THE UNCERTAINTY OF LIFE – Living with Ovarian Cancer

In 2009, I was asked to be the Speaker at the Grand Lake Relay for Life Survivor dinner. I was honoured to accept the invitation. This is my cancer story. I am finally ready to share it with you.

THE UNCERTAINTY OF LIFE – Living with Ovarian Cancer

I am facing mortality. Well, not quite, or at least I haven’t been given my walking papers yet. But every so often mortality peeks around the corner, just checking in to make sure I remember that each day is precious and reminding me that I won’t be around here forever.

OK, no one likes to talk about cancer. But there are very few people who are unable to use the word “cancer” in the same sentence when talking about themselves, a friend, or a loved one.

So, just to soften this conversation up a bit, I’d like to give mortality a name. I’ll call him “Mo”; that sounds a little less intimidating, don’t you think? I personally compare Mo to that distant family member that just pops in for a visit every so often to let you know that he’s still around; that one relative that you really would prefer not to associate with, but hey … Mom always taught you to be nice to your relatives no matter what, right? Well, Mo has been to visit me three times over the past seven years and he’s really wearing out his welcome.

I almost missed Mo’s first visit. Oh, he knocked on the door, but it took me awhile to answer it. He didn’t knock very loud and I didn’t recognize the sound of his tapping. Nor did the group of doctors and specialists I was hanging out with at the time. But once we realized where the sound was actually coming from, there he was. And being his presumptuous self, Mo had brought along a friend, one of those low-life characters that you really don’t want coming in through your front door and getting comfortable in your favourite chair. But I guess Mo thought it was time I met his friend, OC, and her offspring GCT.

Perhaps you’re already familiar with some of OC’s relatives – her lineage runs deep. OC is a descendant of the Cancer family, on the Ovarian side - the group of relatives that usually stays underground plotting and waiting, ready to jump up and yell, “Surprise!” when you least expect it; that fear-mongering, unrelenting group that is difficult to get rid of once they know where you live. And if you don’t know the Ovarian Cancer family personally, I’m sure you know someone who has tales to tell about this group.

For my part, I have to hand it to Mo. He knows that I’ve always liked to stand out in the crowd, even though I would never openly admit it. So just to help me keep up this façade, Mo decided that my visit from OC would be a little different – I would get a chance to really bond with her offspring - a rare sort – Granulosa Cell Tumour - nicknamed GCT. GCT is supposedly friendlier than other members of this clan; a relative that purportedly comes with a much better guarantee policy for a long and fruitful life, providing, of course, that GCT doesn’t get too attached.

Oh, and for good measure (Mo really knows how to rub it in), doctors really don’t know a whole lot about GCT because, it appears, this particular family cluster isn’t big enough yet to get as much attention …… or perhaps this group just isn’t as ‘in your face’ as the other 93% of the family is.

At this point in time, surgery is the standard treatment for GCT. No success has been proven with follow up treatment such as chemo or radiation. So there isn’t even a plausible option at this point other than surgery. So, thus far at least, I have not been exposed to the dreaded effects of either treatment. I personally see that as a good thing - at least during this stage of the game - which might surprise some people; but that’s something my Oncologist and I will, hopefully, never have to discuss.

When I was first diagnosed as having GCT in 2002, I had one malignant tumour the size of a small watermelon plus a benign grapefruit size Dermoid Cyst which I lovingly nicknamed Harry. These were removed from my abdomen along with my ovaries, uterus, cervix … well, you get the point. But the good news was that not only was the deadly C removed from my body, no more monthly cycles for me!! Mo also knew how I felt about that. Thanks for that one, Mo!

My tumour was packed up and shipped off to a lab in Toronto and was staged as 1C. I’m sure that being familiar with cancer staging, you all know that this is good. The cancer was in the early stages and still contained – it hadn’t spread to other organs.

I was informed by my gynecologist that there was a very good chance that it would not return and also given the upper hand on the odds – 95% in my favour. But return it did – in 2007. We’ll probably never be certain why GCT came back for a visit, but this time there were four tumours. Perhaps it was because during my first surgery the tumour ruptured and possibly “seeded” in the abdominal cavity. Perhaps the tumours had already started sprouting but were just too tiny to be noticed. Perhaps … perhaps … perhaps - A waste of time pondering that one; they were back - period.

