Last night I participated in an amazing event: Boston’s Leukemia and Lymphoma Society (LLS) Light the Night fundraiser.
I’m not in a position to download my pictures until I return home, but the colorful images of tens of thousands brightly illuminated balloons will stick with me for a long time.
I would estimate at least 12,000 survivors, caregivers, their families and friends walked the mile-long route around the world famous Boston Commons. Many walked the route multiple times.
There were fun vendors. Corporate sponsored groups dressed in matching coats or sweatshirts, many honoring loved ones that had died. I was moved and honored to participate.
But getting here was a completely different story. I learned Wednesday that I had become neutropenic again. My neutrophil (mature white blood cell) count was down to 1.0–and dropping fast.
Not a total surprise, since I just completed my latest 21 day Revlimid cycle. And it seems to be Revlimid that continues to drag these counts down.
My medical oncologist, Dr. Malhotra, debated proceeding with my scheduled weekly Velcade sub-q injection. In the end, he and I decided that it was important not to skip a week. Knowing that I was traveling today, Dr. Malhotra insisted that I take along a syringe filled with neupogen so I could self-inject yesterday afternoon.
Of course I agreed, knowing we are fast approaching close to cold and flu season.
Considering the circumstances, I couldn’t have picked a worse day to travel. My flight from Tampa to Atlanta–and then from Atlanta to Boston–were both 100% full. And the Atlanta airport was packed! I now wear a mask whenever I fly. But this was the first time I ever felt compelled to wear my mask during a layover, too.
We were packed-in like sardines. And I just didn’t feel well.
But I made it to Boston in time to share a truly memorable evening. And that helped make my long travel day worthwhile.
Feel good and keep smiling! Pat
October 12th, 2012 at 11:20 am
Pat, You are truly an amazing spirit! I have no idea how you manage to keep up with your busy schedule. We all appreciate your efforts! But you may want to consider taking it down a notch, flight-wise, especially during cold/flu season. Also, very smart of you to use a face mask on your flights.
October 12th, 2012 at 1:50 pm
I have a face mask for asthma and panicked last night when I couldn’t find it. It is to warm the air and not get attacks at night.
I hope that you don’t have to fly anywhere in the flu and cold season. When the plane is 100% full it is terrible for those of us who don’t have any cancer, it must have doubly bad for you.
Take care.
October 12th, 2012 at 4:28 pm
Good suggestion, Bob! I am considering cutting back on my “road show” for a while.
Is this Carol from near the Twin Cities? If so, where have you been and how are you doing? I featured Carol in my first book…
October 17th, 2012 at 10:13 am
Pat I met you earlier this month in FL (sling lady). Enjoyed books. Hope you are feeling better. I have been on a “drug free” since 9/3/12. Monday declared CR after several months of VD-subq. Dr. wants me on Revlimid 25 mg as maintence starting next week. Husband concerned about DVT and other side-effects. What is latest info on 14/16 translocation as that seems to be influencing med. decision?
October 17th, 2012 at 12:33 pm
Great to hear from you, Mitzie! How can I forget your “arm in the sling.” It was broken, right–but not myeloma related? Translocations are viewed differently by different myeloma experts. Some would ignore yours and proceed like nothing is wrong. Others might want to treat more aggressively, or modify the drugs to ones they expect to work better. So like a lot of myeloma related questions, there is no one answer. Second opinion time? 25 mg maintenance is a lot of Revlimid!. Why so much? You might want to ask. And you husband is right to be concerned. Some docs suggest a baby aspirin daily. Others–like mine–prescribe warfarin. A must for me, since I did throw a clot and was hospitalized with a PE three months into my initial Rev therapy.
October 21st, 2012 at 5:43 pm
Thanks Pat! I really appreciate your thoughts. Taking a little more time to reflect and research. Second opinion might be in order. Temporarily enjoying one more week of “drug free” before next appt. and blood draw. Registered for the Boca conf. M
October 22nd, 2012 at 1:30 pm
I will be speaking to the support Group in Boca November 5th. Watch for details…