Wednesday, May 23, 2018

Living Strong and Free

Ouch. Sorry about ditching you all for a year!

My year post treatment was more difficult than I had hoped.  I think we tend to focus on the treatment end of things and forget that our bodies are literally waging war and will need to recuperate properly.

My first post mammogram went SO smoothly.  My second - just this month - did not and I had to go back for a diagnostic mammogram with the possibility of an ultrasound.  Cue rampant memories of my "just a bit of" diagnosis.  I could tell I was mentally trying to prepare myself for the ride to start all over again.  Oy vey.

Luckily, the follow up images cleared everything up.  Those "dumb boobs" aka "dense breasts" that I have simply now have scar tissue aka badges from kicking cancer's ass, so it took some better pictures to assure the doctors that all is well.

All IS well.

I have continued to attend a restorative yoga class at the cancer center.  Seek these out if you have any near you.  Ours is free and focuses on gentle stretching and relaxation meditations.  The instructors can show you certain positions that help with nausea, insomnia, and the general positive mindset that is so incredibly important as you go through treatment and after.

I had my doctor refer me to Mary Freebed's Rehabilitation Hospital for physical therapy, and from there I went through a program to get me back into working out.  The doctor at Mary Freebed also spent a good deal of time considering my ongoing pain.  Mine is from some nerve damage from chemotherapy.  He prescribed Cymbalta and, wow, it has been wonderful.  It disrupts certain pain receptors (if I'm explaining that correctly) and, I'm not going to lie, I was not upset that it is also used as an anti-depressant.  At the time, post-treatment, I was caught in a catch 22.  Moving can help with post-treatment pain.  Post-treatment pain makes you not want to move.  Hmmm ... what now?!

Seek out any of these types of get-going programs and medical treatments.  I just started another called Live Strong at the YMCA.  So far it is fabulous.  This is 12 weeks with instructors at the Y with a three month free membership.  The instructors assess where you are physically and then build an appropriate program for you.  You'll also meet others in similar situations.  Talk to your surgeon and oncologist about Live Strong - they should recommend it once you've healed sufficiently.

Keep asking questions.  That's honestly the key.  If something is just not working for you, keep asking questions until you find what DOES work.  There IS a light at the end of the tunnel.

I'm looking around now and seeing sunshine.  I'm still working on the weight (isn't it ALWAYS the first to come and the last to go - how rude!) but I'm focused on the present.  What makes you happy .... today?  A hug from your child?  Seeing the new Marvel's movie?  That first cup of coffee?

Whatever it is ... remember those little joys of life.  They'll get you through the tough ones.

As always, any of you are welcome to ask me any questions.  Remember - you can do this.

Life is good.  Sure, absolutely, there are moments that suck.  A cancer diagnosis SUCKS.  But there are always moments that shine.  Love and support that blows you away.

Ultimately, life is good.

Thursday, May 11, 2017

The Land of Uncertainty

I'd love to say that I weathered my year of cancer and emerged stronger, tougher, and ready to take on the world.  The truth is that I'm living the aftermath and that often isn't pretty.  I was focused so much on simply making it through last year that I kind of forgot the fact that after months of chemotherapy and radiation, my body might just be a tad pissed off.

I'm still dealing with daily pain.  If anything, it is greater than when I last wrote. 

Yes, it's frustrating.  Yes, it's likely a side-effect of my treatment.  No, it's not neuropathy. I'm trying to remind myself that while I (hopefully) killed all the cancer in me, I killed a whole whole lot of good cells, too.  Cells that ... are kinda necessary.  Our bodies are mini ecosystems in which cells of one type work with cells of other types and, well, last year was spent dumping a shit ton of nuclear waste in that world.  Gaia is pissed, you guys.

Gaia as in ... the mini world of me.

Do you know how incredibly messed up it is to read posts from a year ago, when I was in the MIDST of chemotherapy, and realize that I felt BETTER then? 

My body roll call?
  • Hair:  kick ass and growing wildly
  • Frankenboob: a seasoned veteran ready to tell tales of bravery
  • Bride of Frankenboob:  frankly rather cranky and still healing from her transformation last November
  • Nails:  I have a pedicure scheduled in June - my first since I was sure chemo would take four of my toenails.  It didn't but it was touch and go there for a bit and they are still slowly - freakishly slowly - growing back to normal.
  • Pain: Yep. Everywhere.  Still.
  • Weight:  Yep. Everywhere. Still.

