Recurrence

Sorry to drag out the end of that adventure....just realized it's been awhile since I posted the initial uncertainty.  The liver biopsy procedure has come and gone, and not surprisingly it was positive for cancer in the liver.  I got to see the spot on the ultrasound; it looked pretty little and harmless.
The appointment with the oncologist has been changed a couple of times now...she's on vacation for the holidays don't ya know. 
So I plod along in blissful ignorance of what is coming at me; the only shreds of information I got via a poorly connected international phone call from her nurse when I was traveling for work.
Here's what I gleaned:

• they don't usually radiate the liver
• surgery is not an option, but the "why" would need to be addressed by the doc
• radiation to the pelvis is questionnable, since I've already had so much in that area.
• more chemo is probably in my future

Everything I read about vaginal cancer that has metastisized to the liver is pretty grim.  It's somewhat surreal; I feel fine.  How can I be in the shrinking percentages as far as survival goes?  How can this be happening to me? 
I still haven't stopped and taken the time to seriously contemplate my mortality.
Still working towards a huge deadline/project/goal at work, wondering how I'd going to fit chemo into my 12 hour days.
Still working on raising that teenager; wondering how she will grow up to be a successful and happy adult without me around to guide her...
Geez, this cancer stuff sucks.

The other shoe

So PET scans are an annual event now....recently had the 2012 occasion only to hear the following day (shocking, I know...) from my oncologists' office.  Wanted to see me earlier than scheduled to review the report from the radiologist.  I'm thinking "this can't be good", but never called them back.  Didn't have time to reschedule on the day they wanted me to come in.  I guess avoidance isn't going to work; her nurse called me the day after to explain, in a kind and gentle manner, that there were, and I quote..."2 areas lighting up....one at the top of the vagina and another on the liver." 
Next up:  CT guided liver biopsy.  You can't make this stuff up.
All I could think was "Fuck, I don't have time for this...."

Farewell Carol

When I first started down the cancer road, I was consumed with just getting through it--making it to appointments, working, managing the demands of everyday home life; just the usual stuff with the added inconvenience of cancer in the mix.  Looking up medical information on line was overwhelming and exhausting--conflicting information and not enough detail for me.  I gave it up or just didn't have time or energy for it...don't really remember which.

When I came out on the other side of treatments, alive and (fairly) well, I figured out I needed to deal with NOT having cancer.  I thought more about it later than I did during the low points of the experience.  I started this blog around that time--mostly because there was very little information or personal experience on the web specific to the treatment, the emotions, the survival of vaginal cancer patients.  I had a deep desire to put my story out there to help others who were in the same boat-- I wanted to provide real life, down to earth information that someone out there could relate to; wanted to be able to help by providing some insights into what to expect. Digging into this personal side of cancer, specifically vaginal cancer, led me to the blog of another vaginal cancer fighter.  I've been reading her blog ever since.  Carol had neuro endocrine small cell cancer of the vagina which spread to her lungs, liver, lymph nodes and bones.  She also had probably the best sense of humor found in a cancer patient--ever.  I don't know her personally; just know that her blog was a delight to read.  A great outlook on life (and death), a pretty funny family along for the ride, and an ability to see light and beauty in her darkest days. Living life and crossing things off the bucket list to the end.

Rest in peace Carol, and thanks for your words.

http://confessionsofacancerpatient.blogspot.com/

Caution: Gross content ahead

Can't remember how much of this I've shared, but I continue to have some issues with rectal bleeding. So I've become convinced by my intensive medical research (Google) that I now have colorectal cancer.  Or at least that seems to be a seed planted in my brain that has sprouted and is growing like a weed.

I can hear you, meager reading audience o' mine...you're thinking "why in the hell doesn't she go to a real doctor?" And the answer is...I have mentioned this several times to my oncologist at my regular PAP smearing checkups and it never seems to be a cause for alarm; simply gets dismissed as a hangover from radiation.  If that's the case, it might be the longest hangover of my life.

Hoping that the next PET scan can put this recurring nag out of my brain forever.

Blessings, I've had a few

Wow....what a summer.  Lots of time with family and a few short vacations/celebrations of life.
Feeling great, and feeling blessed in so many ways.

Recently had another negative PAP result, so all things vag are looking stable and, dare I say, normal.
If I can clear the next PET scan in November, I think I may finally feel like this whole little detour has wound its way back to the main road.

