Time

My husband and I will celebrate our 21^st anniversary in June.  Some days it doesn’t seem half that long and others it seems like our golden anniversary is just a few years away.  I’ve been trying to organize all my photographs from the past 21+ years and I can’t help but linger over pictures of my children at different stages of their lives.  It’s a bittersweet thing to be sure.  How did my son go from that six-year-old muscle man to a junior in high school considering colleges and careers?  Or that adorable three-year-old girl with the curly brown hair.  When did she turn into a 14-year-old with the confidence to sing in front of an audience of junior high and high school students?

 “Cherish these moments.  They won’t last long.”  How often did I hear those words when my kids were small?  Probably more than I can count.  I listened and I DID cherish those moments.  The conveyers of such wisdom were right.  Each instant was over in a blink of an eye.

I love getting a glimpse of the adults Taylor and Katie are turning into.  Most of the time I thoroughly enjoy hanging out with my teenagers, but sometimes I wish I could just jump in a time machine and go back to when they were little.

Time is such a funny thing.  It never goes at the same speed.  When you’re sitting in a boring classroom those 50 minutes seem to stretch on forever.  But when you’re doing something you love it seems to breeze by.  While I was looking through the photographs it hit me.  I’m three months shy of the four year anniversary of my diagnosis.

That first year felt more like several years.  I’d start to see the light at the end of the tunnel, only to realize it was a speeding train heading right for me.  It was a frustrating year, full of immense physical and emotional struggles.  I really thought once I was told there was no more cancer (never thinking I might have a metastasis or recurrence) everything would get back to normal.

But instead of normal, my family moved, settled into our new home, and then I started planning my reconstruction.  Once I felt recovered from that I found myself having a complete hysterectomy with removal of my ovaries, throwing me into instant menopause for the third time.  It was just one thing after another after another.

2008 was the first year since my diagnosis that was truly good.  It took three years for me to get to that point and it felt like forever.  But now it sometimes seems like a lifetime ago.  Until I wear myself out and end up with thrush and ulcers on the roof of my mouth, courtesy of whatever funky things chemo did to me three years ago.

I don’t delude myself into thinking it will ever be forgotten.  My body will always carry the battle scars as reminders.  I am once again a happy and contented person except now there is a bit of mournfulness just under the surface that wasn’t there before.  That has gotten better with time and I am hopeful it will someday go away – maybe when I finally and completely accept my “new normal.”

Three-and-a-half years ago, when I had just barely started down this path, I thought the journey ended after the treatment and the reconstruction and hearing the words, “No Evidence of Disease”.  At that time I felt as though I was progressing so slowly and the road to the final destination would be an excruciatingly long one.  What I have learned, however, is the journey never ends.  Thankfully the scenery changes, though.  The desert that appears never ending does finally lead to greener pastures and the journey becomes much more tolerable and eventually pleasurable.

Just like I would love to travel back in time to when my kids were little, I would love to travel back in time to four years ago; before my world changed forever.  But if I were to stay in the past I would miss out on so much the present has to offer.  Two incredible teenagers who make me laugh and smile and, yes, a little crazy.  And a life with more wisdom and depth and even purpose than I knew before.

So if you are in the middle of the desert and are blessed to fully recover from cancer, I offer you hope. The time may drag by right now, but this too shall pass. I promise.

My negotiation skills still work

I am out of the hospital and home!  I woke up to the sound of puking, but it was not from me but from my little princess.  I think all the emotional separation has impacted her immensely.  The day wore on with more  throw up and soft bowel movements. I vow to call the doctor if it continues for more than 24 hours.  Sure enough, last night at dinner the dinner table had a near miss.

Oddly enough I was glad to be home and purposely there to rock my sweet child to sleep, and attend to her feverish red cheeks. It totally distracted my own pain, that is now a constant reality for me.

In the hospital they want to know on a scale from o to 10 how much pain you are in.  My answer now is 3 but in the lonely hospital with nothing else but myself to focus on was the same painful region an 8.  Diversion is not a cure for me but definitely a good home grown remedy to cancer pain. You could say it was another form of negotiation, but not with the doctors, but within myself.

