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.  

Pooping problems

So almost six months after I had completed radiation, I started having "rectal issues".  Not sure how much detail to get in here because it's downright gross.  But then again I'm starting to wonder if anyone is even reading this damn blog, so what the hell.
It started with blasting diarrhea.  Just happened to be a day after we had gone out for pizza, so at first I thought maybe it was food poisoning, or simply intolerance to whatever junk I had consumed.
But it persisted longer than any food borne cause normally does.  The blasting craps part has largely subsided, probably because I've learned to be cautious about what I eat and drink. Since you probably don't know me, let me just say that I am/was a "foodie".  Love to cook, love to eat.  I'm pretty good at both. Love to entertain, aka feed people.  So sadly, this has put a slight crimp in my style but maybe it will be good for me long term. It's not that I was eating garbage.  It's actually some pretty good stuff I can no longer tolerate.  Salsa, chili, spaghetti sauce, anything tomatoey or spicey. Coffee, red wine, beer.  Sadly. Gradually, I've just learned to adjust what goes in so as to manage what comes out. So the blasters have been replaced by er...let's just call it "urgency".  Regardless of where I go, I am mindful of where the bathrooms are.  All accompanied by rectal bleeding. It just doesn't get any better than this....
The oncologist diagnosed it as "radiation proctitis" and recommended a colonoscopy to insure there were no cancerous polyps. So off to the gastroenterologist.  Quite the experience.  It's like an assembly line of people who have signed up to allow someone shove a probe up their ass.  Wow, what a crock of crap--no pun intended.  The jackass didn't even bother to say much...except "yep, you have some fizzures here...gonna zap them with this argon gas treatment". Oh my God.  Painful, ridiculously painful. For hours and hours.  After starving myself for days getting ready for the damn colonoscopy, I had planned to go out to eat afterward; instead I came home and went to bed.  The cramps were awful for at least 3 days.  I was more pissed than anything.  Have I mentioned I hate doctors?  
That's a cleaned up and abbreviated version of the pooping issues.  It's all I've got for tonight.  If you are still reading this, I promise this will be the last post dealing with crapping and/or rectal bleeding.  With so many other entertainment choices out there, well.....I have to do better to retain an audience.
Suffice to say that if you've had radiation to the pelvis, this is just one more thing to look forward to.

Post radiation issues--hip pain, hot flashes and peeing my pants

So the ambivalent "all clear" was anti-climatic.  Just kind of went back to life as normal before this whole cancer thing interrupted me. Not that I ever stopped......working, going to school events, doing homework, cooking, cleaning, laundry, shopping, parenting.  Cancer treatment was just something else added to the list. The new found free time was quickly eaten up again by more of the above. Slowly over the course of the next few weeks, then months I started noticing changes in how I felt.  It was like the old bod started to betray me. 
First came the hip pain.  Not hugely painful during the day, but it was always there...nagging at me. Only became intolerable at night when I tried to sleep.  My oncologist dismissed it and told me to go get a bone density scan.  Thanks for that...It was disconcerting enough that I finally gave in and found a general practioner. She diagnosed it as "bursitis" which I thought was a load of crap at the time.  Bursitis is basically just inflammation of some sac of fluid around the joint.  She told me to leave it alone and it would go away by itself. It did--eventually.  Never did get the damn bone density scan. Hips are good now.

In the meantime, I started having hot flashes that were extreme enough to make me want to take a cliff.  They came often and intensely.  I started counting them....up to over 70 one day before 10 AM.  I had been warned about this "Radiation Induced Menopause".  Basically the radiation had turned my ovaries into charcoal briquettes.  I always thought that the old ladies whining about hot flashes were wimpy prissies.  Holy cripes, was I wrong. They really suck.  Supposedly being "forced" into menopause makes the conditions even more extreme. I couldn't sleep.  I got really really bitchy (or so I've been told). I broke into cold sweats so many times a day I started bringing a clean cami to work to change into mid-day.
I went back to aforementioned GP who told me to loose some weight, start getting some exercise.  Briefly mentioned the pros (even out the mood swings, eliminate the hot flashes) and cons (migraines, increased risk of breast cancer) of hormone replacement therapy. Then she asked me if I was depressed and suggested a couple of different antidepressants....
I never went back.  Have I mentioned how much I dislike doctors?

So just when I thought that every hot flash was the mother of all other hot flashes, I started having issues with incontinence.  Christ, really?  Haven't I been through enough?  Now I have to start dribbling in my pants like some 95 year old granny?  This made me cry, possibly for the first time during this adventure.  Had I really come out on the other side to live like this? It was frustrating, humiliating, and scary.  The whole reason the treatment course--chemo and radiation--was prescribed (as opposed to surgery) was because of the tumor's proximity to the bladder.  As my oncologist said "you're too young to live the rest of your life collecting your urine in a bag".  Suddenly a bag was sounding pretty good.  I started carrying around a spare pair of undies. Pretty soon I'd have to be making a full wardrobe change at lunch....  I used panty shields, then upgraded to Poise pads.  Thank God the issue gradually faded and then disappeared entirely before I had to upgrade to Depends.

These were the first three, and a Big 3 they were. But stay tuned; it gets better as we move into The Big Bowel Adventures.    

Wait, scan, repeat. Wait, scan, repeat.

So after the months of radiation end, the waiting game begins. In my case, the first wait was for six or eight weeks after radiation...then another PET scan to see if the tumor was gone, or at least shrinking. The first waiting period was the longest; not knowing if all this fun had been productive or if, God forbid, we'd have to start all over again at the beginning.  Do not pass GO, do not collect the $200. I got really lucky in this game, and got a fairly good report the first scan after treatment. They called it "clear, but with inflammation present"; probably a remnant of the brachytherapy. 
After the first time, they went to six months between scans, with PAP smears every 3 months. Eventually the scans will go to annually, but the PAPs remain at every 3 months.  For the rest of my life.  The good Lord is repaying me for all those years I could never seem to find the time to have one...
Anyway, key thing to learn here is that PET scan results typically include an "SUV" value.  Stands for 'standard uptake value' and I think it has to do with the amount of the glucose mixture absorbed in the area of cancerous cells going crazy gobbling up sugar....abnormally active cellular activity.  Mental image of many ants on a hill. SUVs go from 0 to 15, with 15 being the max/highest indication of cancer cell activity.  
So ask for copies of the radiologist reports from your PET scans.  Look for the SUV values.  Compare them to the last scan you had, and say a prayer of thanks when they're going down. 
No one then or even up to now, has ever really come out and said "You're cured.  You're good to go.  Go home, forget this ever happened, and get on with your life."  Nope.  You don't get any assurances; no promises.  Just a lot of open ended statements that trail off into ambiguity.  And an expectation that you will continue to show up for the check up appointments.  Ad nauseum. But hey, still alive and kicking so can't complain.