But Mo had a battle on his hands. I refused to give in to the “poor me” syndrome. I referred to my circumstances, and still do, as a speed bump in the highway of life; very similar to a pregnancy – once it’s in there, it has to come out. These four guys had to go!

So once again I was faced with the probability of “going under” and not “coming back up.” I’m sure I’m not alone with that fear and that anyone who has undergone surgery can relate to this apprehension. Should I say my good-byes now just in case? Should I write little notes to friends and family telling them how much I love them? Should I put someone’s name on the underside of all of my favourite possessions so each item gets passed on to the person of my choosing, saving my husband the stress and hassle of divvying up the things that he will never use – my craft supplies, my guitar, my treadmill? Oh wait a minute; I don’t use any of those things either!!

Well, that was two years ago. I survived that surgery, albeit with a little excitement when the surgeons had trouble turning off the tap on one of my blood vessels. I was topped up with two litres of blood to replace what I lost and, after several more hours than initially estimated, I was back in my room and once again on the road to recovery.

I thought I would be out of the woods, so to speak, for at least another four or five years. But Mo had other plans. About a week before Christmas 2007, less than a year after my previous surgery, I had my first indication that something was amiss; a sharp pain in my lower left abdomen followed by a discomfort that lasted for four or five days. I compare this discomfort to how I might feel if I went to the gym and did too many sit-ups in one session.

There was nothing else to indicate a problem; just this pain in my abdomen that was gone, without a trace, within a week. I was actually feeling better than I had in years. I tried to ignore it, hoping beyond hope that I had pulled something while I was tossing about with my grandchildren the previous weekend. But, deep down, I knew that Mo was once again lurking in the shadows, playing peek-a-boo with me, tormenting me.

Mo gave me a chance; he knew that I wouldn’t ignore the clues, that I would eventually give in and get it checked out. But just to make sure I got the hint, Mo started throwing in a few other symptoms that were very familiar to me – headaches, stomach upset, and a frequent requirement for afternoon naps. So, less than two months after the initial pain in my abdomen, I followed my hunches and consulted with my gynecologist. A CT Scan once again confirmed what I already knew. GCT was back.

OK, so if you don’t know me personally, I always try and see the silver lining in any situation, even this one. My husband is amazed with my positivism. My friends ponder my sanity. But I managed to find it - the glimmer of hope that I was seeking. This time there was only one tumour. Perhaps, I thought, it was just a “left over” from the previous occurrence, hidden and gone unnoticed or too tiny to be discovered the previous year.

Needless to say, Mo once again had me in his grips – sitting on the edge, trying to prepare myself for what I was going to hear when I went to visit my oncologist in. Mo’s a smart one. He knows that I hate – no, thoroughly despise - not knowing what is going to happen; especially having to wait any length of time to find out. And, between you and me, it is getting a bit more difficult to remain positive, to not dwell on Mo and what’s in store.

But I’ll tell you my secret for pulling myself back up. When I start to feel sorry for myself I just look around at the world, at this country, at the small Village that I live in. And I realize that things could be a whole lot worse. I’ve had more than 50 years of being loved, spoiled, and admired - at least I think those looks were admiration – and that’s a whole lot more than some people get in a lifetime of 70, 80, even 100 years.

Appointment day 2008 arrived - beautiful, sunny and warm - and off to Halifax we went. It was a great day for a drive and I barely thought of why we were making this journey and just tried to focus on the beauty of the day. That was the best thing I could have done. Had I known what the news would be, the trip would have been much less enjoyable.

The consultation with my Oncologist was disappointing. He explained that, after taking a thorough look at the CT Scan, there appeared to be one obvious tumour and several lesions that could be tumours as well. That wasn’t exactly the news I wanted to hear. I managed to keep my strong façade in play and asked all of the relevant questions that I felt needed answers – Could the larger tumour have been missed last January? (Possibly, but it would be difficult to confirm); Should I be having regular blood work to check my Inhibin levels so we would know sooner when the cancer has returned? (In my case, probably not necessary since I am so in-tune with my symptoms); Do we really have to discuss adjuvant treatments like chemo now? (No, we’ll know more after the surgery and I would have to gain my strength back anyway before treatments could actually begin); How soon can you book me into a suite at the Victoria General? (Probably within three (3) weeks).

