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
Sunday, 2 November 2014
Thursday, 5 September 2013
Ant hills
September 5, 2013...really? How is that possible. Life continues to roar forward with an incredible pace, and my blogging energy just can't keep up. With over 8 months since my last post there is simply no way to report even a summary of that period. So I'm just going to cover my health and a few thoughts and hope that is enough.
I passed the 5 year mark post-transplant #3 June 12 and also marked 16 years since the famous golf day June 21. With Alberta's floods marking that day, it was an interesting date to unfortunately see so many people's lives changed overnight, and I was so lucky (and most of my close friends and family) to be spared, but a strange reminder of how life can change without warning overnight.
Since my last post, my body has been sending a few messages of weariness - mainly my digestive system and bladder - and so the past few months have been a series of blood work, urinanalysis, colonoscopy, stool collections and an upcoming cystoscopy - really fun stuff! Doctors have eliminated some more critical sources of the issues, and with one more medication and a nutrition plan in place, I am fairly close to making the "bumps in the road" somewhat less prominent. In the bigger picture, I am of course beyond the 2-3 years the doctors hoped to give me back in 2008 with the experimental protocal pre-transplant #3. Which of course is worth celebrating - and if you're around October 5 and want to go for a walk, I will be out for Light the Night (see the link on the sidebar to join the team or support the team).
Certainly my health issues have not kept me from my favourite pasttime - travel of course, and since my last post I have experienced exceptional moments in Maui, Vegas (x2), Vancouver (Shelley's book launch!), Edmonton, Regina and New York. And next Wednesday I head to a couple Greek islands, Italy and Germany (another visit with Oliver!) for some more discovering. I also have not let up on my volunteer contributions to improving the cancer patient journey with my work with Alberta Health Services strategic clinical network and advisory council. And on top of the milestones I mentioned above, had time to celebrate mom and dad's 45th anniversary and dad's 65th birthday with some exceptional focus. So the roadbumps really don't win.
And if I needed inspiration to further put my issues and uncertainty about the future in proper background position, I have had it from so many sources this year. Beyond the every day remarkable inspiration my brother gives me in his ability to face unspeakable challenge, and the fuel I always feel from my family and friends, I had a few further amazing examples worth mentioning:
- The strength shown by a close friend and coworker when her husband, also a friend, found out he had terminal cancer in early March and passed away only a month later. The way in which she, her husband and their 8 year old son squeezed every moment they had together, managing not to be consumed by the unfairness of the shortness of their time together, was increidble, and her strength to digest her loss and navigate a new world as a new single mom continues to be amazing.
- The tenacity and spirit shown by a little girl named Kinsley, who came into the world earlier than planned in January (due in late April) at 2.3 lbs, and her parents, sister and family in suriving the months while she fought in ICU, made me remember that the body can do anything when the mind and spirit are engaged. Seeing her giggling a month ago, I was not surprised but clearly overjoyed when her mom (my cousin) reported this week she has no development issues to speak of.
- Up for a visit to Dr. Aung in Edmonton yesterday, I sat down in the waiting area and noticed a young girl, likely pre-teen age, in a wheelchair accross from me. She had some sort of computer attached to it, and her parents sat by her side, wiping her mouth every few minutes for the drool that escaped. She stole a number of looks at me, and one of those I just locked eyes with her for as long as she wanted to, at which point I realized she was basically there, just trapped in a body that didn't allow her to be her age and do anything that she wanted to, and she was just staring at me almost to try to let me see her through her eyes and not her body.
And if I didn't already realize that stuff in the past few months were just road bumps, these inspirations remind me they are more like anthills. Cheers to everyone and your anthills :)
I passed the 5 year mark post-transplant #3 June 12 and also marked 16 years since the famous golf day June 21. With Alberta's floods marking that day, it was an interesting date to unfortunately see so many people's lives changed overnight, and I was so lucky (and most of my close friends and family) to be spared, but a strange reminder of how life can change without warning overnight.
Since my last post, my body has been sending a few messages of weariness - mainly my digestive system and bladder - and so the past few months have been a series of blood work, urinanalysis, colonoscopy, stool collections and an upcoming cystoscopy - really fun stuff! Doctors have eliminated some more critical sources of the issues, and with one more medication and a nutrition plan in place, I am fairly close to making the "bumps in the road" somewhat less prominent. In the bigger picture, I am of course beyond the 2-3 years the doctors hoped to give me back in 2008 with the experimental protocal pre-transplant #3. Which of course is worth celebrating - and if you're around October 5 and want to go for a walk, I will be out for Light the Night (see the link on the sidebar to join the team or support the team).
Certainly my health issues have not kept me from my favourite pasttime - travel of course, and since my last post I have experienced exceptional moments in Maui, Vegas (x2), Vancouver (Shelley's book launch!), Edmonton, Regina and New York. And next Wednesday I head to a couple Greek islands, Italy and Germany (another visit with Oliver!) for some more discovering. I also have not let up on my volunteer contributions to improving the cancer patient journey with my work with Alberta Health Services strategic clinical network and advisory council. And on top of the milestones I mentioned above, had time to celebrate mom and dad's 45th anniversary and dad's 65th birthday with some exceptional focus. So the roadbumps really don't win.
And if I needed inspiration to further put my issues and uncertainty about the future in proper background position, I have had it from so many sources this year. Beyond the every day remarkable inspiration my brother gives me in his ability to face unspeakable challenge, and the fuel I always feel from my family and friends, I had a few further amazing examples worth mentioning:
- The strength shown by a close friend and coworker when her husband, also a friend, found out he had terminal cancer in early March and passed away only a month later. The way in which she, her husband and their 8 year old son squeezed every moment they had together, managing not to be consumed by the unfairness of the shortness of their time together, was increidble, and her strength to digest her loss and navigate a new world as a new single mom continues to be amazing.
- The tenacity and spirit shown by a little girl named Kinsley, who came into the world earlier than planned in January (due in late April) at 2.3 lbs, and her parents, sister and family in suriving the months while she fought in ICU, made me remember that the body can do anything when the mind and spirit are engaged. Seeing her giggling a month ago, I was not surprised but clearly overjoyed when her mom (my cousin) reported this week she has no development issues to speak of.
- Up for a visit to Dr. Aung in Edmonton yesterday, I sat down in the waiting area and noticed a young girl, likely pre-teen age, in a wheelchair accross from me. She had some sort of computer attached to it, and her parents sat by her side, wiping her mouth every few minutes for the drool that escaped. She stole a number of looks at me, and one of those I just locked eyes with her for as long as she wanted to, at which point I realized she was basically there, just trapped in a body that didn't allow her to be her age and do anything that she wanted to, and she was just staring at me almost to try to let me see her through her eyes and not her body.
And if I didn't already realize that stuff in the past few months were just road bumps, these inspirations remind me they are more like anthills. Cheers to everyone and your anthills :)
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