arrival of Christmas, Jenna became the nightly referee of scrabble matches between her brother, Jack, and her mother, Lisa. She also partook in the family tradition of watching It’s a Wonderful Life. While Old Saint Nick headed to the North Pole, Jenna and I drove back to Iowa blasting KC and JoJo for our last weekend in Iowa City.

The normalcy of times past permeated the weekend. We lounged around, drank beer, and ate burgers as we watched Gonzaga basketball. In the morning, she sat in the sunshine of our living room and read the New York Times. We cuddled the rest of the day together in the home she so thoughtfully and beautifully created.

When she returned to New Ulm the following day, she created daily plans for herself and a host of other plans when I could return home. On New Year’s Day, she drove to Wisconsin to celebrate Christmas and the New Year with her dad, Kurt, and his family at her Aunt Ann’s home. She came home and felt tired but still called to say she loved me and wished me a good day at work.

Jenna went into liver and kidney failure on January 1^st, 2015 as a result of the disease she had defied for 12 years. I did not think death was so indiscriminate or callous as to kill Jenna. But despite multiple organ failures, she still managed to perk up and say she loved me and gave me a kiss before returning to unconsciousness. Jenna was not in pain and surrounded by her family until her last breath.

The finest poets and novelists could not adequately convey Jenna’s gratitude to the people who supported her over the last 12 years. She is eternally grateful, and I say, on her behalf, “Thank you all.”

The Redhead Report, which chronicled the joys and tribulations of her singular life, was Jenna’s voice to the world, and, most importantly, to those who will undergo the scourge of cancer. It will end later this week with the same voice in the form of her obituary, composed to all of you, with love, from Jenna Catherine Langer Vancura.

–Jenna Langer Vancura. Completed by Jimmy Vancura. Edited by Franz Vancura.

Arrangements:

Visitation Friday the 9^th of January 2015 from 3 p.m. to 8 p.m. at the Minnesota Valley Funeral Home: 218 North Broadway Street, New Ulm, MN 56073

Saturday the 10^th of January 2015 at 11 a.m.: Mass at Cathedral of the Holy Trinity followed by an afterglow party at New Ulm Community Center

Church: 605 North State Street, New Ulm, MN 56073

Community Center: 600 North German Street, New Ulm, MN 56073

Everything Happens for a Reason

I hate this phrase. A lot of people have said it to me with good intentions, to be sure. But it’s an easy out. It’s comforting to think that no matter what happens, there’s some big Chutes and Ladders board out there and we have merely fallen down a ladder, only to shoot back up again when we least expect it.

But tell that to the fourteen year-old Yazidi girl who was just kidnapped and sold as a sex slave to an ISIS militant three times her age. Look the man in the eye who died of Ebola outside of a squalid clinic with no open beds writhing in pain and covered in his own vomit. Say it to the Nigerian schoolgirl who was taken by Boko Haram with guns pressing at her side.

As comforting as it is, distilling simple problems like “we lost the offer on our new house” or happenstances like “I ended up going to the park and met this really great guy” as “happening for a reason” is disheartening. Surely God is not puppeting your fate from above while he shrugs his shoulders and looks the other way when someone is struck with real catastrophe.

As Pope Francis recently said, there is no God with a magic wand who arranges everything for us. Rather, we find reason or reason with the bad things. That’s good. That helps us overcome the bad things in which we are lucky enough to find a silver lining, like a cancer diagnosis. I’ve received more love in my short lifetime than most people ever will, and I know it. I’m humbled. But when it comes to my cancerous past and future, I can honestly say I’ve never been inclined to ask, “Why me?”. I think it’s because I consider the question futile and without an answer. There is no reason.

But there are bigger problems in the world, hardships we can’t imagine here. Let’s take responsibility to relieve real problems instead of just attributing them to a higher being or a master plan. If you’re thinking of making a donation this holiday season, below are a few organizations you might consider.

• Doctors Without Borders – They deliver emergency medical aid to people affected by conflict, epidemics, disasters or exclusion from health care.

• Center for the Victims of Torture – Based in St. Paul, this group provides direct care for those who have been tortured, trains partners around the world who can prevent and treat torture, and advocates for human rights and an end to torture.

