Friday, May 13, 2016

Living (& writing) with #BreastCancer...& why I haven't published anything yet this year #Sorry

Hello beautiful people!

I hope you're all doing well. I'm okay, just battling the stupendously cold weather that slammed down on Mauritius this week.

Anywho, by now, you all prolly know I have been diagnosed with cancer. Twice. It's been 5 years since the second diagnosis. I don't really talk about it (it's boring, and there are way more informative and funnier blogs from cancer survivors out there) but I think the time might have come to speak out a little more about what it is to live once you've been diagnosed with cancer.

In short, it sucks! LOL. But hey, you're alive, still there and kicking, getting to spend another day with your loved ones, do things you like, enjoy life, develop yourself physically and spiritually... Still, it's a struggle, and I'll get into more detail in a few.

Let me bypass that for a second and tell you about something else, that's somehow connected. I'm an author. Meaning, I write books...for readers to enjoy. As an author, too, I have committed to writing a few books a year, most of them from series with a loyal following (thank you, readers!). One of these is a PNR/UrbanFantasy series I co-write with my bestie, author Natalie G. Owens.

So here's the thing - looking at my schedule this week, and also while speaking with Natalie, and also through hearing from our fans, I've come to realize that the first 4 months of 2016 are a blank writing-wise for me. In so doing, I am also dragging Natalie in this mess, because we have both committed to bringing Eternelles (that's our co-written series, btw) book number 3 out early this year. And where are we at? Well, we're expecting a few key scenes from me before Natalie can work her magical voice in there and wrap it all up...

Because of me, we are letting our readers down...and I am also letting readers of my series down. I'm sorry for this...

Is this a matter of choice? No! I will never consciously go out of my way to be such a biatch as to get peoples' hopes up and then not deliver. But unwittingly, I have done it. Wanna know why? The reason lies in some dates and yes, living with cancer.

I was first diagnosed with breast cancer 11 years ago in March, at the age of 22 (yes, it happens so young. Case in point - me). Went through the whole hoopla - surgery, chemo, radiation. Then moved on to a series of regular appointments as there was no further treatment for me, given my cancer had not been triggered by hormones (there are medication regimens out for treating this triggering-by-hormones thing, as I would soon find out.)
Fast forward 5 years - back then, if you'd been cancer-free during the five years since your last treatment, you were considered unofficially in remission. Not cured, mind you - you're never cured of cancer. But yeah, remission meant you're as close to normal as a cancer patient can get.
I would've hit my 5-year mark in October...and would you believe, in September, there I find another lump, in the other breast... Back to the surgery table, no chemo this time as it was caught early, but radiation, and then the hormone therapy (which basically makes your body go into menopause, never mind if you're still in your 20s when this is taking place!) So this hormone therapy (drug called Tamoxifen, which is an estrogen inhibitor - won't go into all the boring details. Let's just say it negates the effects of estrogen in the body...exactly like at menopause, when estrogen starts to dwindle down) - well, you gotta take this medication for 5 years. When do I start it, after we get the hormone receptor results? January 2011.

Fast forward another 5 years - remember, there is still that unofficial remission line you could cross at that mark, though doctors are oh-so-cautious now about bandying that term around. When would my 5-years be, aka also stopping the meds? January 2016 - you got that right.

My life was going as normally as it always had until December 26, 2015, when I had my appointment with my care team at the hospital. I had been writing, having just finished a rewrite of a reverted story (Upon A Stormy Night, which I made a prequel in the Daimsbury Chronicles series) and had also translated it in French! I'd also just handed Natalie my next scene in the lineup of the upcoming Eternelles book.
This was supposed to be a routine check - get in, answer a few questions (prolly from a junior doctor/resident who looks like he's just out of pre-school), grab prescription for hormone therapy, get out - all while you've lost hours in the hospital waiting room, cramped in between people like in a tin of sardines; most of the time, people who have no concept of deodorant, body odour, bad breath, mouthwash, or even brushing their teeth. Joy, NOT.
But there's a new doctor there - my regular doctor, a lovely, wonderful lady, had retired, and her case load had come to this new, very young doctor. I don't know if he's still green or wet behind the ears medical-wise, but there he goes, starting to talk of recurrence, procedures that should've been done to make sure I had the least chance of recurrence possible, genetic markers' testing, my risk factor which is apparently very high...

