Friday, January 20, 2012

A Road Less Traveled...or, Looking for My Very Own Towel


If you don't know where you are going, any road will take you there. ~ Lewis Carroll

I have never been part of the "in crowd".

Not in my school-aged years ... The nuns at the parochial school I was sentenced to would strike me on my backside or palms of my hands with a yard stick for having the audacity of questioning the unquestionable. The kids looked at me askew because of my oddity, fragility and grotesquely thin frame. A result after having spent nearly a year in a full-body cast after surviving being struck by a drunk driver, clocked doing 80 mph when he hit me. That, and my fascination with both the Kato character from the Green Hornet series (shame on Seth Rogen), and Barnabas Collins from Dark Shadows (anticipating Johnny Depp & Tim Burton's interpretation) set me apart.

Not in the teen years. ... In junior high I was the scrawny, underdeveloped, introvert. Quiet and studious. In high school, I stayed under the radar locking myself in the dance studio; writing for "above" and "underground" school newspapers; engaging in self-destructive introverted behavior as an alternative to "battling the adolescent beasties."

Not in the transition years when I opted, by default or circumstances, for a first "real boyfriend" who was seven years my senior. A boyfriend who was already the antithesis of who I wanted to become, and who ended up not being much of a boyfriend.

Not in the college years ... I was a late-start freshman, having taken time off between high school and college to work and earn money for tuition -- in an inhospitable Muslim country. I attended a very "preppy privileged" private university. Instead of being the cheerleader suggested by "boyfriend" I choreographed for a small modern dance troupe. Instead of living in dorms, I rented apartments in the surrounding gang-ridden neighborhood. Instead of joining the dominating "Greek" system, I worked 30 hours a week inputting horse racing stats into a computer program for a restaurateur / bookie racing enthusiast; and then as an editorial assistant for the Korean Consulate cultural magazine. In my spare time, I studied martial arts at night in the basement of the neglected PE building on campus; took skydiving lessons at Lake Elsinore; and would disappear to San Francisco - taking advantage of the $28 RT fare specials offered by PSA on their commuter flights between Burbank and SFO.

Neither in the law school years ... I started law school 5 months pregnant with my first child; attended a top tier law school, at night, so I could work for a DC law firm in the day to pay for tuition. Breast-fed while studying at any given hour - first child never slept between 7 p.m. and 1 a.m. Fulfilled my duties on as a Senior Editor on law review while confined to bed for 4 months with my high-risk second pregnancy (thankful for the cutting edge technology donated by the law firm...a laptop...this was 1991 and such technology was not available for general consumption).

Not in the "booster club" mom years with my two older children ... I was one of the few moms that was not living vicariously through their children, giving grief to the coaches because my child was not being doted upon as the next Olympic hopeful.

Even as a lawyer, I have been the odd-person out, pursuing "street-law" advocacy over more lucrative professional avenues. Much to the chagrin of my eldest child, and despite cutting my teeth on corporate civil litigation.

This reality has never bothered me.

And it came as no surprise to me that when I developed breast cancer, and didn't find out until the disease had already advanced to stage III, that I could not lock step with the well-developed Pink Brigade.

I agreed to the mastectomy. It was a visceral decision. The cancerous tumor was the only thing giving form, mass and shape to my left breast. I wanted it excised.

I then, however, opted out of everything else. All the cookie-cutter adjuvant treatments that I was besieged with -- offered up with icy portents of fear and dire statistics that if I didn't dive immediately into the toxic cocktails I would be accelerating the inevitable.

I dove instead into the less-chartered universe of naturopathic alternative treatments. Even in the alternative medicine world, most people I met and do meet pursue the naturopathic route only as a complementary addition to conventional adjuvant treatment (radiation and chemo) versus as a true alternative.

My treatment choices since my diagnosis in July 2009 have been very different than most. Certainly not "mainstream." And, yes, I sit here two years later having the invasive lobular carcinoma metastasize into my lymph nodes -- so I acknowledge that I fail the audition to be the poster child for "success." At the same time, I have been learning more regarding alternative medicine, and naturopathic doctors. There are a plethora of choices that I was not aware of previously (my then ND, however, should have known, shared, educated and pushed at me...but Dr. Daniel Rubin, I am trying to let go of my anger toward you <insert twitching eye and gritting toothy smile here>) and are now engaging.