• St. Baldrick’s Foundation – They work to fill the enormous gap to fund research that impacts childhood cancer. Only 4 percent of the National Cancer Institute’s budget is directed toward childhood cancer research, while the average number of years of life lost to cancer among adults is only 15. For kids it’s 71.

Okay, rant over. That was my first one. You have to allow me one.

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Trying to Dance

Yesterday Minnesota Public Radio aired an interview with me about what it’s like to live after ending cancer treatment.

Dancing

As I alluded to in the interview, I received a card from my godmother Ann a few weeks ago that read, “’What now?’ he asked. “Well… I think it would be a good idea if we danced.” That’s exactly how I feel. When there’s just no place else to go, sometime I think it’s okay to kick up your heels and waltz through what you have left.

I’m trying to do that, but it has been hard. I don’t want to make all of this sound easy, because it’s not. My blood counts get so dangerously low that I’m dragging my feet. In a slow dance with Jimmy at a wedding a few weeks ago I cried with fulfillment – and then sadness and anger – that I really love my life. I don’t want it to end. It seems so far away that sometimes I think it won’t happen. For me, I think it’s best to act like it.

Here’s a link to the interview.

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Living

On Tuesday, 11 years to the day since we first found my cancer, my doctors bravely told me that my body was finally succumbing to the disease.

It’s that realization nobody wants to have, but most need to have at some point. My mom thanked my doctors for their honesty; it’s hard to come by.

My nascent bone marrow just can’t handle the assault of medicines. I mean poisons. We’re worried I may even be losing my marvelous Maxine graft because my blood counts just keep falling and don’t recover. I’ve been getting fevers of 103 degrees for the past several nights, but only at night. My liver tumors have multiplied from three to 13. Something in my head is blocking my ability to articulate speech, so I sound mumbled. And of course there is not yet a drug developed that targets the genetic mutation we found my tumor has.

As of now, we’re stopping curative care and stepping up palliative care. Sometimes when you keep insisting on fighting, you can’t keep living. We’re not giving up, but we recognize that my body is begging for mercy. We have to weigh any long-shot treatments against the harm they might do to my quality of life.

But we have had some bright spots.

First, Jimmy’s residency program at the University of Iowa has taught him that being a good physician is more than just putting in the long hours at the hospital. It’s about taking time off when you need to prioritize things above work. They gave him at least the next month off to spend with me.

Second, I went to Mayo yesterday with my mom and dad to meet with Mr. 14-Hour Surgeon himself, Dr. Kasperbauer, to get his expert point of view. While there got to see my whole veteran pediatric oncology team. Both Julia and Dr. Arndt came in on their day off just to see me. Dr. Kahn took the bus over from the hospital. Dr. Rodriguez, Kelli and Michele visited. Talk about humbling.

Third, we have incredible friends. It has been a rough week. It started with a cancelled trip to Maine with my mom and Jack to celebrate my mom’s birthday and friends’ wedding. Instead, we spent the weekend in the New Ulm ER. My poor mom always gets the brunt end of the cancer stick. Then Jimmy and I got in a car accident Monday night. We had planned a trip to Charleston this weekend to celebrate our one-year wedding anniversary, but cancelled it because I was so sick. Then we got the above news. Sigh. 

September 28, 2013

Our friends heard about it all and pooled their money to send us on a ridiculously indulgent anniversary trip this weekend. Jimmy’s uncle gave us his frequent flyer miles. We decided to reschedule our Charleston trip and go whether I’m sick or not. We are staying in the prettiest places in Charleston and I get to wear all my pretty dresses. We get to wheelchair around to all the history, along the harbor and past the grand old plantations. We get to clink a few champagne glasses (or a teacup and glass of brandy) to the tremendous year of non-stop laughter and love we have spent together. 

We’re taking my prognosis to get out and live very seriously.

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Grace

Laura and me going to Glamorama 2005

Yesterday a dear old friend of mine would have turned 30. I met Laura the summer after freshman year of college at a Children’s Cancer Research Fund event. She had osteosarcoma like I did, but hers would soon become metastatic and she would die in her early 20s.