I try to keep telling myself that it took a year to go through the treatment, it might take at least that long to recover from it, but ... I'm tired.  I'm so tired of pain, tired of ... being tired.  I don't know exactly what life will be like next year or the year after.  I'm living in the land of uncertainty.

But what really drove me to write tonight is more basic.  It wasn't the overall sense of uncertainty that I feel as I recover.  It is the sharp jarring uncertainty of tomorrow.  The fear of tomorrow.
As in ... literally tomorrow.

Tomorrow I have my first post-treatment mammogram.  I'll be back at the Betty Ford Breast Center, donning those deep purple/maroon/plum half-robes, and watching the Frankenboobs get squished.

I've been told NOT to expect an all-clear.  Not because they expect something horrible.  Just because there is no baseline anymore.  I've had surgery on both sides and, so, the images will likely show scar tissue; none of my old mammograms will mean anything. 

I've been told to expect "It's probably okay."

" ... probably okay."

You know what?  That sounds a hell of a lot better than "little bit of cancer."  I'll take it.

*fingers crossed* please 

Saturday, October 15, 2016

I'm Rounding Third and Heading Home ...

Long, long ago ... in what seems a lifetime away, I got a bit of bad news and my life began to change.  Over nine months ago, I was reeling from a diagnosis of breast cancer and living the surreal life that comes with it.  And when I found out the date of my surgery, I posted And Here's the Wind-up  because, hey, what better analogy for cancer treatment than baseball, right?

Both seem to take for frick'n ever and include long periods of boredom only slightly mollified by food and drink along with a series of side-shows attempting to entertain you as you wait for each pitch, waiting for something inspiring to occur.  Or, as the player, you try to keep your eye on the ball, some seem to fly high and wide, others nearly take your head off, so you dig yourself in deeper, take a deep breath, and wait, hoping to crack that little m******f***** out of the park.

My personal trip around the bases included a dash towards first with my lumpectomy, then a frantic dash back to first as an infection required a second surgery.  I scrambled next towards second base - mired in chemotherapy - and took some nasty hits that continue to bother me today.  Someone should really knock that second baseman on his ass, maybe fine him for unprofessional conduct.  I limped toward third base - radiation - and started to see the end in sight.  A horde of third-base coaches stood waving me on home.

And here I am, straining to make it to home base, that initial ball o' triple negative breast cancer still (hopefully) flying out into the blue to be hopelessly lost forever.  Pretty sure I broke the bat on that one.  My long, soon-to-be 11 month rounding of those cancer-ball bases will continue this November 11, 2016, when I go into surgery again. 

This is the "matching set" surgery I was so excited about in the wind-up post.  After the lumpectomy and the "revisioning" surgeries last January and February, Frankenboob continues to recover.  Now it is time to re-create some symmetry between the girls. 

No, I won't suddenly be needing to don DD-sized brassieres.  Let's leave Frankenboob alone, shall we?  She's literally just gone through the fires of radiation for goodness' sake.  Her game is over - send her to the showers.  In fact, let's send in another runner for her, okay? 

After some tussles early on in the game that included multiple mammograms, ultra-sounds, and a particularly nasty MRI-guided series of biopsies, Righty has been sitting the bench, resting. 

Now it is up to her to finish this game.  She'll start for home November 11th and she won't emerge unchanged. 

Recovery will take roughly three weeks according to Dr. Livingston (I can't make up ALL these names).  Dr. Andrew Livingston will handle this last surgery for me.  As I reminded him that it only took me two weeks to recover from the creation of Frankenboob (and another 1 1/2 weeks following the "revisioning" surgery), he wisely directed my attention to the months of chemotherapy and radiation in-between and suggested that it just might take a bit more for me to bounce back this time around. 

Right. True.  Players feel a tad different at the end of a game than at the beginning. 

I'm nearly three months out from chemotherapy and one month out from radiation.  Already, I find myself looking back on those months and wondering how on earth I made it through it.  We are SO much stronger than we believe.  I don't believe anyone truly knows their own strength until it is tested.  My hair is back - full and thick ... and gray - and grew as if it had been struggling wildly against a barrier that has suddenly been removed.  The persistent cough that plagued my end of chemo ended in early August. My nails are slowly (agonizingly slowly) healing and growing. 