The drive home that afternoon was the longest journey I’ve had to make in a long, long time. The wind had been knocked from my sails, so to speak, and for the next few days I let Mo have his way with me, feeding my mind with negative thoughts. But as each day passed my optimism returned and, even though I was exceedingly nervous about the actual surgery and what would be discovered once they were inside, I reminded myself that I was a survivor and that I would deal with whatever hurdles I had to overcome.

Well over a year has passed since my Oncologist and I met in his office to discuss what my options were. I recovered quickly from the surgery and am pleased to say that there were absolutely no complications - there is always the chance that I may come out of surgery with a temporary or permanent colostomy should the tumour be attached to the bowel. Although I know I could deal with this if it came to be, it is always the first question I ask when they bring me out of my deep sleep. It’s amazing what your mind retains.

There was no blood transfusion required last time either. The surgery, my Oncologist tells me, went much better than he expected. I’m a bit apprehensive to ask him what he expected!! Perhaps that’s a question that I will leave unasked. He did, however, advise that the additional spots on the CT scan were not tumours but probably just scar tissue from previous surgeries. I got to do the happy dance after all!!

I remain optimistic. I believe in prayer (both giving and receiving); I believe in miracles; and I’m confident that the old saying “Three times a charm” might actually prove true for me this time.

Whether any of us like to admit it or not, we all have that little fella, Mo, following us around on a daily basis. None of us know when Mo will pay his first visit or which of his friends he’ll bring along. There is no expiry date printed anywhere on our bodies to let us know when our “best before” time runs out or when we will no longer be a living part of this planet; breathing the air, feeling the earth beneath our feet, or hearing the laughter of our friends and family.

But you can be sure that Mo is there, checking in on us every so often. Don’t worry though. He’ll let you know when he’s around by showing up at your gate, albeit sometimes subtly. Just make sure you pay attention to the little knocks on your door. And if he just happens to have one of his friends from the Cancer family with him, learn all you can about that friend’s lineage. It’s a good plan of action to be on familiar terms with your enemies. It makes it easier to know what they might be up to.

Oh, and one more thing. Be forewarned, Mo. You haven’t won this battle. There is a very good chance that I will live to a ripe old age, giving up the ghost because of some other disease, or perhaps even lucky enough to leave this world due to natural causes. But when it comes right down to it, Mo, it’s just a roll of the dice - between you, me and the man upstairs. I like the odds.

Updated June 2009

It's Relay for Life day in my Hometown!

It's hard to believe that it is already that time of the year when Relay for Life gets underway across the country! Today this event is being held in my community and I look forward to seeing a lot of familiar faces from the past four years, and bidding adieu to those who will not be returning. They will forever be in our hearts.

I have been asked by the Relay Committee to read a poem at this year's Luminary Service. This, to me, is quite an honour and I have decided that the occasion warranted an original poem. So, I have taken pen to paper, writing a course of verses to reflect the them of this year's event: Celebrate - Remember - Fight Back.


CELEBRATE … REMEMBER … FIGHT BACK
Written by Brenda L. Despres - Grand Lake Relay for Life - June 2010


This evening we gather as comrades
Who are all here to CELEBRATE life.
The battle we’ve fought makes us stronger
And we smile despite heartache and strife.

We REMEMBER that some go before us
To be there to welcome us home;
Their courage lives on in the memories
That tonight, in this forum, will roam.

We strive for our health and our dignity
And against this disease we’ll prevail;
We’ll FIGHT BACK ‘til the battle is over
For the healthy, the stable, the frail.

So join hands with the person you’re next to
And share memories of those you hold dear;
We are walking tonight to conquer this beast
So our children can live without fear.

United we march into battle
We’ll continue to fight ‘til we win
Until cancer becomes just a memory
And we’ve defeated that demon within.

Looking for the words ....

A couple of weeks ago I was asked to participate in the Relay for Life Luminary Ceremony by reading a couple of poems. The organizers provided me with a list of poems that I could choose from and I was also given the option of writing one of my own, should I so choose. That sounds like a fabulous idea to me, but I need to sit down, dig deep, and find the words to put on paper.

