Emotional Energy

Naturally, one of the things I've heard time and again with regards to finding my way through cancer is to avoid stress. Easier said than done, right? Let us count the stress...in no particular order.

First, there's the stress of my job. I'm on leave. Paid leave initially, which is a true blessing, but my employer won't wait forever for me to find my way back.  I work in a fast-paced manic environment. They'll be moving on to the next thing before you can say "Triple Negative Breast Cancer".  I will be yesterday's news. So 21 seconds ago.

Then, there's the stress of having a potentially lethal illness. It's not just being sick that's an issue. It's the zillion little things that go along with it. The never-ending doctor appointments. The ridiculous number of prescriptions that fill my medicine cabinet. Trying to figure out what to eat and when. Inability to sleep. Anti-bacterial soap and all the crap you need for chemo like ice packs and IV ports.

There's all the life stuff that doesn't wait for my cancer to be cured. Like paying bills, getting the cat to the vet, supporting my college student, unloading the dishwasher, filing insurance claims, etc. Folks say to me "you should just focus on getting well". A kind but very unreasonable thought. Life doesn't stop just because you have cancer.

Then there's all the decisions that must be made. That's probably the most stressful for me. Decisions around every little life thing - from treatment options to grocery shopping to managing personal relationships. I am a thinker. I have to reason my way through things and I don't necessarily do it on anyone's time table except my own. It can take 10 minutes or it can take months. Don't rush me. It stresses me.

All this takes emotional energy. At a time when I have none. Zip. People tell me I'm a very strong person. Personally, I think I'm a coward and a wimp. My bank account of emotional energy is depleted, yet the questions and decisions just keep on coming.

Wonder if they can infuse a little emotional energy when they're infusing the poison into my body this week that will supposedly help prevent my cancer from invading my brain or my bones or my liver?

I'll ask. After all, if you don't ask, the answer is always no.

Preparing for Chemo

Preparing for chemo is utterly exhausting!  Oh, the shopping that must be done! And I must clean, run errands, and shuffle things around in case I'm too zonked to do much for the next 16 weeks.

Physically, I'm not expecting to be debilitated from chemo. In fact, I'm expecting to feel pretty good except maybe a little tired. Emotionally, chemo is already kicking my ass. But the good news is that my truly obsessive fear has moved from the chemo to the mastectomy and reconstruction. The very idea of slowly filling my soon-to-be vacant boobs with saline to stretch the skin to accommodate implants seems torturous to me. But back to the chemo...one scary thing at a time.

After attending Chemo School last week, I came home with a pretty long shopping list. Not to mention a list of all the things I can't do while on chemo. Like change the kitty box or pick up after my pooch. Whhaat? Do they think I have a manservant following me around to pick up my dog poop??  And this is North Raleigh. They toss your butt in jail for not scooping here!  Oh dear!  I'll be on the front page of The Slammer in no time! And worst of all...no pedicures during chemo. Crap.

You have to have the most ridiculous things on hand to forge into chemo. Like the FIVE prescriptions given to control the nausea. Really?  Five? Lemon Drops. Must have lemon drops in my bag to counteract the metallic taste that chemo sometimes dishes up. Electric razor - just in case I'm inclined to slice my skin with a regular razor while shaving during chemo. (Doesn't that seem counter intuitive? To have an electric razor on hand with no hair to shave?) And don't even get me started on the wig shopping!  All I can say is, thank goodness for my buddies Wilda and Laura for holding my hand through the tears and the vanity that goes along with wig shopping!

I'm a planner. I like to be prepared. Usually, over-prepared, but there are lots of "you never knows" and "just in cases". I have tons of stuff, likely way more than I'll need. Boxes of saltine crackers, white rice, tons of chicken soup in the freezer. Just in case.

I think I'm ready. Pantry is stocked. Meds are on hand. Wig waiting in the closet.

Bring it on.

Cart before the horse

My cancer journey has been a disjointed one, I've learned. I long suspected that I had not done things in the right order, but between the lightening speed from diagnosis to surgery to my own fog surrounding the experience, I was ignorant.

I had a lumpectomy on March 27. Now, I am planning a bi-lateral mastectomy in the fall. Does that make any sense at all? Why in the world would I have one surgery to cut out the tumor and then another to whack off the boobs? Isn't there an unnecessary surgery in there somewhere?