My head starts to reel. I mean, look at this. One month before my 5-year line last time, I'd been smacked with another bout of cancer. And here we were again - I hadn't even realized it was again just 1 month before the next 5-year line, and once this dawned upon me... Cue the panic! When I'd had my second surgery, even the surgeon had been certain I had a benign lump. I'd had to fight him and the doctors all the way to request a mastectomy rather than the localized lumpectomy they wanted me to have (lump was barely 2 inches big, so it couldn't be cancer, according to them, despite my history). I fought, and I won my mastectomy...but they had taken just the flesh, and not the conduits where cancer cells can spread through - aka lymph nodes. According to this new doctor, I was at a higher risk of cancer cells, if they ever decide to come back to my chest wall (yeah, you can still have cancerous cells develop on that wall despite not having any breast tissue left. That's the world of cancer - you have it, you can get it. You don't have it anymore, and you can still get it!)
And where would that cancer spread to, or else, where could it originate again? In my ovaries. That's also why he wanted genetic testing done, because those markers could show if I was also at risk of developing ovarian cancer more than the 'average' woman.
Best route to go? Surgery, to remove those lymph nodes. To have the clearer picture possible, he orders tests - echographies, X-rays, blood tests. Still, it's a given that surgery will be necessary, and I get a next appointment in March, when we should have all the results.

By the time I come out of that consultation room, I am no longer breathing. Unfortunately, my husband hadn't been able to accompany me inside that day, so I am reeling all on my own from all this news. And yes, it's 1 month from the 5-year line...again. Was the cancer coming back for me? Will 4 years and 11 months be the only rest I will be able to glean before I have to wage another battle again, in what seems now to be a war I just cannot win?

I speak with my husband; I speak with Natalie... I just know I won't really be 'living' for the next 3 months, until we get those results back. Tentatively, I already pencil in 'surgery & recovery time' in my diary for the first 2 weeks of April, which would've been Easter break and thus no school for the kids. Both understand the surgery is a priority, and I have their full support.

Almost 6 years ago, when I had my second mastectomy, I went the route of the free government-funded medical system, aka local hospitals, for my care. Because I'll be honest - I couldn't afford to be paying a minimum of 150,000 rupees for this procedure in a paid private clinic. We just don't have that kind of money. And that was just the quote - imagine if there are complications, etc. The bill could easily ratchet up another 100K. No can do. So we went to the hospital...where I shared a ward with 35 other women...with no privacy...restrictive visiting hours and again, no privacy with your family...2 toilets available for 36 women, and one of them was Out of Service...a bathroom with no hot water...a drafty ward and just a threadbare blanket (and it's frowned upon to bring in your own blanket)...bed quality, let's not even go there (redeeming qualities were the amazing, fantabulous, really lovely nurses on duty. And in the surgery recovery room, the nurses wake you calmly and speak to you and gently push your hair from your forehead to soothe you when you wake up so disoriented and groggy. A far cry from the private clinic where I woke up with tiny slaps to my cheeks and a woman blaring in my ear! Hospitals also seem to use less anaesthetics, so there is much less nausea and vomiting post surgery. But even these great points pale against the rest, but beggars can't be choosers, so people with no money have to fall on the free hospital system.)

