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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recovery day two

12 Jun

Jenna had a very long 14 hour surgery on Tuesday.  The surgeons felt they were able to accomplish their goals, though new unexpected cancer was discovered on the right side of her face.  None of that had shown up on any imaging and the surgeons were quite surprised and frustrated.  We are now waiting for the pathology report and a new game plan.  Jenna spent one night in the ICU but is now on the regular floor.  She is dealing with pain, swelling, dizziness and generally feeling crappy.  She walked one time last night and 3 times today, which is what her doctors want her to do.  Jenna wants to challenge herself and walk many more times today. Jenna and her family appreciate all the prayers and support from all of you.  

Lisa and Kurt (mom and dad) 

On Deck

9 Jun

We check in tomorrow at 6 am for what likely will be an 8-12 hour surgery. There are a lot of unknowns and what-ifs going in, but I have a veteran ENT surgeon-neurosurgeon-reconstructive surgeon team to reassure our confidence. A lot of scary risks were recited today, but as one of my doctors said, many of these surgical risks will likely become inevitabilities caused by the tumor if we let is keep growing. 

I’m so thankful for you, my incredible family and friends, for including me in your thoughts and in your prayers going into tomorrow and what will be a trying recovery.

 

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The Plan

30 May

Wednesday was a tough, blunt, long day at Mayo Clinic. We left some meetings feeling hopeful and other meetings feeling smacked with realism, but all in all I think my family and me are relieved that Mayo experts have enough faith to move things forward and give me a shot. 

The osteosarcoma in my sinuses is the most pressing. Likely one measly, severely injured cell that we didn’t manage to fully scorch with radiation 10 years ago has managed to stage a garish cameo. The osteo has flexed its way next to some body parts that are pretty important to me – the dural venous sinuses (that’s a Jimmy word add), my optic nerves and my carotid arteries. I like those body parts and would like to keep them intact.

My doctors’ first priority is to deal with this recurring osteo. The best shot at doing so is to do ENT/neuro surgery, which is scheduled for Tuesday, June 10 at Mayo Clinic. While they’re at it, they’re going to remove the lymph node in my neck for good measure. The surgeon isn’t entirely optimistic he can get the entire tumor out while getting safe margins (whoopsies, my brain is in the way), so my radiologist is exploring if we can follow with sweeps of radiation to laser-gun the rest.

 And about that liver of mine….well that’s just confusing everyone. The tumors are not osteosarcoma, but indeed are a “high grade carcinoma.” Pathology just can’t figure out exactly what it is. The reason they’re all stumped is because tumors almost never grow on the liver without having a primary site elsewhere (i.e. usually liver tumors are metastases). To prove it, I’ve had a glut of other screenings to figure out where these tumors may be coming from, but all have been negative. Hear the collective bewildered sigh of my Mayo Clinic top docs and their colleagues around the country. Given they appear to be crazy primary liver tumors and the osteosarcoma has to take the treatment front seat anyway, the plan is to have a second surgery to remove them after we about face my face.

So far we aren’t talking chemo, for all you redhead fans. I don’t have the kidneys or the receptivity to the protocol drugs to make it worth it.

In the meantime I’m enjoying the lull before the storm, taking in friends and family and being grateful that my medical care team and I have enough faith in each other to allow me to look forward to so much. Thank you for your ongoing love and support.

 

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Dammit.

21 May

Well, that was a good three years without cancer. Maxine’s incredible bone marrow is still going strong, but now the osteosarcoma in my sinus that was supposed to be scorched by radiation 10 years ago has decided to make a comeback. And unfortunately, it’s a little more complicated than that.

A past two week’s worth of scans and biopsies found lesions in my liver and in a lymph node in my neck. The biopsies (which I took without sedation so they could get better samples, thank you very much) are still pending. Pathology has had to do multiple stains to figure out what we’re dealing with in the liver. 

Suffice it to say, even the big dogs at Mayo Clinic are perplexed. As you can imagine, my path forward for treatment is a bit complicated given past treatments have left me with two sets of DNA, among other oddities. I have seemingly every other cancer screening test you can think of this week and I’m hoping the big game plan conversation happens soon, as the nerves of not knowing while these tumors continue to stretch in the meantime is taxing.

Yes, the past 10 years have been filled with what I think is a fair share of adversity, but as I said to Dr. Arndt and my mom when I was told again that I had cancer, man, has it been a good 10 years. Since that first osteosarcoma I have (re)met and married a man who doesn’t let a day go by without saying and showing he loves me, or making me laugh incessantly with mostly middle school-grade humor. I went to college and graduated, moved to Washington, DC, Chicago and Iowa City. I met so many of you along the way. I deepened friendships. I loved the crap out of my family.

Thank you all who made what was a difficult birthday so uplifting. From the makeshift party in Iowa City to the surprise party in New Ulm, to all the Facebook posts, calls and messages – thank you. Many of you have asked what you can say or what you can do to help. As far as what to say, who the heck knows. As far as what to do, you can support my core support team – my family. This cancer devastates and exhausts them just as it does me, and anything you do for any of us is appreciated by all of us.

I’m not sure if or how often I’ll write, but thank you for sticking with me through all of this.

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My wonderful family at Mayo Clinic with me last week.

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Impromptu surprise birthday party with some of the best of New Ulm.

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Birthday party sendoff in Iowa City with lovely new friends.

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Jimmy and me on my birthday.

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