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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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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