Things I know now that I wish I'd known then

• Get PAP smears every year.  Do it regardless of how much you hate it, how busy you are, how unimportant it becomes or how unnecessary it seems. Do it even if you've had a hysterectomy. IMHO, the new recommendation to only have one every three years is fueled by the health insurance companies, and they may not have your best interest in mind (gasp). 
• Find out from whatever doc does your PAP smears if you have HPV.  Not sure if I did, but if it was present it would have been nice to know.
• Your health is sacred. If you still have it, appreciate it. 
• Menopause sucks. Early menopause sucks more.  Radiation induced menopause sucks most.
• If only I had known what was in store for me, I would have eaten better, walked more, maybe even worked out occasionally.  Shame on me for not doing more menopause related research until I was living it (they did warn me), and shame on my myriad of doctors for not having time to deal with it.
• Depression and irritability are some of the most common side effects of menopause, but hot flashes get all the press.
• Your health is sacred. If you still have it, appreciate it. Did I say that already?

Sharing your diagnosis....to tell, or not to tell

Having a cancer diagnosis, particularly a vaginal cancer diagnosis, brings with it the awkward position of either having to tell people what's going on or trying to keep it to yourself.  In my case, I wasn't inclined to broadcast to friends and family that I had cancer of the vag....so I told only those I had to.  Like my bosses, and my direct reports--both of whom would obviously notice the sudden departures from work for treatments.  The curse of being a workaholic is that everyone comes to expect that you're always at work, so when you're not, it's somewhat conspicuous.  So in total, probably about 5 or 6 people at work knew I had cancer.  I gotta say I think it would have been easier if it had been breast cancer, or lymphoma, even bladder or colon cancer.  Anything but telling your co-workers (all men) that you have vaginal cancer.  Sharing that information was to me a curse worse than death.  So I snuck out when I could, never called in sick, and in general felt like crap and looked like shit for about 8 weeks. Some people asked what was going on; I dodged the questions and said something vague.
I should clarify--even those at work I had to tell--I never specified WHAT kind of cancer it was.  Just that it was a tumor that they could not operate on due to the proximity to the bladder. Which was true actually.  The V word would have made for a much more uncomfortable conversation -- for them and me.
Of course my husband and daughter knew...they live here.  That said, we didn't really talk about it much.  My teenager went from certainty that I was going to die to barely remembering when my chemo days were.

I told my sister, because she's had close and personal experience dealing with cancer and cancer treatments before.  And because I trusted her and valued her opinion.  She in turn told my other siblings, nieces and nephews. 
I was kind of pissed at first (and still am occasionally) but I realize that life is too short to worry about any self-imposed embarassment sharing this information brought with it.

My sister-in-law knew because she was here when my OB-GYN first called with the news about 9:30 one night...instant clue that something's up. She ended up telling my step daughter many months later, who was hurt and offended that neither me or her dad had told her while I was going through it.

I never did tell my parents, even though others thought that not telling them was horrible of me. I just said...you don't know my mother.

I've always been a pretty private person (insert some psycho babble about a dysfunctional upbringing here) not one of those 'let's get everything out in the open and talk about it to everyone who strolls by' types.

I'm only sharing these examples and covering this topic in a post because I'm all about trying to help someone else who may be trying to figure out how to maneuver through this.  So my sagely advice on this topic:  tell everyone that means something to you.  Even if it's embarassing, and even if you're fairly confident that you'll be fine in the end. If you don't, you'll wish you had, and at some point it becomes just too late to share because then they'll be hurt that you didn't tell them earlier. 

I think perhaps the best approach would have been to just put it out there, ask for no pity, and move on.

Is anybody out there?

I mentioned that recently I've started to explore cancer sites and cancer blogs.  Part of me can't seem to let go of my experience, part of me wants to know more about it....education is prevention, right?
Recurrance is never far from my mind.

I thought I started this blog to help others who may be just beginning the winding path of this experience, but maybe I started it to help myself.  If I document it, I won't forget it, right?  I don't really want to forget it.  I don't want to go back to life as usual.  I should have learned something earth shattering, somthing life changing. Returning to my previously non-descript existence makes it all seem so pointless. I wanted it to change my life.  It really hasn't. I haven't stopped working too many hours.  I haven't become a better parent, a better wife, a better person. I haven't found God. I haven't devoted my free time to a worthy cause.
So I keep searching for answers.  I keep hoping for some sign that someone is reading and getting something out of this blog.  I really would like to know that it's helping someone at some point. But I've had no comments.  Well, actually one really irrelevant comment that I deleted because it contained a link to a salmonella site.  (WTF?)
I have not shared the fact that I have a blog with my family or friends, so I'm hoping to suck in random strangers from search engines and other cancer sites.
Speaking of which, that may be a good topic for a post unto itself....sharing your cancer diagnosis and treatment experience.  Or not.

HPV connection to vaginal cancer

So I've been rummaging around in the multitude of gynecological cancer information on the internet....just been trying to find other vaginal cancer survivors, bloggers, etc. 

I only found one related specifically to cancer that started as vaginal.  If you're looking for someone who is dealing with cancer with an incredibly positive outlook, check out  http://Confessions of a cancer patient. Daily diary of a woman diagnosed with a rare cancer.blogspot.com

Anyway, there is a ton of information out there about the connection between HPV and vaginal (and cervical) cancer.  Interesting that no one mentioned this to me.....none of the many nurses, doctors or radiation specialists.  Not one medical professional asked if I had been diagnosed with it, or suggested that I had gotten to this point because at some time I'd been exposed to or come to live with HPV.  So for the record, no--I've never been told I had it.  I've been married to the same guy for 25 years and neither of us have the time or the energy to be unfaithful.  So if HPV is to blame, it is a stealthy, long lived and nasty bastard.

Hysterectomy history; connection to cancer?

In retrospect, I think I failed to mention a significant detail. This sketchy chronicle should have pointed out that almost exactly one year before my cancer diagnosis, I had both my uterus and my cervix removed.  This after a couple of years of abnormally heavy bleeding.  The plan was to do the surgery laparoscopically--that's how most hysterectomies are done these days.  Basically zapping the uterus up into little pieces through little slits in your abdomen and removing it through your vag. Turns out mine was twisted and gnarled beyond hope of doing it the simple way, so the little slits were abandoned for one big giant one.
It wasn't horrible; had a fairly decent hospital experience except for the fact that I was anemic so needed to have a blood transfusion before I could be dismissed. Not at all a big deal at the time; I healed nicely and went back to work less than 5 days later.
The next six months were heavenly--period free and loving it!  Then I started having some vaginal bleeding again.  What the hell?   That's what led me back to the OB/GYN and eventually to the C word.
Is there a direct connection between my surgery and the development of a cancerous tumor at virtually the exact area that had been sliced and stitched?  I can't say for sure, but I am convinced that if the surgery hadn't happened, the cancer wouldn't have grown there. Maybe in the body's effort to heal itself, it went a little overboard and those crazy busy cells became cancerous in their quest.
It doesn't really matter now--water under the proverbial dam.  What I do know for sure is that if I hadn't had the hysterectomy, I may never had known the tumor was there because the main symptom (bleeding) would have gone unnoticed.