In the short time we knew each other, Laura taught me more about living gracefully than anyone I have met. The last time I saw her, as her osteo was spreading throughout her lungs, everyone around her was awkward and wanting to apologize for what cancer had done to her future. But Laura was smiling ear-to-ear. Her smile was not a denial of her prognosis, but instead an expression of a real sense of gratitude for the people who surrounded her and the laughter they shared. Laura today continues to inspire me to be poised in hardship and grateful for the life I’ve lived so far.

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Well That Didn’t Work…

For the past several weeks I’ve been on the chemo loop — working my bone marrow up just to poison it back down. I had scans this week to check on my progress. Unfortunately it’s my liver tumors that are making the progress. They have increased in both size and number. We’re still waiting for the results of the MRI of my head, but we do know that the chemo isn’t working for the metastatic carcinoma, and my bone marrow really can’t handle chemo anyway. My blood counts are still bottomed out from chemo I had a full two weeks ago. 

So, on to plan B. My doctors are in cahoots right now to determine what “plan B” exactly looks like, but so far we know it involves genetically sequencing my tumors to hopefully identify a mutation that we can target with a non-chemo oral cancer drug (phew, says my bone marrow). The sequencing takes three weeks. We’ll see what else the good docs have up their sleeve at my next appointment Tuesday. Regardless, we can’t do anything until my blood counts swing back.

Needless to say, this definitely wasn’t the news I was hoping for or even expecting. That’s probably because I have been trying to push forward with life as if my future were a sure thing. That’s what I have learned in the past 11 years that I have to do. Keep my momentum.

It can be difficult to convince yourself of momentum when on disability, especially when you thrive on work like I do. When your life becomes a waiting room, it’s easy to cave in to tuning out the conversations around you and to letting the lady over the intercom dictate when it’s your turn. There’s definitely no way I can keep the pace at which I used to work, but I can do something other than wait (and devise expensive hobbies like redecorating my living room).

So I am moving forward by taking a few hours a week of graduate courses at the University of Iowa College of Public Health that one day will count towards a Masters in Public Health in Policy. It’s stimulating to surround myself with health policy nerds who want to talk about Obamacare’s effects on Medicaid enrollment just as much as I do. It’s good to write papers. It’s good to make plans.

Family shot with Herman

Jimmy and I also adopted a dog, Herman. He’s my company and my couch buddy, a wagging tail when we walk in the door. We’ll have him for many years to come.

This isn’t the first time I have been told that a treatment isn’t working and that we have to wait to figure out something else. These times of waiting are the most trying. It’s human nature to want to move forward as quickly as possible. But I’ve learned that when parts of my life demand that I wait, I should drive on with the parts I can control. It’s all about keeping momentum and looking forward.

 

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I Get to Keep My Hair!

Today we met with Dr. Mo and decided we’ll skip my second chemo drug, which likely would gut my bone marrow and otherwise be intolerable. It seems we’re not losing much from omitting the drug, as it would probably do more harm than its proven good. That means I’m sticking to one chemo drug that only rarely loots a redhead. Hopefully these ginger locks indeed hold on tightly this time!

 

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Is This Heaven? No, It’s Iowa.

They say Iowa is the land of flowing mullets, sub-par mid-2014 GOP presidential sightings and above-knee-high-by-the-Fourth-of-July corn, right? Then wouldn’t you want to come back here, too?

Things have changed already since my last post. My first chemotherapy dose went well until it drained my bone marrow a week later, sending me to an all-night ER visit at Mayo last week and committing me to the hospital for a few days. My, it’s fun to be a low-blood-count cancer patient with a fever. There are all sorts of pleasant tests to try to figure out its origin. Spinal tap, anyone? I’m fine now.

After two weeks of this, I couldn’t avoid the allure of Iowa and the merriment of my newbie husband any longer. Delays that assuredly happen when – weird – your body decides it doesn’t like being injected with poison, cause some heartache on the homefront. With New Ulm, Rochester and Iowa City making a disheartening 11-hour driving triangle and appointments difficult to schedule at the last minute due to last-minute changes, I decided to move my daily care to the University of Iowa, a two-mile jaunt from our Iowa City home. I received my second dose of chemo yesterday a week later than planned, a smaller dose than the first time and only the one drug. Hopefully I’ll be well enough to get both drugs next week. As you can tell, the Day 1, Day 8, Day 15 schedule is already moot.

