Another Brick in the Wall

Yet another follow-up appointment with the oncology office today.  A good appointment, however, as we were able to get copies of the latest test results.  I now have proof in my hot little hands that my tumor markers are really low, and my bone scan shows no sign of metastatic disease or arthritis.  We decided to go back to the Tamoxifen, too.  I hate Tami, I really do, but I understand the necessity of hormone therapy and know I have to do this.

A very wonderful day indeed!

Except...I found myself crying uncontrollably.  Like last night at dinner - the tears just poured down my face.  And I can't stop, no matter how hard I try.  The sadness and exhaustion are overwhelming and undermining and I feel trapped at the bottom of a deep, dark well with no way to climb out.

I mention this to my NP who kindly points out that I look utterly exhausted.  She asks if I'm still running; I explain how intense this last semester has been, which has cut into any time for running / yoga / exercise (so no, I'm not running...except in circles, it seems).  We talk about everything that has happened in the last year, and she suggests that perhaps I've hit "the wall".  "You had so much to keep you occupied and focused when you were in treatment," she says, "As soon as you finish treatment you start the Semester from Hell.  And now you're done.  You need a chance to recover."

I recognize that I'm depressed.  Maybe not quite clinically depressed, or a Major Depressive Episode (hasn't been two months yet), but it's there.  Our NP even indicates that some of my pain could be attributed to the physical side effects of depression.  Who knows.  Who cares??  I just want a nap.

It's hard to be okay with feeling sad when I'm good and healthy and better!  It's difficult - nay, impossible - to give myself permission to relax and repair and recover.  I should be happy, right?  I should be jumping up and down with joy and smiling and running and loving and grateful to be alive!!!  So why do I feel as if my soul has deflated and my spirit has flown away? 

It's embarrassing to feel this way, to feel so weak and helpless, and so incredibly selfish.  I just want to find my happiness again.

Life goes on after cancer, but it's infinitely more complicated and exhausting.  Even in the light of positive outcomes, there can be struggle and sadness in the shadows.

The Gift of Joy

Today, I got the call I had been waiting for over a year.

A couple of months ago I stopped taking my Tamoxifen because of severe side effects.  My doctor gave me a month off, during which some of my pain abated.  But after a rousing "talking to" by Mr. Doctor (and some Oprah-esque A-Ha moments on my part) I chose to switch to another medication, Aromasin.  Similar to Tami but not typically as effective, it also comes with its own cadre of side effects including (most often) joint pain, bone loss, and those ever-pleasant "personal" SEs. 

Ugh.  Only took two months this time to realize Aromasin wasn't going to work for me.  Another visit to Mr. Doctor (who was much nicer this time...perhaps because Ken was with me and, well, it took us all of three seconds to realize Mr. Doctor was more interested in talking with Ken than he was with me...) and another trip to Club Med(ication vacation).

Mr. Doctor's concerns, however, were the continued bone, joint pain, and exhaustion.  Rheumatoid arthritis was his first option - "sometimes a result of the taxane chemos," he says.  NOW he tells me that.  "And we'll run tumor markers, just in case," along with a host of other bloodwork (the first and only time I  wished I still had my port).  "Of course, your Vitamin D deficiency could be causing the pain," he says.  News to my ears.  Didn't realize I had been dealing with a Vit D deficiency. 

Laurie, my Cancer Conceirge, calls me late last week.  "I see you're coming back to visit after Christmas," she says, and I tell her what's been going on.  That I had my bloodwork but am still waiting for the test results.  So, bless her heart, she does what she does best - pulls my records to give me the results (why can't the doctor ever do this?) 

Tumor markers are within normal limits.

RA factors are within normal limits.

Vitamin D is slightly lowered, but I'm on top of that.

The rest of my bloodwork looked perfect.

So - I am assured that means I don't have RA.  And while tumor marker tests aren't always perfect, we can assume I don't have a new primary tumor.

Because Laurie is wonderful, she promises to call me the day after my bone scan to give me the results; she doesn't want to me "wait and worry" over Christmas (she is truly a blessing!)

The bone scan was yesterday.  Same as the bone scan I had last year:  injection of nuclear dye, wait 3 hours for it to course through my body and attach to any cancerous areas in my bones so I light up like a Christmas tree under a scanner.  The scan was easy-peasy (I even get to keep my clothes on), and was over before I knew it.

But this time, the tech wouldn't let me see the scan.  When I asked if he saw anything concerning he simply said, "The doctor will be in touch with you in 3 to 5 business days."  And he escorted me to the door.

And so I panicked.  Because the last time I felt that feeling of, "I know something but I can't really tell you, but by not really telling you I am really telling you, but you have to guess, and I can't confirm, but you know what I'm trying to say, right?" was after my biopsy.  And we all know what happened after that...

Laurie called this morning, as I wended my way on 94 during rush hour to my internship. 

My bone scan is clean.  No sign of arthritis, and no sign of bone metastases.

I am now, truly, completely, formally, dating NED.  There is no evidence of disease anywhere.  No guessing or hoping there's no primary tumor hiding somewhere, no worrying that there's a met spot on my spine or hip or shoulder.  Nothing. 

So while I celebrated (totally the wrong word, but what else do you call it?) my Cancerversary just weeks ago, I can now happily celebrate (and that's totally the right word here!) my continued relationship with NED. 

I couldn't have asked for a better Chrismukah gift.  Cancer is still stupid, but life is so very, very good.

That horrible moment when you realize your life will never be the same...

Apparently, I'm in denial.

Personally I like denial, because it's a pleasant and happy place to be.  Life is nice here, like floating on the lake on a warm summer's day, leaning back to feel the hot sun on your face, dipping your fingertips in the cool water.

And then the heaven's open up with a crack of thunder and you're whirling around in a waterspout, hanging on for dear life.

Dammit.

I met with my medical oncologist today - not our usual nurse practitioner, and not the doctor we've seen in the past.  This is a new doctor, and I'm not certain why I saw him instead of my usual doctor, but I think it has to do with the fact that he's the devil.  Or, it's because he's very good at explaining statistics, and for that he's also the devil.

Which explains the waterspout of crap I heard in the office today.

He is glad to know that I'm feeling so much better since dropping Tami, "but let's talk about what that really means."  Several points emerged during our (one-sided - HIS) conversation:

• Because of the chemo, my bloodwork shows that I am currently post-menopausal, which means my body is producing less estrogen than when I was pre- or peri-menopausal.  "But your fat is still storing estrogen," he said.  What I heard was, "Lose weight, lady!"  Yeah, yeah...I'm working on it.
• My cancer is aggressive.  He says that the small size of my tumor and my node-negative status are still in my favor, "but that Oncotype score (42) is really troubling.  That test is very indicative of how your cancer behaves, and yours is aggressive."  I'm such an overachiever.
• "Recurrence means metastatic disease, which is incurable," he says.  "It's very rare to have another primary tumor, although it can happen."  Yeah, it can, cuz I know people it's happened to.  Thanks.
• Without the full benefit of chemo AND Tami, my recurrence rate changes from 28% (without any treatment) to about 23%.  Unless I take the Tami OR another hormone therapy, my recurrence rate will not reach the 18% quoted on the Oncotype test.  
• If I was triple negative (meaning ER-, PR- and HER2-), "we'd do chemo and radiation and send you on your way."  No hormone treatment because it doesn't work when there are no hormone receptors in the cancer.

