My oldest daughter just turned 21. She was a senior in high school when I was diagnosed almost three and a half years ago, and I remember going into her room before we knew that breast cancer had spread to my lungs to tell her, "Cancer is not going to kill me." I'm sure a lot of metastatic breast cancer patients have been there, believing that this cancer, of all cancers, was no longer a deadly proposition. Even the tech who saw the first mammograms showing a "problem" said, "This is not a death sentence," but then asked if I was active in a church (a few broken technician rules, but I was glad she spoke up). A radiation oncologist at a respected hospital in Chicago was certain I was stage 2 and said this would all be behind me in six months.
Of course, each one of us was wrong, although I still hold on to hope that science and my body will cooperate to give me many, many more years of living with metastatic breast cancer – and, even better, a cure for it. I'm giving you this background because at a recent conference for metastatic breast cancer patients in Philadelphia, held by Living Beyond Breast Cancer, I debated long and hard about attending a session titled, "Talking About End of Life." I don't believe I'm near the end of my life, but you can't live with metastatic breast cancer and not be aware of the statistics and mourn the loss of friends from the same disease.
The speaker, the wonderful Kelly Grosklags (who I've written about before
), was the reason I was drawn to this presentation. Among the many topics was one that struck a chord with me because of that newly-minted 21-year-old: Legacy Letters.
The possibility of missing important events in my children's lives was one of the first losses I confronted with my diagnosis. Would I see them all graduate high school and college? Marry? Be successful? Be happy? Have kids? The advice from Kelly, who is an oncology psychotherapist in private practice, is an unequivocal admonition to write those letters. Although I fear these letters, with the irrational thought that writing them will cause me to die sooner, Kelly's personal experience of losing her mom suddenly and later wishing for notes from her on important occasions touched a nerve.
Letters to our loved ones give us a chance to say both what we've said throughout their lives ("I love you,” for example) and also express how hopeful and proud we are for them at special moments in their future. I'm going to start with a letter for my daughter's 21st birthday; it's already happened, so I know I'm jinxing nothing, and I will go from there. Here's Kelly's advice on how to do it best:
Letters are not only for children.
Letters are for anyone you love - a best friend, a sister, a spouse. "This is for people who love other people," says Kelly.
Ask a friend to be there with you.
Having a friend or a therapist sit beside you as you write the letters can be helpful if you need to encouragement to get started.
Death isn't going to happen just because you write them.
Choose whatever occasions feel meaningful.
Weddings, births, but also moments that are individually significant – starting a new job, buying a house, retirement.
Say what matters.
Your love for the person to whom you're writing is what matters. Advice, maybe, but the love is what you want them to feel and what you want to express.
Handwrite, if possible.
Your own handwriting can touch the reader. If you are able to hold a pen to write, do it that way but don't let having to use a computer stop you.
Involve a trusted person.
You need a reliable person to distribute these letters. You can decide who that is and make your wishes known for how and when to share your words.