Feel Yourself Up

When I was a teenager, I started hearing about breast self-examination.  There were pamphlets passed out, with diagrams and simple instructions.  All the girls were told to check themselves monthly, and if they felt something suspicious, to go get things checked out.  Women learn their own bodies over time, just in the day to day experiences of life.  Who better to notice random lumps and other concerning health issues?  Self-examinations are the best way to spot breast cancer, we were told. It is a very feminist thing to do, to rely on yourself, to take care of...yourself.  And there was something empowering about being able to take some minor control over such an awful disease.

I don't remember when mammograms became all the rage, but at some point, women were all told that the best way to find cancer was to have regular mammograms.  Self-exams seemed to fall out of vogue. Women weren't supposed to trust in themselves when it came to health, not any more. Mammograms were it.  Mammograms would save the day, and every single woman would be saved because science.  Of course, now we know that mammograms aren't always accurate, because of things like dense breast tissue and those horrible false positives which strike terror into the bravest hearts. 

In my field of school psychology, one of our mantras is to never rely on just one piece of data to make a decision. I think that's where we went wrong.  Maybe we aren't supposed to rely so much on mammograms that we forget to gather other data.  Perhaps women need to take a more active interest in their own health.

And conduct monthly breast self-examinations.  That's how I found my cancer, two months after a clean mammogram.  I found a lump, and while my initial reaction was to minimize the situation, like most women do, I did not.  Being aware of your body and paying attention to changes may seem kind of boring, but it works.  Breast self-examination saved my life, and that is a fact. 

So feel yourself up, as the saying goes.  I know that some women are embarrassed or self-conscious about their bodies.  That's okay.  You're not doing this in front of anyone and this is not about sexy time.  It's just you and a mirror.  Take control of your health.  It's a small step in the right direction, but it can save your life. 

Now For The Hard Part

Radiation is finished.  I had my last treatment, and none too soon, because my skin was not doing too well.  Essentially your skin receives a deep sunburn, the kind of sunburn one might get from slathering on baby oil and spending the day at the beach.  In spite of my efforts and the special lotion I was given, one side of my chest is a dark, angry red.  This is supposed to go away, eventually, but right now, I really dislike wearing my bra!

Next up...a hysterectomy/oophrectomy.  My risk of ovarian cancer is very high, because of my BRCA1 mutation.  At least with breast cancer, I was able to notice that something was wrong, and investigate further.  Ovarian cancer is often a silent killer; the symptoms are often so vague that a woman doesn't give them a second thought...until it's too late.  I have enough things to worry about, what with a seven year old running amok and such. 

My doctor assures me that this particular surgery will be pretty routine.  Outpatient, even.  Minimal downtime.  I'm still nervous about the whole thing.  There's something about losing your female bits that gives a woman pause, even when the alternative is death.  I can't really think of anything comparable that men have to go through, maybe because they have different plumbing.  But here I am, losing my breasts and my ovaries and my uterus and how am I still a woman after all that?  Do my physical attributes make me who I am? 

I don't think so, most days.  Other days, when I'm feeling less than positive, I'm not always so sure of myself.  This is a hurdle.  Since I was first diagnosed, I've been hearing all of this, but it hasn't really hit me until this week, because I've had time to brood.  I don't do well with down time, I think I've mentioned. 

It's a hurdle.  I'll get over it.  It will just take time. 

And Now For The Radiation

In between the end of my chemo, genetic testing, and getting my mediport taken out, I've had to prepare for the next phase of cancer treatment: radiation.

We followed the directions to the door where a big sign said ONCOLOGY,  me out of breath and needing to sit down.  (I try very hard to walk from the car to wherever, but that usually means that I need to rest a moment afterwards.) No one was behind the reception area when we walked in, but there was a sign-in clipboard up front at the desk.  I started to write my name.

"Who are you here to see?" A nicely dressed older man came from nowhere to stand behind the reception desk. 

"The Radiologist," I huffed, still out of breath. I knew that wasn't the right word, but close enough, I thought.  I was concentrating on trying to write my name and stay on the line, which has become very important to me now that I can't feel the tips of my fingers.

"We do not have radiologists here at this clinic," the man said, his tone patronizing. His name tag indicated that he held the lofty title of "Office Coordinator".  "We have radiation oncologists. Is that who you were needing to see?"

I just stared at him like he was an alien, obviously a foreigner on the planet Cancer. Are you talking to a cancer patient like that?  I had just walked into an office with ONCOLOGY on the door, right?  You're lecturing ME?  Really?      

I nodded. 

"Well, that's the wrong sign in for the radiation oncologist.  His sign-in is over there."  He pointed to a clipboard hidden away behind a sign about health insurance cards, where absolutely nobody without x-ray vision would see it.

I just stared at him.  Really? 

I signed the correct clipboard, and moved to the waiting room to sit down.  My husband looked at me, then reached for my hand. 

"I thought for sure that you were going to punch him."

"I wanted to."

We waited quietly, and I thought about how easy it is to treat people you don't know poorly.  I've been guilty of that a time or two.  But this is different.

The way I see it, if the guy was willing to speak to me like he did, then he's likely upset a number of other patients seeking treatment.  Maybe not intentionally. I'll give him the benefit of that.  He's likely hurt little old ladies or elderly men who can't remember as well as they used to because of chemo, dementia, or other issues, I don't know.   That's not important.  What is important is that those scared, frustrated people be treated with respect, not derision, when they get confused and say the wrong word.

