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