Just When I Needed to Focus

That’s always how it goes, isn’t it.  Briefly, I managed to ignore the new breast cancer screening guidelines.  I’ve even known for years that screening mammograms offer questionable benefits.  It’s funny how perspective changes, though.  If these guidelines had been released a year ago they would have made perfect sense to me.  Now they do not.

Really, these guidelines don’t even apply to me.  Mammograms aren’t exactly necessary after a bilateral mastectomy.  Self breast exams have changed to chest wall exams.  But.  To argue that self-exams aren’t worth it?  I just can’t understand that.  I understand the epidemiological statistics but I don’t understand how they conclude there aren’t ANY benefits to self-exams.  None, really? Just thinking about it in the context of my own diagnosis:

I was never good about doing self exams, and I found my lump in the shower.  Had I not forgotten a washcloth that day, there’s no telling when I would have found it.  Had I done regular self-exams, I probably would have found it the following week when I did my monthly exam.  Without a regular self-exam and without forgetting my washcloth?  My tumor was poorly differentiated, fast growing, and triple negative – the most aggressive type.

And then I realized – my real concern here isn’t the guidelines at all – it’s finally allowing myself to think about what could have happened to me.  What could still happen to me.  Cancer sucks.  Cancer is scary.  Cancer can go undetected until it’s too late.  What if my tumor had been deeper and I hadn’t been able to feel it.  How big would it have gotten and how quickly would it have spread?  How bad would it have been before I found it?

I’m also worried about what this could mean for insurance coverage for mammography.  A lot of what I read today said that we need a test with better specificity – a test that identifies cancer without the false-positives associated with mammography.  I agree – that’d be great.  But we don’t have that test!  Unfortunately, with health care reform legislation working it’s way through Congress, we can expect that coverage decisions will be made based upon the findings of this Task Force – for breast cancer, women’s health, men’s health, cardiovascular disease…

Oh yes, about cardiovascular disease.  Currently, most insurance companies essentially rely on Medicare to determine what they will cover for cardiac rehabilitation.  This includes diagnosis codes (many insurance companies do not yet cover cardiac rehab after valve replacements, for instance, though I believe Medicare recently started covering it) as well as components of the cardiac rehab program.  If insurance plans typically do not reimburse for the services of nutritionists or counselors to provide dietary and stress management counseling, facilities cannot afford to include those components in their programs.

This can easily be tied back to mammography.  It is forseable that a national health care plan would no longer cover screening mammograms for women under 50.  That could result in private companies not covering them, either.  So, the guidelines put forth by the Panel said that mammography should be decided on a case-by-case basis between the ages of 40 and 49.  What would it take to get those mammograms covered by insurance?

Furthermore, I can’t help but wonder what it would have meant for me if these recommendations had come out a few years ago.  Would I have gotten the testing I needed when I presented with my lump, or would I have been pushed aside and told I was too young to have breast cancer and just to monitor the lump for changes?  What if 6 months later was too late for me?  A fast-growing tumor. . . maybe it could have spread by then.  At the very least, it’s likely it would have made it to my lymph system.  I would have gone from Stage I with a (somewhat acceptable) prognosis to Stage II with a much less-happy prognosis.

So many issues upon which to dwell…

 

A Weekend of Working

To follow weeks of working.  It’s that time in the semester when everything has gone completely insane and I feel like I felt in that first triathlon – unable to breathe, unable to swim, constantly changing positions trying desperately to take a deep breath and calm the fvck down.  Things are crazy right now, and I’d kill for a deep breath.

People keep asking if I’m starting to feel better and I really can’t tell.  I don’t feel worse, so we’ll go with that for now.  The overwhelming fatigue still hits though now it seems relegated to the end of the week.  Maybe that means that my body is recovering from chemo and suffering from grad school all at the same time.

Thanks to all this work I really don’t have much to blog about.  One day I’ll tell you about my return to running, my low fat diet, and trying to woo new graduate students while trying to remember why I’m doing this at all.  For now, I have to get back to work.

 

Moving Forward

Active treatment is officially finished – the last of the toxins were pumped in on Friday and the last Neulasta shot and fluids were Monday.   Last week was a very emotional week for me and I was really a bit shocked by my reaction.  It didn’t help that it was one of my most stressful weeks of the semester, school-wise (you know, I keep thinking each week will be less stressful but that doesn’t seem to be happening), and then I had the emotional last-chemo experience on top of it.

One thing that was absolutely necessary, to me, was coming up with an appropriate gift for the chemo nurses.  These are the women who literally held my hand when I was scared (of shots), talked me through some difficulties with some overbearing, well-meaning friends, or took their time to just plain chat with me when I was there for hours upon hours.  They mean the world to me and I’m really going to miss them.  This, I think, was a huge contributor to my emotional week.  For the gifts, I finally settled on a letter, a cd, and a necklace.  I wrote the letter during my third treatment, actually, because for some reason that day, all these thoughts came to me that I really wanted to share with them.  The letter was short and turned out to be the exact right length to fit on the back side of the jewel case insert I made for the cd.   The cd was composed of songs that I’m currently obsessing over and that I thought were appropriate for the occasion.  I don’t know if they’ll actually like the music – somehow we never talked about that – but I chose songs that are meaningful to me and I hope that came through.  I made the necklaces myself, also.  They aren’t fancy or anything, just black cording with silver charms – some are awareness ribbons (no specific awareness, just silver) and some are the skull and cross-bones.  Those were reserved for the nurses with the best sense of humor, though all of nurses really are great about bringing lightness and humor to a crappy situation.