Treatment has certainly left me weakened, with scars and continued pain, but the important part is that it left.  Treatment is over.  Each day, I look for new ways to hasten recovery.  Currently, that means trying to figure out what I can do for the continuing pain of neuropathy that will not involve medication.  As you can imagine, I'm kind of tired of medications, of putting anything in my body that includes some long list of possible side effects that invariably ends with ... "oh, and death."  The pain and my fatigue should continue to improve over the next weeks and months.

If I were to ask one more thing from all of you who have been so incredibly supportive during this year, it would be for prayers, good thoughts, and hope that by next July (or sooner .... so much sooner), I will be free from the pain of neuropathy.  I am told that if I continue to have pain a year after chemo has ended, it will likely be lasting pain. 

And, yeah, that would suck. 

But first, it will soon be time for a transformation - the creation of Bride of Frankenboob. 

[Yes, I know I'm silly. I prefer that to whiney.] 

I know I've said it before, and I'll continue to say it:  Thank you.  Thank you for your support.  For your prayers.  For your notes of encouragement.  You overwhelmed me with support when I needed it the most. 

If only every person who faced this deadly ... game had such fans.  Such teammates and coaches. 

[See how I steer this back to an American pastime?  My least favorite American pastime.]

I'm going to cross home-plate even if I have to dive for it.  And then I'm going to rest, ice down some joints and muscles, and head to the after-party. 


Reminder: if you've stumbled across this through a search for breast cancer, chemotherapy, radiation, neuropathy, or any other such word because you're looking for answers, for hope that you can do this or that a loved one can make it through treatment, please feel free to contact me via comments or email.  There is immense hope.  You CAN do this.  Your loved one CAN handle it. 

As a dear friend said long ago: Life is Good. 

If your search was for baseball, well, there is hope for you as well. 

It's called basketball.

Tuesday, September 13, 2016

The Radiation Queen

It's a queen. ~ Ripley, Aliens 3 (1992)
At least, that's what I thought when first confronted with the massive radiation machine on my first day of treatment.  In my mind, I saw this:

The Queen, ready to spawn thousands of aliens in Alien Resurrection (1997)

In reality, I encounter this brightly lit machine each weekday of my five weeks of radiation treatment:

The Radiation Machine aka The Queen
In quick recap of my 2016, I was diagnosed with a "bit" of triple negative breast cancer (TNBC) in January 2016 and ended that month with a lumpectomy/breast conserving surgery wherein my surgeon, the wonderful Dr. App, removed my tumors, moved around my breast tissue and relocated my nipple to form a slightly smaller yet relatively unmolested left breast.

I call her Frankenboob.
My right remains jealous.

I endured AC/T chemotherapy from March 3, 2016 through July 19, 2016, and am still recovering from the side effects.  My chemo port was removed August 5, 2016, so that I'm no longer a member of the Borg. And the following week, I met the "Queen" above to begin my daily radiation treatments.

I have one each day, Monday through Friday.  Do you see that table with what looks like molding along the top?  Here, let me show you a closer picture:

Radiation Table

Under the sheet is a "bean bag" that has been molded to my body.  During my initial appointment - my simulation appointment - the technicians placed the large bag underneath me and, once they had me in the desired therapy position (arms above my head), they sucked all of the air out of the bag in order to create a "mold" for my body to be used at each treatment.  It helps to ensure that I'm in the same position each time they aim that little beam.  As do my four new tattoos.

What? Tattoos? That's right.  I told the tech with the needle that she was giving me my gateway tattoos.  I'm sure this will lead down a path of elaborate sci-fi references and jaunty looking owls covering my pale flesh. 

That desk lamp looking contraption above me is actually a breathing tube.   

Right.  What?  A breathing tube?  Don't I just close my eyes and relax while any possible remaining cancer cells are zapped out of me?

Nope.  See?  I put my mouth around that large blue piece. 

Go ahead, try to convince me that a man didn't design that thing.

In the end, I look kinda like this:

Actually, I look exactly like this since this was taken by one of my technicians.  See?

Yep, that's me looking uber comfortable, right? Not at all like I'm being used to incubate an alien.  Actually, put me in a vat of water and I'm a bit more Luke Skywalker from Empire Strikes Back recovering from nearly becoming a snow monster's popsicle.  

Anyway, this is a fully interactive radiation.  Because my tumors (the main and its mini-me) were located in my left breast, my radiology oncologist opted to have me use the breath-hold technique when receiving radiation treatments. At that first appointment, they had me use the breathing tube to inhale as much as possible and measured my lung capacity.  Then they had me do it again.  And again.  After three large breaths, they used these measurements to find a range representing 75% of my lung capacity.  During treatment, I inhale until I reach that 75% range then hold my breath as the actual treatment takes place.  This creates extra space between the tissue being radiated and important parts like, oh, my heart.

