Saturday, November 21, 2015

Inch Ninety-Two: Party On

Note: I write a monthly column for The Myeloma Beacon, an onsite resource for those of us (and our caregivers, family members, oncologists, and the public in general) with myeloma. Warren and I are just coming off several extremely hectic and packed weeks, including a concert last night. So for this square inch of writing, I am giving you my November column, lightly edited for this blog. (Another note: I have a wonderful, amazing editor at the Beacon, Maike Haehle. She makes me read great in print month after month!)


Earlier this month, I held my third cancer party.
I threw my first cancer party when I was diagnosed with multiple myeloma 11 years ago. It was a big party. A really big party. It went on for hours, everyone brought food and drinks, and people were packed against the walls of my apartment.
What a great night.
Almost three years ago, when I relapsed and started Velcade, I threw another cancer party. I had lost physical ground over the years, I wasn’t happy about the Velcade, and it was time to party again.
Once again, everyone showed up and everyone brought food and drinks. Although the party was held in mid-January, the weather was fairly mild that night. That was a good thing because there were so many guests packed into our house that the indoor temperature rose and people spilled out on the deck to get some relief.
That was a good night too.
After I relapsed again this summer and began Kyprolis this fall, I looked at Warren and said “you know what this means, don’t you?”
He nodded. “Another party?”
Yep, another party.
I called this party the “Further Down the Road Cancer Party.” At 11 years out, I have no illusions about where I am on the myeloma spectrum. And my invitation reflected that:
Many of you were there for the first party in December 2004, when I was initially diagnosed with multiple myeloma. And from time to time, we’ve partied to recognize what a long, strange trip this has been.
Eleven years later, it’s time to party again! Why? Because I’m further down the cancer road and what better excuse than to raise a toast to good friends and good community? (And for those of you won­der­ing how I can send this invite out when my older brother is in the end stages of cancer, trust me, Dale gets that life goes on and he will be there in person or spirit or both.)
This was a great party too. Once again, we packed the house. Once again, the food filled three tables, all the counters, and the stovetop as well. Once again, people spilled outside when the inside temperature rose.
The rooms were full of people I care about, many of whom have been with me from the start of this adventure. My friend Larry and his wife drove down from northeastern Ohio to join us. Larry also has myeloma (13 years) and has been my constant companion in the myeloma world. They arrived early, and we four had time to compare notes about treatments, where we are this many years out, and how our spouses are holding up (magnificently).
There were some quiet revelations. My friend Doug, who has dealt with stomach cancer for several years, took me aside and told me that the cancer was back, in multiple tumors, and the prognosis is not good. We hugged hard; I sought out his wife and hugged her hard too. Mark, my poetry club friend, just recently received a diagnosis of chronic lymphocytic leukemia, and we have been talking about the reality of that diagnosis. We talked at the party too. Other friends asked me quietly about my status and prognosis.
The most noticeable absence was my brother Dale, who died last month from liver cancer. Dale was always the last guest to leave, talking long into the night with anyone nearby. He knew no strangers. My kitchen garbage can has a permanent crimp in the lid from his sitting on it at the first party 11 years ago, and I kept looking over at it, expecting to see him there again.
The reality of a cancer party is cancer.
But that’s not the only reality. The reality is that life goes on, and this party demonstrated that in spades. There was a lot of laughter and talk. There were hugs and stories. There were tall tales and taller truths. There were a lot of us just celebrating being alive and being together for now.
I don’t throw these parties to celebrate the illness. I throw them to thumb my nose at it. Myeloma is killing me, but while I am able, it will kill me on my terms. Those terms include good friends and good food and good talk. Those terms include loud laughter and funny stories and quiet comments and long hugs.
And those terms include my cancer parties.


Darla said...

I appreciate and admire that you live your life on your own terms and are so open about it here.

Linda said...

i like your cancer goes it to the fullest!

Laurie said...

Here's to you, thumbing your nose at cancer, and living as well as possible in spite of it! You are an inspiration.