Now that treatment is over and my gifts are distributed, it’s time to move on from “cancer fighter” to “cancer survivor” which is a very strange topic to me, and I don’t know that I like the term “survivor” really.  I’ve read a little bit about this transition so I know that I’m not alone in having trouble with it, but that’s not all that comforting.  It’s just flat out hard to go from actively treating and trying to knock out cancer cells, to being a “normal” person going about normal activities and not continuously poisoning myself.  The great thing is that as exhausted as I am now, I know it won’t be knocked back down the second I start feeling better.  The bad thing is that it isn’t possible to know for sure that the cancer is gone and I’m sitting here with a particularly aggressive, dangerous form, hoping chemo worked.  How, exactly, am I supposed to wrap my brain around that?

So, I’ll try to return to my normal daily life as a grad student.  I go to class, I work on IRB applications, I frantically try to run stats to pull a conference abstract together in two days.  This is the life of a PhD student – a life without chemo but with plenty of other stressors.  Now, hopefully, this can transition from a blog about cancer to a blog about re-integrating, reclaiming, and moving forward.

 

This Week’s “Fun” Observations

– One good thing about being bald: when a hot flash hits, removing the hat is like opening a vent.  Woosh!  Heat gone.

– Hot flashes do not make for good sleeping, and somehow the vent is less effective at 3 AM

– Dinner does not equal bed, yet I seem to use these words interchangeably.  This, my friends, is chemo brain.

– Regardless, somehow I can still spell phosphorylation.

– Reading other runners’ race reports makes for one jealous out-of-commission runner

And, some small blessings:

– Canceled lab meetings = more study time

– Auditing courses = being able to skip totally irrelevant lectures

– Auditing courses also = not having to take the exam, opening up more study time for other classes.

Then, the large blessing:
Last Chemo on Friday!!

But before that…metabolic exam on Thursday…

 

A Mind Gone Wild

Nothing has been quite as I expected it to be in the last few months.  That’s not a surprise – who would expect things to go as planned in the middle of surgery and chemo?

Please allow me to introduce myself.  My name is Emily, and I have chronically high expectations.  It’s not that my expectations are unrealistic, really, but they are high.  That’s how I came to be a PhD student.  So really, I should say that I have high expectations for myself.  I was raised to believe that I can do whatever I set my mind too, but my aunt would tell you that I’ve had that attitude from day one, that I was a brave toddler.  A toddler who would make herself spend the night away from  her parents because  that same aunt had invited me to spend the night with her, even though I was terrified of being away from them.  She says that’s how I managed to move hundreds of miles away from home, twice, and take on a bilateral mastectomy and chemotherapy in the first place.

I would tell you I do those things because that’s what I’m supposed to do.  Some other things I had planned – expected – to do because I was supposed to?

Get married right out of college.
Own a house by age 27.
Have a baby by age 28.

Those things didn’t happen.  Not a single one of them.  I’m not married – I’m not with the same person I was with right out of college.  I have a boyfriend whom I love dearly and I do think we’ll get married some day.  As it turns out, even though marriage occured some time ago on my timeline, it wasn’t right then and it isn’t right now and that’s ok.  Not owning a house is ok, too.

But babies.  If you listen really carefully, you can hear my heart breaking.  Hang on, completing this post is going to require coffee.

As long as I can remember, I’ve wanted to be a mom more than anything else in the world.  I feel so foolish to have pushed it off for school.  It felt like I had time.  So foolish.  No, I wouldn’t want to go through all of this and have a small child at the same time.  As selfish as it is, though, the thought that I might never have children hurts.  It really truly physically hurts.  Adoption would be fine – more than fine, really.  Cancer survivors do manage to adopt.  The feeling that it won’t happen for me, though, is one I can’t get rid of.  I hate feeling this way and what’s worse, I keep beating myself down because it is selfish. But I know I could be a good mom.

And another thing.  These past few months, I’ve often read that other women have a really hard time with all of the pink.  The breast cancer merchandise, the constant awareness campaigns, and the cures that aren’t.  Up until this point that stuff hasn’t bothered me.  In the past week, though, it’s getting to me.  At first I thought it was just the reading wearing off on me, but it isn’t.  I can’t escape cancer.

Really, of course I can’t!  It’s part of me.  I’m still in chemo, I have no breasts for crying out loud.  Of course I can’t escape it.

Earlier today I read an account of a breast cancer awareness event attended by the Governor of New Jersey (chemo brain, his name escapes me).  My first instinct was to groan and roll my eyes.  How awful is that?  Quite honestly, those events feel like lip service to me.  What do they accomplish, really?  Do we really think people aren’t aware that breast cancer is a problem?  Now – if we were talking about awareness that breast cancer can happen to women in their 20s, I’d be on board.   That isn’t what we’re talking about though.  Come to think of it, maybe that’s part of the problem.  Maybe I’m upset that the only things I’ve seen this month – Breast Cancer Awareness Month – about breast cancer in young women have come from the Young Survival Coalition.  I’ve seen these things on their message boards but I haven’t seen a single commercial, a single sign, a single news article.  I’m sure they are out there and I just haven’t seen them.

But if I haven’t seen them…how many other people haven’t, either?

So. I don’t really know where I was going with this except…this is hard.  This isn’t what I expected.  I expected it to be hard but not in this way.  There are so many things you just don’t think about, even when you’re going through it.  They just hit, all of a sudden.  These things really hit me today. They’ve been nagging, but today they hit.

I need my body back.  When I get my body back, I know I can get my mind back.  It just isn’t possible to separate the two and as I lost my body little by little, I lost my mind. Not in a crazy kind of way, but in the sense that I don’t feel like myself.

Much like anything else in these past few months, my blog posts have never gone like I expected them too, either.  It’s funny how that works out.