Friday, June 1, 2018

Clearly, I'm stressed....

I've just spent the last 15 minutes googling why my neck hurts when I bend over in the hopes that I can rule out lymphoma or mets. I can't, but my research also seems to suggest it is probably something else (but might, maybe, possibly be's on all the damn lists...sigh). I should really book a trip to the doctor. I need a refill on Tamoxifen anyway, so this works.

But really, this behaviour is more a sign of my overall state of anxiety/mental health than anything else. I've noticed this - when I'm stressed at work or in life, my fears about cancer recurrence seem to get a lot stronger and have more staying power. I hadn't been having the "what if it's cancer" thoughts all that often anymore about every little ache or pain, but lately they've been bubbling up.

Work is very busy, and stressful, and I feel a lot of pressure to do a good job and not let everyone down. I love being in a job where I feel like I really know what is going on and that I'm making a difference, but the down side is, since I'm the one who knows the stuff and will be responsible for delivering on it, my anxiety is way up. I can't even imagine what I'd be like without my good friend: off-brand effexor.  So thank god for those little pills. #effexorforever? #maybe

I doubt that I will ever be totally over this disease. Physically I hope I am already over it, but mentally I think it's changed my DNA. It sucks, but I'll take it. I have no preference for the alternative. So anyway, I stopped by the blog to write, rather than try to figure out a different way to google "why does my neck hurt when I bend over?" And now, I'm going to try and just walk away from the internet and go bug Paul. He loves it when I do that!

Thursday, September 28, 2017

And so it goes...

I had my 6 year anniversary not too long ago, and the day didn't even occur to me until after it had passed. The only reason I took any note of it at all was that it was a Saturday I had gone into the office, and I was trying to figure out my overtime. I had a "huh, 6 years" moment, and then moved on. And so it goes....never though I would get to a stage of that kind of tranquility about cancer. Thanks effexor (or whatever the hell off brand I'm taking is called)!

I saw my radio-oncologist this week. I asked him about reconstruction and he advised that I wait another year. So I will. Maybe. Unless I get impatient. Paul insists my lop-sided-ness is really only apparent to me, but it is apparent to me. I'd actually like to use the opportunity to have the left shrunk down to match the right, and not have the right one puffed up.

It seems these terrible boobs have a mind of their own and insist on re-growing, despite my attempts to hack them to bits. A reduction and a lumpectomy and they just keep coming back, like a bad inspirational after-school movie! Except, only one does anymore, cause the one that had all that radiation has decided to quit. So I think the imbalance will only continue to grow. I'll keep you posted. But only sporadically, as you can tell these days.

Anyway, that's where I am at now with cancer - at a cosmetic level, rather than a metaphysical, contemplation of my own (potentially abruptly shortened) existence. Which, I'm pretty okay with. And so it goes...

Thursday, September 15, 2016

Five Years!

On September 9th I celebrated my five-year cancerversary. Five years to the day that I had a lumpectomy, and kicked out Ethel. On September 10th, I celebrated.

I threw a party, invited everyone I knew...(Golden Girls reference there, you're welcome). The theme of the night was "Death by Chocolate....not Cancer." I invited everyone to bring their favourite dessert and eat with me until we all felt sick. Or hated ourselves. Or both, I'm not picky.

I though the party theme struck the perfect balance of dark humour and slightly tacky references to death. It was a great night - it felt light, and fun, and loving. Exactly how I would want any party in my honour to feel. I didn't give any speeches (too heavy) or make any grand gestures (too much work). I just got to spend an evening surrounded by people that I know care about me. There were quite a few people that I know care about me that couldn't make it (it is both a blessing and a curse to have my friends and family spread across the globe) but I had a family make a video from the other side of Canada showing how they celebrated. It made my heart happy.

