Everything Happens for a Reason

2 Nov

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

24 Oct

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

Dancing

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

26 Sep

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. 

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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

16 Sep
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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…

28 Aug

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.

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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!

22 Jul

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.

17 Jul

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

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 60th 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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