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….

It’s hard to keep your mojo going when you’re rockin’ a walker

Yesterday I cast my walker aside and walked with just my cane.  True, it was only for a little while and then the pain was too much again.  But it was still a huge leap for me, a delicious taste of freedom and liberation.

It’s been another long year of pain and recovery.  We look back – trying to remember when my leg took a turn for the worse. Tom and I remember how unexpectedly hard it was for me to walk around during our cruise last July. Then the next month, August, and our vacation in Santa Barbara. I remember being so proud that I could walk along a path for a short time without resting, but the pain and swelling were getting worse, not better. Then September came and another debridement, but the recovery brought no relief and the pain worsened over the next month until October came and the cane was replaced with the walker. The pain was unbearable.

It wasn’t until November that we got the diagnosis of the infection – MRSA, and the fractured tibia. Still, we didn’t put the timeline together or realize just how long the infection had been deteriorating muscle, weakening the bone, and delaying healing of the wound itself. At the time we didn’t think that a cancer recurrence could also cause these problems, which it surely can. We learned that scenario in February from a doctor with the UCLA sarcoma team. He saw the leg when healing was finally taking hold and therefore he pretty much ruled out a recurrence. Thank God we didn’t have the cancer scenario on our minds or that dread compounded with the day-to-day pain would have made matters even worse. It’s a classic case of where a little ignorance went a long way.

I’m still on daily i.v. antibiotics (five months & counting). My infectious disease doctor wants me to stay on them until the wound closes completely, which he predicts should be only a week or two, (of course he has said that for the past few months). It’s hard to imagine that this open wound, which I’ve had for 22 months now, will ever heal, but I watch it daily and it does seem to be doing just that. The infection kept the wound from healing for how long? A year? Who knows; but that is behind us now.

I’m still working to get my energy back. I’m thinking that these ultra-potent antibiotics might be zapping my strength. But I also realize that moving at one mile-per-hour for the past six months may have something to do with my loss of conditioning.

We had our family dance party last weekend where we blast the music and rock out and try to embarrass each other.  I had been on the sidelines, cheering everyone else on for quite awhile now.  But this time I was finally able to stand up and join in again.  It is truly hard to keep your bitchin’ self going strong when you are rocking a walker.  But now I am starting to feel my mojo again. 

Baby, it feels good!

Last night I dreamt I could walk.

Last night I dreamt I could walk.

I used to have wonderful, fantastic dreams of flying. I would dream of soaring through the sky, swooping and gliding, powerful and strong.

Now, I dream of walking. I’m walking quickly, zipping through stores and down sidewalks with my long, graceful strides.

This has been a long, hard fight with cancer. It’s been over two years since my first surgery. I have dealt with so much; losing my hair and my energy, gaining scars and battle wounds, learning to live with constant pain. With each blow, I struggled and persevered. But losing the ability to walk has been devastating. Now even a trip to the bathroom has to be planned in advance. Stairs have become impossible mountains. When I left the house the other day and got to the car and realized I had forgotten my keys, I burst into tears. Just the thought of all of that wasted effort was overwhelming.

I am still doing almost everything I did before. I still go to work, do the shopping, cooking and cleaning. But now I have to ask for help with all of it. My co-workers see me pull up in the mornings and they come out to help me with the door and carry my coffee in for me. My sister cooks for us sometimes. My kids do a thousand little things that my persnickety self wants “just so”. Tom has taken over more than half of the shopping and cooking and all of the laundry. Nick has learned how to make my evening cup of tea.

Everyone has stepped up to help out. I appreciate that so much. But I am an independent person; I want to be able to do it for myself! It is hard to let go of the control. I am trying so hard to deal with this. Everything else is so good; the cancer has not come back, my family is healthy and happy and closer than ever, we have everything we need and most of what we want. And yet, I still dream of walking. Every morning I wake up with a glad heart and think, maybe today will be the day I will walk again! Then, I stand up and the pain tells me no, not today and my heart sinks again.

So I dream of walking. The freedom, the joy.

And I keep holding on…

MRSA MRSA Me. . .

The fun never seems to stop. As I've mentioned before, my surgery site wound has been open now since April, 2008. Having an open wound for 19 months is not only a chore, but a constant reminder of my condition and the ravages that cancer and treatment can cause. In late October I went under the knife once again so that my orthopedic oncologist could stimulate healing of the wound through debridement - scraping the wound site and removing a small piece of dead bone to send to the lab.

Yes, the lab agreed that the bone is dead - killed by radiation, and the doctor concluded that this is why no skin and tissue is growing over it. The lab results also came back positive for MRSA - Methicillin-resistant Staphylococcus aureus, a bacterial infection that is highly resistant to most antibiotics. Terrific. Not only do I have dead bone, not only have I resorted to using a walker due to pain and weakness, but now I have a potentially life-threatening staph infection! I keep waiting for the other shoe to drop, but instead I'm finding myself under an avalanche of shoes without the agility or ability to duck or find cover! Okay, as if that extended metaphor wasn't enough - how's this "When is all this going to stop?!?" Frustration is the word of the day around here, but there is good news: Today marks my LAST I.V. antibiotic treatment after six weeks of daily - yes, daily I.V. antibiotics. Thank God I've got my Mediport to accept all this medication!

My quarterly MRIs are coming up this month as well, so stay tuned. Sorry for sounding so down-hearted, but notice how I haven't complained too much lately? Believe me, it's been building! My loving and supportive family has been here by my side and such a wonderful comfort during these times. My husband, who I don't think has ever truly learned to do laundry, has taken over so many household tasks and guess what? - The house is still standing! Love ya honey, but you still have to learn how to separate the colors from the - oh what the heck, it's getting done! :)

More soon - I'll be sure to let you know how the scan results come out.

Keep hanging on!

Ema

Clear Scans and Back to School Drama

Back to School time is hectic, ask any parent. We have three kids so the forms, schedules, meetings and fees are multiplied. Then there is the emotional landscape we have to weave through. Sam has started kindergarten and the change has not been smooth.

We are handing out love and discipline in equal doses. Juliana is in class with her best friend, idolizes her teacher and just loves school. Thank goodness! She does have a tendency to get dramatic and overwrought so we are trying to keep things on an even keel for her. She burst into tears last night as she was reading “The Tale of Despereaux” because the mouse’s brother was being so mean to him. “How can he do that? That’s his family!” she cried. After some cuddles and reassurances that there will be a happy ending, she was fine.

Nick is doing great but has at least three hours of homework every single night. He is really stepping up though and is impressing us with his commitment to his responsibilities. However, there is barely enough time in the day to get everything done. Again, this is familiar territory for most parents.

Throughout all of the chaos, Tom and I are breathing a sigh of relief. I had my CT scan and MRI earlier this month and they came back clear! Last year at this time we weren’t able to make it to Nick’s Back-to-School night because I was having surgery. This year we will both be there. I am still walking slowly and am in pain but it’s getting better all the time. We’ve got so much on our plates but it doesn’t feel bad. This is all the good, normal, healthy commotion of living. I can so handle this!