Since he kept bringing up the Oncotype test I mention that the test shows I'm actually PR- and barely ER+ (6.5 is the cutoff, and I'm 6.6), so really I'm almost triple negative, and really, how much benefit am I getting from taking any hormonal therapy?  He checks the report (because I don't know what I'm talking about?) and then checks the original pathology report.  "I'm less than 10% PR+, and 50% ER positive," I say.  I know this report like the back of my hand; I can see it clear as day when I close my eyes.  "Yes, well, you're right," he says.  And then explains that the pathology describes the cancer make-up, and the Oncotype describes the cancer gene expression.  So they're two tests really testing for two different things.  I guess.

He spends the next several minutes quoting studies and statistics, down to the single percentage point of the benefits of each of the treatments.  He explains why it's important for me to do at least two, if not 10 years of hormonal therapy.   He talks about this as though it's a given, as though I don't understand the inherent risk of not doing it.  And I'm mad not because he's wrong - but because he's right.

He explains that I can forgo Tami but really should try one of the aromatase inhibitors (Arimidex, Femara or Aromasin), which is given to post-menopausal cancer survivors (and sometimes to those with metastatic cancer).  Of course unlike Tami - which is a bone-strengthener - the AI's will actually deplete my bones further.  "So, for someone like yourself who is osteopenic, we would also put you on Fosomax or another bisphosphonate."

So I could take an AI AND a bisphosphonate.  But wait...it gets better.

When I was first diagnosed with osteopenia our NP Dianne mentioned bisphosphonates are great at building bones, but come with a host of really nasty side effects, including jaw necrosis in a significant percentage of patients who use it.  It also often causes severe joint pain.

As do the AI's.  "But not as bad as Tamoxifen," says the doctor.  "But given your history of side effects, you may have trouble with the AI's, too." 

The additional benefit of AI's or Tami is the reduced recurrence for contralateral breast cancer (Ethel, not Lucy this time).  For every year after my original diagnosis, my risk of contralateral BC rises 0.5%.  "If you were 75 it might be different, but you've got 30 good years - that's a 15% increase - to think about."

"So," he says, "you have two choices.  One is to keep believing what you believe and hope your cancer doesn't come back, or try an AI and see if you can tolerate it."

I just sit there and stare at him, but I don't think he was really paying attention.  He writes me a prescription for Aromasin, and asks me to come back in three months.  "Of course, if it's too hard you can always stop.  But I'd really think about all we've talked about today.  So call us if you decide to stop."  He walks me to the front desk, and before I can say goodbye or thank you, he turns and walks away.

I'm not sure how I feel about all of this yet.  Ken wasn't able to come with me today because he was out of town, so we need to talk about our options.  But I can't help but feel that regardless of my choice, this whole stupid cancer thing isn't going to go away quietly or gently.  I never wanted a 100% guarantee that the cancer wouldn't return - I know I'm never going to have that, no one does - but I wanted to believe that I had done all the hard work already (slash, poison and burn) and that hormonal therapy was an "added bonus" of benefit.  Instead, what I heard this morning is it's just as important as everything else in keeping metastatic disease at bay.  And so my denial comes full circle, as I realize that I want to make an informed decision, and I just got more information than I necessarily wanted to hear.

I'm taking my M&M's, my fat ass, and my raft and going back out to the Sea of Denial...at least until Ken comes home later.

Thoughts, anyone?

What Would Tami Do?

For the last six weeks I've had a very pleasant and much-needed break from cancer.  Active treatment ended and I felt like I needed to move forward with my life.  I took naps.  I tended the garden.  I ran and did yoga.  I spent time rolling around in the grass with my grandchildren.  I gave my sister an ice-cream cake for her birthday.  I took apart my sofa and reassembled it on the other side of the living room.  Ken and I took a week-long vacation on the beach where we walked, read, napped, and restored our bodies and souls.

Another beautiful sunrise over Lake Huron

A lovely walk on a lovely morning

For a while, I actually forgot I had cancer.  How wonderfully sweet!

Today was my first three-month follow up with my medical oncologist.  It was good to see familiar faces and get many hugs; I was even teased about "dressing down" for today's appointment (alas, no Boob Fairy costume, which has apparently become a popular story around the onco's office).

What can be hard to explain is how difficult walking back into that office turned out to be.  Ken and I had a few minutes to ourselves before meeting with our favorite nurse practitioner Dianne - and I rather suddenly and intensely fell apart.  There is a specific smell in the oncology office that immediately hits your nose; I could instantly taste the "flush" of saline and Heparin injected into my port right before a chemo treatment.  I sat in one of the same rooms, in the same chair, where I had before been prepped and sat waiting for my hours in the infusion center.  And like a terrible waking nightmare, I flashed back to treatment and pain and sorrow and exhaustion and emotions I hadn't felt in months, and I fell apart, sobbing helplessly in Ken's arms.

But it was okay - because I needed to do that.  I needed to feel all of that to process that I was there, at that moment, because of all the work I had done before, not in spite of it.  That I am alive because of the treatment, and because of the wonderful treatment of the staff in the oncology office.  So yeah, cancer still sucks, but I'm still here, and today is another day to be grateful.  So I wiped away my tears, cracked a joke, and happily greeted Dianne with a hug and a smile.

The exam itself was a wonderful experience, and turned up absolutely nothing.  No lumps, bumps, worries or concerns.  Ken and I talked with Dianne about the pain and stiffness I've been experiencing since starting the Tamoxifen three months ago.  In particular my hands are literally arthritic; it is exceptionally painful to walk.  Getting up from a sitting position actually takes time because my back and hips hurt and are so stiff.  I have had to cut back on running because my knees hurt, and yoga has become a challenge.  I wanted to wait for a few months and see if the side effects abated, but as of this morning they were still going strong.  Dianne informed us that many women experience side effects on Tamoxifen, and it can take a year or longer to plateau and get better.

In a year, I'll be 50 - and I'll still feel like I'm 90.

I'm so not a science geek, but this is what I understand of Tamoxifen:  Some cancers have hormone receptors (they are "receptor positive").  These receptors become "active" when a hormone binds to them, and then the cancer grows.  Tamoxifen stops estrogen from binding to estrogen receptors in cancer cells, thereby keeping the cancer from growing (or coming back, so the theory goes).  For someone with ER+ (estrogen-positive) breast cancer, Tamoxifen can be a helper in keeping cancer from recurring.  It is a daily medication that is taken for five years.  It has a host of side effects, including hot flashes, joint pain, bone loss, mood swings - oh, and the increased risk of blood clots, stroke, and uterine cancer.

For someone whose cancer is highly ER+, Tamoxifen can be incredibly beneficial.  We learned, after my Oncotype test, that my cancer is very weakly ER+ (my score is 6.6, and 6.5 is the cut-off point for being ER negative).   After reading and researching Tamoxifen and weighing its risks and benefits, and exploring the significant side effects I've been having, Ken and I made an informed decision to take a hiatus from the Tamoxifen for six weeks to see how I feel.  We shared this decision with Dianne who supports us whole-heartedly.  It's possible what I'm feeling is simply a long-term side effect from Taxol, but Dianne believes it's likely the Tamoxifen and believes I'll start feeling significantly better in a couple of weeks.  She has asked that I come back again in six weeks to further discuss the decision, giving her time to gather more information and giving me time to see how I feel.

This is a good, positive and proactive decision - one that I am incredibly excited about.  After so many months of treatment, I have a new appreciation for quality of life, and Tamoxifen (or Tami, as we fondly refer to her around here) has been particularly disruptive in that respect.  Yesterday was my last Tami pill for the next six weeks, and I hope forever.

