I’ve come to approach this home stretch of recovery they way I performed as a dancer — one who’d always mastered the steps, to whom technique came second-nature and execution was essentially autonomic. No matter the degree of difficulty a given routine maintained, the execution made light of the intricacies and complexities involved. The ability to present an effortlessness, to mask the physical demand, is the mark of professionalism, and it’s an manner I’ve tried to carry over in communicating the recovery outside of this space.
What happens offline I do try to keep offline, separate from the social and political, and far from anyone else’s mind. But I know in recent months I’ve allowed some of life’s frustrations to slip over into my online interactions (explained below), and that’s something I’ll continue to work on in these final months of treatment and recovery. So if you’ve recently felt slighted or neglected at my hand, know that it’s my failing. It’s nothing you’ve done or invited. It’s entirely on me.
Meanwhile, if you’re one who follows closely but find yourself surprised by something written here, it’s not because you missed something. It’s because this is the only place where I’ll have gone into detail about the past number of months – that ‘keep the offline, offline’ approach, unless specifically asked. (In which case, I’m always happy to answer.)
Given all that’s unfolded since the last update, I think I’ll approach this post a little differently: You can skip to your preferred section of interest, or simply read straight through. But I like to provide as much detail, prefer to go into as much depth as possible (or as necessary) in everything I write, and the medical / personal things are no different.
For ease of reading (and writing), I’ll take this in three sections:
- The oral/dental: treatment + details of Project Smile
- The overall medical: greater physical recovery/rebuild, the gut, the reproductive/endocrine
- The personal: the challenges, the wedding, the future.
I’ll also include some photos to close out this entry.
The oral/dental: Highly technical and probably boring, so it’s OK if your eyes glaze over a bit here; it explains this entire treatment: what’s been done, what Tuesday’s surgery entails, and what remains.
The crucial (and most invasive) first oral surgery went remarkably well, as did the entire healing process. The diseased area of bone was removed, bone grafted from my jaw to rebuild the upper ridge, and extractions made where necessary to fully graft deep into / restore the area of localized osteoporosis. It was an extensive undertaking and a number of follow-up procedures were necessary to clip away exposed bone and encourage tissue growth over the area.
But things healed better than anyone expected. With the gut co-operating, absorbing at its most optimal capacity, the body was able to take to (and heal from) the graft without issue.
The relief that surgery brought was immense. I didn’t need to touch painkillers (beyond simple Motrin) post-op because the surgical pain was minimal compared to the daily, unrelenting ache caused by that underlying osteo deterioration.
Now without that constant ache, though, I feel the other areas needing attention. I notice the complete absence of enamel, and exposure of the dentin, throughout the mouth. One positive of being tied to the pureed diet is that I can somewhat avoid contact with certain teeth while eating. (And I’m always, always eating) Be it sweet, hot, cold, sour — everything causes sharp, lightning-like jolts down the shaft of each tooth because there’s no protection for the nerve tissue.
That will be rectified through the (comparatively to the grafting, simple) building up of tooth structure across the entire bottom row of teeth. Where necessary, it’ll be the root canal plus crown approach, particularly where the roots have weakened or become brittle (a sort of dental osteoporosis, if you will) from the repeated, extended bouts of malnutrition while the gut was non-functional and body absent of sufficient estrogens for bone/dental strength.
The upper teeth will have to be crowned, at least, as they were the ones improperly treated by the first dentist to rectify the absence of enamel and weakened root structure. If a root canal is necessary for the preservation of tooth strength and underlying bone, that’ll be the route taken. Those upper teeth will be the next stage tackled (after Tuesday’s operation) followed by the all the lower.
And ultimately the sublingual/submaxillary gland damaged by the cyst (spurred by that underlying, now rectified, bone infection) will be surgically removed, which will bring this entire treatment to a close.
The surgery I’ll have on Tuesday will be to solidify the grafted area, remove screws and insert rods and posts to ensure there’s minimal bone resorption and see to it the entire area is provided all necessary means to remain sturdy, healthy, and strong in the future. Single tooth implants will be strategically placed to add to that underlying ridge strength and if necessary, additional grafting (bone and/or tissue) will be done.