I've decided it's time (actually well past time) to start paying attention to my body....meaning exercise (UGH) well, getting at least more than zero is a start....and eating better.   Between the hysterectomy, the ovary killing radiation and corresponding menopause, I find myself now with a lot of weight to lose to be comfortable and healthy again.

One journey might be over; another is just beginning. Wish me luck....this may be harder than beating cancer.

Be smart

Cancer awareness doesn't cure the disease, research does.
All the 'awareness' in the world doesn't help anyone already living with cancer.

Cancer in our culture has turned into a profit center for organizations who haven't cured anyone.

Don't be fooled by the hype; be smart in how you help.

Suddenly it's summer

I seem to have missed a season.  Suddenly it's the 4th of July, which normally indicates summer is in full swing. Spring went by in a flash...and now it is HOT in the Midwest.  But loving these days...even the heat and humidity, because I know summer will be gone in a flash as well.

I talked to someone yesterday who is going through chemo and radiation for the first time.  I struggled with whether or not to share my experiences.  In the end I decided not to (he is a coworker, and I would have had far too much explaining to do). Another thing I may live to regret, and another reason to wish I had come clean when I was going through it all.

I'm frustrated with myself for not opening up.  Why is it so much easier with strangers?
I still have a desire to help others, but I may have to branch out from helping those struggling specifically with vaginal cancer; seems our ranks are pretty limited.

Alone among survivors

I recently attended a local American Cancer Society Relay for Life event.  My daughter had joined a team of fellow teenage girls; I thought it was great that they would take this on, so I went to show support (and take pictures of course!) I got to see some of the nurses from my chemo clinic; they had a booth/team there.  I don't think they remembered me, but I stopped to say thanks anyway. Kept thinking it would be nice to have a job that touches people's lives so intimately, profoundly and positively.

I walked around the track, seeing the thousands of lumineria donated in remembrance of friends and loved ones lost to cancer or in support of survivors of this disease that has touched so many.
Listened to personal stories of loss, and of the struggle to make it through treatment over to the other side.  I cried for people I didn't even know...the teenage girl still dealing with the daily pain of missing her dad, the sister of a little girl who has been battling for 3 long years.   An all around moving experience; even the hardest, most cynical hearts would be touched by it.

The last event of the night included a final lap of survivors.  I wanted to be in the group with the purple shirts, celebrating being alive, but instead I was sitting in the bleachers by myself.  As always...on the sidelines afraid of plunging in full force. Started to feel sorry for myself just a little bit.  Why did I have to have vaginal cancer?  A disturbing case with disgusting treatments; something so personal I couldn't share with anyone. I couldn't stand up and talk about surviving. I couldn't even join the massive group of those who had overcome the disease in their own way.  Not for the first time, I wished I had some more socially acceptable type of cancer that one could easily discuss over dinner, or walking around a track with a group of fellow survivors. 

Self pity was short lived.  Hard to feel bad for yourself surrounded by those still fighting, regardless of the type of battle.

A memento I don't have to dust

I have written in the past about wanting to remember what going through a cancer diagnosis and treatment felt like. For some reason I feel obligated to keep it fresh in my memory....mostly because coming out of it alive and well made me so APPRECIATIVE of life.  And of being able to get back to 'normal'.  Thankful for being healthy.  I embraced it even while getting over the harsh impacts of radiation to the pelvis. I was so glad to put it behind me.  Happy to be able to see my daughter grow up, to see my stepkids becoming successful adults and to see their kids grown up, happy to spend time with family and to see things not yet experienced that the world has to offer .  That feeling of being so blessed was almost a narcotic feeling.  Like that warm fuzzy you get from oxycodone.  Who wouldn't want to keep that feeling around, if it were legal and you could still function productively?

Well, I've hit the one year mark a couple months ago and I can feel that warmth starting to seep away.  The routine of every day life is creeping in and taking over.  In a meager effort to ward off the impending (and inevitable?) fading of the memories, I did what any vaginal cancer survivor would do.....I got a tattoo.  Incorporated a dove (sign of peace and of long life) with the teal ribbon. I like it.  Every time I look down at it I will remember that I lived through the challenge.   I'll post a pic once it heals completely.  Oh, and it hurt a lot more than the little radiation tats on my butt :)

Life returns to normal, whatever that is...