The only negative about today's appointment was the fact that I have continued to gain weight (another lovely SE of Tami).  Because estrogen is a fat-storing hormone, the more fat I have the more estrogen I'm battling.  So my promise to myself is that if I'm going to stop seeing Tami, then I have to also quit dating Ben and Jerry.  I can control the estrogen through medication, or through weight loss - one or the other, the choice is mine.

So my new mantra will be, "What Would Tami Do?" when I reach for those cookies, or that extra piece of cake, or that soft-serve ice cream, or a handful of M&M's (Godiva chocolate does not count...a girl's gotta have limits, ya know?).  It's a sacrifice I'm happy and willing to make, if it means I won't be 90 years old next year.

All is well, and all will be well. 

The end of this road

On November 22, 2011 our breast cancer journey began with my official diagnosis.  Today, with my final radiation treatment, our journey has officially ended.  No one uses the word “cured,” but instead I am considered NED – No Evidence of Disease. 

Paul Tejada Radiation Oncology Center

Got me my final walking papers!

No Boob Fairy this time - just me and my sweetie waiting for the doctor.

I expect to be dating NED – with Ken’s blessing, I’m sure – for many, many, MANY years to come.

It’s been a long eight months.  And back in November I didn’t know that I would struggle at times but that overall my experience would be better than many.  I couldn’t imagine that the fear would dissipate, that I would find joy and blessings in the darkest of moments, and that my soul would recover along with my body.  I couldn’t believe that I’d ever be here, on this spot, with surgeries and chemo and radiation behind me.

But here I am, on the Other Side and feeling human again, normal and useful, and looking forward and ahead to what the rest of my (long) life has to offer.

No journey is ever complete without the proverbial Life Lessons along the way.  Those are always good - but useless if unrecognized.  I wanted very much to spend this time taking notice of my life - but I got a little sidetracked by shiny objects (like needles), or sometimes simply forgot (thanks, Chemo Brain).

I know that I let a lot of people down.  I lived by the motto, “I make plans, not promises,” but that doesn’t mean that people’s feelings weren’t hurt along the way.  I had good intentions that sometimes went wrong – or were simply forgotten – and that bothers me.  I can't make up for those moments, but I am working to let it go and move forward.  I know that those who love me will understand; those who don't understand will hopefully talk to me so we can resolve it.  

People said a lot of interesting things to me along the way, too - none of which I took personally or felt hurt by.  I was simply happy that people were talking to me, instead of not talking to me at all.  It would have been easier to try and ignore what was going on or pretend it wasn't happening.  I have been guilty of that myself in the past, even recently.  Words like "cancer" tend to bring up really uncomfortable and scary feelings and maybe memories, and sometimes it's overwhelming to deal with.  I had to first deal with my own fears, and then realize that others may have had their own fears, too.  

At the same time, I lost some friends along the way, too – some through the front door, others through a back window.  It took me a while to fully understand that it wasn't about me, but it still hurt.  In the end I can now honestly say I wish them well and send them love and peace in their own journeys.

I played the Cancer Card, but only in jest.  I never wanted nor expected to be the center of attention, and was often really uncomfortable with the kindness shown by others.  I decided to sit with those feelings for a while to understand why I didn't feel worthy of being recognized...and I ended up in an abyss of self-therapizing that I eventually abandoned because I was driving myself further into therapy.  Sometimes, a cigar is just a big old smelly burny thing that no one really wants around.  And sometimes, we feel things that we have to get over because it's not necessarily about us, it's about others.  

I was supported both near and far by many wonderful friends, and made new friends along the way, too.  None of you realize how much every kind word, every thought, every prayer, every card or hug meant to me.  The energy and positivity helped me on really awful days.  I learned that I am loved - something I knew, but now I know.  I hope you know that you have been with me in my heart every step of the way.  You - yes YOU! 

My family has been the biggest support (and my most vocal cheerleaders!!).  My parents, my sisters, our children, our grandchildren, my in- and out-laws have loved me and cared for me in countless ways.  I was surprised on more than one occasion by visits from afar, always when I needed them the most. 

My relationship with Ken is stronger than ever before, in ways I never could have imagined.  He truly is my rock, my partner, and my best friend.  I never could have finished treatment without him by my side - not because I needed the help, but because my heart needed his encouragement and faith.  He never made me feel guilty for being too tired or in pain or angry or frustrated or simply sick.  He wanted nothing more than for me to get through treatment and come out healthy and alive on the other side.

I found strength in myself that I didn’t know I had (or could have), and determination and resolve that I will carry with me from now on.  I appreciate my life as it is because of its flaws and imperfections, not in spite of them.  Nothing is as important as the interactions and relationships with others; time spent is never time wasted.  Every moment is an opportunity to share a story, a kiss, a dream, a walk. 

Now, today, this particular journey ends - but that means a new journey begins!  I am choosing to leave this cancer behind me, and move forward not as Cancer Girl but as the chick with the cute new 'do.  I doubt that cancer will ever be far from my mind, and I admit that I am already worried about Life After Treatment.  But I can't move forward if I'm stuck in this spot, and so I need to actively let go of What Has Been, and work towards What Will Be.  For me, that means making a few significant changes - in particular, this will be my final blog entry.  I may update it from time to time, if something significant happens, but I need a break (and I'll bet you do, too).   I am going take a vacation, clean my basement, paint my kitchen cabinets, work on my article for publication, run and do yoga, date my husband, play with my grandchildren, and live my life.

Lucy and I need to start healing, and we can't do that in Breastlandia.  It's time to take a new step forward.  So I end this part of my journey - and this part of my blog - the same way I began, with a little twist:

I had cancer, but it did not have me.

Dos Symmetry

That what I thought it was, and I laughed because my girls haven't been symmetrical since surgery...(okay, so it made more sense in my head).

Actually the word is dosimetry (the process of measuring doses of radiation) and the dosimitrist is the person who created this:

My personal plate

This is the plate used to direct the boost of radiation to the surgical area on my chest.  Yesterday was the first of my final seven radiation treatments, called "boosts."  Radiation is no longer being applied to my whole breast (my final treatment was last Friday, and on that day I learned they were using photons - seriously.  I felt like I was in an episode of Star Trek!); instead it is being targeted directly at my tumor site.  So this is my view of the "plate".

This is the general view of the machine:

Finally remembered to bring my camera today!

At the end of the long "tube" attached to the center of the machine is the plate above.  The table rises so that my chest is a few inches away from the plate, and then I am zapped with electrons.  The plate keeps these electrons from the areas that do not need radiation, and allows the electrons to flow through the center "cut out" to my surgical site.  The process takes about 10 seconds, and then it's over.

After 23 doses of full-breast radiation, and now 2 doses of targeted boosts, this is what my chest area looks like:

No, they're not new tattoos; a permanent marker was used to mark the outline of the plate, so that each treatment the plate is in proper alignment (the original tattoos were used to align the machine in conjunction with lasers, which aren't used now).

You may notice very little reddening of the area, which is phenomenal.  For some reason, I have been blessed with very, very tough skin that has reacted minimally to the radiation.  I'm pink in some areas (under my arm in particular, and under my breast), but that's the extent of the visible damage.  My skin is tender to the touch and a different texture than the rest of my skin; the nipple is still changing and very tender.  But no visible burns, blisters or open sores.  It will take a couple more weeks for the radiation to completely leave the area so it's quite possible that the worst is yet to come, but for now I am very pleased with the physical SEs of the treatment.

Still tired, but that's getting better, too.  Every day is a little better, and I look forward to feeling normal again - whatever that's going to feel like.