Project Smile remains active, and for me, crucial, though support and enthusiasm has waned considerably. Which was expected, and is understandable, as this is an extended process meaning the sense of urgency, along with the desire to advocate or contribute, has evaporated.
That’s how these things go, and that’s OK. Truth be told, I’m certain those around me are donated out. I simply cannot continue to ask those who’ve given far more than I could ever have imagined – and frankly, more than I’ll ever have deserved – to help shoulder a burden that is entirely mine.
I’m not sure how to go about tackling the remaining funds needed for treatment. Perhaps a formal, proper Project Smile fundraising event in 2016 is the next step.
That’s a decision I’ll tackle in the new year. If you’d like to contribute in the meantime, you can find a link at the very end of this post.
The overall medical: the greater recovery, the status of the gut, and recent adventures through the endocrine system
The physical recovery has been progressing quite well. I’m still required to maintain the carefully constructed, strictly regimented intake cycle, but that’s what’s working, not only in rehabilitating the gut and regaining the weight, but in preventing potentially-catastrophic obstruction, so I’ve no issue continuing to adhere for as long as it’s deemed necessary.
Though terribly abnormal and inconvenient, a recent intestinal setback served to remind just how beneficial the demanding dietary regimen has been. There was a recent, three week period where adhesions (internal bands of scar tissue) were tormenting the gut. With a simple twist of the torso I’d find myself being impaled by phantom javelins.
When these adhesion battles occur (as they will from time to time throughout my life) there’s not much that can be done. Cruel as it seems, it’s simply a matter of waiting it out. What’s unfortunate is that in response to an adhesion assault, the gut reverts to its lazy mode. It becomes irritated and inflamed, and digestion/absorption capacity suffers. Though it was only a few weeks, feeling that chronic exhaustion – living in a body once again depleted of nutrients, a vessel both powered down and unplugged for good measure – helped me appreciate how incredibly well, all things considered, I’d been feeling once again.
I’d hit 108 pounds before the adhesion bout. By the time it subsided and the gut was able to resume function, I was back down to 104. So going forward, should my safest bet to maintain optimal wellness be an only slightly tweaked iteration of what I’m doing now, I’ll fully comply without question. Yes, everything will require that much more planning and accommodation, but I’ll be alive, healthy, and functional — three things which were far from guaranteed not so long ago.
You play the hand you’re dealt, and if this is my final hand with the gut, well, I’ll play it to the best of my ability.
Which brings me to this week and some further reshuffling of the cards in the endocrine sphere. As I’ve touched on previously, my genetic hand in life hasn’t proved a winning one in many aspects. And when seeking to salvage some level of advantage here, the odds wouldn’t have it.
TL;DR: inherited primary amenorrhea could not be addressed due to the required intensity of hormone replacement therapy, which wreaked further havoc on the gut. So it was decided to continue with HRT at just enough of a dose to supplement for what the body itself (that base amount required for general health) refused to produce. The strategy: a daily estrogen-progesterone combination, which would allow for the body to benefit from the base-dose estrogen (see: bone health/strength) without accumulation of uterine lining — key to lowering the risk of related cancers.
The problem with this approach, we found out, is that as my recovery continues and the weight increases, the dosage of both the estrogen and progesterone requires constant adjustment. This is easier said than done as it’s incredibly hard on the body, plus the ongoing flux of the two hormones battling for the upper-hand was setting off the brain, triggering panic.
Though there were only a handful of those really, intense panic episodes, being always on edge is simply not a pleasant (or particularly constructive) state to maintain as the body takes its time to sort itself out. It’s because of this internal unrest, this agitation, that in recent months I’ve been, at times, not quite myself. Either unnecessarily combative (if not downright mean and bitchy) or completely off the mark in my assessments or judgements.
I did my best to wait it out, to see if things would level off, but they didn’t. When the physical symptoms began – extreme temperature fluctuations; chronic bleeding leading to severe anemia despite supplementation; drastic changes in blood work – it was clear this method just wasn’t going to work.
