I haven't posted for well over a year - because life has been good and busy and no major health developments to report. I even just a month ago was in NYC speaking at the Sloan Kettering Cancer Centre's transplant celebration, reporting that 6 years and 3 months later, no sign of leukemia. Was transferred into the "long-term patient" clinic at the Bone Marrow Clinic in July. Leukemia seems to be quiet right now.
Unfortunately a couple days ago, I found out I have a new challenge to deal with - Breast Cancer. Yep. WTF. Exactly. My first mammogram at age 40 prompted an ultrasound and then biopsy last Monday and Thursday afternoon I went to the Bone Marrow Clinic and got results - invasive ductal carcinoma. Just about lost my breath and my mind at that moment. Totally believed the schleroderma (skin thickening GVHD from transplant #3), scar tissue from 4 central lines in my chest over 17 years and oh yeah, scar tissue from the surgery and skin graft I have in my neck and chest following flesh-eating disease was showing up in the ultrasound as unusual. But probably the most convincing argument that this would NOT be cancer, was that I already did that. 3 times.
I left the BMT in shock and then started to realize I had no information whatsoever. "Someone will call you. Likely you'll need surgery quite soon, and biopsy of lymphnodes". That's all. And so my own words that I have stated at many many Strategic Clinical Network - Cancer core committee meetings and Provincial Advisory Council - Cancer meetings over the past three years as a volunteer patient advisor came to haunt me "Uncertainty for patients and families is often worse than learning the prognosis or the treatment itself".
Friday morning I woke up in pure panic and really afraid and started trying to gain some control. Phoned to get a copy of my pathology report. Need a consent form, print consent form. Find out who has my information, what's their phone number. Leave scrambled message to please phone me with any information. Book appt. with therapist. Get call back from Breast Health Clinic office - appt with Dr. Graham, breast surgeon on Thurs Nov 6 10:45. He will do exam, review reports and suggest next steps. Drive to deliver signed consent and get the report. Read pathology, ultrasound and mammogram report. Google terms in pathology report to understand it. See therapist. Finally feel slightly more in control. Slightly less uncertain. No less angry at the unfairness, but slightly stronger.
So for now I'm focused on Thursday. That's all I can handle right now. And I know I have an army of incredible people out there who will support me, and most will say that I am so strong and will beat this. I know I've been strong before and I am sure I'll be strong again, but honestly I am not strong right now. I'm just surviving. This is a totally new challenge, and after being beaten up three times before, my organs having taken more than the maximum toxicity already, the ledge that I have managed to not fall off before is thinner than ever, so I am also more afraid than I have been in my 17 year journey. I'm not afraid of what I might have to do, I'm afraid of how far it's gone and what treatment I might be excluded from.
I already have been overwhelmed by kind thoughts and responses from the few people who've heard. and of course, asking what they can do. I am so appreciative. For now, sending energy, strength and focus in whatever form you can would be excellent. And live your life fully today. Cheers....Tricia