Don’t get me wrong, I’m having separation anxieties from Mayo, but Dr. Robinson and Dr. Arndt are working extremely closely with my new doctor, Dr. Mohammed Milhem, who heads up clinical services at the cancer center and directs the sarcoma program here. They’re totally buddy-buddy and I can already feel it in what has been very collaborative care. Mayo will continue to be at the helm of my big-ticket treatment decisions. 

After painting Edith’s toes at the cabin

Meanwhile, I have good days and bad days. Some days my headaches leave me stale on the sofa with my eyes closed. Some days, like today, I feel pretty darn good. Most days I try to push through whatever headache I have, even if for an hour or two, to make the day stand out from the day before. Since my first chemo, I was able to spend time at the Vancura’s cabin “Up North” in Minnesota where the meat raffles are hostile to outsiders and the bait shops are busier than Dairy Queen. I was able to kayak through the lily pads on the lake with Jimmy, spend time being “Cool Aunt Jenna” to my new niece Edith, go knickknack shopping with my mom and Mary, and just enjoy time playing inappropriate board games and listening to other such conversations with family. I also made it three innings at a St. Paul Saints game with my dad, got my hair done while I’ve still got it before it starts sinking in fistfuls, and celebrated my godmother’s 60^th birthday with a table full of Domeier women.

I think some people might call this trying to “live every day to its fullest,” but please don’t put that pressure on me. It’s all about balance. Some days my “fullest” is feeling well enough to go to the grocery store, and I have to be okay with that. For a girl that historically crams every bit of her day with bustle, balance can feel boring. But I have to go with it.

 

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Expectations

I have been avoiding writing this post for quite a while. Things have changed often and a lot. So let me level with you. As we knew going into surgery, I have recurrent osteosarcoma on the left side of my head. During surgery the doctors discovered that the same poorly differentiated, high-grade carcinoma that is in my liver is also in the right side of my head, cancer that hadn’t shown up on scans but is likely the primary site of what is metastatic cancer. So, basically I’m dealing with two different kinds of cancers – recurrent and metastatic – both in my head. Even I can’t come up with a good euphemism for it.

Metastatic cancer means that radiation and surgery aren’t good options anymore. The primary carcinoma cancer cells in my head didn’t show up well in scans, so who knows where else they are lurking. A lot of good doctors put their heads together and determined the best way forward is a set of chemo drugs, which they hope can simultaneously target both cancers. I had a port put in on Friday and I start chemo Wednesday. Thankfully it’s outpatient. I will receive one drug on Day 1, two drugs on Day 8, then off on Day 15 and then repeat. We’ll try two cycles and then scan to see how it’s working.

Dr. Robinson (adult onc) and Dr. Arndt (my veteran peds onc), along with so many other doctors and nurses at Mayo, have been working hand-in-hand to give me the same care I think they would give their own family. We have had serious conversations about quality vs. quantity of life, and those uncertainties hang heavily on my family and me.

In the meantime I’m recovering pretty well from surgery, minus the chronic headaches. Maxine is regenerating all the blood I lost like a pro. It’s amazing that 10 years ago this surgery would have meant scars all over my face and reconstructive surgery, while now the surgeons could operate solely through my nose and a small incision on the inside of my mouth. I’ve had several good days where I save up all my energy to get out for a few hours– my 10-year class reunion, a visit from Maxine and her family in Iowa City, a trip to the dog park with Lucy, a date night with Jimmy.

So, here we are. Frankly, I’m exhausted. By my rough count, I’ve had almost 25 procedures and scans that required long needles or worse since this began. I used to fall asleep in MRI machines, but I can’t anymore. I’m unnerved about losing my hair for the third time; I’ve had so many mullet variations to get to where I am today. I’m not feeling as brave as I did before. I think it’s okay to admit that.

But the people in my life keep me looking forward. I very much realize that most people in their lifetime don’t get as much continuous love-blasting as I have for the last 11 years. It makes me feel really good. Make sure you spread that love around.

Maxine and the whole family in Iowa City.

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