In 1994, my 19-year old daughter, Cristina was diagnosed with Leukemia and opted for a bone marrow transplant in an effort to save her life. The diagnosis, treatment and its side effects led us down a path that forever changed our lives. This story describes our constant encounters with the endless maze of doctors, hospitals, insurance companies, social service agencies, and alternative healers. I was a single mother living from pay check to pay check, and somehow coped with keeping us financially afloat, as I became Cristina’s full time, 24/7 caregiver. Cristina had the bone marrow transplant in 1995 when they were just coming out of being experimental and she had approximately a 15% chance of survival. Her courage, fortitude and heart were matched not only by her will to survive, but also to thrive.
.From what had been the shambles of our lives, Cristina’s on-going health issues, my bout with melanoma and horrific withdrawal from Xanax, emerged two warriors who became an unbeatable, unstoppable team. It is also the story of the friends, family and “strangers” who helped and sustained us, and a testimonial to the courage of the millions of caregivers and families living through similar situations. Cristina left this life on July 5, 2015 when she chose to die the way she lived… with dignity and courage. Together, we had fought the good fight and gave everything we could. The battle is now done, but this is not a hopeless story. Cristina has sent many messages since she passed, letting me know she is alive and well, no longer tethered to the earth in a body that endured the unendurable. She now rests among the stars, and I rest on earth, knowing she is safe, happy and no longer suffering. As she watches over me, I am learning to embrace our new spiritual relationship, while she guides the telling of our story. At that time... 20 years ago, there was very little help/support for caregivers. Especially coping with the effects of a bone marrow transplant, because they were just coming out of being experimental. I was a full time caregiver for many years and then, 20 years later, when Cristina got another very aggressive, fast moving cancer, I had to do it all over again. So many caregivers, like myself get on some medication to help cope with the "challenge" of being a caregiver under extremely rough circumstances. I don't think I will ever fully recuperate from the stress of caregiving for so many years, the side effects of the Xanax and the passing of my daughter.
Cristina was cancer free for many years. 3 ½ years ago she got a very aggressive fast moving cancer and although she had some treatment, she knew that even if she survived the treatment she would not have much of a life left. She decided to stop treatment and die on her own terms. Her death would have been much less painful and drawn out if the End of Life Options Law had been in place at that time. I ultimately wrote a book in the hopes that it will help other caregivers gain some insights, support and encouragement that even though this is probably the hardest thing most of us have ever done (or will do), there is still hope, spiritual growth and the knowledge that we have given everything we can to help a loved one.
In case anyone is interested, the name of my book is "Love in Action. My Daughter's Battle with Cancer: A Mother's Memoir. On Amazon.com...