But how can I know when I've reached that 75% range?

Well, as you can see above, along with the breath tube and tiny clamps closing off my nostrils, I also wear goggles during treatment.  Goggles that show me the computer screen being used by my techs.  And this is where it becomes like a video game.  A ridiculously easy video game but, really, those are the only kind I enjoy.  During treatment, when I look through those goggles, I see a screen like this:

Radiation Mock PC Screen - Breath Hold
The red line moves across the screen from left to right as the tube monitors my breathing.  First, I aim for my exhale to end within the gray bar across the bottom.  Once I've done that three times in a row, the tech is able to press the big green button, which causes the green bar to appear on the screen and I inhale until the line is within that green bar; then I hold my breath.  I hold my breath until the big red button lights up.  I usually do this three times during a treatment.  The first two times tend to be about 20 seconds each with the third coming in at about 10 seconds. 
I believe the longest I've held my breath doing this was during the simulation appointment at 34 or 35 seconds.

Now, before and between each of those breath holds, the radiation machine moves around me as my table also moves, putting the machine and me in specific positions for the radiation.  That circular part of the machine over my face in the picture?  That typically begins along my right side for the first zap then moves to my left side, down low, for the following two.  Three breath holds and I'm done with a treatment.

One treatment each day for 25 days.

As of today, I've finished 23 treatments.  My last ... LAST ... radiation treatment will be this Thursday, September 15, 2016. 

My skin held up really well until about treatment 21.  Sunday night, I realized that a large blister had formed and broken in the treatment area just under my left arm.  Fun times.  As of last night, other parts of the treatment area have started to peel like I had a really stupid time on spring break in Florida.  I cannot wait until Thursday.

My friends these days are called Aloe Vera (the clear kind) and Aquaphor.  I apply them generously and often.  Enemies include heat and ... well ... anything touching the area.  Since last Thursday, the worst hoodlum is called "bra." 

Thursday really cannot come soon enough.  Someone else can meet the Radiation Queen and play this video game of zapping cells.

I'm ready for Ripley 2.0 to head on down to earth.

Sunday, September 4, 2016

Brave and Inspiring

Not today.

Just. Not today.

You will hear the words "brave" and "inspiring" a lot during your treatment. You likely said them yourself when it was a friend or other loved one going through the same fight.

"You're so brave."

      "You inspire me."

                   "You are amazing."

  "You're so strong."

It's all a part of that support I've mentioned before. That immense support that can sometimes seem overwhelming and so unexpected.

You focus on recovering from surgery. You do your best to take care of yourself during chemotherapy. You learn all that you can about radiation. Each day, you take that next step forward.

And, if you're like me, you often don't feel all that strong.

You're more amazed at the time that's gone by than at yourself.

Inspiration? Bah. Brave?

Well, I sometimes feel brave to be seen in public with my cancer-altered body. Does that count?

If you're like me, there will be days when you just can't.
You can't be the brave, strong, amazing warrior that your world expects. You feel incapable of positivity. At this point - my point - you've finished chemotherapy but chemotherapy hasn't finished you.

                                   It just can't quit you.

Many side effects have blissfully gone away and your body is sprouting hair once again and often in places you really wish it wouldn't. Nose bleeds have ended and coughing is lessened. But ... fatigue continues and even worsens. Your toenails have yet to fall off and, what's this? Why are they itching?
What seems a minor inconvenience quickly invades your life.  Itch.

                              Itch! Itch! Itchity Itch!

Still managing to ignore it? Well, let's add blisters. Many, watery, itching, burning blisters.
Jesus - Are these the elephant man's toes?

What. Is. Happening!?

Ask your doctor.  Perhaps, like me, you'll find out that it is "just part of the process." 

On that day, my friend, you'll not feel brave, or amazing, or inspiring. You'll feel like hitting something. Hard. Starting with the person who said, "just part of the process."

You'll feel like crying a lot. Except that, well, crying comes with a runny, stuffy nose and you'd rather not.

You might want to talk to someone. To vent. But ... this isn't brave. Or inspiring. You don't want to burden your loved ones when there's nothing they can do and little they can really understand. 
I remember this. I remember seeing this is my friend Robin's eyes but not knowing what it was exactly.  I'd ask how she's doing and she'd smile and say fine. I knew it wasn't fine. But I also didn't know what to say or what I could do for her. Looking back, I wish I would have simply said, "I wish there was something I could do for you."  But I digress.

