It ain't over

It is ever gonna be OVER already? Sheeze, I'm tired of the cancer thing. It has ruled my life for nearly two years, and we still ain't done. 

I've said it before, but life keeps driving the point home:  Just because you're finished with treatment and the avalanche of surgeries have stopped, doesn't even begin to mean it's over. Heavens, no. 

Side effects of cancer treatment and the hellish reconstruction perch on my shoulder like they're my best friends. I remind myself often that it is better to deal with side effects than be dead. Which is what I would be if not for the chemo and surgeries. 

I'm the first to agree:  alive is better than dead. Alive with numb fingers and toes, a brain that betrays me at the worst possible moments, and a chest that looks like a road map...way better than the alternative. 

Don't get me wrong. I am GRATEFUL. My gratitude overflows. Daily, it overflows. And it seems wrong somehow to use "grateful" and "but" in the same sentence. But I'm going to anyhow. I am grateful BUT I'm tired of ongoing c*r*a*p.

Still...my life isn't bad. I worry a lot. I'm anxious a lot. I'm afraid a lot. But I'm alive, and in general I feel great.  I look normal, which is a blessing in itself. I don't look sick any more and I have a normal head of hair. 

That's pretty good, right? It's all good. But it ain't over.

To Nip or Not to Nip

Ya! What a truly bizarre place to be in life. I am faced with a decision of whether to TATOO nipples on my fake boobs...or not. 

How funny. How weird. How awesome. How...just plain strange.

A year post-mastectomy, my reconstruction is nearly finished. Except for the cherry on top.  How wonderfully inappropriate it is to be talking publicly about something as personal as my nipples. :-)

IF I decide to nip, do I want 2D or 3D tatoos? Oh Lordy, the places cancer takes us!

My plastic surgeon is adamant that I should have 3D tatoos done by his very own medical tatoo artist. Problem is, she is not employed by him so the insurance will pay $220 of the $800 charge. Ouch.

Another plastic surgeon says his nurse can do that tatoos, but they will not be 3D (which he naturally scoffed at). Almost the same, he said. I asked to see before and after pictures. Not even close. But the insurance will pay 100%.

Do I want realism that comes with a hefty charge (on top of my already crazy medical expenses of the last 18 months) or do I want "lesser"? Common sense says to go for the 3D...what's $600 over a lifetime of being able to look - and feel - more complete? 

Or maybe I could just do the rub ons. There's a thought. 

On the other hand, I'm feeling rather ambivalent over the whole thing. Maybe I'm not far enough away from the misery of breast cancer to really care. Maybe I'll care more this time next year.

But then again...there's something..so naughty...about being able to say I have tatoos! I'm not a tatoo kind of chick. But after what I've been through and at my age...maybe it's time to do something crazy. 

Like get tatooed nips.  Whatcha think??

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. 

Surreal Reality

So...had my 4 month follow up today with my wonderful onconlogist. She took the opportunity to remind me of the ugliness of Triple Negative disease.

Two words:  Brain and liver. 

Thanks a bunch, Dr. Campbell.

We won't do quarterly scans as previously planned because recent studies show they cause more wild goose chases than true maligancies. So how do we know if the cancer has set up shop?  We wait. For something to hurt.

No kidding. There are no tests. "Just let me know if something begins to hurt"....she says. Alrighty.  I have a 'lil headache this afternoon. Should we move forward with a brain scan or just assume its the changing weather? I vote for weather.

Cancer centers are very surreal places. Humor is twisted there. Things that are definately not funny in the real world are a serious hoot in the world of cancer treatment.

Something that really tickled my funny bone today:  Prostethic nipples. WHOEVER would have guessed there is such a thing? Instead of gathering loose skin from my back to create a lifelike nipple, or instead of painting on a 3D tatooed nipple....we can just stick these little but incredibly life like pasties in a likely place and call it a day.

Take a look:

$40 a pair. I'll take two.

And yes. My blown up boobs are lopsidded and uneven. And hard as bricks. But just wait a few weeks for the real things. March 12. New boobs coming right up. New nipples too!

Can't wait!

Progress at last

Now we're getting some where. Finally. Scheduled my next (and best!) surgery for March 12. One day after my baby's birthday. That's fitting.

It's called an exchange or swap surgery because we swap these horrid expanders for real implants. Nice, soft implants. Breasts that move around rather than stick to my chest like Madonna's cone bra. Not only will they look more natural but best of all they feel more natural.

Scheduling this surgery has made a significant difference in my outlook. I'm excited about this surgery. What sort of fool is actually excited about having surgery? This one.

Confessions

So I thought I was getting off fairly light in terms of emotional fall out from the trauma of the past year. I thought I was just going to move on with my life like nothing happened once the treatment and reconstruction was behind me. Just a bad memory, you know.

Silly me.

I'm starting to realize just how angry I really am that this happened to me. Maybe its cumulative...maybe its anger piled on top of anger from my various life traumas, not just cancer. Maybe, I dunno. 

I do know I'm pissed. I recognized that fully this week when speaking with a therapist. It was our first meeting. As I told my tale of woe I realized I was spewing an awful lot of venom at the plastic surgeon, who suggested a few weeks ago that I might need to see someone. He was concerned that I cry like a baby every time I'm in his office. I assured him that I don't cry like that on a regular basis. He is special - he gets a bird's eye view of my meltdowns.