Haven't posted for awhile; I'm amazed to see the number of visits to the blog.  Hope some of the visitors have found some reason for hope or humor in their personal journeys.
I'm finding that I'm running out of cancer related things to post.  I've moved on and life is largely getting back to normal.  Doctors visits are now only once every six months, with scans once a year.
I'm feeling better than I have in a long time.  I feel incredibly blessed to have made it to this place. I try to remember that and keep that peace inside of me.  So much of it gets lost in the struggle of day to day life.  We get so caught up in living sometimes that we forget what it means to live.
My heart goes out to those women still out there actively fighting through treatment, or still struggling with the disease and the effects of treatment. I read their stories to remember what it was like. I wish we could all make it through unscathed, and be better for it.

Ten things cancer has given me

I'm starting to think (and blog) in bullet points.  Too much time in powerpoint meetings? Perhaps.
This is where my mind was during a particularly dull one today....

Thank you, cancer experience.  You have brought me:

1) A quicker recognition of simply beautiful things. You can't appreciate spring flowers when you don't feel well or when you are consumed with staying alive. I see them now. I see them immediately and gaze a little longer than I used to.

2) An appreciation for good health.  A return to health makes you appreciate more what you had, then lost--the ability to get through a day without thinking about how crappy you feel or look. I only hope I don't go back to taking it for granted.

3) Empathy for those who have had a much tougher journey than I have.  I want to help those just entering the cancer chaos, but I don't know how to reach them; how to connect or what to say or do. I want to tell them that they will make it through to the other side and that in the year to come they'll be creating their own list, if only in their head.

4) The freedom to not stress about keeping up with friends and family.  Those that truly care are always there...regardless of whether you've talked to them or sent them a text or an email in the last six months. Some of the strongest human connections I have are rekindled fairly infrequently.

5) The opportunity to see how the friends and family referenced above reacted. Still trying not to be bitter in some regards; I'm sure some had good reasons for indifference or avoidance. I hope I can be better than that. It's kind of like going to your own funeral; you get to see who "shows up" for you.

6)  A personal growth experience that I would have missed had I not been diagnosed and gone through the ups and downs (okay mostly downs) of treatment and recovery from treatment.  Some people actually pay life coaches for this kind of stuff .

7) A glimpse into a world of internet connections that I never knew existed. I've "met" women on line who have wonderful stories to tell; women who are marvelously talented writers and are actively sharing their intensely personal tales of cancer diagnosis, treatment, and life.  Yes, life goes on amid it all and it's fascinating to see the sunshine of shifting perspective among survivors and the remarkable optimism of those still struggling to beat it.

8) The ability to put my feet up after a long, tense day and not feel guilty about it.  OK, admittedly still working on this one but I'm clearly not as type A as I used to be....

9) An increased ability to speak professionally.  I have less fear about making my points known; I'm less intimidated by being surrounded by intelligent men. On second thought, this may have more to do with age or hormones (or lack thereof) than cancer. 

10) Menopause. Speaking of hormones...cancer has brought me roughly and abruptly into the "change of life".  Several years sooner than I would have gotten here without the aid of radiation, but what the hey.  I can say I got it over with; one less thing on the great 'to do' list of life.

Hope Springs Eternal

Thankful today for the beauty of spring. Hoping everyone has beautiful flowers out their windows and in their souls.

HRT

Have I mentioned that I love my estrogen replacement patch?  I waited for over a year to take the plunge, but am so thankful now that I did.  Who would have thought that actually being able to sleep all night would have such a positive impact on one's outlook on life :) 

Grateful for having made it to this place.  Thank you Lord and thank you....whoever invented estrogen replacement!

The proverbial other shoe

Do you ever get over the feeling that the other shoe is about to fall?  I'm guessing this is a fairly common phenomenon among cancer survivors....the thought that every weird thing that goes on with your body is a sign that the cancer is back, or has moved, or is encroaching into some new tissue, some new organ.

Wonder if my insurance company would care if I had a PET scan every week.  Ha.

To hormone or not to hormone?

