I went to see the genetics counselor this week. I saw her the first time when I was going through treatment. My parents went with me then, three and a half years ago now. I was told to bring a family member with me . . . especially if I could bring my Mom or Dad or both . . . “to go over our family history” . . . a cancer genealogy of sorts.
I was bald. I was too thin. I was pale. I was facing a lot of unknowns and trying to be strong for my parents and trying to . . . act normal. But nothing was close to normal. We all pretended pretty well. Jeannie, the genetics counselor greeted us and took us back into a room – a makeshift, mini living room . . . where people come and go and attempt to act normal.
Come on over and sit for a while and pretend this is all normal.
And yet, for so many, it is normal. It is what has had to become normal.
I remember being surprised by the almost evening time feel of that little room – no day light came through and there were no fluorescent, clinical type lights, but instead a small couch, a couple of chairs and a lamp on a coffee table. It was this forced space inside the cancer center (just outside of this room are chemo beds, doctors and nurses and every clinical thing you could imagine . . . and lots of very sick people).
That day is largely a blur now – other than the odd juxtaposition of chemo beds, IV poles, cancer patients and medical staff with this little, dimly lit, almost cozy, forced space where we were gently guided by Jeannie through medical terminology and explanations of gene mapping. At the end of that session it was Jeannie’s recommendation (based upon my family history) that I have genetic testing. She knew it would be denied by my insurance company and attempted to prepare me for a fight . . . that it needed to be done and that she would help me through the appeal process (after the inevitable denial).
She had already helped so much – by educating me, my parents, but mostly by listening to my parents, answering their questions and being so gentle with them. My parents are brilliant people. Jeannie was everything they needed that day: smart, informative, calm, honest and gentle all at the same time. She was so kind to my parents and so understanding of their need for truth, but also for their need for hope.
10% was what I had been told . . . that I had a ten percent chance of being here today. Today. Wow. Incidentally, I did not share that statistic with my parents . . . or anyone at the time. However, it did and still does, affect how I live and think about my life.
As Jeannie predicted back then, my insurance company denied the request for genetic testing (to see if I carry the BRCA 1 or BRCA 2 gene). She attempted to prepare me to fight my insurance company. But, I didn’t have it in me to do it. I decided to preserve all of my energy for other battles (which were seemingly constant back then).
So this week I arrived back at the cancer center, with the infamous “cancer tunnel” (yes, they call this very long walk way that takes you from one part of the facility to the cancer center “the cancer tunnel” . . . I still can’t believe that . . . but, I digress).
I met with Jeannie again this week – she was the same peaceful, calm and gentle being that she had been three and a half years ago when I was a complete emotional wreck . . . and when my parents were daily grieving (as was I) my illness and prognosis and all of the fear and anxiety that came along with that.
Jeannie remembered me and remembered my Mom and Dad. She explained how the testing is more extensive now and that my insurance company had already approved the testing – so it would be done that day.
No fight, no battle – it was approved. And now, you get more for the same blood draw (more extensive testing, that is). Yippee! (The blood draw took two nurses and three attempts – my body is done with treatment, done with needles, done cooperating . . . the nurses felt really bad for the number of pokes . . . but, I kind of thought it was funny – the fact that my veins were seemingly running away from them). Veins can be very visible and present and look like they are perfectly read to be tapped and then . . . they can run and hide. That is what happened . . . as if my body was saying get that thing away from me!
So, I had a little victory this week – as I was fully prepared to have to come up with the four grand to have the genetic testing done. It is important now because I may make decisions based upon the results (do I keep my ovaries for example . . . are they ticking time bombs . . . or can they stay) and there is the matter of Jujubee who is now 20 years old – does she need to worry about this breast cancer thing in the sense that it is truly in our genes? So, I need to know now and now I get to know without having to come up with thousands of dollars. Yay
I am on my way to Santa Monica today . . . seeing my oncologist . . . it is a somewhat routine appointment. Although it is two months early and it is on the anniversary of my first “suspicious” mammogram . . . the day cancer entered my life in the first real way . . . I knew it that day when the results were “suspicious” that all of my tiredness now had an explanation.
So, I am bringing my list of things that I both hope will not lead to scans or MRIs and hope will lead to further testing. Such a weird place to be – hoping and not hoping for the same thing. I have had pain that I shouldn’t have – that always causes worry for someone “post” cancer (as if there is such a thing, but, you know what I mean). So, I worry a bit. But, I also have been working a lot and doing a lot and not swimming and not stretching and I did have that fall . . . so there are explanations for it all and we will just see what my oncologists thinks. I think she will say we should wait a few weeks and see if the pain continues and if it does continue, then she can order scans.
This is weird post, not at all really about what I want to be posting about. There is so much going on (and not going on) in cancerland that I want to write about. All of the fallout for Livestrong and the continued nonsense of Susan G. Komen (trust me, I will be back on that soon), survivorship, and Rachel. Rachel who died last year. Rachel who was amazing and who is missed by so many. I miss her. She was amazing, insightful, possessed a sharp and incisive and unmatched wit. She made things happen and to this day, her blog and her words continue to change the face of cancer. Here is a beautiful post dedicated to Rachel written by my friend Kathi, the author of the blog: The Accidental Amazon – check it out here: Accidental Amazon
Say some prayers for me and say some prayers for Rachel’s family and friends who are nearing the one year anniversary of her passing. She is so very missed. You can read more about Rachel here at The Cancer Culture Chronicles