For an organ which made clear long ago it had no interest in being useful, the uterus is certainly making the work-around as difficult as possible.
After working though the options this week, seeing what the body was/wasn’t able to endure, my endocrinologist has set out a new treatment strategy which will begin following Tuesday’s surgery.
If my body takes well to it, it’ll be the forever/maintenance course to follow in terms of supplementing for genetically-driven endocrine deficiencies. If this new approach also proves ill-suited to my body, there is still a reasonable third option to pursue.
So eventually, we will land on a workable strategy here. It’s just a lengthy trial and error process, so more time is needed before I can say definitively that this area has been fully addressed.
But under the care of my incredible team, we’re getting there.
The personal: The wedding, the challenges, and the future
If you’ve followed TMI closely, or perhaps we chat privately, you know to some extent the mental/emotional toll the events of the past decade have had (individually and collectively) on how I perceive myself, where my level of confidence stands, and what I deem to be my worth. It’s not something other’s words can fix, nor one external reassurances can solve. It’s a self-wielded weapon that cuts deep.
Repeatedly. Daily.
But it’s a knife which edge dulls with time. The healthier I become, the closer to me I approach, the less damage it can inflict.
The weeks leading up to my sister’s wedding were consumed by incredible doubt and all-consuming anxiety, and I sought to give her every out I could:
“You know, I’d completely understand if you prefer I play a different role, or just attend with other family.”
“If you don’t want me in your pictures, I will take no offence; please, feel free to leave me out. These will be your memories, after all.”
“If I’m going to cause people discomfort I really am OK to just keep to the back, or off to the side. Don’t feel like you’re obligated to include me in any prominent way. I will understand.”
I’d worked hard, dedicated everything to the recovery, to be as healthy as I possibly could for that September date. But I knew I’d still not be at my best (a minimum 15 pounds short of it, in fact) and the somewhat crude place-filler over the bone graft was the best I could present at that time, smile wise.
I wasn’t going to bail on her, but I held out hope that, perhaps, with all the anxiety that comes with being the bride, maybe she’d decide I wasn’t quite ready for prime time and suggest I sit this one out.
While others were intent on looking gorgeous, I was just desperately hoping to look somewhat presentable, terrified I’d doom the wedding album to the back of the shelf with my presence.
I was the second bridesmaid to walk down the aisle, and while my brain harkened back to the stares in the waiting room, I saw nothing but smiles as I passed each pew. There was no disgust, no rejection, no turning away.
I was just another bridesmaid. I fit into the wedding party just fine.
I was greeted at the front pew by one of the groomsmen with a giant, welcoming smile and outstretched arm. I finally let my guard down, broke into a smile of my own; I took his arm and we made our way to the assigned seats.
That was the moment everything changed. I was at ease, knowing I passed as just another face in the crowd. I felt normal — not ill, not recovering, but just normal, for the first time in ages.
And it was wonderful.
The entire experience: the wedding, the reception, the reuniting with friends and family I hadn’t seen in some ten years, did my heart so much good… and and took a good amount of edge off that knife.
Though a far too short reprieve from everything medical, that trip home served to remind that yes, there is life beyond what I’ve been living this past decade, and yes, there is a future for me once this is officially over.
I’ve spent many years going through treatments and surgeries, working though various stages of recovery, all while half-heartedly telling myself “This isn’t forever. This won’t be forever.”
But after returning to Calgary following the wedding, stepping immediately back into everything medical, I finally felt – truly honestly believed – that indeed, this isn’t forever.
Forever exists across the finish line, on the other side of recovery; and that forever is not only within sight, but now firmly within reach.
This coming year, 2016, mid-to-end, will mark that new beginning. At some point over the next 12 months, guaranteed, I’ll step confidently out of recovery, and firmly into my future.
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A peek at progress made to date (click to enlarge): Two shots from the wedding in September.
The Bridal Party
Mother-And-Her-Daughters Dance
If you’d like to contribute to Project Smile, or would simply like to learn more, click on over to gofundme.com/apsmile
Aside 