Of course there is!

My Medical Oncologist ranted yesterday for a good 10 minutes about this very subject. Once diagnosed by the radiologist, I should have bypassed the surgeon and gone straight to the oncologist. But the radiologist referred me to the surgeon...so off I went.

The Radiologist goofed. He should have referred me to a Medical Oncologist instead of a surgeon. Oops.

The greater point here is - if heaven forbid YOU ever find yourself in this situation - see your Oncologist before passing GO. First. Before hitting the operating room. Even while you're trying to figure out why this brick has fallen from the sky...chat with an Oncologist.

My Oncologist says a paradigm shift is needed. This is the way it's always been done, but even medical providers need to think before they act. I suppose that's part of the reasoning behind the old saying "You are your own best advocate." But what did I know? I was a puddle on the floor. Scurrying around to fix this damn mess before it mucked up my life too much or worse...killed me.

The Oncologist job is to put two and two together. To look at the big picture and recommend a path. To say "hmmm....the biopsy says you are triple negative and the genetic testing says you have a gene mutation. Perhaps we should just whack 'em off instead of digging out a pea sized tumor to be sure this little problem never bothers you again."

Instead....I will have TWO breast surgeries instead of ONE.

So....repeat after me:  If I am ever diagnosed with a cancer (or possible cancer), I will engage a Medical Oncologist before consenting to other treatment so that I have someone who is really smart about cancer putting together the puzzle pieces in a way that saves my life AND makes sense.

The problem with Cancer....

The problem with cancer is that nothing hurts. I know that's not true for all cancer patients, but it's true for me.

It's not true after a procedure or surgery. Then, everything hurts. But unless someone with a needle or scalpel gets hold of me, nothing hurts. They make it hurt.

There is no indication I have cancer that I can see or feel. None. I have to take it completely on faith. I have to trust. Trust the Radiologist that he knows what he sees on the films. Trust the breast surgeon that she knows what she is scooping out of my body. Trust the oncologist to read the pathology reports and interpret the blood work.

These are highly educated dedicated people. They are specialists in their field. They know what they are doing. I have faith in them.

The problem with this sort of faith and trust in my doctors is that I find myself second guessing them. Are you SURE? Are you 100% absolutely positive I have cancer? Because nothing hurts.

Nothing hurts, there are no lesions, no outward evidence that anything is wrong with me. How can I possibly be sick when nothing hurts, there's no fever, no broken bones, nothing.

Occasionally, I find myself wondering if this is all really happening to me. Since I have no real evidence that I can point toward...am I imagining this? Is it real?

I usually take a friend with me to my many doctor appointments. I want someone else to hear the same thing I'm hearing. Just so I can be sure I'm not imagining this.

Cause...sometimes...it doesn't seem real.

Choo Choo

Having cancer is like riding a freight train. You hop on and hang on for dear life. Literally. Else, the train will mow you down. It moves at the speed of light.

This cancer thing has happened really really fast. Head spinningly fast. I vaguely remember having a life. A good one. Now, it all revolves around cancer and I can't seem to focus on anything else.

I often feel I'm on a train that doesn't slow or stop on request. Or at all. I don't schedule my appointments or surgeries. They do. No one asks "when would you like to come in to get started on that chemo"? Or "Is next Monday convenient for your mastectomy"? Instead, they call and TELL me where to be and when.

I suppose doctors assume that you'll jump and obey when you have a serious illness. And they're right. Any where, any time. Just tell me when you want me there, and I'll be there. Ten minutes early. With a friend in tow. Or two.

I have control over very few things these days. Patients like me enjoy thinking they are proactive and in control over what happens and when. But really we're not.

I have input into my treatment. I guess I do, in a way. But if my oncologist tells me I need this sort of chemo treatment followed by this, this, and this....my likely response will be "OK". Whatever you say.

I'm fairly well educated on this thing. I've read about it until I can't read about it any more. So I already have a pretty good idea of which treatment protocols are on the table. By the time a doctor makes a recommendation, I know what the options are. The option recommended makes perfect sense. Maybe that's why I'm so quick on my "OKs". I already know.

