A couple of posts ago I said I was ‘drawing a line’ under the Big Breast Adventure in an attempt to get on with my life. While part of that statement still holds true, the fact that I shall never really be done with this ramble has recently come to the fore. Thankfully this reassertion has been more with a whimper than a bang, but it’s a whimper nonetheless. In order to explain I have to go back to well before the start of the Big Breast Adventure.
You might recall me saying I’ve suffered from daily headaches since I was fifteen. These headaches still plague me even today although they have, understandably, taken a back seat to breast cancer in recent times. While trying to manage, and heck, maybe even find some answers as to why I might be suffering said headaches over such a long period, I literally ran the gamut of so-called cures. These treatments usually swung between the two polarities of conventional medicine and alternative treatments for the truly desperate – from heavy duty, pain-killer drugs to peppermint oil on my temples; food allergy tests to detox diets; CT scans and MRIs to kinesiology and energetic healing; personal training and ocean swimming to yoga and meditation. I’ve amassed an A to Z list of therapies and diagnostics I’ve undertaken and practitioners I’ve seen, the latter occasionally topping five a week for weeks on end – truly exhausting and not particularly efficacious.
Looking back now I’m gobsmacked by the sheer nervous energy and expense of all that effort and, even more astonishingly, how I could have failed to consider the distinct possibility that my obsessive seeking was actively contributing to the pain in my head.
Receiving a cancer diagnosis is a lot like this but from a different angle. Rather than running around like the proverbial chook with no head sourcing different practitioners and therapies for yourself, you (the patient) just sits back and gets given a ticket for one on a not-so-merry-go-round of specialists to see, procedures to be endured, more blood tests and scans than you can poke a stick at, drug regimens that could sink a ship – you get the picture. You enter a strange sort of parallel universe where it’s a whirl of activity but the outcomes are so incremental they are barely discernible to the naked eye.
So here are our two scenarios – (1) the self-motivated seeker of healing or truth like me and my constant companion the headache as opposed to (2) the chronic illness sufferer who has the equivalent of a medical Yellow Brick Road of referrals and treatments laid out before them. While these scenarios differ in origin there are two key similarities – (a) there’s an insane amount of activity and (b) the search for cures and answers was/is all external to me. Fast forward to today and we get to that pesky whimper thing I mentioned earlier where I find myself entering the vale of uncertainty once more.
After a years worth of pointy-ended treatment for breast cancer (2014) and a second year’s worth of tamoxifen drug treatment that was meant to shield me from a relapse but made me miserable in the process (2015) I am now drug-free and, by all accounts, as cancer-free as a former cancer patient can be. I have to get monthly blood tests done to monitor stuff like my white cell count (still on the lower-than-hoped-for side but okay in the main) and three cancer markers – CEA (Abbott), CA 15.3 and CA 125 for those of you who are still interested. Everyone has these markers in their bodies but it’s really only when you’ve been diagnosed with cancer that the medicos start watching these little suckers with more determination. If they start heading north it could be an indication that there’s a relapse afoot.
Throw into this mix the Exome Sequencing my Oncologist suggested and I agreed to undertake on my actual tumour just over a year ago. This genetic test identified a CDH1 mutation as being the likely culprit in my contracting a lobular carcinoma in the first place. This was very good news for two reasons – (1) that CDH1 isn’t hereditary – I didn’t get it from my parents and I couldn’t have passed it onto my children, and (2) the CDH1 mutation’s existence (or otherwise) in my system can be monitored with a simple blood test. Unfortunately this test cannot be bundled into the aforementioned monthly blood tests I’m obliged to get as it has to be processed by a special genetic lab. But that hardly matters in the scheme of things because monitoring for CDH1 provides an even earlier warning system than tracking elevated movements of cancer markers CEA, CA 15.3 and CA 125.
And now for the whimper…..the last three monthly blood tests I’ve had done show elevated cancer markers. I’m still well within the ‘normal’ range but the markers are elevated nonetheless, something that an ex-cancer patient should definitely not ignore. I’d had a CDH1 blood test in March of 2015 which came up totally clear and my Oncologist sent me off for another one in February of this year just to check. In an encounter that was akin to being summoned to the headmaster’s office he informed me that this most recent test had shown the re-emergence of CDH1 in my system. It’s in small measures at present and as far as early warnings go, my Oncologist likened this news to telling the captain of the Titanic there’s an iceberg ahead before the ship has even left port.
