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Elayne's Letter
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Here I go:
Medical Update: Many of you know that my ongoing dance with breast cancer has been about 14 years – in a bonus round! The disease has metastasized throughout my skeleton and the dura (the layer between the skull and brain). Every couple of years, or so, the lesions flare, meds stop working, and we begin to chase the disease with more radiation and different treatments. So far, although I’ve been “chewed up” a bit, but for a miraculous immune system, I keep on tickin’.
This past March, lesions flared on my sacrum and ischium (lower back and butt bone). After many futile pain clinic visits and injections, I entered 4.5 weeks of radiation. I am now beginning to walk moderately, and sit for short intervals, vs. lying down the majority of time. The most significant harbinger of healing is my ability to sit on comfortably on the toilet!! So the next time you all squat, consider it a blessing!
Coinciding with all of this, for the past 2 years, I’ve dealt with some bouts that were diagnosed as Bell’s Palsy (facial paralysis). Disturbing and quite unappealing. This condition, symptoms treated and resolved, had a bit of a lasting effect on my vision, hearing, smell, taste, equilibrium, and residual numbness. In August, just after my round of radiation, a lesion on my orbit (left eye socket) began to flare. The MRI revealed tumors on both optic nerves. The facial/neural issues have now been determined to be the results of the dural mets. There are 24 nerves that run from the skull, through the dura, and the breast cancer mets are beginning to pick them off. As I have fared well with the radiation-chase in the past to control mets, I have now begun the first of 18 treatments to my head. Yes, I am officially a “human glow-stick” – great to have me ride shotgun in case of roadside emergencies!
The radiation prognosis is fairly positive. They believe they can arrest any further damage to my vision and hearing, and the additional symptoms may subside. The side effects, however, do indeed suck – fatigue, burns, fainting, chewing, smelling, tasting, swallowing, loss of hair, etc.. The upside, my friends, is that I have never seen myself bald before – a new adventure! A new palette for experimentation – hats, wigs, scarves, graffiti, tattoos, bumper stickers, advertising! The custom mask created for me is reminiscent of Hannibal Lechter – I think Halloween could be a money-maker for me this year! C’mon, laugh with me!!!
Oncology-wise, I will be entering a clinical trial at Wayne State University in Detroit, for a PARB Inhibitor treatment. Waiting to be scheduled for an assessment. I haven’t delved into any research yet, but have been informed about very positive results in stabilizing progression.
Lifestyle: As I mentioned earlier, the lower part of my body is beginning to respond to healing and is progressively improving. The biggest challenges for me right now are:
a) Not being able to play music – my PASSION. Unable to stand or sit through a set, or maintain the stamina to play an entire gig.. I am on a “sabbatical” from my
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b) . . . band – which has been a family to me for 22 years – and other musical projects that I cherish.
c) Not being able to carry, lift, rock , run and rough-house with my 18mo. old “grandbaby”, Bella Layne – a deep source of joy for me.
d) And . . . not being able to generally take care of normal, everyday business, fix-it projects, home/lawn care – which I truly enjoy doing.
e) Eating ( great appetite – can’t get it down). I’m down to my college weight, but emphatically discourage this kind of diet! (damn, I wish I saved those spandex pants)
These limitations frustrate me to the core, but I do believe that I have an art in adapting and sniffing out alternatives – once I regain my patience and determination. (I’m also on a low dose of steroids which is beginning to kick in a little bit of energy – better living through chemistry!)
Support and Management: My dearest, closest partner in crime, Nancy , has taken an unpaid Family Medical Leave of Absence from her jobs to do, well, EVERYTHING. She is my medical advocate, liaison, pit-bull, scheduling, transcribing, researching, transporting and accompanying me to all appointments. In addition, she has extended all four of her limbs to keep the fort down – cooking (the best!), nutrition and exercise commando, housekeeping, laundry, shopping, errands, pet care, correspondence - typing. She keeps me laughing and offers wonderful, safe and unconditional soft places for me to fall, if I need. I wish a friend like this for all of you. The girls, Heather and Bree, although way out of town, visit often and we speak daily. With Bella in tow, Heather swoops in almost every other week, takes charge like a tornado – rolling up her sleeves and jumping into the chaos. Meanwhile, I get to bask in Bella’s newest antics, words, and radiant light she brings into my home. My family, from New York to Texas, has been a constant stream of support and love.