Give me a head with hair...

Give me a head with hair, long beautiful hair
Shining, gleaming, streaming, flaxen, waxen
Give me down to there, hair, shoulder length or longer
Here baby, there momma, everywhere, daddy daddy..

Got hair on my brain today. Ha!

Literally, got hair on my head today. But not for long. I'm told that one day soon, my head will start to tingle and then it'll all come falling out. I've gotten some good advice for when this trauma occurs...

Buzz cut it a few days before. Losing a little hair is less upsetting than losing a lot of long hair. Have a head shaving party. Go out of town so that it doesn't fall out in my own bathroom and I have to endure the additional trauma of crawling around to clean it up. Try on wigs before losing the hair.

One of my best girl buddies and I are having lunch today. Then, we're going wig shopping.

When I think of wigs, I think of my mother's wigs, which were stiff and artificial; sorta like a dead person's hair. Don't know where I got the dead person thing, maybe it's my subconscious. <grin> Still, wigs remind me of old ladies.

And just to make me feel as old as grandma, I also need to buy some nightcaps to sleep in. To cover my cold bald head in the night. My grannie wore one of those. Except it was silky and had pretty lace around the edge. I want mine to be cotton and comfortable. And not come off.

Here' the big question though: Does it fall out everywhere? What a blessing that would be. I can't tell you how much money I've spent on waxing over the years. Except, it's a bit of a cruel joke. And the joke's on me.

Skinny on the Chemo

I finally have the skinny on the chemo. It took a long time it seems to get an answer, and at this point I have only half the picture. But it's enough to make me feel like there is a plan in play and I'm not hanging in cancer limbo.

I have a "Breast Health Navigator", Dawn, who works for my oncologist. Her job is to navigate me through all the stuff, appointments, questions, various docs, and minute details that make up a cancer treatment plan. She's wonderful. I'm really appreciating having a single point of contact instead of a team of people with no one seemingly in charge.

Dawn made a very important point yesterday while we discussed the plan. I was asking questions about how truly wicked this course of chemo would be. She turned the conversation around on me and pointed out the obvious.

It's less about how crappy I'm going to feel - or look - during chemo. What's a few minutes of puking over the toilet every couple of weeks? Or a little fatigue or even a few sores in my mouth or fingernails that fall out or a shiny bald head. In comparison, those things are totally insignificant.

What's really important is that the chemo will save my life.

They always tell you to think positively about cancer. That's especially hard to do early in the diagnosis, I've read. I've certainly found that to be true. I felt just a little bit chided when Dawn made this very important point. But after thinking about it a few minutes, I realized how very right she is.

What's a few days of feeling puny when I get to LIVE? Would I rather be dead?

Hell no.

Point taken.

Triple Negative Breast Cancer

Since my oncologist visit Monday, I've been furiously educating myself on the ins and outs of Triple Negative Breast Cancer (TNBC). Most of what I read is scary but it confirms most everything the doctor discussed. I've known since early on in this process that I was triple negative, but I didn't really appreciate what that meant until Monday.

I am told that I have a 30% chance of recurrence WITHOUT chemo. With chemo, that drops to 15%. Cuts it in half. Still, 15% seems like a lot of risk. That's 15 out of every 100 people with TNBS. Put like that, it seems less scary. Don't know why.

The issue with the chemo is that it's wicked wicked. It's the worst kind. Or maybe the doc just told me that to set my expectations. Probably not. Chemo is the one thing that has most intimidated me since learning I have breast cancer. It's my greatest fear. The idea of chemo is completely horrifying to me.

The good news is that I don't have any lymph node involvement. No cancer lurking there. That's good. Except this type of cancer is very sneaky. It is carried throughout the body to other places without ever setting up housekeeping in the nodes. These are called "floaters". So when a pathologist examines the nodes, they see nothing. But that doesn't mean cancer cells have not wandered to other places. Sneaky little bastards, they are.

The bad news on TNBC is it is a very aggressive cancer. Chemo is the only thing we have to fight it. There are no hormone therapies available, though I've read that research into this type of cancer is in high gear. Hurry it up, already!

