Even the fearless, the seemingly undaunted get fear[full]. I hope everyone who reads this post understands that it’s ALL about being authentic and transparent, NOT about pretending we don’t get scared…
Capturing THIS Day [4 years ago]
It’s fair to say that people consider me to be an individual of fortitude, strength, and perseverance, but what they don’t see is that at the core of this warrior-heart is an individual who gets scared, who doesn’t have the nerves of steel that my life so often requires. You see, at the very end of the day, I remain human just like you.
Today is a down day. I have down days; days that I drag myself out of bed, into the shower, [and] out the door to get my son to school on time. I rarely have a plan for dinner [and] my house is a monkey on my back.
One of my greatest desires has been to help us, cancer survivors, especially those of childhood cancer, take care of ourselves by recognizing that cure is NOT without consequence, yet wellness is attainable for me, for us.
Today has been an ‘in my face reminder’ that cure, even separate from heart transplant, will forever increase my future health risk[s], [and] quite honestly, with each day that passes, I become more and more convinced that it is the few who are interested in discussing, much less facing those risk[s] head on. And the lack of survivorship research, don’t EVEN get me started.
Today brought with it the scheduling of 6 month follow up studies that include an MRI of my breasts [and] a diagnostic mammogram to ensure that 3 micro-calcifications have not transformed into a malignant process. Scheduling that I have been putting off because if it wasn’t scheduled I could keep it compartmentalized in this talented brain of mine.
The studies quantify my personal risk of breast cancer at least equal to, if not surpassing, that of an individual who carries the breast cancer gene [and] those studies demonstrate that risk increases across time.
Thus, I have also elected to consult with a breast surgeon to discuss elective mastectomy in light of the risk I acquired from 4500rads to my left chest in 1978. The office called to schedule my consult THIS day.
Add to my treatment-related risk, the infectious risk posed to me by being a heart transplant recipient [and] I am sure that you can appreciate that not only the possibility of breast cancer, but the potential for poor wound healing associated with the reconstruction of radiated tissue are weighing quite heavily on my heart [and] mind.
To add insult to potential injury, the treatments that would likely be offered to treat breast cancer are the very treatments that did irreparable damage to my [God-knit], native heart.
I don’t want to DO cancer again: EVER. It hurt the first time [and] I am confident it will hurt even more should there be a second go round.
I can not fathom submitting to chest radiation and an anthracycline-based treatment plan that would hurt this most special heart so graciously gifted to me by the family of a 17 year old young lady.
How is it even possible that this may be the path I am facing?! It seems unusually cruel to me.
What I want is to re-capture the light-hearted person that I used to be; what I want is to watch my 9-year-old son become a man; what I want is to enjoy my grandchildren; what I want is to grow old; what I want is to enjoy the continued health I’ve been graced; what I want is to be able to exhale, relax, and revel in the life I have been given; what I want isn’t necessarily what I will get.
Today is a down day, an off day, a sad day; a day that gives me great pause; a day that I struggle to see any good that could come from the worst case scenarios running rampant through my mind in THIS moment; a day that I find myself long on questions [and] oh-so-short on answers; a day that although I knew would come feels like a sucker punch, a blindside that I could have lived without.
That being said, I am not a person without hope, without perspective.
Today, however, I am allowing myself to be human without any attempt to find the upshot in the events of THIS day though I will cap it off with my signature exclamation point!
Update: I have opted to watch and wait. I am a previvor, of sorts, as elective mastectomy as means of risk reduction is perhaps in my future though for different reasons than those who carry the BRCA gene. I am screened with alternating mammograms and MRIs every 6 months all of which have been read as normal for the last 2 years following 2 years of 4 core biopsies and every 3 month screenings.
I am thankful, yet mindful.
Reprinted from 10/09/2012