You've Come to the Right Place.....

Folks tend to think that once cancer treatment is over and we begin to look normal again, that the hard part is done. The crisis is past. True. The worst part is over. But we’re far from done.

I had no idea the chemo side effects would dog me a year after my last infusion. Or that I’d still be dealing with issues from reconstruction.

August 1, 2012: Last chemo infusion

July 27, 2013:  Nearly a year later

Factoid:  Chemotherapy shrinks the brain. Seriously.  I have Post-Chemo Cognitive Disorder. A fancy term for the sad fact that cancer made me stupid. I used to be pretty smart. Now, I’m slower on the uptake. Confused. Overwhelmed.  I have to work way harder than most folks to reason my way through a situation. It’s causing problems at work. I work with a lot of really smart people. They'll have you for lunch if you can't keep up. I struggle to keep up. Some folks are quite understanding; some not.  

I’m surprised at how rotten chemo brain can make me feel. I’ve always placed a high value on intelligence. I like smart people. So not only did I get to enjoy the many indignities of cancer treatment and a mastectomy, but now I get an extra dose of daily mortification because I can’t always follow the conversation when multiple people are talking, I can’t find the right word to adequately express myself, I make mistakes, I can’t multi-task as I’m expected to in order to accomplish 12 hours of work in 8.  

On the other hand, I think I've done pretty damn well considering the circumstances. I'm not really stupid. I know that. But I can’t live up to my own expectations and that's really really hard on the self-esteem. But considering all that I've been through, it's amazing I have the wherewithall to be doing what I'm doing. I read recently that courage is that little voice that says "I will try again tomorrow". And try I do. I've never been a quitter. Although some days I want to. Seriously want to.

I’m not naive enough to think I can’t get fired over this. A doctor said to me recently “they can’t fire you because you have cognitive issues stemming from cancer treatment”. Oh yes they can. And they will. This is corporate America where the unspoken rule is “keep up or go away”. So I'm working double hard to make sure I don't lose my job OR my insurance. Now THAT would be a crisis. Like I need another crisis.


Spent most of yesterday doing extensive neurology testing. Just to be sure it’s really chemo fog and not something more sinister.  Yes, it’s chemo fog. The neurologist absolutely made my day when he looked me in the eye and said “You’ve come to the right place. We can help you.”

Thank you, God. 

How to tell a friend from a bum

I’ve discovered there is nothing like cancer to rid us of the riff raff in our lives.

And there is nothing like cancer to help us discover our true friends, like my friend Laura who scrambled me eggs post-chemo because it’s the only thing I could keep down. Or sweetly sat with me while my head was hanging over a trash basket waiting for the wave of nausea to subside. Or the friends who just do kind things without being asked. They just show up and do it. God love ‘em.

I think of my friend Susan who accompanied me to most of my chemo appointments. When I’d thank her, she’d look at me and sincerely say “it was nothing”.  Perhaps, but to me it was everything. I especially appreciated the picnic lunch she packed for one of our chemo adventures. We pull up to the cancer center, she opens her trunk, and takes out a picnic basket. It was full of wonderful homemade goodies that wouldn’t make me hurl.  I recall so clearly standing in the parking lot with her feeling so surprised and delighted at the absurdity of something so wonderful as a picnic in a chemo suite. That memory will stay with me forever because of the incredible thoughtfulness behind it.

I’ve been surprised – and not surprised – at the response I had from folks after announcing my diagnosis. I received support from very surprising places, and it made me enormously grateful. On the other hand, I received support in very self-serving ways from others. Never mind. I was so sick this time last year, I’d happily take support anywhere I could get it, no matter the agenda that came with it. Moving on.

I’ve also been surprised by the incredibly insensitive things some folks have said to me, although I’ll admit it did sometimes take a few minutes or a few days for the incredulousness to roll over me. Like the THREE people who looked me in the eye said to me “oh my wife/sister/friend died from that”.  Seriously?