Lymph node surgery is a quick procedure, less than an hour. Open, nip, tuck, sew, out. Can be done on an out-patient basis in a private clinic (in during the morning, surgery, recovery, then out this same afternoon. No overnight stay). Plus you get your own room, and conveniently for us, there's a private clinic really close to our house. I wasn't gonna have the women's ward episode again, sorry. And I so was NOT staying overnight for a procedure that could be over and done with in 8 hours - hospitals would keep you for at least 3 nights (eve of procedure, procedure day, then one more day+night under observation).
Now, where to get the money? Hubby is the sole earner in our household. My parents offer to lend us the fee for the surgery, my in-laws do, too. But we're not going to take a loan, even from them. If we can't afford out of pocket (and covered by medical insurance), then we'll be going the free route.

In the past 5 years, something that's happened is that I have finished my university schooling, and had also established myself as an editor. I was earning a bit. Not much, but with what I made, coupled with what insurance was ready to cover, we could've made it.
So here's me taking on as many jobs as I can between January and March. Because I will need the money, you know. My head's not in the game, and certainly not of writing. I do manage a translation of an older work, but translating is a different process - your brain almost on cruise-control when you're bilingual. For the life of me, I couldn't put a new word down on the page. So no new writing... All projects at a standstill.

Late March comes, and it's time for the appointment. All the results, etc... I'm on tenterhooks. I want everything cleared out so I can go and schedule my surgery for April ASAP!
Lo and behold, the doctor isn't even here! Meet his resident...who has no clue about the need for surgery and all that! I am so NOT going out of that room without a firm idea what's going on, so I stand tall and ask to speak to another attending oncologist. Never mind that they don't know my case from Eve's - I was not gonna be kicked like a football on the pitch and be sent to another appointment in another 3 months' time! My sanity would not be able to take it! Come on, I need to know if I have better chances of dying from cancer in the coming years or not, or if it's already too late (side note - nobody knows when and how death will come. I might not even get to finish this blog post, who knows, except God? Point being - I needed to find out if cancer was back in my life again...)

And on I go with the other attending...who takes one long look at the thick file I have accumulated there in the past 11 years... and would you believe - he tells me he wouldn't push for the surgery! Not that there isn't a need, but it would be rather pointless in the big scheme of things... Best thing to do, according to him, is to monitor my ovarian cancer markers just like we've been monitoring my breast cancer markers all this time. Blood test for the ovarian markers would show if there is elevated activity already, and if not, will be used as a baseline for future tests. According to him, blood tests every 6 months should be the only thing I need to bother with (oh, and yeah, remember the hormone regimen? The guideline now is to take it for 10 years, and not just 5. So here I am saddled with another 5 years of hormonal therapy. Well, won't turn me into more of a hag, so let's stay put there...)

Still get kicked to another appointment for these new blood results...6 weeks. Aka, early May.

I'm ecstatic at this point. I mean, no surgery, and I might not be dying from cancer, after all. The fear is always there - will the cancer bogeyman get you? Because you have no clue how or why it came for you in the first place. Is it lifestyle? You know that if you smoke, you have higher risk of getting lung cancer, but every other cancer? There seems to be no cause! So how do you prevent a recurrence? How do you live your life so cancer has the least chance of striking you? Yes, you might be genetically predisposed...but why does it activate in you, suddenly, out of the blue, and not someone else? This is what cancer survivors live with every day. It's an eternal Damocles' sword over your head, dangling, waiting, ready to strike... I remember once reading a book about Obsessive-Compulsive Disorder, and the person who wrote that memoir said something along the lines that OCD is living with a permanent pall of doom over you, like expecting the sky might fall on you at any moment, that the air around you will crush you at any instant...and OCD is actually a way to manage this kind of anxiety, to mitigate it.
Once you've been hit by cancer, this is what your life is then reduced to. This similar anxiety...but cancer survivors don't really have ways to mitigate it. We can't arrange or rearrange anything in our lives so we can 'control' what happens next, if the cancer will get us. It's a bogeyman, always there behind your shoulder, ready to strike...

