We walked in late, exhausted from the drive North in the dripping rain, driving towards the unknown with so many other cars hustling and hurrying on their way home from work. We walked in late, blanket held tightly in my arms, into a room full of nine cancer patients and a spouse for each, nurses and session leaders. They had saved a chair for each of us, but I hesitated as I looked at the bony metal things, for my hips were screaming in pain from the drive up.
I am bedridden most days now, the pain of the last three weeks crescendoing when I dare to sit at my computer or dawdle after dinner – 30 minutes is my limit in a chair, putting all my weight onto the cancer-enriched hips. They don’t like it, and neither do I, and I hesitated before sitting in a chair that I knew would hurt. I did it anyway, because really I’m a conformist. I follow rules and try to understand why and then make up games like “What would I do to make this better?” in my hotel room after meetings.
It lasted only a few minutes. My hips hurt, and the pain screamed so loud I could not hear the speaker. So I took my blanket and lay down behind the circle of survivors, shuddering with the pain and the embarrassment at not being even good enough to sit with the warriors in the circle. My husband joined me, and stroked my forehead, and told me that it would be ok. That it already was ok, and that he loved me.
And I was reminded in that instant – and in so many instants that weekend – that he did, and he does, no matter my disability now or my emotions toward that evil beast cancer that is trying to steal my life.
The Johns Hopkins nurses and organizers of the weekend retreat (A Journey of Courage and Hope for Couples) brought in a couch for me, and I thought I might die of embarrassment, but they were so kind that I accepted, and I lay my head in Curt’s lap and my feet cuddled up at the other end of the couch, and we spent the weekend together like that, or flipped vice versa, with my head on a pillow and my feet being gently rubbed as we worked through the sessions together.
I met some amazing people that weekend, like Leanna, a woman just younger than us, gifted with compassion and healing ways about her, she of the Labyrinth and the defiantly pink hair covering a scalp that has seen radiation, a shunt, and more than anyone should have to deal with. She walked with grace and a walker, and her loving husband Herb bustled about her, eager to help in whatever way he could, knowing that he could not take her pain away. They are a strong couple, and new friends, and I hope to see them again since they do not live too far away.
Rachel gifted us with laughter, irreverance, and a fighting spirit all weekend. She introduced me to the young mets board for young metavivors, survivors with metastasis, and she bubbled all weekend long about plans for the young survivors group that she was forming in Louisiana, at a hospital where they only knew four that fit the bill. She and her husband kept us in stitches, and we bonded quickly as we insisted that for pink ribbons to be helpful, they must be wrapped around research into a cure for this cancer.
The group was led by Lillie Shockney, R.N., an amazing force for cancer survival and resources. She helped us see past our current states and see into a future where things could be different. She helped us remember the past, and we did an exercise of memories, and I’ll share more about that project and other things that cancer survivors — and, frankly, all of us — can do to increase the odds that our children will remember us when we’re gone.
Heather and Tammy, Pat and Pam, Marie, May … oh, I wish I could sketch them all here, but I’m sticking to the ones who are already out there on the internet, for their own privacy, but I will say that we were blessed to meet people who were newly diagnosed and 14 year survivors, people with rich, tight marriages, people who could laugh with each other, and people with all states of hair regrowth that I swear no one noticed, except to admire a beautiful scarf or a particularly gorgeous shade of red on Saturday’s wig. It was a time for us to be together, but it was different than all the other retreats and support groups that I had been to before.
This retreat recognized that we are not just individuals plucked from the population and stricken with disease. We are partners, spouses, mothers, daughters, and our disease exists in a matrix of love and compassion — we hope — and our supporters need support too. So as I thank the organizers of this retreat, again, Lillie Shockney, the Johns Hopkins Breast Center, and the funders, The Salisbury Foundation, headed by a single individual who wanted to make a difference and called Lillie one day, asking what she could fund that would matter. This mattered.
I also want to thank all of you who have supported me in our fight against breast cancer.
Those who have made casseroles. Those who dropped by with brownies. Those who took my children for an afternoon or dropped by to sit with me in the morning. Those who call once a month to check in, and those who make crazy fun that I can still join in. You are all wonderful, and I thank you for being there for me, for not giving up on me, and for including me in life. I am not giving up. In fact, I am renewed and energized, and I am talking to my oncologist this morning about ways to reduce my pain and get me back into life and out of the bed. I want to go see those soccer practices myself. I want to volunteer for cub scouts. I want …
I just want to live, and today I thank all of you who have helped encourage me to follow this dream. There are two more posts about the retreat to come, one chock-full of ways to help you preserve your family memories, and one in which I will share with you the miracle that occurred Sunday morning, when I was at my worst point, and when the pain was almost too much to bear.