I haven’t come very far

(October 23: I wrote this on October 6 but didn’t publish it for some reason. Rather than rewriting it to change time frames and then publishing it on this day, I’ve decided to publish it on the day I’d intended to publish it.)

Each year since her first breast cancer diagnosis over eight years ago, my mother took part in the Run for the Cure. She was proud to be a survivor and loved to get her pink survivor’s t-shirt at the start of each run.

I decided this year to volunteer for the local Run for the Cure, in her memory. It was to be a way to be a part of something that meant a lot to her. My father and my brother and his family were taking part in the Halifax one, just as they always have.

The volunteer meeting was seven weeks to the day after my mother’s death. (Yes, I’m still counting. Yesterday was two months.) They played an inspirational video showcasing personal stories (happy and sad), and it was all too much for me. I sat there in the semi-darkness of the high school library with tears running down my cheeks until the video presentation was over. I thought at one point I was going to have to leave because I could feel hysterical sobs lurking just below the surface. But I stuck around. (The Universe decided to treat me after that to 25 minutes sitting in the rain waiting for a bus whose driver neglected to mention when we’d reached Lees. So my 20 minute trip home turned into a very cold and wet 2 hours. But I digress…)

I’ve been overly emotional ever since. If I’m not actually crying, the tears are nearby. I ended up backing out of volunteering in part because I just didn’t think I could bear to be around people in this state. Some of the feelings I’m having surprise me, though I suppose that grief is an intensely individual thing. The word “cancer” invariably triggers the barely-restrained tears. It doesn’t matter what kind or in what context. And I find I’m a little bit resentful of the publicity surrounding breast cancer. I know, it’s irrational and unkind, but it is what it is. My mother didn’t die of breast cancer, she survived it. The ovarian cancer that killed her doesn’t get nearly the attention that breast cancer does, and that’s what I resent.

The Ovarian Cancer Canada Walk of Hope, for example, brought in over $2.3 million this year. The Canadian Breast Cancer Foundation Run for the Cure, on the other hand, brought in $33 million. Both runs/walks occur within a month of each other, the Walk for Hope in September and the Run for the Cure in October, but you hear very little about the Walk for Hope. Perhaps that can be put down to the guerrilla marketing techniques employed by the CBCF and other breast cancer awareness organizations, keeping pink and the concept of breast cancer high in the public’s thoughts. How many people who don’t have or know someone who has know that ovarian cancer awareness is teal? I guarantee you it’s a lot fewer than know that pink is for breast cancer awareness.

Perhaps that’s a failing of the PR/marketing side of Ovarian Cancer Canada.

Perhaps it’s just natural that people focus more on a cancer with steadily improving odds of survival than a cancer that you don’t normally know you have until it’s too late to really do anything but die badly, though perhaps the steadily improving odds of breast cancer can be put down to the larger amount of funding they bring in for research.

Or perhaps the fact that breast cancer is much more common than ovarian cancer keeps it in the forefront, though the mortality rate is much lower for breast cancer than for ovarian cancer. (Three times as many women die from breast cancer each year than from ovarian cancer, but breast cancer is also ten times more common than ovarian cancer, making the survival rate for breast cancer a fair bit higher than for ovarian cancer.)

I know it sounds like I’m arguing for the support of one cancer over another, but I’m not. I’m arguing for the support of both highly-related cancers. The next time you’re thinking about making a donation to support breast cancer research, consider making one to support ovarian cancer research as well.

Advertisement

Fighting off the scary, scary, scaries

(I had a quirky post started on the subject of my mother and a very funny conversation we had a week ago Tuesday after she and my father had spent 12 hours in the emergency room — the ER wasn’t funny, nor was the reason for the visit, but my mother is pretty funny when she’s feeling bad. Not crying is really my only job right now — being strong and upbeat so that they don’t know how sad and scared I really am — and the black humour we share helps. But it’s hard, so very hard today.)

In an attempt to treat the cancer in her body, my mother will be undergoing three rounds of chemotherapy, followed by surgery, and then three more rounds of chemo. I don’t know what specific type of chemo she gets; I just know that she gets it for something like six hours at a time, and that it is particularly toxic. In the time since she had her first round three weeks ago, she has lost all of her hair and has taken to wearing biker hats instead of scarves or wigs. (She picked up her first wig, a lovely shade of dark brown that she has never in her life ever had, at the Cancer Centre this past Tuesday.) We use the “kidney stone scale” to judge how bad she’s feeling — if she feels less sick than when she’s passing a lot of kidney stones, it’s OK. Her “OK” would flatten me, though. She’s a far stronger person than I am.

This past Wednesday, she went in for her second round of chemo. Within minutes, she had a severe anaphylactic reaction that, among other things, caused her airway to close. They gave her epinephrine, antihistamines, oxygen, and I don’t know what else, and when she was able to breathe again, started the chemo back up. Subsequently, the line came out of her arm, spilling the chemical cocktail all over her and everything else. But they all soldiered on, finishing up the round.

Late Wednesday night, she sat down on the couch and couldn’t get up again because her left leg had a palsy. My Dad carried her back to bed and the next morning, after she slipped onto the bathroom floor while trying to get dressed and Dad couldn’t pick her up, they called 911. The EMTs took them to a different hospital than usual. After seeing that the x-rays of Mom’s knee showed nothing wrong, the doctor told them it was probably just an side effect of the toxic amounts of chemo she’d just had and sent them home.

By this morning (Friday morning — it’s late night Friday/early Saturday as I write this), she was starting to have trouble with her left hand so my oldest brother and my Dad trundled her off to their usual emergency room. Where they learned that she’d actually had a stroke yesterday. A small one, but a stroke nonetheless. (Wouldn’t it have been nice if, oh, I dunno, maybe the ER doctor from yesterday had have considered “stroke”? Nothing like waiting an extra 24 hours untreated.) She’s going to have to stay in the hospital for at least a week and undergo physical therapy. I know little beyond that.