My band family, friends, band fans, local club owners, and circle of local musicians have been extremely caring and supportive throughout this entire ordeal. Kathy, Bill, and Raz make me laugh and keep me posted on all the crazy gigs I am desperately missing. Raz has been keeping my vehicle running, and regularly ferries over gifts and bad jokes. The Kathy Ford Band has organized a benefit on Sunday, September 27th, at the Grand Café (Sir Pizza) in Old Town, from 2pm until 9pm, with great bands, raffles, auctions, great food and drink - and an amazing staff. I complete my last radiation on the 25th, but will try to be there in person. Warning: if I do make it, I will be scary looking (. . . well, more than usual)!
Needs: A very hard place to go for me. So many have asked, “What can we do to help?” I have always considered myself a private person, independent, and self-reliant. Involved with a 30 year career in the “helping profession”, asking for help for myself is an extremely difficult and humiliating position for me to be in. When this dance started 14 years ago, the armor began chipping. I am now facing physical limitations that are bringing me way too close to the “slow down” or “can’t do this anymore” wall – a lot earlier in my life than expected (but then, again, I am in the bonus round!).
My pride pushed aside right now, I am asking those of you who are willing for advice or suggestions for low-cost/volunteer community resources/churches who can assist in minor to moderate home repair/yard projects (i.e., a little plumbing, carpentry, tree trimming, gutter re-attachment, garage/basement purging & hauling). These are things I
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. . . have been able to do myself – and loved doing – until this past spring. Unfortunately, a strict fixed income now can only support necessities, with the growing medical and medications costs looming right behind the utility bills. I think I’ may be responsible for purchasing the new PET scan at Sparrow – or paying off some doctor’s mortgage. Anyway – they own ME right now.
Medicare is my sole coverage ( too sick to qualify/too poor to afford supplemental coverage, and too rich – within $17.36 – for Medicaid or social security prescription coverage to kick in). 80% of my care is covered, with the remaining 20% of treatment standing in line outside my door. I’m whittling! Cancer is big business. OK, I gotta stop this one – I can feel my political and ethical ire rising! I need to avoid stressful rants!
Spiritual Comfort: Yep – I’m going there – as personal and uncomfortable as it may be for me and some of you. The proverbial sick/frightened-person musings? I believe spirituality is an integral and primal component of being human. All of us are on our own unique paths, drawing strength and comfort from our personal deep wells along the way. Those of you who have known me for a long time, know that my particular path has been eclectic, diverse, and, occasionally weird. I have always been intrigued – both personally and intellectually - with the human spirit’s connection, or need to connect with something outside the realm of our reality. I journeyed, haphazardly, from archetypal imagery, the 19th century American spiritualists and millennial communities, Eastern beliefs and cultures, to agnosticism, humanism, Unitarianism. And now, for quite some time, a return home to my Christian roots, with more depth and understanding than ever before – a relationship, not a religion.
I am an “at-large” member of a little store-front church way up in Ovid – Trinity Fellowship – where 50 people on a Sunday morning is a full house. Pastored by Dr.s Jack & Tess Clarkson, lively music, great laughter and a unique spirit of love abound. It is a “let’s just do it, not talk about it” church that, indeed, puts their faith and love right into their footwork. They have been vigilant and constant in their support and prayers for me. Again, another supreme blessing.
THE FINAL PARAGRAPH: I told you it would be here. This is the most blathering I’ve done about myself since my ninth grade autobiography assignment.
I want to thank ALL OF YOU for your continued support, comfort, cards, good thoughts and energy. The power of each of your spirits is, indeed, the VERY BEST medicine, and is keeping me buoyed in this storm. This healing goes far beyond the doctors and treatments – it is being held close to my heart, every day.
I am deeply grateful to all of you.
My love,
Elayne
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