Or the folks who said “at least they caught it early”. Like catching it early negatives the misery suffered for the last 18 months. The greatest benefit to catching it early is that it didn’t kill me. Yet.

And the one comment that always makes me blink twice “isn’t it great that you’re cured now?” Cured? For real? One is never cured from cancer like one can be cured of a sore throat. Especially if you have Triple Negative disease. I am not cured. I am in remission. Two very different things.

Still, insensitive comments and friends who did not behave as I might have thought they should really don’t make me angry. They make me shake my head or wonder why. Their attitudes are not my fault or my problem. However, I will admit to feeling a tad hurt that the ex-husband never once called to find out if I’d died yet. But really, after what I’ve been through, he seems like a life time ago.

My cancer experience has taught me many many things. One of the most important things is how to respond to a sick or grieving friend. I never say “call me if you need anything” anymore because I now know that puts the onus on the sick friend to actually pick up the phone if they need me, assuming they will actually put their pride in their back pocket to ask for help. I start thinking about what I can do to – in any small way – ease the situation. Dinner? Take out the trash before I leave? Check your mail?

And the one thing I can always be counted on for is a plate of homemade brownies. Brownies make everything better, according to my wonderful friend Trish who ministered not only to me, but to my dog. 

Friends don’t get any better than that.

Chemo causes stupidity

Apparently chemo makes you stupid. 

My oncologist and I had a good laugh over that today. It was the sort of laughter that brings tears to your eyes, but then you realize you are crying because its true.

It's true. Chemo made me stupid. Well, actually, it's officially called "chemo induced cognitive disorder". 

Some days it's worse than others. Some days, or hours, I feel absolutely normal. On other days, I realize it's taking me longer to complete tasks or I can't focus or drill down into a complex project. It always comes back to me, but in that moment...I feel supremely stupid and horribly aware that I'm not nearly as smart as I thought I was.

My oncologist said to me repeatedly today:  You are not stupid. You have ingested enormous amounts of harsh drugs and had more anesthesia than most folks have in 3 lifetimes. You are not stupid.

Ugh. The stupidity will last quite some time - often up to 5 years. So like any good 3rd grader who can't pay attention in class, I'm going to start taking my Ritalin like a good little girl. 

I feel way better that there is a drug that will counteract what the other drugs did to my brain. 

Disease free but not free of my disease

I’ve heard other cancer survivors say “I’m disease free, but I’m not free of my disease”. Initially, I thought they were referring to the emotional toll that cancer treatment takes on us. Now, I understand it’s both the physical and emotional.  

On occasion, I can get a little ticked at the whole thing. I’m done with treatment and surgeries…why am I still dealing with all the cancer crud?

Fatigue. I’m just freaking tired. A lot. Mornings are best, but I significantly slow down in the afternoons. Too often I make plans in the evening after work only to discover I’m too exhausted to find my shoes. That’s a bummer. I spent a year being sick and tired. Now I want to live. Except I’m too tired.  I worry that friends and family will become impatient with my constant refrain “I’m tired”.  I’ve read the fatigue from cancer treatment can last a year or more after treatment ends. Some say it lasts much longer. Egads.

Chemo brain. I’ve always been slightly forgetful and a tad ditzy, but I’ve never felt more stupid than since starting cancer treatment. During chemo, there were times I couldn’t complete a sentence. My brain just couldn’t find the words. I can speak in complete sentences now, but I am very forgetful. I’ve learned to compensate – my iPhone is my best friend in that regard. I take a lot of notes, take pictures, and record video on my phone to help me remember things. But hell…I’m in the prime of my life. I should be able to remember the TWO things I came into the grocery store for!

Neuropathy. I still can’t feel my toes. The numbness in my finger tips comes and goes. No pain, just a very odd sensation that reminds me of where I’ve been.

I should quit my bitchin’. I’m not in any pain except when I roll over the wrong way in my sleep and a fake boob gets in the way. And as far as we know, I’m cancer free. 