I’ve been talking to my parents every evening for the last eleven days…

I’m a little afraid for tomorrow’s call.

“C” is for mystery

The various doctors and pathologists involved in my mother’s diagnosis and treatment can’t seem to agree amongst themselves. As more information slowly trickles in, I can finally understand why they’ve been confused.

This bout of cancer was initially discovered by Mom’s urologist while reading a CAT scan of her abdomen (related to her chronic kidney stone problems). He proclaimed that they were not going to worry about her kidney stones, that her cancer was back, and that he was going to refer her to her oncologist for more information.

The oncologist and cancer centre doctors didn’t (and still don’t) know exactly what kind of cancer they were looking at, though there were murmurings of it perhaps being ovarian, or maybe something from her last breast cancer. The first biopsy is “inconclusive”. A little judicious Googling showed that ovarian cancer does match many of the physical symptoms my mother had been experiencing. But still no one could confirm anything and we couldn’t quite figure out how an upper abdominal biopsy fit in with ovarian cancer. A second, larger biopsy ultimately proved that, yes, there is indeed cancer but not what kind (though the doctor doing the biopsy helpful — and very casually — suggested that it was probably colon cancer, which is what killed my grandmother when my mother was ten years old).

(Sidebar: In the weeks leading up to the results of the second biopsy, my mother was extremely ill. In light of the cancer diagnosis, this had her wondering if perhaps things had progressed farther than anyone realized and that she wouldn’t make it to Christmas. She was in agony and couldn’t keep anything down. She also started experiencing chest pains, the kind of dry cough that makes you throw up, and shortness of breath — much like a pulmonary embolism — and I asked her to please go the ER. She decided to wait until her next doctor visit. Her oncologist, when they met to discuss the second biopsy results, finally convinced her to go to the ER because they couldn’t start any treatment until my mother was feeling better. At the hospital, they rehydrated her and gave her one of those marvelous Gravol shots plus some good old morphine. She sounded positively perky for the first time in weeks when she called me that night. The next day, with the help of the IV fluids they gave her at the hospital, she passed a total of 18 kidney stones, including one that was larger than a raisin. So much for not worrying about them.)

Today, Mom and Dad finally got word about how this will be treated, though I think the doctors and pathologists are still fighting it out over the complete diagnosis. Dad said that for the first time the word “omentum” was mentioned in regard to the cancer. I’d never heard of it before but now that I have, I think I have a better understanding of why the doctors couldn’t make up their minds.

The omentum is a layer of fatty tissue in the abdominal cavity that is attached to the stomach and lies over the intestines. If you find cancer cells there, they could have come from so many neighbouring organs and tissues. Without practically ripping open the abdomen, I’d expect it would be difficult to be 100% sure of the origin so they have to make educated guesses, and one doctor’s educated guess is another doctor’s hooey. One says “ovarian cancer”, another says “colon cancer”, and another says “leftover from the breast cancer”. (I’m inclined to think that it’s probably ovarian cancer, for a number of reasons, including the symptoms that my mother has been suffering over the last year or so and the fact that ovarian and breast cancer are linked. She gets regular colonoscopies (the doctors have been quite diligent about searching for colon cancer in light of the family history) but hasn’t had pelvic exams with the same regularity. (She had a hysterectomy, though not an oophorectomy, when I was about 15 years old.))

The two bouts of breast cancer my mother survived didn’t scare me. Breast cancer tends to have a higher survival rate than many other cancers simply because we are so hyper aware of it that it gets caught at an earlier stage than many of the others. Ovarian cancer, on the other hand, frequently goes unnoticed and undiagnosed for so long because its symptoms are common to a large number of other ailments. Thus, even though it is highly treatable if caught early, it has a high mortality rate. (It is apparently the fourth most common cause of death in women in the United States, though I haven’t yet found the source of that particular statistic.) If it is indeed ovarian cancer, then the fact that it has spread to the omentum would mean that it is at least stage III, which has a 20% 5-year survival rate. Scary stuff.

Still, we don’t have the whole picture yet so there’s no point getting scared now. (Well, there’s no point getting scared regardless, but you know what I mean.) She’s waiting to find out when she’ll have to go in for chemo. After the initial rounds of chemo (however many that will be), then they’ll decide what else to do.

The old waiting game ends…

and a new one begins.

Last night, we learned that my mother does indeed have cancer again. This time, it’s ovarian cancer, but that’s really as much as we know. We don’t yet know the type or the severity. But we do know that she will have to have a couple of rounds of chemo before they operate to remove her ovaries and any abdominal lining they think they need to once they get in there. Then she’ll probably have to have more chemo. She’ll find out more in the coming days.

It really hasn’t sunk in — I was more happy last night to learn that she’d finally gone to the emergency room for her kidney-stone-induced nausea and dehydration on the way home from the oncologoist — but it scares me that she’s talking in terms of just wanting to make it to one last Christmas or to see her first great grandchild born in June. She said that kind of thing the last two times, but it still worries me that she thinks less “I’m going to survive” and more “Hope I live just to xx goal”. Don’t get me wrong. Goals are good. I just hope she doesn’t think she’s done fighting once those goals have passed.

 

[Added much later: Ultimately, my mother did only make it to her goal to see her first great grandchild born. Once the due date passed in late June 2010, she started going sharply downhill, and she only lasted about a month after the baby was born. Funny, my attitude about the whole thing changed radically between when I’d originally written this post and when she finally died. Once she had her stroke and the chemo stopped, there was no “survive”. There was only a clock counting down.]