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 :)