June 13 2012
Where to begin. Seems as though there is much to catch up on, yet, still somehow in the same place as before. Or so I thought. I had just finished radiation at the end of my last post, I think. I had celebrated the completion of a long journey. What I didn't realize, perhaps, this is only the beginning.
The beginning of a lot. Of interesting realizations. Okay, done with treatment, NOW I can resume whatever it was I was doing before my diagnosis. Let's see... (as I remind myself by reading my first entry), making mani-pedi appointments, planning recipes, preparing for holidays, researching vacation destinations. Looking for a job. Big time stuff. That moment (defined here by a few months - a very long moment) that you realize you know so very little about yourself and the world. There is no going back completely. Not in the way it was before. Cancer treatment is much much much more than mammography, chemotherapy, surgery, physical therapy, radiation, tamoxifen. But it's SUPPOSED to be that easy! That's the deal when you have something as bad as cancer. The prize is that you can resume your life after, everything is the same and familiar. RIGHT? What color should my toes be today!? It should be that easy. But somehow it's more of a challenge than I ever expected. I'm still very much here, but why do I feel like at times something that was good died inside me anyway? Just as I was in denial of the tumor being there in the first place - to the point of arguing about it with the surgeon who did the biopsy of doom - I expended a lot of energy fighting with myself over whether I'm truly done with treatment, in the metaphorical sense. The answer is a resounding no. Maybe I'll never be. This realization is downright leveling to my sensibilities.
This, I've learned, is survivorship. This ubiquitous presence cancer subliminally assumes inside you. The ultimate irony. Thanks to the toxins and hacking off a whole body part it's gone from inside me only physically, but it remains there in a much more complex way. I'm getting further and further away from the after effects of daily treatment drudgery. There are only minimal physical side effects remaining. Well, maybe phantom itching on my arm that when I reach over to scratch I realize it's still numb (and probably will always be). Sensations in my elbow and shoulder that are usually more haunting than truly painful. Strange tickly chills that come and go without warning. My port and scar are still intact for the time being. Somehow I've developed this strange attachment to the "button", as the girls refer to it, protruding from my right side. Well today at least. The tangible aspects of this disease are becoming rather easy to manage. Undoubtedly I've emerged from this relatively unscathed. So many people faired far worse. I am forever grateful for the support from the medical community, family, friends, strangers, for even the simplest but most heartfelt sentiments supporting my quest for health. Every little word and thought and positive vibe, not to mention cards, gifts, meals, offers for help, support and tokens of good health and healing from strangers sent my way was deeply felt.
So how to move on, mentally, spiritually, and psychologically beyond the physical aspects of the disease is I believe at the heart of survivorship. There are worse fates! I never realized survivorship to be its own official phase in this process. But it does and it's real and an integral part of the journey. There's a whole new person in here I feel compelled to get to know and like (and love) all over again.
I started by sharing my story at a small fundraiser for an organization assisting families touched by cancer. The illness that I rarely spoke about beyond friends, family and medical personnel is what I decided I should share with about 100 strangers. I was thankful for the open bar. I used to do so much public speaking for work, so years later, grabbing the mic for this purpose seemed surreal, in a calming sort of way. A reminder that, while I feel new, elements of the old me are still there and purposeful. And sometimes those reminders are valuable. I am still overwhelmed when I think about the people who reached out to help us. Giving back in this way seems like a good start to create a bit of equilibrium on the road trip of survivorship. I collected more hugs and wishes for good health at this event. And even gifted with a terrific yoga mat and gift certificate for a spa....recounting the course of my treatment with a smile.
I also joined a support group in cooperation with the hospital for women in all phases of treatment. We are all down a breast or two, some opted for Honda Civics for their treatment, others such as myself went for the Bentley of treatment plans with all the bells and whistles. We all have something unique and inspirational to bring to the discussions. We also do group physical therapy in a 94 degree water therapy pool with a PT, a Bruce Springsteen fanatic who leads us through various exercises and stretching techniques in the pool. It's more like a giant well-appointed sauna, the pool like a womb, my new re-rebirth. This time with enough hair on my head to cause me to look nearly 3 inches taller when it uncontrollably frizzes out in the heat and humidity of the pool. To feel weightless AND taller AND among people who truly understand as we all sing to Thunder Road...what could be better!? Even if I resemble Art Garfunkle or Lyle Lovett in the process. The pool is a no judgement zone. I left our meetings happily exhausted in a cleansed, balanced sort of way, emotionally and physically.
June was chock full of so many milestones, our tenth wedding anniversary, birthdays, and high school graduation. I am so incredibly proud of my son. I am not sure when he became so mature, well spoken and polished. I was not ever that confident, smart, and genuinely intriguing at 18 as Ed. This summer I am preparing to send him off to college, a whopping 50 minute car ride away to Easton PA. And I don't really mean the refrigerator, sheets and shower caddy. I mean *I'm* preparing *me* for college. It may as well be on another continent. I used to try to convince myself it won't be difficult to send him away - or maybe I really mean watch him leave - that after all, he still needs me, I'm still his mother, and I'm cool, and I get it. Okay, he's far more independent than I dare outwardly give him credit for, I'm not cool in the least, and no, I don't get a lot of these feelings I have. He is a reflection and product of my parenting, I tell myself. And generally, that's a very very good thing. I am craving the pats on the back now more than ever. Ed is a very very hearty pat on my back. The kind that make you nearly fall over. Even if he's off doing what college students do. Which reminds me. I'm not very cool, but I DO know what college students do. Some things change at a breakneck pace, and some things never EVER change. I've got a decent handle on the things that never ever change. Refreshing to keep that perspective on those days you feel your most ancient. Ed knows that I know. We've discussed it at length. That's important!
July 28 2012
So July 30th I hope to be even farther away from the odyssey that took up too much time and energy last year. I'll be having my final surgical procedure to nearly complete my reconstruction. For starters, I came to the conclusion that the port had to go. It was flushed several times since it was used last in October, and it has never been reliable for even a simple blood draw. So even though the usable veins I have left are all quite small and buried in the middle of my arm and nearly unreachable, it doesn't really benefit me to leave the port in either. No, I don't want to return to the infusion room every month for a flush that doesn't work unless I stand on my head, twist my neck to the left and cough violently to force open the vessel. When this happens, my fellow immunocompromised chemotherapy patients usually end up requesting a new seat away from me on the opposite side of the room. This is not the fastest way to make new friends. Doctor said he could probably clean up the scar a bit too. Which I learned is much longer and meaner looking than it should have been. Doctor will also refine and minimize my abdominal scar - I am not sure how - and perform liposuction to rid of roughly 1 1/2 lbs of extra fat from my hips (you read that right) for additional contouring, to get me as close to my pre-cancer state as possible. Then I'll have a seaweed wrap, hot stone massage and strong cocktail by that therapy pool. No not really, at least not Monday. He will, however, perform a tiny skin graft and finish my nipple, which will then be tattooed a natural looking pink to match the real one I still have. I was thinking of some alternative tattoos and wondered if Doctor would consider, instead of the basic pink circle.....maybe an eyeball, staring back up at you...a bird...a heart, or a sign that says "objects here seem larger than they appear" or something like that. I'm not sure. The options are endless. I could get it pierced, there's no feeling there anyway. Really, all of this is quite liberating, and the source of lots of laughter over glasses of wine with my loved ones. Amazing how a teeny tiny piece of skin can mean so much to a girl. The once enviable rack will be back. And I am looking forward to the final product of me. Whenever that will be. That's worth a pat on the back too, I think.
No comments:
Post a Comment