Feelin' Fine!

It's been so long since I've checked in with this blog and I'm so pleased to say that I'm doing just fine. This month marks seven years since my diagnosis and I've been cancer-free ever since the tumor removal in September 2007. 

Life takes on a different character after you battle this disease and each passing year gives you more promise that you'll live as long and healthy as you've always wanted. It's all we want, really, to live a "normal" life. None of us come into this world expecting to live to be 120, but when something profound comes along that threatens to steal dozens of good years away from you - YOUR years that you've counted on, that your family has counted on, it forces you to take a radical new perspective on what your life may now be like. If you're fortunate enough to beat this disease, the rest of your life doesn't simply open back up again, uncoil like a compressed spring being released. Instead, you're afforded a little bit of your life back at a time - a little more hope with each passing month, each year. This is a way of protecting yourself, but also a recognition of the new life you've been given. It's not the same life you had before, where old age was the expected scenario. In this new life you've been given the gift of perspective on how to live with future uncertainties and on just how precious each day is.

About a year ago, I sat across from my oncologist during a checkup and he put down my thick chart that is literally the size of a big city telephone book, and looked at me. He smiled, held out his hands and took mine in his, then said, "I am proud of you. You look so good, so happy, and you're living your life again - finally. The way we want to see all of our patients live their lives after their battles."  I smiled in agreement, sharing this pride, realizing how sincere his words were and how deeply they resonated with me and this journey. 

We are all in this together. Whether you're in the midst of your fears within a battle that seems so huge that you shudder with every thought about getting through your day, to those who have won the cancer battle and moved on to all the other battles we wage in our lives. The doctors are here too, and our families. This is who we are now - forever changed, forever united, we muster through and somehow persevere. 

Moments of Grace

I met a woman in my doctor’s office this afternoon.  I was there having my port accessed so I could go over and get my MRI.  She was there because she had recently been diagnosed with breast cancer.  She was asking the nurses questions about what to expect.  The subject of ports came up and I told her about mine.  That led to many other questions and we all talked for quite awhile.  There are so many questions at the beginning of the cancer journey and far too few answers.  The answers that you do get are often contradictory and vague because no two people experience everything in the same way.  These are not the types of answers that you want at that time.  You want someone to tell you exactly what it will all be like and most importantly, that everything will be just fine.  You don’t want to hear someone else’s horror stories but you would like to learn from other’s mistakes.  You don’t need to be reminded that you need to look on the bright side (where is that side again?), from the optimistic pollyannas who assure you that you will beat this thing, if you just decide to.  Sure, you are planning on beating the cancer, but you can’t just completely ignore that scary little voice that whispers, “what if?  what if?”.   So I say, ask lots of questions.  Take the answers you receive and filter them.  Keep the answers that work for you and let the others slip off.  Feel free to ask;  some won’t want to talk about it, but for others it feels good to share experiences.  It always makes me feel good when I can ease someone else’s mind by letting them know how it went for me.  At the very least, it reminds us that we are not alone, even in the darkest hours. 

After my port was accessed and the lady and I hugged goodbye, I went over for my MRI.  Once I got there I was informed that they were running two hours behind (shocker.), so I headed home for a nap.  But I couldn’t fall asleep.  I kept thinking of the woman from the doctors office.  She seemed so brave and strong standing there facing down a den full of lions.  I was proud to stand by her side for a moment, lending a shoulder to lean on.  So I dug through my bookshelf and found my favorite book on cancer, “There’s No Place Like Hope” by Vickie Girard.  I wrote a little note to go with it, wrapped it with a ribbon and took it back to my doctors office.  I asked the receptionist if she would give it to that lady and she assured me that she would.  It was nothing big, it might not mean much, but for me it was a moment of grace and I’m glad I followed my heart to it.  

All Clear!

The results are in and I am all clear!


My MRI scans of my chest and leg came back and I am NED (no evidence of disease), which is so wonderful, such a relief.  It feels like I'd been holding my breath for a week.  So, no more scans for six months.  I can go back to vacillating between completely forgetting all about cancer and the hypochondriac tendency of wondering if each ache and pain is actually a horrible relapse.


Things have gotten better with my mobility also.  I have actually walked off without my cane several times now.  I have to tell the kids to go run around the house and find out where I left my cane this time.  It's usually propped against the wall in the kitchen or leaning against some clothes in the closet.  I do still need it when I am outside where the ground may be uneven, but indoors, I am good without it.  


I still wear flip-flops nearly all the time but have managed to fit my foot into a ballerina flat on occasion.  Of course, I would wear flip-flops and ballerina flats nearly all the time anyway.  But I do miss being able to wear some high-heels every now and then.  High-heels automatically give you that sexy-girl attitude.  Flip-flops and a cane do not.  In those instances though, I just put on a lower cut blouse and call it a day.

Finding my Happy Places

It's that time again.  Time for the MRI scans.


I went in this afternoon and spent two hours in the tube so they could scan my chest and my leg, with and without contrast, looking for metastasis.


An MRI tube is a scary place to be.  It's tight and enclosed and incredibly loud.  Your instincts tell you that anything that loud and frightening is somewhere to get away from immediately.  After I tamp down my fight or flight response, I spend the next twenty minutes keeping claustrophobia from slipping into the cramped tube with me. She's a sneaky phobia but keeping my eyes squinched shut helps.