That is the question.  I have been resisting any kind of hormone replacement therapy. Doctors are reluctant to recommend one route or another. Tales of the increased risk of breast cancer abound. I've had that scare in (what seems long enough ago to be) a previous life. Multiple lumpectomies and finally, a diagnosis of grandulamatous lobular mastitis. Not at all fun at the time, but after this most recent adventure, a walk in the park. But I digress.
After almost exactly a year of dealing with the motherlode of hot flashes, I've thrown in the towel (no pun intended) and jumped on the estrogen replacement bus.
What pushed me over the edge was snapping....literally, a couple of different times, and at work no less. So I decided that since I really like my job (and having the ability to pay my mortgage) I needed to do something to address the irritability and the sense of overwhelming frustration.  I could have found a shrink, or tried anti depressants (actually recommended by a doc along the way) but am fundamentally opposed to both.  Instead I opted for estrogen.  What a concept.  Turns out the body wants and needs it, even after the ability to produce it is stripped away without consult.
I'm only 4 weeks in, but can tell the difference already.  I sleep better, have more energy, and have a somewhat diminished desire to rip the head off of overbearing and/or incompetent people I work with.  Life is good.

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.  

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.

Achy Brachytherapy

I've been avoiding trying to explain the next step...internal beam radiation or brachytherapy as the experts call it. I never knew such a treatment technology even existed, so the whole experience was a series of confusing and weirdly technical steps.  There are catheters and needles and probes, oh my.    All inserted in the vagina.  There is even a nuclear physicist involved. They would walk into the room with the radioactive "source" in a round metal cylinder.  They would "place" the source strategically in the vag and then the doctor (radiation oncologist) would check placement. Then all medical personnel...the doc, the nurses, the scientist, the cleaning lady, etc. would vanish--scattering in all directions to avoid exposure. Once they were safely out of range, a light would go on (literally the same sign for radioactivity you see in the nuclear power plant movies) and the clock would start ticking...something like 20 minutes at a time; laying there with what felt like a 6 inch diameter metal rod in your vag with your legs in stirrups.  I kept thinking about Chernobyl and 3 Mile Island between my legs.  I may have even seen a glow "down there".
Obviously I didn't understand it all, and looking back I should have asked more questions. Since this poor excuse of an explanation may not cut it for those who have been told they'll have to go through it, here's the official definition:
Brachytherapy involves treating disease by exposure to a radioactive substance. Doctors place a small radioactive source (pellet or seed) in or a short distance from a cancerous tumor. Brachytherapy allows use of a high dose of radiation while reducing the risk of damage to nearby healthy tissue and increasing the likelihood the cancer is destroyed.
Doctors may place brachytherapy seeds inside a body cavity, such as the vagina, or insert seeds into body tissue using hollow needles. Brachytherapy may be used alone or with radiation given externally. Radioactive seeds may be left permanently in place or removed after some time.
Brachytherapy is an effective option for some people who have prostate cancer or cervical cancer, and may be preferred for some women who have uterine (endometrial) cancer. Doctors recommend brachytherapy for people who are at risk for tumor regrowth in the upper vagina after removal of the uterus.

I had five or six of these treatments.  I guess it wasn't that bad.  Of course we say that about childbirth once it's over too. Bottom line is, this is the most powerful tool against this kind of cancer.  So who was I to oppose a little discomfort and humiliation?

They call it "therapy"... radiation therapy

Much like chemo, if you've never actually been there, it's tough to imagine what it's like. If you think about it, anything that you HAVE to do every day, whether pleasant or not, becomes a drag after awhile. So the first few sessions aren't bad, but you'll tire quickly of making the drive to the clinic (that smells like frying human flesh the minute you walk through the door) and the routine--wait, wait, wait, then drop your pants. 
Again, struck by the sheer volume of patients....who knew so many people had cancer?  Many are elderly and obviously frail...having been assaulted first by the disease, then by the treatment. I heard very personal stories in the waiting room...someone told me I was lucky to have breast cancer, because it was SO treatable.  Much better than throat or head, because radiation there makes you not able to swallow.  Perspective is good--always someone in a worse state...makes you almost glad to "only" have vaginal cancer. I didn't correct the guy...who wants to tell an elderly gent with throat cancer that you have cancer of the vag? Let him assume that every middle aged female there has breast cancer. They obviously have much better PR people than the vaginal cancer group...
Anyway, the treatment consists of young and artifically upbeat radiation techs leading you into the room and, in the case of vaginal cancer, lying on a table face down with your ass (discretely covered with a thin towel) up in the air.  You can't see much since you're facing the ground, but basically, they align the machine so the beams hit the area defined by tattoos placed strategically to get the radiation directed at the right area.  Each session takes about 20 minutes, excluding waiting time. Everyone's case is undoubtedly different; I had to do this every day for six weeks. Possibly the longest six weeks of my life. 
It gets difficult to explain to people at work why, when you usually work until 6 or 6:30, you suddenly have to leave every day at 4.
Radiation makes you tired; radiation to the pelvis gives you diarrhea.  That's it in a nutshell.

