Archive | September, 2014

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. 

1209419_10103680130675560_2139535087_n

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.

To leave a comment, just click on “Comments” below this post. It will take you to a new page. Scroll to the bottom where it says “Leave a Reply.” Fill in your name, email address, and your comment in the boxes. When you’re finished, click “Post Comment.” It’s great to hear from you.

Advertisements

Grace

16 Sep
365965222

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.

To leave a comment, just click on “Comments” below this post. It will take you to a new page. Scroll to the bottom where it says “Leave a Reply.” Fill in your name, email address, and your comment in the boxes. When you’re finished, click “Post Comment.” It’s great to hear from you.