I'll be seeing this guy five days a week for six weeks.  He will know better by the time I am done.   

The First of the Lasts

Three weeks ago was my last chemotherapy treatment. I was supposed to have a one week break, but like Bill Murray said to Chevy Chase in Caddyshack, I wanted to just "cannonball" it. Get it done, out of the way, over with.  Luckily, my blood cells cooperated, and my last chemo treatment went off without a hitch.  The mediport didn't even act up.  It was just like any other day.  Except that the rest of the crowd would be back next Tuesday, and I would not.  Larry and I shook everyone's hand and hugged where appropriate as we left. 

And that was that.

The last chemo.  The first of the lasts that I will be encountering on this cancer journey.  

Next up will be the last radiation treatment, in six or so weeks. 

Then a hysterectomy and oophorectomy, so that I don't have to deal with the possibility of the ovarian cancer that I am at risk for due to the BRCA1 mutation.  Followed by the big surgery--mastectomy and breast reconstruction.  I'm told that they tattoo you some nipples so that you look mostly normal. I'm not sure what normal is any more, but okay.

I'll take a pill for five years to reduce the likelihood of recurrence, since my cancer is estrogen receptive.  I'll periodically have tests to make sure that everything is still okay.  At one point, I'll find myself having the last PET scan, the last MRI, the last blood test.  But then one day, that will be the last of those tests, and I'll be considered cancer free.

But chemo is done, the first of the last, the hardest of my hurdles.  I feel as though I should be finished already, because I never thought I would make it through chemo.  Times when it hurt too much to even drink water, and I wanted to just it to stop.  Times when I was just too tired to get out of bed, even though I really had to pee.  Times when I couldn't button my son's pants because I can't feel the tips of my fingers. Times when I just wanted to quit, to say I was done. 

But I kept going, and got through it. The first of the lasts is done.  Time to climb the next mountain.

picture: free clip art from Google

**while I'm at home and resting, I'm writing.  I just usually forget to hit the 'publish' button, because, cancer.  I'm just now getting around to actually sharing some of what I've written, and trying to read up on some of my favorite blogs.   I hope to catch up some day!

Genes Can Kill You

The report from the genetic counselor came in the mail, and I opened it to see this bright red, with the words "SIGNIFICANT MUTATION IDENTIFIED" emblazoned prominently on the first page.  Since I read comic books as a kid, I immediately thought, "Cool--I can join Professor X and his roving gang of crime fighting mutants!"   Reality hit in the next second, as I read further.  Yes, indeed, I do have the BRCA1 mutation.  Which means that I am at high risk for breast and ovarian cancer, the report read. 


Of course I am at high risk, I thought.  Of course. I already have the cancer that I'm supposed to be at high risk for, I wanted to yell.  But in a way, this news was a relief.  I had been beating myself up since I was diagnosed.  I must have done something, I thought, to be visited by such an aggressive and fast growing cancer.  As far as I knew at the time, I was the only person in my family who had ever had breast cancer.

I must have been exposed to something, I thought.  Maybe I inhaled too much cigarette smoke when I worked as a bartender.  Maybe I should have paid more attention when my previous employers did their asbestos removal, or when they insisted that the bat guano accumulated over the years in the attic above my desk was not an environmental hazard.  Perhaps my alcohol consumption in my twenties was the culprit.  Surely there was something to explain this random arrival of breast cancer in my neck of the gene pool.  I was beating myself up about the entire event, because it was so unexplainable to me. If I had been diagnosed with melanoma or a form of skin cancer, that wouldn't have phased me one bit; I spent hours outside in the sun without any sunscreen for years growing up, just like every other person my age.  If I had been diagnosed with lung cancer, my repeated exposure to second hand smoke would have had me nodding in understanding instead of confusion.

Having the "random" aspect of my diagnosis eliminated meant that I had not done any particular thing to merit a tumor.  There was a clear genetic reason for my situation; a mutation passed to me from my father's side of the family.  And since I'm also at high risk for ovarian cancer,  due to the same gene, now I have the knowledge I need to make some decisions.  Knowledge is power.

My oncologist read the report and recommended a hysterectomy, since one of my ovaries lit up on the last PET scan that I had.  He actually wanted me to have this done immediately.  I pictured another major surgery invading my life, with another six weeks of recovery on top of the planned mastectomy/reconstruction I had planned.  I was also concerned that I hadn't been visited by the menopause fairy, with her random hot flashes and other goodies.  Would that affect anything?

I visited with my Ob-Gyn, who never seems to panic or get upset, no matter what.  BRCA1, I said.  He didn't even bat an eye.  Outpatient surgery, he said.  Laproscopic.  Apparently there's also a robot assistant, which intrigued the nerd in my heart of hearts.  Wait until after radiation is done, he recommended. I left his office feeling less anxious than normal.

I won't be finished after all that, according to the genetic report.  I'll also have to pay attention to the possibility that I may acquire pancreatic cancer and colon cancer along the way as I age.  But those risks are not as significant as the first two, and are manageable on my anxiety scale. I then got on the Facebook Family messaging system and contacted as many of my cousins as I could, to spread the word.  After all, if two of seven siblings had the gene, odds were good that others might have passed it on.  I know that at least one of my cousins was at the genetic counselor within a week, getting tested. 

Knowledge is power.