Treatment is coming to an end very soon, and life will continue to move forward.  It has for everyone else; it will for me, too.  I'm scared, in some ways, about getting back out in the Real World without the safety net of "cancer" to keep me busy and preoccupied. 

Perhaps I'll simply spend time combing my hair...

Every-thing's com-ing up Rose-y...

Today was 21/30 - or 70% of radiation completed.  *insert super-happy face here.*  Two more whole breast treatments, then (starting next Monday) seven "boosts" aimed directly at the cancer site. 

Lucy is pinking up a little bit around the edges; today I was able to see a faint "square" around my breast of pink/tan tissue due to the radiation.  Apparently my skin and tissue will continue to "cook" for another two weeks post-final radiation because - well, because that's what happens when you pop a boob into a microwave for five weeks, I guess.  My skin is tender overall, and (cover your eyes if you're not feeling up to TMI right now) my nipple is turning darker and changing shape (at least I didn't include a picture of it...maybe later...)  I've given up wearing bras, much to Ken's delight, because frankly any fabric against my breast just really hurts right now.  While it's hard to explain, the skin is changing, and I seriously worry about accidentally scratching it off.  Of course my doctor is pleased as punch at how wonderful Lucy is holding up under this continued microwaving, and I am trying to remain optimistic that all will continue on a good path.

The fatigue is getting harder, but it's still good - so much better than chemo-related fatigue.  Mostly, I just don't give a shit about anything.  No, I'm not depressed - there's a general lack of energy, I guess.  Bathroom needs to be cleaned?  Oh, too tired, don't care, whatever.  Water the flowers out back?  I'd rather pray for rain.  Go for a run?  Hell yeah --- after my nap.  So yes, I'm back to napping again (that started this week) and going to bed early.  Can't sleep in late because, well, gotta hop in the microwave at 8:00 every a.m.  Of course my doctor is pleased as punch at how wonderful I'm holding up after five weeks.  Let's be honest, she's just a little too pleased in general, always so danged happy.

But I like my doctors that way - happy and pleased.  And continuing to give me good news. 

Every day is still a good day, even when I don't give a shit. 

Lucy! You got some 'splainin' to do!

While building an Ikea bookcase last weekend I remembered the old phrase, "righty-tighty, lefty-loosey."  And, thus, Lucy (aka My Left Breast) was born.  She joins old friends Mildred, You Bitch and Portia in my cancer journey.

Tomorrow will be 18 of 30 radiation treatments (or 3/5, or 60%!)  I will have five treatments next week, and then 7 "boosts" - radiation targeted specifically at the surgery site.  My last radiation treatment is scheduled for July 24th.

Surprisingly, my skin still looks normal.  I know that will likely change, but even my doctor is pleasantly surprised (goodness knows I am, too).  I have friends who are really struggling with skin issues, some from the very beginning, and again I realize how blessed I have been on this part of the journey.  My left arm is a little "tired," heavy and sore, and we'll be checking for lymphedema next week.  Aaaaannnnddd.....the fatigue is back.  Not nearly as bad as with chemo, but it's there and kinda getting in the way a little.

In many ways, I think this must be the "vacation in Aruba" that everyone alluded to months ago.  Whatever it is, it's a hell of a lot easier than chemo, and a truly pleasant experience in comparison.

I picked up some sunscreen so I could ride in my sister's convertible.  I want to feel the wind in my HAIR!

I has hair!

I has LOTS of hairs!

Yes, I have hair - and I can even feel it "blowin' in the wind" as I work outside in the garden.  My grand-daughter says it's "as soft as a blanket; I want to lay on it."  My head is like a Buddha belly - everyone wants to rub it (hopefully it brings someone good luck!)  It's amazing - I never thought I could be so excited about my hair coming back.  And not just my hair, but my eyebrows are coming in, too.  They're very short, but if I am seeing correctly I'm going to be waxing a unibrow very, very soon.

Oh, Lucy...you just keep on keepin' on, don'tcha girl?

Happiness is...

10.  Being able to actually feel and see my new baby eyelashes!

9.  Knowing that the reason the last of my eyebrows fell out is because they're quickly being replaced with new ones!!

8.  Having almost half an inch of shocking white "chemo hair" - interspersed with lots and lots of newly-sprouting thick, dark hairs!

7.  Making it through 12 of 30 radiation treatments with no visible signs or changes to my left breast or scars - so far.

6.  Having a complete and total return of my senses of taste and smell - and realizing that I never appreciated the beauty of either before.

5.  Knowing I will never again take my sense of taste or smell for granted.

4.  Having Portia removed - even if it means now fighting a nasty infection as a result of an allergic reaction to the surgical patch and tape.  -->insert sad and itchy face here<--

3.  Did I mention having Portia removed?

2.  Having energy enough to get back to "normal" - whatever that is - including running without fainting, and yoga-ing without pulling a muscle.

1.  Waking up, every morning, and taking that first deep breath, knowing that today is another day of blessings and happiness.

"Do not spoil what you have by desiring what you have not; remember that what you now have was once among the things you only hoped for."  - Epicurus

What a difference a day makes

Monday was my 5th of 30 rads, so I was 1/6th of the way done!

Yesterday was my 6th of 30 rads, so I had completed 1/5th of my course!

Today will be my 7th of 30 rads.  At 8:00 pm tonight - half-way between today and tomorrow's treatment - I will be 1/4 through my entire radiation treatment!!

This is why I love numbers so much.

Oh, and I got it wrong - this is actually what my radiation machine looks like (it's really dark in the room, and frankly I wasn't paying much attention to the machine because the whole thing is just so...surreal...)  It's much less intimidating in this picture, in the light of day...

Totally rad, dude!

This week began our new path on this journey - radiation treatments.

All treatments have side effects and potential long-term negative outcomes, and radiation is no exception.  I really debated going forward with this.  I wanted to be certain it was the right and best choice for me, for my long-term survival, for a lowered risk of local recurrence, so I spent hours upon hours doing research and educating myself.  I had to weigh the benefits vs. the short- and long-term potential risks.  And I'll be honest - in the end, it made sense to do radiation, but I am still hesitant about and unhappy with this choice.  It pisses me off to no end that after all these years, after all this money and research, this is still the best choice we've got - but it is what it is.  I've already been slashed (surgery), poisoned (chemo) and now burned (radiation).  It's the trifecta of BC.

Tuesday was my first radiation treatment.  Every day begins the same:  I walk into the radiation center and go directly to a private waiting room with a changing area.  I grab a hospital gown and a robe, and undress from the waist up (my first lesson on my first day - don't wear a dress!)  My tech, Dwayne, comes to get me when he's ready.  Around the corner is an innocuous, dark doorway.  As you step through the doorway you realize there are no lights, the walls "feel" heavy around you, and you've stepped into a maze:  10 steps forward, turn a corner, 10 steps to the right, turn a corner, a couple of steps to your left, and your suddenly in the radiation room.

A fairly accurate picture of my radiation machine

In my case the table is already "set up" for me - there's a pad about half-way down against which my butt rests.  That forces my head into a cradle in a certain position.  At the top end of the table, above my head, is a large "T" bar that I hold with both hands.  Little red laser beams on the machine help Dwayne line up my tattoos, and then I get my "active breathing coordinator."

No, this is not me.  But that's what my ABC looks like.