At both stagings of this disease, the conventional medical community has provided me with only dire possibilities with little to nil positive outcomes. As such, it did not take me long to conclude that I deserved to explore other possibilities. After all, at the beginning of this journey the medical community was highly recommending aggressive chemo...despite an acknowledged 4% efficacy. Two years later with METS barking at my heals, the medical community highly recommended aggressive surgery and uber-aggressive radiation (no chemo this time...I guess once you drop under 4% possible efficacy even the med community throws in the towel on that option)...with an admitted only 20% potential for five-year survival if I lock-stepped. I am no mathematician, but gambler??? Hmmm....

If I am going to roll the dice I want better odds. Even if it places me back into the all-too-familiar position of being the oddity.

There has been a downfall to my choices, however. One that has been nagging at me more lately than before.

It is lonely out here on the less-travelled path.

I am used to being alone. I am comfortable (sometimes too comfortable) with alone-ness. But being alone is a different state than loneliness.

And the wisdom of Suzanne Somers is not the panacea I am craving. I have more faith in white mice and dolphins.

I do have access to a supportive blogging community. But even here, I am the odd-person out. I cannot commiserate with the devastating effects of chemo. I cannot commiserate with the hair loss; the lymphedema; the bloating; the chemo-brain. I cannot share dietary tips and recipes in battling the nausea. I cannot suggest topical relief for the inevitable skin damage from radiation treatments; nor hand-hold because I too have experienced the collateral weakening or damage to other organs as a result of the radiation. I cannot laugh and offer alternative "beauty" tips on how to fashionably conceal hair patches and baldness. I cannot offer or seek guidance as what to expect from the "next step."

I have no one to empathize with, no one who has dealt with my particular experiences on this alternative roadway. I have searched and posted on varied cancer support sites. Looking for someone who has or is walking a similar treatment path.

The universe is silent.

I have yet to find a fellow traveler who understands my reference to the "rumbling dryer" sounds that permeate by head when hooked up to a high dose vitamin C IV. The uncontrollable shaking. The "spaciness." The taste of the vitamin C within minutes of hitting my veins. The frontal headache and dry heaves. The ache and fatigue that washes over me for the remainder of the day after a treatment.

No one to bounce concerns off of ... is it a reaction to the supplements or indications of disease progression? Do they feel the same daily fatigue? Do they feel the same aches, crunches, pains? Have they felt the restless lethargy that I battle? Do they too get so very tired of the regimen, the scheduling, having to write all your own warning labels?

No one else to b*tch with as to people's reactions and responses: "But you look good...." "You would never know...." "You think you are tired...."  "At least you have your hair .... "

Would I make different choices, now that I have been on this path for over two years? Travel the more defined roadway? A roadway that sadly is becoming a congested highway as our society becomes more "advanced"?

Absolutely not.

I am too much of a coward to travel the conventional adjuvant highway. I studied that dog-eared road atlas and found it far too harrowing. I do not have the mindset.

But alas, even the Hitchhiker had his towel. A comforting and useful object. At this juncture, most days I feel that I just need my own towel.

A towel, it says, is about the most massively useful thing an interstellar hitchhiker can have. Partly it has great practical value - you can wrap it around you for warmth as you bound across the cold moons of Jaglan Beta; you can lie on it on the brilliant marble-sanded beaches of Santraginus V, inhaling the heady sea vapours; you can sleep under it beneath the stars which shine so redly on the desert world of Kakrafoon; use it to sail a mini raft down the slow heavy river Moth; wet it for use in hand-to- hand-combat; wrap it round your head to ward off noxious fumes or to avoid the gaze of the Ravenous Bugblatter Beast of Traal (a mindboggingly stupid animal, it assumes that if you can't see it, it can't see you - daft as a bush, but very ravenous); you can wave your towel in emergencies as a distress signal, and of course dry yourself off with it if it still seems to be clean enough.

More importantly, a towel has immense psychological value. For some reason, if a strag (strag: non-hitch hiker) discovers that a hitch hiker has his towel with him, he will automatically assume that he is also in possession of a toothbrush, face flannel, soap, tin of biscuits, flask, compass, map, ball of string, gnat spray, wet weather gear, space suit etc., etc. Furthermore, the strag will then happily lend the hitch hiker any of these or a dozen other items that the hitch hiker might accidentally have 'lost'. What the strag will think is that any man who can hitch the length and breadth of the galaxy, rough it, slum it, struggle against terrible odds, win through, and still knows where his towel is is clearly a [person] to be reckoned with. ~ Douglas Adams


  1. Wow, TC, brilliant posting. I admire your being true to yourself. What gets me is this quote: "But being alone is a different state than loneliness."