One other negotiation was that I allowed my child to use scissors real adult scissors for the first time. But not to cut an ordinary piece of paper, no much more significant. My Hospital Arm Band!  It was a special occasion for both of us. Our little unforgettable moment. I have to make more unforgettable moments as soon as possible.

fireside chat to bedside chat

I have been blogging offline for two days, because I landed in the hospital unexpectantly. The reason is called

Neuropathy.  I got a numb bottom right lip that grows per day to the size of a softball deep into my gums and the next

day the processes starts all over again. After a battery of scans and lung x-rays, I have baffled the doctors. No water

on the brain, no hot spots on the lungs. No Tia, or mini strokes.  While they were scratching their heads, I was being

confined in prisoner like fashion. Don’t walk around un attended, and going outside for fresh air was unheard of.

I blew a gasket, and began my highly tuned negotiating skills to get myself back home in my own bed.  This was not

a psych ward, and could not be kept against my will? right?

The Plan is to set up new radiation spots to help relive the pain, Neck, Ribs and a sundry of other small places on the hip. Otherwise I will live a life of pain killers and pray God understands that I suffer as Jesus did on the cross. I am not being over dramatic, I have a high tolerance for pain. But even I can not bear day and night excruciating stabbing pain. So the plan is to give me morphine pills and happy pills to change the disposition of the pain killers that give you an I “don’t care” in the world feeling.

Dexamethason better know to the Dutch as Laugh pills.  Happy pills and  Oxynorm 20mg every night, here I come.

Telling the kids

We need a bat signal or something. Mothers with cancer, alert!

I spoke last night with a new friend, a mom who has just been diagnosed with (early stage) cancer and has to tell her children today. She’s having surgery on Monday and doesn’t want them to worry, but does want them to understand. The kids are 3 and 6-ish. Between us, we have 20 perspectives of how to tell the kids, and dozens of links and ideas and reassurance.

Moms with cancer, could you please take a moment and post a link to your stories or something that helped you in talking to your children?

I told her about the site last night, and she may come looking today….

This is a chance to really help “that mom” who is out there looking for us.

A Survivor’s Story, at Relay for Life

It’s funny.  I do a lot of talking online about cancer and survivorship and what happened, and I give talks professionally all the time, but put them together and it’s a whole new level of scary.  You see, I started talking about cancer on my blog because I wasn’t good at talking about it in real life.  I didn’t call up my girlfriends and chat casually about chemo or mastectomy … or my fears.  I typed it here instead, telling all of you, but without the risk that face-to-face emotion entails.  It was the way I coped.

But last night, at @kbaumler’s invitation, I spoke to a room of 100 Relay for Life runners, team captains, activists, survivors (a few), and caregivers (many, oh, so many) about my story.  About what it was like to have cancer.  About what it was like to survive cancer, to help kick off their Relay for Life 2009 season.

I didn’t know what to talk about.  Kristina said, “tell your story.”  So I did.  The first draft came out kinda dark.  I think I brightened it up some with a subsequent draft but it was still not a happy story.  But how could cancer be a happy story?  Yes, yes, I’m thrilled to be alive again, but the end result of a year of struggle and pain and work is … that I’m at the starting line again.  I’m alive. … but so are all of you, y’know?  It’s hard to be grateful for — or happy about — cancer.

But today I am grateful, for I was able to help three people yesterday.

1. @alexcaseybaby, whose twitters about a friend having a preventative double mastectomy came just as I was doubting my words.

2. A woman who came up after my talk last night and told me that she was grateful that I spoke the forbidden words — acknowledging that the fight against cancer does not end with the good news that the tumor is gone.

3. Another mom, who happened to be sitting at my table last night with her two kids, as I sat there with my two kids, all of them eating fruit and snacks together, who left as I began my talk.  I worried then that I had offended — but as it turns out there was more to the story.  You see, she has cancer too.  She’s having surgery on Monday and has to tell her kids … today.  She needed to hear me talk, to see me standing there, to see that there is life beyond cancer.

And talking to her afterwards, as I told @mommy4cocktails, who so graciously came out just to hear me and sit by my side (and for which I’m forever grateful!), was the reason that I’d been brought there.

That made it all worthwhile.