Living with dying

"Somebody should tell us, right at the start of our lives, that we are dying. Then we might live life to the limit, every minute of every day."
 - Pope Paul VI

When I was at Wellspring a couple of weeks ago, I glanced through the pamphlets on ovarian cancer. There were the usual booklets on symptoms, treatments, side effects, support for husbands and how to talk about diagnosis with children. All great and necessary support material for women and their families. But I have to admit, I found the one entitled Living with Dying surprisingy jarring.

I guess I'd never consciously considered what I'm doing as living with dying. But I guess I am. The statistics and the realities of ovarian cancer, especially when diagnosed at stage IIIC, like I was, are bleak. According to the Public Health Canada website:

• Ovarian cancer is the fifth most diagnosed (accounting for four per cent of all new cancers)
• It's the fifth leading cause of cancer deaths (accounting for almost five per cent) among Canadian women
• Among gynaecologic cancers, it is the most lethal, largely due to the fact that it is often not diagnosed until late stage when symptoms develop due to invasion of other pelvic organs or from metastases.
• Symptoms initially tend to be vague and as the disease progresses may include abdominal distention or pain, alterations in bowel or bladder habits, and gynaecologic complaints such as pain on intercourse.

The latest statistics I find report approximately 60 per cent of women diagnosed at the later stages (that's me) die within four to five years. Yikes! I've been living the disease for almost three years now.

As much as I tell myself I'm not a statistic and I'm (relatively) young, those figures weigh on my mind - and on the minds of my family. Especially since I have a hereditary form of the disease with the BRCA-1 gene mutation, I was diagnosed when I was only 42 years old and I'm currently battling my second reoccurence of the disease. Those are all negatives in the belief-I-can-beat-this mental mind set.

I also constantly complain ovarian cancer doesn't have many famous and vocal spokespeople. Even actress Kathy Bates, one of the most well-known survivors, mentioned at the end of this video how she was afraid to come out about her experience with the disease. I also feel sad that many people who could have been great advocates ended up dying of the disease. It doesn't have a great track record.

Although I've (almost) sadly become used to my new normal of upset stomachs, inability to eat, vomiting, multiple medications, bowel issues, bloating and ascities, these are not normal healthy occurences in life. They are major red flags of a serious medical illness. That's to say nothing about the fact I subject my body to toxic chemicals two out of every three weeks in an attempt to beat back those tumours and wrestle control of my body.

I've been feeling sicker and sicker over the past six months, which unfortunately forces my mind to wonder if I've started traveling down the road to the end. However, I guess it's still only hovering in the background if I was shocked to read a pamphlet entitle, Living with Dying. Yet, the reality is, since the moment I was diagnosed with this disease in April 2009, I will most likely end up passing away from it.

If I don't consider myself living with dying, am I in denial? If so, why? Do I need a doctor to say there's nothing else he can do? That the disease has spread too far? That we've exhausted all the treatment options? Will that be when I feel like I'm truly traversing the road to dying?

But the truth is, I could also suffer a complication, like one I had in September, that could kill me instantly. With all the crap in my abdomen, any day could be my last day. But living with those thoughts is scary and depressing; even if it could be reality. But then again, perhaps I should live like each day as it could be my last because then I'll concentrate on the people and things important in my life.

Yes, that's ideal, but it's also a lot of pressure. It's creates a lot of stress to think this day could be your last and you have to make the most of it (or you're a failing). Some days are just normal and mundane, and that should be okay. I guess the goal would be to identify or do something special in each day, just in case. To remind those who are special you love them and not to put off wonderful things you could do today.

In the back of my mind, I'm sure I've been continuously wrestingly with the whole living with dying concept. I've planned my funeral, I've spoken to Michael about my wishes, I've mentally gone to that deep, dark place. But I didn't name it. I didn't call it living with dying.

During a serious talk the other day, Michael surprised me by telling me he feels like he's watching me die a little bit every day. I didn't know what to say. I understand where he's coming from, but it make me sad. It makes me feel like we're not celebrating life because we're anticipating death. Yet, it's almost inevitable to have these thoughts. It's difficult to live in a place where you want to enjoy and celebrate because you're alive, yet know death is skulking in the corners, trying to make life difficult.

The whole living with dying monniker almost makes me feel I'm not being hopeful. It makes me feel that regardless of the treatment I take or the clinical trials I participate in, ovarian cancer is going to get me. Yes, as I said before, I do eventually feel it will be the cause of my demise, and hope is a lot more difficult to sustain the third time around, yet, I'm not giving up.

The bottom line is, I'm not ready to die. I'm hoping for many, many more years before I have to seriously consider my death.

I know God has a better place for me, but I'm quite content to remain in the imperfection of life on this Earth. I'm not prepared to leave all this life has given me - my soulmate, wonderful kids, generous family and wonderful friends. I look forward to exploring unknown places and achieving new accomplishments.

I'm sure I'll continue to struggle with and contemplate this concept. Eventually I may even come to terms with it, but right now it still generates a lot of conflicting thoughts and emotions. In the end, I guess we're all living with dying, but it's those who face devastating illness who tend to contemplate it more.

To almost die is to know that one day you will, and to never feel the same way about anything.
- Patricia Cornwell, The Body Farm

Tina