Five years seemed such a far way off back in 2011. I wondered if I would make it to that milestone. I soon realized the odds were in my favour, but still, I did some deep soul searching while waiting for test results. Even after all that I debated celebrating, because I'm not always comfortable asking people to do things for me. Even if those things are coming to a party. But in the end, I decided if you can't celebrate five years in remission, what can you celebrate? It's a pretty big deal. It's a wonderful thing. It certainly deserved a little cake. Or, in my case, enough cake to fill two tables.

I'm a lucky lady.

Wednesday, June 8, 2016

The Tyranny of Time

It is strange to know that I have entered that phase in my life when people I know, my peers, will begin to die and it will become less and less unexpected. The tyranny of time rules every one; we just don't know how much of a clock we each have.

A woman I know passed away this morning. She was diagnosed over a year ago, with cancer that was terminal from the very beginning. She is young. She leaves behind a husband and three children under the age of 10. It is truly awful, in the deepest, purest sense of that word. It is awful and it is ordinary, and it is a thing that will happen to us all. It will happen to many of us far sooner than it should, for her especially.

Death will one day grab us all. I know this to be true. I've had the experience of  wondering in a very real, very literal sense whether I will be alive in three months. In the early days of my diagnosis, when we didn't know stage or grade, I really wondered how much time I had left. And even having lived that, death is still, mostly, an abstract. I can often forget about my eventual demise, and breath deeply of the sweet, musty spring air and be grateful that another year is reborn and I am here to see it. That forgetting is a good thing. What a waste of a life to spend it consumed by death. But on days like today, I spend more time thinking about the end, and less about the act of living.

This business of aging is difficult. It is hard for those who live to see the end of time's passage for others. I wonder if it isn't harder still for those who see their end coming too soon. Those who know they have been cheated of years and time and memories. That is what I'm thinking of tonight. Not just of the children and husband left behind with a void where once a mother and wife was. But also of that mother and wife, who must have grieved the part of her life yet lived, that will remain forever un-lived. Such a terrible thing, the tyranny of time.

Thursday, March 24, 2016

Not a Mutant

I have now had three possible genetic mutations ruled out. I like to say I'm not a mutant, at least not in a way that the medical community has discovered you can be, but I also worry that by saying that I will offend those who do have a BRCA mutation. Or the other one they tested me for, which I can't remember the name of, but it doesn't matter, since I don't have that either.

I've known for quite some time, but (as I've mentioned before) I really am a wonderful procrastinator. So it's taken me awhile to get around to writing a blog post about it. The genetic counsellor that met with me to give me my news was almost apologetic, like "I'm sorry, but we don't know why you got cancer." Not that having BRCA would be better - it wouldn't be. But it would be an answer to "Why?" and "Why at 30?" I mean, beyond "karma." (Aren't I a hoot?)

I've had another check up since then. Just recently actually. I met with yet another oncologist. Although technically I am the patient of Dr. Dent, I have met this woman exactly once in the 2.5 years I've been going to the Ottawa Cancer Centre for follow ups. It would be nice to have an actual ongoing relationship with a doctor that I see and then...see again. But I guess that is not to be.

It is funny, and sometimes a bit unsettling, to see how varied the advice you get is based on the doctor you're seeing. This particular doc was of the opinion that I should consider ending my Tamoxifen therapy now, since I'm having some not-so-pleasant but totally-manageable side effects. His opinion was that the benefit I get from the drug might not be worth the quality of life issues. I've had other doctors mention the new studies that suggest 10 years might be a better length of treatment, which seems to be pretty much the exact opposite advice. What's a gal to do?

I've decided I'll stick it out. I've managed 4+ years, what's 9 more months. And this is the treatment protocol that is widely accepted across many nations, including Canada. It will be interesting to see if my sometimes incredible fatigue is just because I'm a person that is good at sleeping and less good at being awake, or if it really was the drugs. Just 9 months or so, I can tell you.

Tuesday, August 4, 2015

The Inner Dialogue

Still no news on the BRCA testing front. Truthfully, I haven't really thought about it much since that appointment back in May. It's August now, so I expect I will hear something soon, but Canadian health care being what it is, perhaps I should lower my expectations.