First, chemo

Being told that chemotherapy will be part of your treatment is unsettling at best.  Most people understand the concept, but until you've actually been there it's difficult to even imagine. Granted quite a bit of time has passed since I completed the prescribed sessions, but here's some quick memories......  Hope they help someone who reads this know what to expect.
--You will sit in a chair for hours at a time.  This was the worst part for me considering I can't stand sitting still, doing nothing, for 5 minutes--let alone 5 hours.  Depending on what chemo regimen they're using, it takes a lot of time to let the IVs of anti nausea meds, the actual chemo drug, then a saline flush (designed to minimize damage to the kidneys).
--The nurses are awesome; they often have many patients to deal with at the same time but still manage to make you feel like you have their undivided attention (most of the time).
--Doing anything while you're there is difficult--this includes working, reading, watching TV, etc.  Either the stress of the experience or the brain cell killing drugs make it impossible to concentrate.
--You realize very quickly that many patients around you have a much tougher situation than you're facing.  You can't help but hear bits and pieces of their stories since you're all sitting in very close proximity.  These tidbits include information about how long they've been enduring this routine, some for months, even repeating the process over again--dragging into years. 
--For the above reason--strangers personal lives so close to you--I found the most important thing to remember to bring is an Ipod.  No better way than to block other people's conversations from an already overtaxed brain. Don't get me wrong--I had all the empathy in the world for people there, but some people just can't shut up--even when sick.
--It is impossible to look healthy when you're bald.
--They tell you to bring snacks, but never felt like eating.  When I tried it, I was immediately nauseated. Some people had family bringing them in McDonalds, or whatever fast lunch was available so this obviously varies from case to case.
--Don't feel like you have to bring someone with you. I was never sick enough to not be able to drive myself...not to mention I usually went from work to chemo.  My daughter came with me once on a school holiday, and she was bored silly. Unless you have someone you can talk to for hours at a time, you're better off alone so you can NAP.  Napping is good.
--The warm blankets are great!  Always say yes to the blankets.
--The absolutely worst part of chemo is managing the impact of the drugs to your bowels.  Life starts to revolve around pooping.  Anti nausea drugs cause constipation.  Radiation to the pelvis causes diarrhea.  Managing this to a middle ground is miserable at best.

The most important take away from my ramblings here:  
You will survive this experience.  When you're faced with it, the courage will be there.  You can do this.

Next up.....the radiation chronicles.

The first point to remember

...if you've been recently diagnosed is that in all likelihood you are not going to die. There are doctors out there--both OB/GYNs and oncologists who may make it seem like it at first.  I've decided they're intentionally grim.  The basic premise of making yourself look good in the business world -- under promise and over deliver -- can apply in medicine too, right?
The fact is they have a prescribed approach to treatment.  They will recommend you follow it.  They will make no promises, and they will assume you will comply because you're scared and you want to live.

In most cases, the treatment prescribed involves chemotherapy and seemingly endless sessions of both external beam and internal beam radiation (use your imagination here).  Let the humiliation begin.

Telling the story

So this is the world of blogging.  I never thought I'd walk through this gate....never had anything interesting or meaningful enough to share. I'm just a middle-aged mom walking through life one day at a time.  Somewhat of a workaholic, but other than that no major vices.  Trying to raise a teenager through the 'attitude years' and into productive adulthood.  Trying to keep my sanity in an always chaotic and sometimes insane work environment. Plodding along day after day like millions of other people...making a living, raising a family, trying to find some enjoyment in life along the way.

Starting this blog for one reason only.....to share my story and hopefully help others through a similar journey.  Hoping to keep it interesting enough to keep the attention of anyone who finds it and can relate to the diagnosis. Hoping to help someone else answer the question....."WHAT kind of cancer?" when you really don't want to repeat the answer.  Vaginal.  Yes, vaginal cancer.