    Yes, I'm sure you cannot commiserate with people who have had conventional therapies. However, you are still part of a group -- one that has had/has breast cancer, many of us who had mastectomies.

    Very moving post.

  2. TC - this is a very powerfulnand poignant post. I'm sorry that you feel so alone. Even though there are many people around us it can feel so overwhelmingly alone at times. Just being metasatic can do that, therapy choices aside. So I think I do get it somewhat. Two names come to mind for the non-conventional route who may be good contacts. I'm thinking of Laura who blogs at The Cancer Assasin, and Ann Fonfa who runs The Annie Appleseed Project. I'm going to post this blog to my FB page and see if anyone comes forward. Also even though our treatment choices are very different, I'm here to talk any time you need it. Rach

  3. Very thought provoking, TC. You call yourself a coward for not taking the conventional route, but I see you as more heroic. I chose the conventional route, with alternative therapy support, because I thought I wasn't brave enough to choose the alternative road.

    Today, I am five years out from diagnosis. I have stage 3c ovarian. I have had constant chemo and used acupuncture, cranio sacral work, massage, reiki, yoga, IV vitC treatments, diet and supplements to help me. I found a oncologist who was willing to work with an internist who employed a naturopath to help me through this nightmare.

    You are not alone, maybe lonely? I know I am, but I have a good life and would enjoy hearing more from you. Contact me anytime and like Rachel said our treatment choices might be different, but I believe we are all on the same journey. Your experiences might help me, I hope.

  4. I am overwhelmed by the substance of the comments. Thank you. As Maggie referred to in her current blog post, sometimes the vertigo of standing at the edge of the cancer precipice can overtake us psychologically as well as physically. @ Beth - you are spot on. We are all reluctant MMoC (Members of the Mastectomy Club). I shall not forget. @ Rach - I look to your blog almost daily to feel connected. Thank you fore being an ongoing inspiration. @ Maggie - I welcome a new friend. Reach out anytime.


  5. TC,
    Like you, I've always been an introvert of sorts, so sharing my cancer experiences on-line feels like a stretch at times. I admire you for taking such control and choosing your own paths. I feel bad that you feel left out and lonely because of this. I keep trying to express through my writing that each of us must tell our own truths. You are living and telling yours for sure. Good for you and thanks for this honest post.

  6. Nancy - I can advocate (hopefully in an articulate fashion) for my clients when I tell their story. To verbalize my own story makes me feel far too vulnerable. Writing, however, is cathartic and empowering. Thank you for be willing to read my "truths" without judgment, and being supportive while I "stretch."

  7. The journey begins when one enters the forest at the darkest moment where there is no apparent entrance or egress. It is a circuitous path with many twists and turns. A trailblaer, a pathfinder, a seeker traverses the unknown territory alone. Pilgrims, alone and together, we meet at the crossroads. Some of us rummage around in a collection of yester-years that you've bundled up and given to Goodwill - tossed away some might say. Curiously, we are more alike than you think. Trying to navigate a medical system of protocols and procedures, deeply wounded, confused, misunderstood, and isolated we stammer. Like a heartbreak, lost voices become an aesthetic arrest - a beauty to be discovered through the silence and in the spiral return that takes you away and brings you back to the many and to the few who walk beside you and to those who will know you only through the words you write.

  8. Anonymous - beautifully and sadly stated. Thank you.

  9. TC, I am at a loss for words. Your post makes me want to beat up everybody in your life-path. Your part about the nuns sadly reminds me of an old movie, little boy falls into a frigid river, survives, but suffers paralyses for a long-time, finally is able to attend the one-room school house and the school master repeatedly beats him for his physical limitations. When his father catches on, he beats up the school-master.
    However, your courage to take the alternative path is formidable. Watching my mother be tortured for 13 years by conventional medicine, with no quality of life at all, only to die a terrible and painful death made me realize I would never take that path. I was diagnosed just prior to her death and my sister just after, and my mother’s death haunts me. Thankfully I did not go beyond a bilat, but should I ever have to revisit this, I do not wish to travel in my mother’s path. Alternative is far from easy, the treatments, while not inflicting collateral damage on the body, are often difficult to endure…not to mention the huge commitment to the protocol chosen. I admire you, your courage and your willingness to share all of this. I hope you find that fellow traveler, and I too, have posted this to hasten this search. Btw, I met a woman today who healed via the Hope4Cancer Inst, with Dr Tony Jimenez. If you would like to be connected to her, please let me know.