The neat thing about the ABC is that it holds my breath at a certain point, creating a space between my heart and lungs, and the tumor site.  This lessens the damage (but no, does not eliminate it) being done to my heart and lungs during radiation.  This is a great cross-sectional explanation of exactly how they're able to radiate my breast without zapping all of me:

A & B are the radiation beams; C (yellow area) is where the radiation
is hitting my breast; D = rib cage, E = heart, F = lungs, G = spine, H = sternum

It's pretty amazing to me that they can target such a specific area, but they work very hard at getting the beams aimed just so. 

I get two "zaps" every day.  I take a deep breath, release a little, and the ABC "holds" my breath at a specific point (92%, apparently).  During the first zap the head of the machine is just above my right arm, aimed across my chest at the right side of my left breast (similar to "A" above).  I count to 7, the zap ends, and my breath releases.  I can breathe normally for a few seconds while the machine rotates around me to the other side, and aims at the outside of my left breast (similar to "B" above).  I take another deep breath, hold it, and this time I count to 12.  Less than 2 minutes from start to finish.

That's it.  I get dressed, I leave - and it's about 15 minutes after I first arrive.

This week I've had four treatments - only 26 more to go.  So far my breast and skin look normal, but I am already noticing a little tightening of the scar tissue from the lumpectomy and the node biopsy.  Another BC sister said her radiation oncologist (RO) likened the process to "bacon in a microwave" - so you can only imagine what my poor boob might look like by the end of this.

In actuality I don't know what will happen over the next six weeks.  Some women seem to have really bad experiences, others not-so-bad.  I'm giving up my underwire bras this weekend and switching to soft cami's and cotton things to lessen the pressure and irritation.  Thank goodness for summer and halter tops! 

And thank goodness for the weekend and days off.  My little boobie needs a break.

The gift that keeps on giving

Yesterday, Ken and I went back to the oncologist's office at the bi-weekly chemo appointment time - 8:30 am.  But for the first time in 20 weeks it was for a follow-up visit, not a treatment, and it actually felt very different.  They still weighed me (damn them!) and poked my finger, and then we got down to brass tacks planning the next five years of my life.

I start Tamoxifen now, and will take it for five years.  It's classified less-than-scientifically as an ESD - that is, an Estrogen Sucking Drug.  As that label implies Tami suppress my estrogen in an effort to reduce "feeding" my estrogen-receptive cancer with, well, estrogen.  Technically Tami is considered "treatment," but I don't see it the same as the chemo and radiation I have done, although there are considerable side effects with this drug, too, including cervical and uterine cancer, and ovarian cysts.  So much fun...

I learned yesterday, too, that I now have osteopenia - a decrease in my bone density.  I did not have osteopenia prior to starting chemo.   It is caused by - drum roll, please - a loss of estrogen.  Interestingly enough, runners are also often affected by osteopenia.  It doesn't appear that I can reverse this - but I can work towards preventing it from going to the next step - osteoporosis. 

I asked my wonderful nurse-practitioner about follow-up testing like PET scans and tumor marker blood tests, and she said matter-of-frankly, "There aren't any tests that will predict if your cancer will come back.  Tumor marker tests are only one piece of the pie."  In the end, the reality is that if I notice something "different" or I feel significant pain for longer than a couple of days, I contact their office and we go from there.  There's no way to know if the cancer will come back - until it actually has.  And this is okay, really.  Because I can spend my time worrying about a recurrence, but that doesn't change anything.  In the end, it is what it is - and I don't want to waste my time worrying about something I cannot control.

My clinical trial coordinator shared with me two wonderful gifts before we parted:  a delicate crystal bracelet with a pink ribbon charm, and a book about Life After Treatment.  There is a chapter that provides numerous statistics indicating that recurrence - both local and metastatic - tend to occur in the early years (typically three) after the end of treatment.  However, recurrences can happen 20+ years later.  In this way, breast cancer is different than most other cancers, whereby at a certain point survivors are considered "cured."  This is yet another reason why we hear the rallying cry for "The Cure" so frequently - we are rarely ever "cured" but rather "dancing with NED" (No Evidence of Disease).  As the author points out:

"This is why, when it comes to breast cancer, there are no absolute guarantees of cure after treatment.  It simply isn't possible to reduce risk of recurrence to zero - to say positively that you are cured as of this moment and there is no change you will ever have to worry about breast cancer again.  There is no magical five-year or ten-year point in time when breast cancer can be described as cured.  For women who are living with NED there is only a steadily declining risk."

So I hope to be dancing my own Happy Dance with Ned here pretty soon.  In the meantime, BC continues to be the gift that keeps on giving.  Life will never be what it was - but it will be - it is - very, very good.  I'm so grateful for each and every day.

Mean Girl

My final chemo was 10 days ago; radiation doesn't start until next week.  For the first time in several months I have a little "time off" - a vacation, if you will - from poison and pokes and side effects.  I should be relishing this time, right?  I should be relaxing and enjoying and laughing and smiling and happy-happy-happy...

Instead, I've become a Mean Girl.

It's true.  I can own this, even if I'm not particularly proud of it.  I am Mean.  I'm really cranky.  I'm a truly unpleasant person to be around right now.  Hell, even *I* don't want to be around me.

A poor soul from the hospital called me last week to inform me (rather unceremoniously) that they don't participate in the chemo co-pay program they had me sign up for months ago.  I was confused; "You gave me the paperwork to sign, how do you not participate in the program?" I asked.  Turns out the oncology center and the hospital don't work in unison; they're separate entities and so one may do something that doesn't affect the other.  The oncology center gave me the paperwork, assuming the hospital participated, and it doesn't.  Which means nothing for them, but everything for me.  And so I got snotty with this poor soul, who did her level best to get off the phone as quickly as possible without long-term psychological damage.  I still feel bad for her.

Five minutes later the phone rings again, and this time it's the radiation department, calling to set up my first appointment.  My heart was still pounding and my adrenaline pumping from the previous call, and so I lit into her, too - unfortunate timing.  People assume I have nothing better to do with my time than attend appointments in the middle of the freaking day - don't they realize I work and go to school 60 miles away?  Right, go to work early and come home, then drive back for class?  Sure, lady, I've got an overabundance of time, energy, and gas to do this with.  Seriously?!?! 

Turns out they only schedule first rads visits at 1:00 in the afternoon.  But my remaining visits should be available at 8:00 am, making my drive to Ypsi fairly uninterrupted.

Oh.  Sorry.

This isn't her fault.  It's neither their fault.  They didn't need to get yelled at by a bald, round-faced, hairless creature.  They don't care that I'm still crawling out of bed some days; that the SEs haven't miraculously left my body; that money doesn't grow on trees or fly out of my butt around here. 

I simply shot the messenger.

All of these months I have been happy, truly happy.  Feeling blessed for family and friends, for support and guidance, for love and kindness, for insurance and generosity.  I have been feeling good, even when I was feeling bad, and knowing that an end was in sight, this wouldn't last forever, I would survive to live another day, to run again, to attend yoga class again, to graduate again, to have a real job again.  There was so much peace that I thought I had come to terms with all that was happening, and I was so proud of myself for being positive and enlightened and joyous.

While I was actively in chemo I think I could see a goal in sight, and that gave me something to work towards.  Now that chemo is over, several people have intimated that they believe "treatment" is done - I think I believe that, too, on some level.  Right now it's hard to see radiation as "treatment" because (1) I haven't started it and (2) I don't know how it will leave me feeling and (3) it won't have the poisonous SEs that chemo has had, so will I feel like it's making a difference?  I feel a little in limbo, in this space in-between the two courses of treatment, and it is here that I am finding my anger.