Since TNBC is so aggressive and the chemo is so awful, I've briefly considered not doing the chemo, ditching the probable misery in favor of quality of life. The problem here is you can't go back and re-do. Two or three years from now when the cancer is in my brain or my spine, I won't be able to go back and get that chemo. That would be a serious lost opportunity.

Fu*k the nausea, mouth sores, fatigue, lack of taste, baldness, and rashes. I have only one shot at kicking this beast to the curb. If I don't take it, I've not only let myself down, but I've let down everyone who loves me as well. Not gonna do that.

It's a new day

It's a new day.

I wish I felt as positive as that statement would indicate. But I'm getting there. I've had some good sleep, good drugs, and as usual...I feel better the next day about whatever crisis is in my path.

So, had a tough chat with my medical oncologist yesterday. Even she admitted it was a hard discussion. Instead of the more positive and upbeat conversation I was hoping for, we had to talk about the downside of being triple negative for hormone receptors and positive for BRCA1. You would think triple negative would be a good thing. Not. And who knew a simple blood test to analyze my lousy genes would be so life changing?

Triple negative breast cancer means my offending tumor is negative for the three receptors that fuel most breast cancers. This type of cancer is extremely aggressive and more likely to recur and metastasize than other types of breast cancer. It's favorite hiding places include the brain and liver. The good news is that it responds very well to chemotherapy; but it has to be the really wicked type of chemo that kicks your ass to hell and back.

BRCA1 is a gene that produces a protein that increases a woman's risk of breast and ovarian cancer. In other words, I inherited my breast cancer. Thanks, Mom and Dad.

I don't entirely understand how these things converge to make me so special, but they do. My medical oncologist yesterday was very up front about the seriousness of the situation. My first thought was she was perhaps overstating the situation. But doctors aren't known for the dramatic and now I think she was simply trying to get me to listen to what she was saying. She succeeded.

Next steps:

1. Doc will put my unique situation before a conference of other breast cancer docs to gain a consensus on a treatment plan. That's like getting 3 or 4 or 5 second opinions. A good thing.

2. We'll do testing of my liver and heart to be sure they are up to the challenge of chemo. Guess I need to lay off the booze. :-)

My prediction: A kick-ass regime of chemo (once every 2 or 3 weeks for 6 or 8 sessions). A bi-lateral mastectomy and reconstruction. A lifetime of second guessing every little ache and pain - better known as the fear of recurrence.

The inference of yesterday's conversation is that I will likely die from cancer. Not from this cancer, and it will be well on down the road of life. But the odds are very good my cancer will show up in some other place - like an organ - and that will be fatal.

I don't mean to sound so fatalistic and negative. But I like knowing what to expect, even if it's 15 or 20 years from now. And of course, I could get hit by a bus tomorrow afternoon and defy all the odds. But it is what it is, and knowing what it is makes it easier to deal with.

I'm ok with it. What I'm not ok with is losing my hair and eyebrows. People without eyebrows look like freaks. Pass the makeup brushes...

Staying positive is a chore

So what happens when you are determined to stay positive, but the bricks just keep falling?

One of my worst mistakes throughout my cancer crisis is assuming that good news is just around the corner. That things will get easier. That I've heard the worst of the bad news and there is no where to go from here but up.

I feel stupid every time it happens. How is it that an intelligent well-educated woman can just assume that cancer is a predictable path? That the next doctor visit will be all good news?

I keep expecting to hear "Congratulations! You've come through the worst of it and we have just a little ways to go before you can resume your life. Just a few more cells to kill. It'll all be over soon."

How absurd. How ridiculously child-like.

Sadly, cancer isn't finished with me yet. It's going to continue poking at me until it sucks not only the life out of me, but the hope as well.

Hope springs eternal. What a stupid saying. Positively stupid.

What is that old saying? Hope never abandons you. You abandon hope.

Hope costs nothing, right? I wish the same could be said for healthcare.

At last: Self pity

It's taken a while to set in. I've read that many women with a breast cancer diagnosis sink into depression, self-pity, and lots of "why me?" moans.

I'm generally not prone to self pity. And I have a killer self survival instinct. Life has kicked me in the ass plenty. From unruly teenagers, unfaithful husbands, two simultaneously terminally ill parents, to job layoffs. I've not been immune to life's little bumps. But are you kidding me? After all this, now I have cancer?