I like my plastic surgeon. Or at least I thought I did. His constant parade of vain self-absorbed patients who see him for face lifts, butt lifts, and bigger boobs really annoy me. His vanity patients, I call them. I'm different from them. Not only do I not give a rip about where my butt sits on my behind, but I've been too wrapped up in not dying for the past year to worry about any wrinkles that might be gathering under my eyes. Who cares about a few frown lines when you don't even have hair?

Everyone who works in his office from his receptionist to his nurse is drop dead gorgeous. I guess it's a PR thing. They are all very nice, but what does a 20-something with big brown eyes, perky boobs and killer legs know about life?? They don't know shit.

Then there's his condescending attitude when I gripe about how much the expanders hurt or how I can't sleep because of them. The last time I told him I wasn't sleeping well, he suggested I see my family doctor. I just cocked my head and asked why I should see yet another doctor to fix something he (the plastic surgeon) is causing? That seemed so stupid to me.

The final straw was when he looked me close in the eye and said "I think you're depressed". Really? Is that your professional opinion? Or are you just sick of having to deal with my tears every single time you see me? Are you pawning me off on someone else? Again?

The Cancer Center was very good at always making sure I knew what to expect. Or not expect. They made sure I was informed and they acted immediately when I called to complain about one thing or the other. They paid attention and responded. My oncologist looks at me when I talk to her. Unlike the plastic surgeon, who is probably too wrapped up in the beauty he is surrounded by to really listen to the woman with no boobs. 

Or maybe that beauty intimidates me. I have more scars than most at this point. I'm tired and my hair is grey. Maybe that's what I'm really pissed about....

How far I've come...

I like to think about how far I've come in just a year. From the initial diagnosis to the expander discomfort of today...it's been a long amazing road. I think back to the fear and horror of learning that not only did I have breast cancer, but I had the worst possible kind of breast cancer. The fear was overwhelming. I didn't always handle it very well. 

And today...well, today I am whining about how uncomfortable my expanders are. But really...the discomfort of stretching skin and muscle to accommodate my new boobs is nothing compared to the misery accompanying chemo. So I should just shut up and stop whining about how much my foobs hurt. Cause I'm in a pretty good place considering where I was a year ago. Or even just 6 months ago.

And it gets even better when I think about the conversation with my plastic surgeon yesterday. He says maybe one more fill and then we will be ready to start thinking about the swap surgery (where we swap the expanders for the implants) in March. That's 2 months ahead of schedule. I think he was trying to appease me with the story of " just one more expansion" to help me get through it. Cause I was complaining loudly about how uncomfortable I am and how I can't sleep. But really...maybe I should do two more expansions. Cause although there can be a re-do, it will be so much easier to do it right the first time.

Instead of settling for a small C cup, I could just suck it up and go for a more fuller C cup. Maybe. It depends on when you ask me. If its on a morning after a really restless sleepless night cause there are not enough pillows in the world to make me comfortable at night...then I will tell you I am DONE. But other times I'm more tolerant. And not nearly as bitchy and whiny.

Overall, it's not so bad. Whoever told me the reconstruction process would be a piece of cake compared to the other shit I've been through was spot on. So much easier and so much more hopeful. Where treatment was about trying not to die, reconstruction is about the future. Way better.

So in about a month or so I will have amazing new boobs. Particularly amazing for a 53 year old woman who breast fed a really big hungry baby and had the boobs to show for it. They will be firm and perky. Ridiculous even perhaps for a woman my age, but I'll take them. Particularly since they won't try to kill me like the other ones did. 

Reconstruction

Breast reconstruction is a funny thing.  The look and shape of the breast seems to change constantly, depending on the day, how I slept the night before, gravitational pull of the Earth. It always looks different to me. Some days I can see ripples in it, similar to what you see at the beach as a wave retreats.

I’m told that I shouldn’t have any expectations on the outcome based on how they look at this stage. That’s a good thing, cause they are pretty damn ugly right now.  The foobs are fugly.

They’re also very uncomfortable. I had my first fill on Monday of this week. We added 75ccs on each side.  The fill process itself didn’t hurt at all, but it was emotional and I had a good bit of anxiety around it.  I took a Vicodin the first night just to get comfortable enough to sleep. It helped but I was hungover the next day. What a shame to have to suffer a hangover without the benefit of the fun.  Where’s the vodka in that?

Five days post fill and I’m still rather uncomfortable. Had trouble getting comfortable enough to sleep last night – both in terms of a good sleeping position and in terms of pain. Not excruciating pain, but enough to make me take notice. I can’t sleep on either side very comfortably or at least for very long. My arms fall asleep. And I’m damn tired of sleeping on my back propped up. Though when I get tired enough, I’ll admit any position feels pretty good.

Throughout this process, I’ve considered documenting my reconstruction with pictures. I oscillate on the issue,  and I have concerns that the pictures will be too scary for you to see. But…they are what they are...and its all part of the process, right? 

In the pictures below, I am 5 days post-first fill and 12 weeks plus 2 days post bi-lateral mastectomy. It doesn’t feel like 3 months post-surgery. I’m a little disappointed that we are that far out and I’m not any closer to a final conclusion. On the other hand, I suppose this is something not to be rushed. 

Patience has never been one of my better points. 

Tip: If you're the squeamish sort, you should look the other way. :-)

This is a full frontal shot. You can see both incisions, but the one on the left looks like it's pissed off. And it probably is. Both incisions have been cut twice, it's been 7 weeks since the last surgery. On the left, you can see the half-moon shaped incision from the lumpectomy. You can also see the incisions where the nipples were removed. Once the implants are in, both incisions will sit straight across the breast rather than under the breast in the mammary fold.

These are both side views. You can see the small scars below the incision line where the  drainage tubes were.