My first question was, I’ll admit, prompted by fear. Should I go back on the dreaded daily tamoxifen? The drug might make me feel like I’ve lost all interest in life (among other vexing physical side effects) but at least I would be alive. Thankfully my Oncologist displayed more cogent rationality and intestinal fortitude than I in that moment. He said we didn’t have enough evidence to prove that tamoxifen was the one thing keeping a lid on this situation. He also said it’s way too soon to have another test like a P.E.T. scan to see if there’s a cancer cluster taking hold somewhere. He offered to send me off for one of these scans if it would help put my mind at ease, but I couldn’t see how throwing roughly 500 bucks at a non-Medicare claimable test to find out nothing would actually achieve that.
While sitting in the Oncologist’s office being told there was nothing much to do at this point except keep testing, watching and waiting, I felt that familiar old previous-to-breast-cancer-headache-cure-seeking pull towards running around like a mad thing looking for answers, all of which are outside myself. But as Albert Einstein once said, “insanity is doing the same thing over and over again and expecting different results”. Thanks to these recent events on the Big Breast Adventure ramble, I now see what he meant. And so, dear readers, in an effort to prove the existence of my sanity I’ll tell you what I’m definitely not going to do as this situation unfolds:
I will not allow fear to take over and start running the show – I don’t know about you but leading with fear only seems to get me into deeper sh!t than I was when I started. As the good Dr Chopra says in The Seven Spiritual Laws of Success, forcing solutions on problems only creates more problems and I’ve found that to be true. Fear doesn’t go away of course, but at least one can recognise it for what it is – an emotion that has the capacity to keep walking past you if you’ll just let it. I’m reminded here of a scene in the James Bond movie The World is Not Enough where the fabulous Judi Dench’s M character is told by a boorish Admiral that he suspects she doesn’t “have the balls for this job”. Quick as wink M strikes back, “Perhaps, the advantage is I don’t have to think with them all the time.” With the greatest of respect to the male appendage, fear’s a lot like balls in my opinion. Whether or not you have ‘em, you surely don’t have to think with ‘em.
I will not descend into a spiral of misgivings, second-guessings and self-doubt regarding the decisions I’ve taken about my own health up until now – This only leads to mental obsession and a good deal of self-bashing which should come with a ‘Harmful to Your Health’ warning.
I will not discount myself and my own intuitions about what to do next – For too long I’ve bought into the belief that all the answers are ‘out there’ somewhere, ignoring the messages and guidance that come from within myself if I just take the time to ask and listen. That’s not to say that I will eschew sound medical or complementary practitioner advice from my trusted caregivers, but it does mean I run all this through my own internal filter to see what resonates. I’m also learning to surrender my issues to God, the Source, the Universe, Lord Shiva, insert-your-higher power-of-choice-here, trusting that there’s a divine solution for everything, that ideas and answers will come or, at the very least, I’ll find a trail of smarties (I prefer them to crumbs) leading me where I need to go.
So far this practice has netted me two fascinating and instructive books – How to Heal Yourself When No One Else Can by Amy B. Scher and Medical Medium by Anthony William, as well as a discussion with my Acupuncturist on the benefits of curcumin, an active ingredient in tumeric which is a proven, natural inflammation-buster. A lot of research is being undertaken into curcumin as we speak in an effort to determine if it might be a viable, natural preventative and treatment for cancer. I shared this information with my Naturopath only to find she was already on it, identifying and sourcing a supplement with the highest possible concentration of curcumin that I can add to my daily intake of supporting natural remedies. As you should know by now reading these posts – I don’t believe in coincidences.
But by far the biggest rabbit to be pulled out of the ‘Surrendering Hat’ to date is the instinctive prompt I received from my inner being to venture the suggestion of an unorthodox meeting between my Oncologist and my Naturopath. The aim of this meeting would be to compare notes and help me plot a course through this uncertain time of watching and waiting. I wasn’t really surprised when they both embraced the suggestion of a joint meeting, but a number of other people were utterly astonished that I’d (a) had the bald-faced audacity to suggest it and (b) that there’d been agreement to the gig from my Oncologist in particular. It would appear that learning to embrace raised eyebrows is now a fundamental part of my ramble into the realm of surrendering.
And finally, I will not make all of my dear readers wait so long for another post on the continuing Big Breast Adventure. Promise.