I'm coming up on my four year cansiversary. I've been thinking when I finally get to five I might throw a party. This idea causes me stress, but not cancer stress, mostly just party planning stress. Still, it will be quite the milestone. One, early on, I wasn't sure I'd meet.

I don't often think about the early days of my diagnosis, when all we knew was that I had cancer but we didn't know size or stage or any of that. I remember wondering just how much time I had, in a months and years sort of way. Would I see my sister have children? Would I make it through our three year posting in Korea?

These days I'm much less consumed by time, and how much of it I may have left.  I attribute much of that to my new best friend Effexor. But I've also been working on trying not to freak out over every ache and pain. And on trying to be present and grateful for here and now.

I was laying in the grass a few days ago, with both of my dogs a few inches from me, watching whisps of clouds roll past me on a crisp blue sky, and I was so grateful. Gaterful for the day, and the sun, and the air, and my dogs, and my husband, and our families, and my life. I was so grateful for that moment, in that moment. And it was wonderful.

This is a shift. It used to be when I has these sorts of "out of body" experiences, where I became acutely aware of my surroundings, all I could hear was a voice saying "you had cancer, that really happened, bad things happen, this could all just go away." I didn't realize it until now, but that voice has been replaced, at least some of the time. I have a new voice now, that isn't talking about an end. She is telling a story. The story of me, which includes a bit about cancer. But she isn't talking of my impending doom. She whispers about gratitude, and speaks with awe about the beauty of this place. She tells me to be grateful for the day, because it is a gift, cliched as that may be. I'm trying to make more space for that voice to whisper about gratitutde, so she can contine to overpower the voice that whispers about death.    

Saturday, May 30, 2015

BRCA Testing - Part 1

I had my consult a few weeks back with the geneticist. It was super interesting, at least to me. We went over my family tree and she said although there is no real obvious evidence of a BRCA mutation, I also have a very small family with not a lot of ladies, which makes it harder to definitely rule something like that out. She also said that getting breast cancer anytime before 35 is a HUGE RED FLAG in geneticist land. So they've opted to test my blood.

The first stage is looking for the BRCA I or II mutation. If I don't have that, they will ask the Government of Ontario for special permission to have my blood sent to the US, where they will test it for all of the other genetic mutations they know about (but know much less about).

If I am positive for any BRCA mutation, then one of my parents will have to be tested, so we know which line of the family carries the mutation (and who I can hold responsible for this!) and anyone affected on that line will have the choice to be tested. I find it fascinating to know all the stuff we've managed to learn about the human body and the immense amount of stuff we still don't know.

If I am positive, they said I can still keep my boobs. That one is up to me. I think I will likely lop them off if I am, but we'll cross that bridge when we get to it. Removing the boobs means a significant drop in annual testing. If I keep them, it's mammograms every 6 months and yearly breast MRIs. Testing times are stressful, so it would be nice to avoid them. If I am positive, they also strongly recommend going the way of the Jolie and tossing out those pesky ovaries. I can apparently wait until my 40s to do that but I have questions about that, mostly because I'm not so secure in waiting when my breast cancer decided to show up well before anyone is even thinking it's a possibility. Could my ovaries pull that same crap?

I can see how this would be scary if you hadn't already had cancer. The stats for the likelihood of getting breast and/or ovarian cancer if you have these genes are staggering. Perhaps as high as 85% for breast cancer and 60% for ovarian. Scary stuff! Having already had one of these diseases I'm less worried. Though she did explain the mutation, and the mechanism by which it makes your odds of getting cancer higher, and that part was still scary - even for someone who's already been there. It makes it sounds like your genes are just a ticking time bomb. And the thing about genes is, you're sort of stuck with them.

Anywhoosters (that is a part of my vocabulary now, thanks to a co-worker), now I'm back in the waiting game. Apparently results should be in in about 3 months. But even if they come back negative, there is more testing to be done. So I guess this is just the beginning.