Archive | May, 2014

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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