Still, you make do... You've been granted a second chance, when others haven't been so lucky, every second you get to live. Let's face it - a diagnosis of cancer means you have brushed with death, at least with the inevitability of it... And this is the fear you live with all the time. Under some circumstances, it can take over your it did mine in the first 4 months of 2016. I only started breathing again last week, on that appointment when we got the cancer marker results back. Praise be to God, the numbers are 'normal', so there's that.

But in the meantime, I had a life on hold. A career in limbo. A shadow of me living like a zombie, going through the motions. Yes, I do put on a brave face - you wouldn't know I experience this anxiety if you see me everyday (which you do, if you're with me on Facebook). And FYI, I need to point something out here - battling cancer is not a 'brave' thing to do. I don't mean this in the sense that it's got no relevance...but once you've been diagnosed, what else is there left for you but to fight? Fighting is half the battle won against cancer...and we have no choice! It's not a choice to fight it - you just do it! So that's what I mean by the bravery of fighting cancer. You just do it...

So now, I am trying to step out of that darkness. It's like I've been numb ever since that December 26 morning when I emerged from that consultation room. I'm still finding my bearings...

I know it's asking much, but here I am asking for you to please bear with me. I don't wish to let you down, and I will be doing everything in my capacity to deliver to you those stories I have promised. The schedule might look a bit erratic, seem totally unpredictable, but please remember that I am there as an author as much for you as for myself, and yes, in the past 4 months, I have also let myself down. Because writing is my blood, my heart's sustenance... You know, I actually started writing because of my cancer diagnosis. I knew then that 'one day' might not come for me, so 'one day, I'll be a writer' needed to happen, and it did. I wrote my first book mainly on the eves of my chemotherapy days, because I couldn't sleep from the anxiety, knowing I would be so sick for the next 72 hours, hoping that the drugs would be doing what they needed to do - kill the cancer.

So this is another apology from me, especially to all those Eternelles fans out there waiting for Book3.

From Mauritius with love,



Dana Delamar said...

Hugs, Zee! I'm so sorry you're going through all this. I admire you so much for just putting one foot in front of the other. Take care of yourself first.

Anna_esq said...

<3 HUGS <3 Hang in there Zee. Cancer sucks :-(

Unknown said...

LOVE YOU. -- Abby xoxoxo

Kathy Bosman said...

Oh my goodness. How stressful it's been for you. I had a very mild version of that stress when I had lumps in my breast twice - the first time where I needed a biopsy and my hubby was living on half a salary and my dad had to help out and the second time when they operated to remove several lumps. I can't imagine how it must have felt for you. I'm so glad you've come out of a very difficult first few months of the year! May the writing bug hit you and enjoy every moment. And thank you so much for helping me out with all my books even when you were battling these things. I didn't know half of it. And yes, you are brave. Don't tell yourself otherwise!

Zee Monodee said...

Thank you, my lovely ladies! Yep, cancer #FuckCancer, right? :)
I am so blessed to have people like you in my life... <3 <3 <3

Mary Harris said...

Getting everything knocked out of you, twice, is more than any human should bear. We live on the edge. Every day is a blessing. While being a curse at the same time. It takes more energy to fight those negative thoughts and feelings than I ever thought possible. You are a Warrior! Keep fighting! There is no other choice. <3

Nana Prah said...

All I can say is wow. And Yay for no surgery. And another Wow. You are one strong woman. May your favorite lipsticks never run out as you life the fullness of life.

Carly Fall said...

Oh, Zee.

I'm sure your readers completely understand.

Big hugs, honey!

Zee Monodee said...

Hugs Mary, Nana, & Carly! <3 you, ladies!!

Chicki Brown said...

I am so glad and thankful that you're still alive and kickin'. Even though we don't talk as much as we used to, I love you more now than I did when we first started working together in our critique group.

You're a great mother and friend to all who know you, and I wish you God's blessing on everything you do, because you have a wonderful future ahead.

Zee Monodee said...

Awww, Chicki, those lovely words of yours made me cry... <3 *hugs*