Either I was in denial or I just didn't recognize the magnitude of the negative feelings that can be had during a time like this.  I prefer to think it was the latter, as I was (and still am) very open to feeling whatever comes along, no matter how bad it might be.  Never having been through anything like this before, it's hard to know exactly how one is supposed to feel - good, bad, or otherwise.  So maybe I just didn't know that I would have moments of being angry, or furious, or nasty, or just plain mean. 

I will start to feel better soon, I'm certain.  The SEs of chemo are slowly leaving my body, but not as quickly as I had hoped (and perhaps expected).  I've been feeling sorry for myself, and that has translated into overt anger and nastiness.  God bless the person who crossed my path and pissed me off because they didn't deserve whatever they got from me.

In the end, it's okay to be angry about all of this.  It really sucks, on so many levels.  It interrupts a busy life; it adds stress to an already-stressful time; it interferes with the best laid plans; it creates chaos that feels impossible to reign in.  Cancer is the gift that keeps on giving (it gives me a headache, a backache, a pain in the ass, numb fingers and toes, disintegrating finger nails. and a reason to buy fake eyelashes, if nothing else).

In the meantime, I'll stuff away my inner Lindsay Lohan, and work more towards finding that inner peace.  Because no one likes a Mean Girl - even me.

The Tattoo'd Lady

In celebration of the end of my chemo, I went out and got tattoo'd yesterday:

Yeah, that's it - one of my three radiation tattoos.  This one can be found in the middle of my sternum, directly between my breasts.  The other two are just as delicate, intricate and attractive, and are on each side of my chest, below my ribs and armpits.  This triangle allows the radiation tech to "line 'em up" in the exact same location each and every radiation treatment.

Maybe when I'm done, I'll "connect the dots" and create something festive and celebratory across my chest.  Like a battleship.  Only prettier.  And bigger.

Radiation will begin after June 9th, and last for 30 treatments - once a day, five days a week for six weeks.  The first 4.5 weeks will be radiation of the entire breast; the last 1.5 weeks will be a "boost" - a very small radiation area pointed directly at the tumor site.  Short-term side effects are minimal - I'll likely be tired (much like chemo, the effects of radiation will be cumulative over the 6-week period) and will be sporting a bitchin' sunburn - but just on my left breast (I'm going to make up a story that involves tequila, a pool boy, a hot sunny day, and falling asleep with only half my tank top on...)  Long-term effects can include heart and lung damage and lymphedema (swelling of the arm/hand on the affected side).

In an effort to curb the potential heart/lung damage, I will be using a scuba breathing apparatus, of sorts, during each of the treatments.  It's a really interesting thing, and the tech and I spent well over an hour refining the way it would work.  In short - I take a deep breath and, using the mouthpiece, am forced to hold the breath at a very specific point in the exhalation, for 25 seconds.  Filling my lungs with air creates a space between my heart/lungs and the tumor site; holding my breath at that very specific point creates optimal space, decreasing the likelihood that radiation will cause damage (or, if it does hit my heart/lungs, will hit the smallest area possible).

While I was feeling very free and liberated after last week's final chemo, it hit me yesterday that treatment isn't yet over.  I have been told that radiation will be much easier in every way than chemo, and for now I trust that prediction.  I don't mean to sound impatient, but I just really, r-e-a-l-l-y want this all to be done.  So yesterday felt a little like a slap in the face to someone who thought she had gotten away from it all...only to be reminded that it ain't done yet.

It's all good - just another step in the journey, a new path in the road.  And besides - I got free tattoos out of the deal.

Stepping off the old path, on to the new

The last couple of weeks have been a whirlwind of excitement, adventure, love, hope, courage and joy.  Blessings have fluttered around and landed in my heart a thousand times, as I am reminded again how lucky I am to be surrounded by the most incredible family and friends.

A week ago Ken and I were honored to attend a benefit concert on our behalf, organized by the members of my son Michael's band (Cyk Cylinder) and their amazing families.  The venue space was donated by the owner, and several other local bands participated, too.  I have struggled with describing this event because, frankly, I am still at a loss for words.  People spent so much of their time, energy and passion to gather donations, make an afghan, bake cupcakes, organize the raffle, pull bands together, get the word out to the community - for someone they don't really know.  They used their considerable gifts and talents as a vehicle to help another human being, and being the recipient of that generosity and kindness has been life-changing.  I am so honored and humbled, and will work hard to "pay it forward" in some small way, each and every day.  

The next day, on Sunday, we gathered with another group of wonderfully loving, supportive and generous family and friends as we walked and ran the Komen 5k in Kalamazoo.  Ken's daughter Miriam and her husband Aaron drove in from Madison; Ruth and Sean flew in from NYC.  Mary and Stephanie cut their Traverse City vacation short and drove down to support us.  Ken brought several coworkers and their friends and spouses.  Our dear running friends Lorelei and Kelsey organized "Team Nancy" (thank goodness someone else did, because I can't organize my sock drawer these days!), and we rocked the race!  It was late - 2:00 - on a day where the temperature (before moving or breathing) was 90+ - in other words, not the optimal day for a race.  And yet, we did it - and did it well!  I had not run in three months, and even walking has been a challenge, but we all crossed the finish line in style! 

Some of our team members, from left:  Aaron, Miriam, me, Ken, Ruth,
Clint, Rodney and Laura.  Sean is hiding behind the camera.

Even though life is really all about the journey, everything had been leading up to the end...the destination.  Our celebrations carried us into the week we'd anxiously been awaiting for 4.5 months - my final chemo.

On Thursday Ken and I headed to the infusion center for my last treatment.  We carried pink flowers and boxes of chocolates to share with the staff - the friends - who have supported us through these days I hate so much, held our hands and wiped our tears, and have always been more compassionate and caring and patient than I could have ever hoped for.  These women and men have made a very scary and difficult time that much easier to get through, and there was no true way to share with them the depth of our gratitude and how much they have changed our lives.

Except, maybe, the Boob Fairy.

Yes - the Boob Fairy, all pinked up in tulle!

Yes, I did.  I went to my final chemo in full Boob Fairy regalia - all pink tulle and shiny sweaters and glitter shoes!  Someone commented that they'd never seen anyone dress up for a chemo appointment - but they seemed to appreciate my need to celebrate the ending of this part of my journey.  People came from other areas of the office "just to see," and we all had a good laugh.  As usual I slept through most of my treatment, but I still felt like I was doing the Happy Dance inside.

Eventually it was over, and so we gathered our things and left.

And I cried on the way home, but it was okay.  I am grateful and so very happy that chemo has ended, but it has defined my life for so many months that I feel a little lost right now.  Part of this journey is learning to navigate the New Life we are living - the appointments, the schedules, the testing, the treatment, the changes in every aspect of What Was.  What Will Be is different, but still good, and we look forward to moving forward and taking that next step.

Doing it in style and grace - and lots of shiny pink tulle, to be certain!

Chemo Brain

Let me tell you about chemo brain.

Wait...I forgot to put toilet paper on the grocery list, hang on, be right back...oops, sorry, I got distracted...crap, I forgot to print off my paper for class...I should really get ready for class, yesterday we spent the class time in the courtroom in Ann Arbor, I ran into a former colleague and friend who was there on a case, what a small world!  Then we went to lunch at Zingerman's.  I mean, I didn't go with my friend but with other students from the class.  I mean, they're friends, too, but it wasn't the friend I met in the courtroom. But anyway, it reminded me of high school, because we'd go to Kerrytown or Zingerman's for lunch every day.   That was back when Gabriel Richard was downtown, they built a new highs school a few years ago out at Domino's Farms.  I forgot to ask my friend how her new job was going...  We had Domino's pizza for a school event a couple of weeks ago, I haven't had that in years...wait, let me check my calendar, yeah, see, I forgot to write down that I have to work on June 30th, which bums me out because there's a BC women's retreat in Manchester that weekend that I wanted to attend...