After my heart stops racing and I relax a little, I am able to go looking for my happy places.  I have many of them and they are a great comfort to me especially during times of medical distress.  I ease in with some lovely thoughts of sex and chocolate, then after I am sated with those, I start decorating my cozy mansion overlooking the sea.


Travels to the rocky coast of Ireland, swinging in a hammock on a beach in Aruba, reading books in my garret tower on a storm tossed afternoon, then back for a little more sex and perhaps some baked goods this time and before I know it I am being woken from my half-doze as the tech comes in to release me from the tube and send me on my way.


Now, I just have to wait a few days for the results. While the tube is uncomfortable, the waiting can be nearly unbearable.


I'll post the results soon; now excuse me while I go back to my happy places.

Know thine enemy.

Tom gave me the most romantic book for Christmas!  Not really. He gave me a book called "The Emperor of All Maladies" by Siddhartha Mukherjee, which is basically a biography of cancer.  Not romantic, but still engaging reading.

I usually read in the evenings, after the kids are in bed and the house has quieted down.  However, with this book, I found myself picking it up every time I had a free moment at any time of day.  I devoured this book because it really hit home.

Not only have I had two rare cancers in my lifetime (Hodgkin's Disease when I was 25 and Sarcoma when I was 40), but my mother battled breast cancer twice, lived for many more years and then finally succumbed to myelodysplastic syndrome which developed into leukemia.

So I have truly been there.  I have sat in the doctor’s office feeling dizzy from the blood draining from my head and the overhead florescent lights becoming too bright to bear as I had to absorb the terrible news coming from the doctor’s mouth.  I have tried to relax in the recliners in the chemo room as the nurses searched for a vein to start the poisonous drips.  I have run my fingers through my hair and pulled away handfuls of hair and dealt with sudden onset baldness not once but twice.  (The second time was easier, comparatively speaking.)

I have lived with cancer for a long time but I never really understood the disease and how our attempts to cure it have evolved.  After having read this book, I have a more comprehensive view of it than ever before.  I have lived it physically and emotionally, now I have a grasp of it intellectually. 

One of the things in the book that really surprised me was how chemotherapy is a relatively new field of medicine. Cancer seems to have been around as long as people have been; the first documented case is from Ancient Egypt around 1500 b.c.  Doctors and researchers have been fighting it all along but there was little comprehensive effort and no serious government involvement until after World War II. 

Over the years, when possible, cancer was treated with surgery.  Radiation came along around the turn of the century but wasn't really refined until the 1960's.  Chemotherapy came after that.

So modern oncology has only been going for about 50 years. For some reason, I had thought that we were so much further along with oncology.  When actually, it’s not that much older than I am.

I know that I was lucky to get my Hodgkin's Disease when I did because of the new treatments that cured me and preserved my fertility - unheard of even 20 years prior.  Hodgkin's Disease treatment was a wonderful success that has been difficult to duplicate with other forms of cancer. We have come a long way in these 50 years of modern oncology but we still have so far to go.  

All the while I was reading this book, I was hoping for the happy ending.  Mukherjee does end the book with hopeful ideas of where future cancer treatments may lead us, but as of yet there is no magic bullet.  The best we can hope for right now is to still just keep holding on...

Check out Zunaira's blog: I Need a Leg

Have a sarcoma story you'd like to share? Leave a comment with the story or a URL of your blog.

Here's one that came to us yesterday. Please visit Zunaira's blog HERE.

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In early March 2010, Zunaira found out that she had an aggressive form of cancer in the connective tissue of her left thigh; it’s called Sarcoma.   Her insurance company, Aetna Insurance, is covering 80% of the medical treatments, and her share is already upwards of $15,000.   The company actually tried to drop her from coverage but was unsuccessful because there was no documentation of a pre-existing condition.

Zunaira valiantly fought off the cancer and had her leg amputated.

GOOD NEWS!

Glad you stopped by today folks because have we got a deal for you.

You say you like good news.  You say you like to hear about nice things happening to nice people. 

Well, step right up sonny, because I’ve got what ya wanna hear.

For starters, howza bout this?

The walker has been put up into the attic!  That’s right; no more walker around here.  I’m the one walking so look out!  Woo Hoo! 

I have been using my lovely quad-cane for over a month now.  The quad-cane is what the old man, Carl, used in the movie “Up”.  Although his cane had tennis balls on it, I haven’t progressed to that point yet.  I don’t like having to use the cane but let me tell you, what an improvement on the walker!  Plus, I’m able to use the stationary bicycle for my physical therapy again, so look out!

But that’s not the only good news around here lately… We’ve got more!

I am infection-free!  That’s right – Kiss me, I’m not infected! 

Doesn’t sound as good as Kiss me, I’m Irish.  But you gotta work with what you’ve got. 

I have been off of the high-dose i.v. antibiotics for over three weeks now and so far, the infection has not returned.  Yippee!

That’s great, you say, but you say you still want more???  Well step right up because we have got a full package for you here today.  In addition to all of this great news, we have something else;  yes, wait – there’s more!  My wound has finally closed!  Yee Haw!  Yes folks, I’ve got a big old beautiful scab right on that wound and that thing is sealed up tight!

Now, how much would you pay for this great news?  But wait, there’s more!  Act now and we’ll double your offer – that’s right TWICE AS MUCH GOOD NEWS!  For three easy payments plus shipping and handling you’ll get good news for me, good news for you, good news for your little dog too.

Now, is anyone interested in a Veg-o-matic?  I’m on a roll….