Thursday April 9, 2014, started as all my days do…caring for my adult disabled son. After dropping Channer off at his Day Program, I had a follow up appointment with my surgeon to get the results of a lymph node biopsy. After the doctor dispensed the normal chit-chat, he turned to me and quite bluntly told me “Cookie, you have leukemia.” I remember rather vividly, putting my hand out in front of his face, as if that was going to stop any further devastating news. I remember asking how my lab work looked, to which the doctor replied ” your labs are perfect…we found this way too early to do anything about. Go home, read up on CLL, and disregard a lot of the chatter you’re going to come across.” The ride home, which was a few miles, seemed to take a lifetime and was filled with sobs and hopelessness.
After arriving home, I immediately jumped on the internet to begin my research….it was horrible and overwhelming to say the least! I was pretty sure I would be dead soon and put Forest Lawn and Rose Hills on my speed dial. I also scheduled my first appointment with my local oncologist/hematologist. My husband and 2 of my 3 children accompanied me on my visit, with my daughter accepting the important role of designated note taker. My stomach was in knots as we waited. Finally the doctor came in, sat down, and took out his iPad. He began reading aloud the different stages of CLL. I asked him what he was doing, to which he replied “I’m on Wikipedia.” We sat there with stunned looks on our faces! My daughter, not missing a beat with her note taking, handed me the note she was working on. Let me just say it contained a very colorful description of the doctor, to which my son added his opinion! I still carry that note in my CLL notebook and visit it from time to time….always brings a smile to my face!
After the disastrous oncology appointment, I ventured onto a CLL online support group and sought some guidance. I received a variety of opinions and advice, some great…and some very disturbing. It was through my initial foray onto this website that I was contacted by an amazing woman, Barb Massey, who told me about a local CLL support group and invited me to attend. And that’s where my journey truly began.
I attended my first meeting, not knowing what to expect. I have no doubt I had that “deer in the headlights look” as I listened to everyone’s stories. I heard words like “MRD negative, IVIG, Ibrutinib,” total gibberish to my ears! When it came to my turn to speak, I told the tale of Dr Wikipedia and how I was positive that I had cancer of the bra strap, eyelashes, and possibly my big toe, all from the fact I had felt a twitch there earlier. I also met my personal Holy Trinity that night, Barb Massey, Terry Evans, and Brian Koffman. Without the wisdom and kindness of these three, I’d be totally lost. They taught me the importance of building my CLL team, starting with a CLL specialist. It was through them that I learned of Dr. Kipps at UCSD, and through Dr. Kipps, I learned of Dr. Rosen at City Of Hope. These two amazing men are my greatest blessing, and neither of them reads Wikipedia information to me!
I have witnessed our support group help some of our members in their darkest moments, using their collective wisdom and experience, along with a healthy dose of humor. I would be lost without our gang of merrymakers! Our group gives me hope for a bright future….a future where CLL will be cured.
It’s truly beneficial for me to belong to a group of my peers. Every member is an inspiration and blessing to me. My Holy Trinity keeps me grounded and tolerates my occasional moments of fear over my bra strap cancer returning! They are my lifeline, and I’d be lost without them. My hope is that every CLL patient be as fortunate as I am in surrounding themselves with an amazing group of supporters!
May health and happiness be yours~
I was diagnosed with CLL/SLL in April 2014. My FISH test came back negative, I’m mutated and I have Trisomy 12 in 15% of my cells. I am currently Watch & Wait, and plan on staying that way for many years! I am a wife, mother, soon to be mother-in-law and a yoga enthusiast. I was a Hospice volunteer for 10 years, and delivered Meals on Wheels for 3 years prior to that. I’m a caregiver to my disabled adult son, who resides at home with my husband and me. I practice Gratitude daily and always find a reason to smile everyday!
Originally published in The CLL Tribune Q2 2016