  10. TC,
    I could certainly relate to the nun issue! In fact I wondered if we went to the same Catholic School our nuns would single you out in front of the entire student body, make you "Own" your sins even if you were innocent!

    When I was diagnosed with Stage3 Grade3 multi focal cancer with node involvement. I was literally paralyzed with fear. My friend who is a firm believer in alternative health care was trying to convince me to try Ginseng therapy by a Dr in Vancouver BC. I contacted them to find out what I could in ways of treatment but they were not willing to (according to the office break privacy issues) by divuldging personal information. I didn't want names I wanted number as per cure rates. I opted for the standard treatment of Chemo though I refused radiation. After a considerable amount of research radiation was merely adding another band aid on your boo boo for re-enforcement. I said NO not for me I had all my markers bottom line the day of treatment No#1 I jumped off the table and ran out never went back. We live in such precarious times dealing with cancer. In a way you are damned if you do and damned if you don't. You are trying to juggle what treatment is best for you. Confusion, did we make the right choices? There is no guarantee regardless what road we travel. We need to stop beating ourselves up. It isn't our fault that through out all the millions of research dollars that are committed we have to live in such limbo. I was told I needed to take Arimidex to prevent recurrence I do not have a drug plan all came out of pocket. The drug was killing me I felt so desolate with insurmountable pain in my joints. Only to be told months later by my Oncologist there was only a 3% chance the drug would work....when I told him I was quitting these drugs, I will take my chances. 50/50 To me now it is quality over quantity.....
    Whatever treatment you decided on just know you have the support of your blogging sisters and friends here.. We have a great back up to hold you up !!
    Love Alli ......xx

  11. very moving words tamera- I am opting for traditional radiation for my cancer but I don't relate to anyone else either - I find the cancer journey very lonely -whether you choose traditional or non traditional treatment-no one can understand what you are going thru- its such a personal journey - and an empty one so much of the time. I can certainly relate to your frustrations with the medical profession. I could write a book already with the way I have been treated - the things that have been said to me by nurses and doctors and the way I feel like an object when i go for tests or fitting of my radiation mask. Cancer sucks - and its every where! If only there was emphasis on figuring out what is giving this disease to all of us - is it our water, our air, our food? what is it???? Stay strong - you have so much to accomplish and lots of kids to save! Keeping you in my prayers always - kathy

  12. Elyn - your scrapiness makes me grin ear to ear. Thank you for sharing your resolve. I deeply and sincerely wish for you that you remain a short-term "hitchhiker", delegated only to the "relief stations", supportive of others. Hugs ~TC

  13. Alli - you are so right: "We live in such precarious times dealing with cancer." The prevalence of this chronic disease, whether it be bc, prostate, colon, lymphoma, etc. It is portent of the times in which we live. To put it eloquently...our willingness to sh*t in our fish bowl because it's 'easier'. Additionally, the cancer industry only hinders by the incessant medical marketing for the purpose of profit, with no regard to the individual patient. Kudos for knowing your own priorities and having such a strong sense of self-preservation...and defining that in your own terms. And I count you a fellow traveler. Thank you.

  14. Kathy - I hear you on all levels. You have indeed stepped into a different universe. And the only things that make sense is the reality we, personally, bring to it. I had a momentary lapse in the strength of my own reality these last weeks culminating in this post. In retrospect, it does appear to be collateral fallout from this last bout of pneumonia. Travel-fatigue. I will regain my footing, find my towel, and with conviction hold my thumb up again to the universe. Thanks for reading, sharing and your kind words. ~ Tamera

  15. TC, I echo the others' sentiments here and applaude your chutzpah for picking the path that suits YOU. You obviously know yourself and you know your limitations (as Clint Eastwood famously said, "A man [and a woman!] has got to know his limitations." While we each have made our own choices, we all are tethered together by this thing called cancer, and that in and of itself makes us sisters. I was struck most by your comment, "I am too much of a coward to travel the conventional adjuvant highway." What you are doing is SO not cowardly! It is brave, and brazen, and sincerely YOU. Listening to the voice inside yourself that tells you what to do and not do is the key to opening every door you walk through. Your cohorts in the blogging world are here waiting for you. We are in this together! Though we each must navigate our boats ourselves, the waterway is indeed filled with women rowing alone. Just shout out; we are right here. xoxo

  16. Renn - "Though we each must navigate our boats ourselves, the waterway is indeed filled with women rowing alone. Just shout out; we are right here." Thank you for the nurturing reminder. I am resolved (didn't think I would use that word this year) and empowered to fight the fugue. I find my strength, selfishly, in giving - I am here for you, and all our fellow rowers. Hugs ~ TC

  17. Hi TC,

    I feel like we should talk on the phone. I could give you a big huge hug. I just saw a link to this thread on the CCC facebook page, saddened by Rachel's death.