This is my brain on chemo.  Any questions?

I have always been easily distracted by shiny objects (staff meetings in my former office were a jumble of off-topic conversations that often created frustration among some coworkers), but this is different.  I've heard the term "chemo brain" bandied about, and during my first treatment we became intimately acquainted.  Chemo brain changed significantly (or has simply increased in severity) with the Taxol, and continues to this day.  My brain has ceased to function on several levels.  Serious, true cognitive impairments have set in, to the point where having conversations and accomplishing simple tasks around the house become nearly impossible.  It's a hard SE to explain to others, because it doesn't make any sense, and some days are worse than others.  Now, nearing the end of my treatment, I can predict which days will be worse (Tues - Sun after treatment, I should never attempt a conversation with another human being, but the cat is okay) and which days will be better (Mon-Wed before treatment I can write a paper for school, but need to explain in advance that some of my sentences will be wildly incoherent).

The first couple of days after treatment my brain is wild and out of control because of the steroids.  Once those wear off and the *crash* occurs, I wake in a fog of half-thoughts and partial memories.  In some small way, I can only imagine this is what dementia must feel like - I know I know something but I can't remember it, and I was just thinking about it but then it literally flew out of my ear...

I have conversations with my husband that disintegrate mid-sentence.  I forget what I was saying.  Or I simply lose interest in the conversation.  It's odd.  Yesterday, a classmate was telling me an important story and I saw an old friend walk by - and so I got up and walked over to her, completely (and unintentionally) dismissing my classmate.  I am so easily distracted that I cannot help but change the topic of conversation several times in one minute.  I talk over other people.  I physically cannot hear what they're saying - it's a jumble of words that make no sense.  Recently, Ken said something to me - a complete but simple sentence - and I looked at him with a blank stare, then started to cry.  Not one word he had spoken reached my brain - I couldn't understand a word he had just said.  He repeated his thought, and then it clicked in my brain - but that has happened several times, and it's really quite frightening.

Work becomes so difficult, and I apologize profusely to my supervisors and coworkers.  Sometimes, I simply don't know what I'm doing - tasks I had been easily able to complete in the past.  Much of what I do is brain-related - you know, write a letter, make a phone call, attend a meeting, discuss a concept - and I am failing at those tasks, miserably.

I have an interview for my internship on Tuesday morning, and am terrified I won't be able to speak intelligently.

I hope and pray this resolves itself quickly after my final treatment.  If this is the way...oh my gosh, it's a beautiful day and I really don't want to be stuck in the classroom all day, I brought popcorn because we're going to be watching a movie about death row inmates sentenced as juveniles...  If this is the way it's going to be from now on, I'm in trouble.

Until then, I apologize in advance to every single person I know, love, interact with, or who has the unfortunate opportunity to meet me for the first time during this awful period of brain (in)activity.  I am not like this, and will work harder to be more involved with myself and aware of what I'm doing, but I can't promise anything...especially since I need to try and remember to get my flowers planted this afternoon before they die, I already lost my Mexican heather and, shit, gotta remember to pick up some soil on the way home, and another mint plant...ooooh, mint juleps sound nice, maybe I'll make some for later this evening...

I Am a Survivor

A few weeks ago a student stopped by my desk at EMU to ask for directions to another department.  After a brief chat she said, "Are you a survivor?"

I blinked...then blinked again.  I must have looked like a deer in the headlights.  She got a little flustered, as though she had asked the wrong question of the wrong person and then I realized what she was asking me - Am I a cancer survivor?

No one had asked me that before.  No one had used that word in conjunction with me.  In all this talk of diagnosis and treatment and prognosis and recurrence, no one had once said I would survive.

"I'm working on it!" I replied, suddenly understanding.  She said she was a five-year breast cancer survivor, our sisterhood established.  We chatted about treatment and outcomes, new testing and clinical trials, and we wished each other health and wellness as she left for her destination.

I had forgotten about that conversation until today.  I had forgotten about survival until this afternoon.

Ken ran the ACS Bark for Life 5k today, thanks to our friend Bobbi Jo who wanted to support me and others she knows battling cancer.  I had to work this morning so, unfortunately, I missed all the running fun (but will have my chance in two weeks at the Komen run in Kalamazoo).  Ken tells me he's got "swag" to share - and a special gift for me.

It's an ACS shirt - and on the back it says,

SURVIVOR

I burst into tears.

Every day I work towards completing treatment and getting back to my normal life - whatever that "normal" may be.  But in my darkest hours, I fear I will not make it through this, that this cancer will kill me - now or later.  I am apprehensive about the testing I will complete once treatment is over - the baseline they'll use for future tests to determine recurrence or metastases.  I wake up crying, fear and despair pouring over me from nightmares I cannot control.  I have micro-moments of panic, like walking into a brick wall, that all this work will be for naught and I will not be prepared for what may come.

The tears flow for several minutes as I let that word wash over me, cleanse me with its power and force and make its way into my heart and soul.  In all these months I cannot remember a moment where I felt the enormity of my survival.  I cannot remember ever feeling that I would be a survivor.

I am ready to own that word:  survivor.  That's me.

Yes.  I am a survivor.

Hair, hair, hair, hair...hair

"Gimme 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"

In all these months, I've never had a moment of missing my hair.  I save 45 minutes in the morning - which translates directly into 45 minutes extra sleep, or 45 minutes extra chatting with Ken, having coffee or watching the news - by not having any hair.  I throw on a color-complementary scarf or wrap or hat and walk out the door.  Sometimes, I go nekkid and topless - so easy-peasy that I have conspired to shave my head long after my hair wants to grow back.

No shampoo, no conditioner, no hot oil treatments, no leave-in conditioners, no blow-drying, no curling, no flat ironing, no hot rollers, no brushing, no combing, no ponytails, no headbands, no clumps of hair in the bathroom drain.  The most I do is swipe a lint roller over my head to pick up any stray stubble falling out.

"Flow it, show it, long as God can grow
 My hair

Let it fly in the breeze and get caught in the trees
Give a home to the fleas in my hair
A home for fleas, a hive for buzzing bees
A nest for birds, there ain't no words
For the beauty, the splendor, the wonder of
My hair"

In all these months, I never noticed other people's hair.  Last week while waiting in line at the grocery story I found myself staring rather intently (and probably inappropriately) at the woman two lanes over - at her hair.  A beautiful brownish-reddish color, an adorable bob haircut shorter in the back than in the front, sideswept bangs, so smooth and straight and full and beautiful.

For the first time that I can remember - I missed my hair.

"I want it long, straight, curly, fuzzy, snaggy, shaggy, ratty, matty
Oily, greasy, fleecy, shining, gleaming, streaming, flaxen, waxen
Knotted, polka-dotted, twisted, beaded, braided
Powdered, flowered, and confettied
Bangled, tangled, spangled, and spaghettied"

Now I find myself not only noticing, but taking note of, other people's hair.  I think, "I've always wanted to try that style," or "Maybe I should consider buying a flat iron" or "A new hair dryer - I deserve a new hair dryer!"  I comment to friends about their beautiful hair:  "That style looks so great on you!" or "I love your new color," or "Your stylist is fantastic!"  I argue with and scold the lint roller as it at is pulls little strands of dead hair out of my follicles, as though those hairs will ever amount to anything (they're dead, they cannot grow, but they're still hair).