Except I’ve been having a lot of headaches.  I think it’s allergies, but who knows?  My type of cancer generally recurs within the first 3 years after treatment ends and it likes to hide in the brain. Maybe it returned at warp speed and is gleefully kicking around in my brain.  Maybe that’s why I keep forgetting to pick up Windex at the grocery store.

No, really…I think it’s allergy headaches. I live in the southern US where seasonal allergies are the norm.

It’s just allergies….right?

Living and loving forward

A little over a year ago, I was diagnosed with breast cancer. Since that time, life has been one big roller coaster. There have been extreme highs and a few menacing super scary drops. Yep – breast cancer took me for a ride and changed my life forever.

That sounds dramatic. Changed my life forever. But it did. Probably in ways I don’t yet understand.  But I’m pretty sure I would not have chosen to drink the Sacred Juice (chemo), lose all my hair, or have my breasts cut off. However, all we’ve got are the cards we are dealt and there you have it…life.  It is what it is. What we do with it is our choice.

My gratitude for healing and good health overflows. I’ve written about it, talked about it endlessly, prayed over it. I am blessed in more ways than I can count.  I’ve read that cancer is an unexpected gift that brings us blessings and gifts disguised as infusions, needles, pills, stitches, and scars.  Amen.

Now, only 8 weeks after my last surgery, I feel myself moving on and bringing with me all that I’ve learned and all that I treasure.  But even as I move past the horror of the past year, I am still fearful. Fearful that it will return and I’ll have to do it all again. Fearful that I will have to hear those awful words again that set my world spinning. Recurrence.  The worst fear of all.

The question is how to move forward in spite of the fear. Simple. It’s the same as moving forward after the diagnosis into the treatment. That was scary as hell. But I did it anyhow. I took a long deep breath, cried more than a few tears, and lunged into what I knew I had to do in order to live.

It’s the same now…I will take a deep breath and lunge forward into the rest of my life.  Because it will be what it will be. So why not have a good time along the way?

Smile!

Six days to go

Six more days of expander hell. The countdown has begun. So has the anxiety. Yet another surgery. Yet another anesthesia. Yet another 6 weeks of restricted activity.

By now, I know the drill. I know what to do in the days leading up to the surgery to prepare for the days just after. Even the anxiety feels familiar. Not quite like an old friend. But I recognize it.

Had my pre-op visit with the surgeon yesterday. A fairly upbeat conversation, we talked about implant sizes. He refuses to talk in terms of cup size, although that's the only way most of us know how to measure and think about breast size. He will take several different sizes of implants into the OR to see what works, but we'll probably end up with a size of about 600 cc. Which is a pretty healthy size - probably a c cup. 

We'll use Mentor brand high profile silicone implants. The surgeon reassured me they would not explode in the event of a car accident or plane crash. Not quite sure how that is supposed to be reassuring, but tact has never been one of his strong points.

He will also do some liposuction during the procedure to achieve some contouring and remove the love handles left on each side by the mastectomy. The lipo will probably cause more discomfort post-surgery than the implants. I'm loaded up with Vicodin and Oxycontin. Woo!

On Tuesday I'll be a new woman. Well, maybe not totally new but at least I'll have boobs that don't leave bruises and indents on the folks who are brave enough to hug me. A definite improvement. 

Punched in the soul

My oncologist made a comment to me recently about how awful my chemo regimen was. She said she knew when she prescribed it that it would kick my butt and "punch my soul". 

Likening my experience with chemo to being "punched in the soul" is so apt. I'm so glad she made that comparison because it allowed me to think of the experience as more than just months of nausea, no appetite, fatigue, and feeling icky every single day.

Chemo does indeed punch one in the soul. It takes everything you have - emotionally and physically - to deal with daily life on chemo.

I survived 4 months of the worst chemo protocol out there. Physically, I'm still wrangling with a few small side effects. I still can't feel my toes and I still have periods of serious fatigue. 

Emotionally, I'm just beginning to understand not only the toll that my experience took but also what it gave me. 

Strength. 

An updated priority list. 

A new attitude. 

A new appreciation for the little things.

A recovering soul.