What's going on here? Am I not living right? I try to live a good life, be good to others, consider how my actions impact those around me, give my only child every thing I have to give. Financially and otherwise. I rescue homeless pets, love my neighbors, love lost children, and go to church. So what gives? Why me?

I suppose the real question should be "why not me"? Why should I escape a disease that hits millions of women every year. Do they deserve to have breast cancer? Of course not. No more than I do.

Although I've had my "why me" moments, they never last long. I'm having one this morning in fact, but I know the fog will have lifted by the afternoon. I have an appointment with a new doctor today, someone I have not seen before. A medical oncologist, who will tell me how the remainder of my treatment is going to muck up my life in the next few months. I dread it terribly. It scares me. I am one week out from a hysterectomy that kicked my ass in ways I did not expect. Now, I have to talk with yet another doctor about a treatment plan that will be painful, scary, and likely leave me more exhausted than I've ever been in my life. Not to mention bald.

Yay. Can't wait.

In spite of all this darkness, I had a beautiful "ah ha" moment on Saturday night. I was out to dinner with my cousin - we had been seated in the restaurant's outdoor patio. It was a beautiful spring evening, I was dining with one of my favorite people on earth, and in front of me sat one of the best salads in town with two yummy crabcakes.

I love moments like that. Moments when I stop the chaos in my head long enough to recognize the beauty of the moment. I remember thinking how incredibly lucky I was to be sitting here in that wonderful moment. I have breast cancer, had two emotionally traumatic surgeries in the last two weeks, and have weeks of treatment ahead of me. How lucky am I to be alive? How lucky am I to be sitting there in that moment?

My illness is not going to kill me. Not even close. It may make me miserable, but it isn't going to be what kills me. Life will have to toss something else my way for that.

Hysterectomy Hell

I thought this would be a snap. I kept hearing things like "this isn't your mother's hysterectomy" and "daVinci robotic makes your hysterectomy so easy...". Not true. Be it 1980 or 2012, hysterectomies suck.

No matter, someone has snipped and sucked out my uterus, Fallopian tubes, and ovaries. They've carved out old scar tissue and unstuck the endometriosis. Pathology shows no cancer. WooHoo! A benign tumor means that I get to keep the girls! That's the BEST part!

Granted, each day is a little bit easier. But starting Monday in the recovery room until dinner time Thursday night...it's been a long road. The worst part has been getting in front of the pain. Next worst part has been accepting that I have to take things slow and easy and I have to be willing to let people help me. Boredom is quickly becoming an issue.

I hate being dependent on others. I hate feeling like a burden. I'm extremely fortunate to have so many people in my life who are willing to help me like this. But I hate that they have to do it.

Yea, it sucked. But - at least this portion of it - is all downhill from here.

Next up: Chemo. I'm betting the chemo won't be as bad as the hysterectomy. Let's hope I'm right!

Cancer changes everything

Cancer changes everything.

It changes your perspective on the smallest of things. I used to be practically OCD about my hardwood floors. Now, I have started naming the dust bunnies that line the floorboard. They grow magically.

I'm not good about asking for help or at accepting it. Recently, I had to ask for help in walking my dog. My friend was happy to do it and thrilled I asked. But it took a lot for me to pick up the phone to ask.

Cancer changes things I can't even describe or define.

When I no longer have cancer, will everything be as it was? No.

What will my world look like when the dust settles? I've no idea.

I will be grateful for my health. And grateful to those who helped me when I needed help.

Beyond that, I will need to pick up the pieces to discover how they fit.

They lie

If a physician or nurse tells you something won't hurt "much", run. Run. Because they are lying through their teeth.

My breast surgeon did a biopsy several weeks ago. She said it wouldn't hurt. That other women tell her it's just a little sting, as though to guilt me from the onset in case I whined that she was hurting me.

We did a vacuum assisted biopsy using a needle about the width of a writing pen. Awkwardly, you are asked to lay face down on a table with a hole in the center. Your you-know-what goes in the hole. A mammogram machine comes up from below and grabs your you-know-what in a vice grip.

The plan was to numb the top skin area. The needle contained anesthetic that would numb the rest of the tissue as it drilled down to the tumor. This was the biggest lie of all. Hurt like hell. She kept saying "most women don't have a problem with this". Apparently, I'm not like "most women".