My friend asked me today why I don't wear either of the two wigs I have (one generously donated by the ACS, the other a very inexpensive wig I purchased before I started treatment).  Horrified, I turned to her and said, "Oh my god, because they look like wigs!!!"  Which is true - both of them look fake, they make me look like I'm wearing a wig, and while I get a good laugh out of them (and my grand-daughter enjoys playing dress-up with them), I find myself actually quite sad when I pull them on my bald head.  They aren't horrible wigs; I will share them with someone else who can use them and will appreciate them.  But I thought I was okay without hair and didn't need it, or the wigs, and so they still sit in their boxes in my closet.

While some of my BC sisters are experiencing hair regrowth during this part of chemo (Taxol), it seems to be those receiving the drug every week.  I don't know if it's because my dose is "dense" (twice the amount every two weeks) or because my body is not ready, but my hair is not yet returning.  In fact, my hair continues to shed:  I have exactly one eyelash left, on my right eye, and every day I lose three or four eyebrows, to a point where they're almost gone.  I have a little bit of "duck fuzz" on the back of my head - tiny white hairs trying to grow back in, but I noticed dozens of them on the lint roller after last week's treatment.  I may just have to wait until after my final treatment before I hold out hope for the return of my hair.

But my hair will return.  And I will be so glad when it's back.  I'll happily give up that extra 45 minutes in the morning to be able to style it, to grow it, to cut it, to clean it out of the drain, to feel Ken's fingers running through it.

I'll even be glad to shave my legs again.

My Beloved Enemies

Warning:  Chemopause and pain meds may not mix well.  Potentially politically and personally offensive post ahead.  Read at your own discretion.

Recently, a BC friend posted a link to an article about the standard/typical “Save the Ta-Ta’s” campaigns we’re all so familiar with.  I mean, c’mon – breasts are in our face everywhere, begging to be saved – boobies, ta-ta’s, chi-chi’s, you name ‘em, they are asking for help.  I commented on my friend’s post that while I don’t particularly like these campaigns I think they offer an opportunity, through a humorous intention, to perhaps educate and illuminate the masses about breast cancer.

On that note, an important point is made:  All of this is not about saving boobies –it’s about saving lives.  And I struggle internally with the fact that we can talk openly about saving boobies, but we admonish women for breast feeding in public because it’s disgusting or inappropriate.  Breasts are for fun, and nothing more.  To wit:  Boobstagram (http://boobstagram.fr) is using pictures of breasts in bras (apparently very nice, round, young breasts visually appealing and unfettered by scars or divots from surgery, both still beautifully intact) to raise awareness about breasts.  Er, I mean, breast cancer.  Their tagline is, “Showing your breasts on the internet is good, showing them to your doctor is better.”  Osocio has a great commentary on Boobstagram (http://osocio.org/message/boobstagram_cleavages_against_cancer/)  Here’s another blog that talks about Boobstagram, but from the viewpoint of a testicular cancer survivor (http://www.amptoons.com/blog/2012/04/25/save-the-body-parts/)

I own and proudly wear a “I heart Boobies” bracelet because my son gave it to me, and because he loves me, and he’s showing me his support.  I also wear it because I have yet to find a bracelet that says, “Save your life, get a mammogram” or “Become breast friends with your girls” or “Give your breasts a good hug – and a good feel – today.”  Because those are the messages we really need to get across.

This battle I fight every day is not about saving my breasts, but about saving my life.  I say I would happily give up my breast(s) if it meant living.  And on the highest level, that’s true.  But what’s also true is that my breasts are my beloved enemies.  I love them so very, very much.  They nursed my children when they were young; they have given me so much pleasure over the years.  My husband loves my breasts more every day.  They make my shirts look great, and bathing suits even better.  At 48, I still love the way my breasts look; I’m not ashamed of them, even now with multiple scars and bumps.  I would give them up, but I would feel as though an important part of me was missing, too.  I don’t believe my breasts make me a woman, or even feminine, or sexy or important or vital or of value and worth.  But they have been an integral part of many aspects of my life, and they are important to me.

My grief at losing them – even to save my own life – would be painfully real.

So I continue to support ta-ta’s and chi-chi’s and boobies, if for no other reason than it gives me an opening to talk about my story (and I tend to use the dreaded word “breast” when I talk about my cancer – my mother always said I should use appropriate terminology.  That’s why I love to say the word “vagina” so much, too).  It gives me a chance to talk about the reality of breast cancer, how we can detect it, how we can’t depend on mammograms and sonograms but mostly on our own hands – or those of our lovers, or doctors – to find those little lumps that change our lives.  We need to depend on our eyes, too, to notice skin dimpling or nipple discharge or change in size or shape, or change in color or texture. 

I couldn’t care less about saving my boobies - mostly.  I do wish we had better catch-phrases for talking about breast cancer/life saving, though. 

And Boobstagram can kiss my beautifully perfect imperfect breasts - and my ass.

Chemopause

My new friend Mildred visits me often - sometimes I meet up with her at Meijers or Target, or when I'm trying to get some work done outside, but most frequently she bothers me in the middle of the night.  I don't particularly like Mildred - she's nice and all, and doing her job by visiting me, but I am really looking forward to ending this friendship.

Mildred is what I've fondly named my hot flashes specifically, and my chemopause in general.

Chemo has put me into early, forced menopause, and when I officially stop chemo (May 24 is my final treatment) Mildred's visits won't end.  No, no they won't, because after chemo I am slated for five years of Tamoxifen, a drug designed specifically to induce - wait for it - wait...for...it - menopause.  So Mildred's visits will continue.  Bitch.

You've read along the way that my tumor is ER+, which means it has estrogen receptors, which also means that estrogen "feeds" the tumor.  The job of the Tamoxifen is to knock out all estrogen in my body to keep the cancer from returning, or any stray original tumor cells from growing (although I'm doing my best to get rid of those "original" tumor cells with all this chemo and radiation).  If I were post-menopausal already there would be no need for (or perhaps less need, depending on what my body was producing) Tamoxifen.  No, because I'm still young (there's that crazy word again!) and pre-menopausal, I get visits from Mildred.  Again, I say - bitch.

But it occurred to me last night that chemopause doesn't cause simply hot flashes - it's also creating alot of emotional, physical and psychological side effects that any woman enduring menopause would also be experiencing.  I am moody and irritable (irrespective of the steroids - that's a whole different story), and find my temper shorter than usual.  I cry at the drop of a hat.  My memory is suddenly shot to hell, and sometimes my brain just does not focus (moreso than the usual, "Oooh, shiny object" problem I've had all my life).  I really am just slightly depressed, and hoping and praying that the upcoming spring/summer will help alleviate some of that.  And I'll just leave some of the more intimate physical side effects to your imagination.  Mildred, you truly are a bitch.

I'm certain that part of what I've been feeling lately has to do with the fact that my physical activity level has decreased considerably, but I cannot risk the germs at the gym and the weather has been less-than-cooperative.  I'm working on that, too, as much as possible, hoping it will help.  I have my first 5k race of the season coming up on May 20 - the Sunday before my final chemo - and while I'll likely crawl across the finish line, I will finish.  I'm sad that I'm missing the Survivor Lap of Jackson's Relay for Life this year because I will be working out of town, but there will always be next year (yes, there will be a next year for me). 

So, I'm working on embracing my relationship with Mildred; she's going to be around for a long time, so I might as well try to be her friend.  Because she's doing her best to make my life a living hell - might as well kill her with kindness (and beat her with a big stick when she turns her back).