I am sure the motivation will come soon; probably when I least expect it - as it normally does. My task will be to put into words the thoughts and feelings of those who walk the track in silence, remembering those who have passed, those who are fighting, and those who have survived another year to join their comrades in the heart warming and wrenching ceremony.

I pray that I am able to do this assignment justice and honour the lives of those touched by cancer.

Until next time ....
B-Optimistic! 

Am I Hiding My Head in the Sand????

Our joint community Relay for Life event is just around the corner. Some time ago, one of the organizers asked if I would like to become a member of the new team that is being launched this year for “Survivors Only”. I have yet to give her a definitive answer.

Why have I not made arrangements to become a part of this team? I’m not sure. I do qualify. After all, I AM a survivor and I am very proud of that fact. I’m definitely not the type who never speaks of cancer. I’ll talk about this subject to anyone who will listen because I think it’s important to get the word out.

Is it the commitment perhaps? That thought crossed my mind. I do tend to get stuck in my comfort zone and hate to schedule myself too far ahead. One of the cautions of having cancer I guess. You learn that life can be flipped upside down with just a few simple words.

I’m definitely not shy or backward and it’s not because I won’t know anyone; when you live in a small community of less than 3,000 people, you’re bound to see a few familiar faces hanging around.

I have been constantly watching for symptoms, more so over the past few months. Not because there are any. I am doing fine and feel fabulous. No unusual pains other than those caused by housecleaning (which is a shock to my system, for sure!) and no change in appetite or bowel activity. I’m not sleeping a lot during the day and there is no bloating. Nope, I wish I had an excuse sometimes for the extended waistline - just not that excuse!!

Okay, I just had a brain fart as I wrote that last line. I know why I hesitate to participate. I hate t-shirts!! My body has NEVER been a candidate for this type of apparel and I had always dodged them like the plague. Every year I cringe when I slide the bright yellow t-shirt over my head. That’s right …. BRIGHT YELLOW! Go ahead, throw salt in the wound. I can’t get lost in the crowd wearing bright yellow!

Don’t get me wrong, I wear the darned thing proudly. And I should - because I am still here. There will be several yellow t-shirts missing at this year’s event. The wearers' have gone on to a better place.

So, I guess I need to lay aside my vanity issues, make that phone call, and do my part for cancer research ……. And for those who have passed.

Until next time ……
~ BOptimistic ~

Pursuing a Dream!

I am definitely a slacker!! It’s been ages since I’ve posted, but please forgive me because I have been busy doing fun things – painting, writing, cruising in our recently purchased 1991 Jaguar XJS convertible that we got for a song!! Life is good.

This past Saturday, I had the honour of being the guest speaker at our local Relay for Life event. What a rush! I hesitated initially because I tend to forget I have had cancer. Hard to believe eh, but it’s true. It’s not so much that I forget I have had the disease, but I feel so good that it seems like a dream sometimes. I am so fortunate to be able to put it behind me like that. I do, indeed, count my blessings.

My talk was comprised of a piece I had written last year between being diagnosed with recurrent GCT and my actual surgery. I have revamped it several times since then and condensed it slightly for this event so that the room full of survivors would not have to sit for hours!! LOL

Anyhow, all went well. I managed to maintain my composure through much of the talk, with my voice quivering only a few times. I took a step back, inhaled deeply, and got right back on track again though. I am very proud of myself for being able to stand in front of over 100 people and tell my story without becoming a blubbering fool!! LOL

The best part is that I also decided it was time that I follow my dream of writing a book on remaining optimistic in the face of cancer!! Saturday morning, the day of the Relay and my big speaking debut, I woke up thinking that this venue would be the perfect opportunity to speak to survivors and announce the project to people who may be interested in sharing their stories. Success!! I passed out a sign up sheet immediately following my talk and am pleased to report that my initial quest resulted in more than enough interest to begin the project. I am thoroughly looking forward to hearing each and every story first hand!

There are many more hurdles to overcome – finding a publisher being the main one - but I am confident that I will persevere and finally realize this desire to write that I have had nearly all of my life.

So please wish me luck with my new endeavour!

Until next time …….
BOptimistic!!