And when they did the sentinal node injection of dye just before the lumpectomy...another huge fat lie. They said it would burn "a little". I should have known something was up when one of the nurses leaned over me and held down both arms. I remember kicking my feet and BEGGING them to stop, just like a little girl. It was over quickly, but holy cow...it hurt more than the biopsy!

I generally have a high tolerance for pain. But I'm finding that when something is painful, its not just the pain that's problematic. It's the fear. Pain begets fear....fear of more pain or worse...fear of the unknown.

From now on, when someone tells me something won't hurt "much", I'm going to assume they are a lying pig. I will become a liar myself and say "I don't deal with pain very well, can I have something before you do that?"

That's it. Beat 'em at their own game.

Not my job

I've discovered part of the frustration in having a complex illness is all the moving parts, ie docs. You have a doc for this and a doc for that. One to slice and dice the bad stuff, one to zap the remaining bad stuff, one to drug the bad stuff, one to ex-ray the bad stuff, etc.

It appears none of them talk to one another. I have to tell my entire story over and over to medical providers. It's not lost on me that I WORK for a company that develops and sells electronic health record software. So much for a connected community of healthcare, apparently my collection of docs haven't gotten the memo yet.

And the worst part of all...you have to carefully consider who you are talking with before you ask a question. For example, in a post-op visit with my breast surgeon today, I asked questions about the follow up treatments. Her response? I'm not an oncologist. Talk to your oncologist.

Ok. So, which one? The Gynecological Oncologist? The Radiological Oncologist? The Medical Oncologist?

And if I have a question about my little ovary problem, do I talk with the Gynecological Oncologist or the plain 'ole Gynecologist? As it happens, they are close friends. Maybe we could all have lunch one day and I can finally get some answers.

Doctors just shouldn't tell a patient to "ask someone else" when they have a question. That's poor customer service.

What happened to my life??

Here's what my day looked like:

1. Post-op visit with surgeon

2. Chat with insurance company

3. Make appointment for CT Scan

4. Chat with GYN Oncologist about next week's surgery

5. Pre-op interview with hospital

6. Make appointment with Medical Oncologist about chemo

7. Chat with Radiological Oncologist about radiation treatments

8. Email HR to be sure I'll still have a job when this is over

And today is just Monday! WTF happened to my LIFE? It disappeared! Cancer has sucked it up. I'll just consider this the price I pay for ensuring I will HAVE a life when it's all over!

Really looking forward to getting back to the mundane. Like working 8-10 hours a day. Or scurrying around to grocery stores, mall, farmer's market. Or heading to the mountains to visit my boy.

It's the small things in life that MAKE a life.

Take 'em or leave 'em

I try to be a logical, rational decision maker. I reason my way through an issue, sometimes drawing a timeline or decision tree on paper to help me visualize a logical conclusion. It is important to me to make good decisions and I can drive myself nuts trying to do so.

It's hard to make a logical decision with breast cancer. The question before us is to have a bilateral mastectomy or to do the chemo and rad, get mammograms every three months, and hope for the best.

I'm lucky enough to carry a gene that gifts me with a possibility of up to 75% (depending on what you read...) of cancer recurrence. That would seem to tip the scales, no?

On the other side of the line, I also have a tumor on my ovary, so having a hysterectomy soon. If I have a mastectomy AND a hysterectomy, they'll be cutting out every thing that makes me a girl. Or will they?

What makes us girls? I'm smart enough to know it's more than boobs and ovaries, and those things are just the physical. If only the matter were so simple, though.

You know what scares me about all this? It's not the fact that my 42DDs will be no more or that I won't be able to have more children. I don't want any more children, having the first one completely cured me.

It's the anticipation of the surgeries and recoveries. Really? Am I really that much of a coward that I am more worried about a little discomfort than of learning to live with a flat chest? 'Fraid so.

Dig a little deeper. The real fear? It's the fear of not finding the courage to do this. I'm afraid I really am a coward.

A friend pointed out the upside the other day....if I have reconstruction (yet ANOTHER decision that must be made), I can request perky 20-something boobs rather than the tried and true ones I have now.

Now there's a thought...