    I am a Nurse (for almost 33 years), and I was diagnosed with Stage 2 DCIS in April 2007. It was a slap in the face, since I was big into nutritional supplements and bioidenticals for several years prior to that. I saw plenty of Cancer Victims in the hospital... but they were not adults, they were children. So sad and, well, I don't have words to describe what I saw.

    Turned off by Traditional Medicine for a while, and after the initial "stunned deer-in-headlights" feeling upon hearing "you have cancer" by my female physician that almost seemed to care, I was shuffled from appointment to appointment that seemed almost "scripted" it made me nauseous:

    Biopsies, (numerous) bone scan, MRI, Chemo Oncology, Radiation Oncology, Mastectomy, Reconstruction-Plastic Surgery, tamoxifen... boom... that's it.

    Not happy, I then went to Mayo, where I got the same crap, the only difference was that Mayo was so much more of an impressive place. They insisted on putting me through more biopsies, as if the dozen samples I already had taken were not good enough. Another big mistake... actually letting them do it. After three out of an expected five days of testing, I left in tears. I then had consults with CTCA, and Seattle Cancer Center. All a bust. No pun intended. One thing changed my cancer destiny, while on a break between appointments at Mayo, my husband and I had a phone consult with a Dr from Sanoviv Medical Institute in Rosarito, MX. We decided right then and there that we must try to go there. We borrowed money from my parents, and then my in-laws gave me some additional funds to go there. It was the best decision health-wise that I have ever made in my life. I knew of Sanoviv because the Dr who started it, also started the Nutritional Supplement Company I was involved with (and still am).

    Long story short, I was there for three weeks. I had a lumpectomy and 12 lymph nodes removed. No chemo, no radiation, no tamoxifen, no toxic drugs of any kind. I had guidance from the Lord, that's for sure. I had so many alternative therapies that are illegal in the U.S., too many to get into here. One of them was high dose Vitamin C Therapy, which I had NO problems with. I didn't see anyone else there who had problems with that either though. It will be five years for me this summer. Not that I'm hung up on that number, but other people are, so that's why I mention it.

    I can relate to the loneliness. You can talk to me any time. I too have felt totally invisible and even "left out" with other survivors and on other cancer blogs. I don't say much because I can't relate to hair loss, sickness from chemo, burns from radiation, the trials of reconstruction, etc. I've even gently (sometimes not so gently) made recommendations, but I don't want to over-step my bounds, whatever that means. Sometimes I read the stories and they make me so profoundly sad, knowing what I know, and feeling like no one will listen. I still have scars too though, but I look about as normal as can be, and no lymphedema, and for that I am happy. I do, however, appreciate the research of Suzanne Somers. I did a lot of what she did. I have a few of her books, and much of the stuff (alternative therapies) she's talking about, I experienced at Sanoviv.

    So there you have some of my journey in a nutshell. Feel free to contact me. I'd love to congratulate you on your road less travelled!!!! You are a warrior and a trendsetter. ((((Hugs)))) to you!!! Sue

    1. Suzan ~ I so appreciate you sharing your story here. There is bittersweet comfort in knowing that there are fellow compelled "hitchhikers" out there who have traversed some of the same terrain. I too was kicked in the gut finding out about my initial diagnosis, after being so diligent in my health and lifestyle. I also understand having to self-edit when I see and hear about the horrific results from cookie-cutter "treatment." Whether our choice is "slash & burn", toxic cocktail, or alternative medicine...each treatment option is a labyrinth with no definitive road map. That is the one defining fact that unites all of us breast cancer "road warriors."

      So glad to share the road with you. Wish it were under better circumstances. Reach out any time. I am here. <3

  18. Someone posted your info on our Facebook page. Hope you found After I rejected chemo, then radiation and hormonal treatment, I proceeded to do (still do) an entire protocol of alternative treatments. Found so much that 'worked for me', I founded the Annie Appleseed Project. Now we host educational conferences in West Palm Beach, FL and Sept 14-15, 2012 in SF.
    Good for you!
    Ann F.