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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Expectations

29 Jun

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.

Maxine and the whole family in Iowa City.

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Home Free

15 Jun

You’ll have to forgive me for not writing sooner. My head hurts a lot. I don’t know how they had me positioned on that table for 14 hours, but I probably should have done yoga or something before the surgery. Everyone tells me it was a long and rather pain-staking operation. I assume as much given I don’t think the anesthesia has worn off yet and I finally dropped the dozen or so pounds in fluids that flooded the five IVs I woke up with. Anyway, it wasn’t fun and I don’t need to go into details.

Now we’re basically back to the drawing board. The surgeons were feeling pretty good because they resected better margins of the osteosarcoma on the left side of my face than anticipated. I didn’t even need the reconstructive flap in the back of my head to keep brain fluids from leaking, which they were going to create with arteries from my arm. The lymph nodes in my neck that they removed were ultimately benign. But then they went to the right side and found what they have now determined through pathology is an entirely different type of cancer, and it looks a lot like what is in my liver. Suffice it to say, I think they were (and still are) frustrated. This was entirely unexpected from imaging (and from imagination, really) and the first part of the surgery had gone so well. I don’t know how my body comes up with these things, but to put it bluntly, you don’t get any more screwed up than this. The doctors thought the same and have been thinking the same ever since. 

We’re still waiting for final pathology reports so they can run every stain in the book. From there all my doctors will pow-wow and come up with our new plan. Hopefully we’ll meet back at Mayo this week. I still need a few weeks to recover and am doing so at home in Iowa City. I was discharged yesterday, as home is the best medicine. Jimmy is now living the dream: a live-in mother-in-law. We have fun. 

Thank you to all of you who were thinking of me, praying for me, who made my home so nice for when we came home, who sent cards, flowers and other gifts. I don’t have the energy or wherewithal to respond right now, but please know we are very grateful. 

And on this Father’s Day, I want to thank my dad, who has been catapulted into super-caregiver this past week. He sat through numerous hours of silence with me, has become a chef of white soft foods and even learned how to apply chapstick like a champ. He has been so supportive, patient and just the kind of dad you want on your side to help you feel better.

My dad and me

My dad and me

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