Hopefully, like me, you've found a support group - whether it is live or online - it's important to have a group of people to whom you can vent. Share worries. Share experiences.  And sometimes they are your best lifeline. A group of people who are going through the same or similar treatment are invaluable. They know what you're going through. If they're not able to give suggestions for coping, they understand completely and sometimes that is the most needed thing in your life. True understanding. Acceptance of your bad days.

The days you say ... not today. There's no bravery, no inspiration.
Just. Not today.

I'd love to end this by saying that tomorrow is another day. That all will be well. That the sun will come out or some shit like that. But I'm waiting for my blistery toes to start driving me insane once again. I'm realizing that the holiday weekend is nearly over and I've neither visited friends or family nor gotten loads of work done. 

I've done ... really nothing.  Actually, wait, I've managed not to draw blood scratching. 

Right now, that's pretty fucking impressive. 

Screw brave and inspiring. 

Sunday, August 28, 2016

It's All Too Much

I can't believe that over a month has gone by since my farewell to Nurse L.  Time has flown since that last chemotherapy infusion on July 19th.  I saw my beloved Struts again in Cincinnati and am already half-way through my radiation treatments.  Most knowing me would have thought I'd have popped up a "final chemo" blog post within a day or two of that treatment.

I mean, really. FINAL chemo. That's huge. One step closer to being finished with treatment. 

All I can say - what I keep coming back to in terms of a "why" I didn't is - it's all too much.

Chemotherapy is a bitch.  You start out all "I'm gonna kick cancer's ass" and, at the end, you crawl to the edge of that boxing ring and barely allow the ref to raise your hand in victory before falling indelicately over the side and passing out.

The side-effects of chemo are cumulative.  You start out with some nausea and fatigue.  Then you lose your hair (the one everyone recognizes).  Then your feet hurt, your nose bleeds, your mouth tastes awful and you have to use special rinses to curb mouth sores.  Your digestive system is just pissed, and your toenails decide to chuck it all and give up.  Each side effect builds on the one before it.  And throughout all of it, the fatigue increases.

Walking into that building on my final chemotherapy day was a bit surreal - as this entire experience has been surreal.  Honestly, I think that is how I've coped; I'm focused on getting through this year and every step is surreal.  My stepmom, Pam, had come up again and went with me one final time.

I hadn't been in my chair that day for long before a few of my coworkers showed up with balloons, donuts, a cake, an awesome gift certificate to one of my favorite restaurants, and champagne.  God bless them.  Dan, Bonnie, Kim and her girls, all surprised me.  And then, when I returned from a bathroom break, I found my sister Linda (who was supposed to be back at work in Ohio) and my Dad; they'd driven up to surprise me, too.  And just when I'd hugged those two, I turned to find my sister Jenny (who was supposed to be back at work in Indianapolis), my Mom, and my aunt Berb had made the trip as well - AND brought her Texas sheet cake with her.  Too much. 

The family also brought up a pink poster with their hands drawn on it, waving goodbye to cancer. 

The Original Wavers - #ByeCancer

I later took the poster to work and had more people sign it.  It represents just some of the people who have supported me in so many ways during these months. 

Too much.

My sister Glenda stopped by as well.  And one of my bosses, Jim.  Meanwhile, I just tried to take it all in - and failed miserably.  But, honestly, that was probably for the best.  Again ... it's surreal. 

It was a gathering that I wasn't expecting and it meant more than I can adequately describe.  Yet, leaving the infusion center that day felt somehow anti-climactic.  You expect to be overcome with emotion.  You anticipate a feeling of victory or satisfaction somehow.  But you've just had another chemotherapy infusion and what you feel is a combination of steroids and poison coursing through your veins meant to rid your body of any spare cancer cells.

Leaving the building isn't the end of chemotherapy.  Your fresh dose has yet to begin to wreak havoc with your body, to add its own side effects to the mountain that has been accumulating the past five months. 

To try to absorb and recognize at that moment the enormity of my last chemotherapy infusion was to potentially fracture my carefully constructed "let's get through this" fa├žade.  Nope. 

Too much.

I think that is why it has taken me over a month to finally sit down and write this post.  And, frankly, my body is far from recovered from the side effects of chemotherapy.  My feet hurt, some nails are clinging on stubbornly despite the fact that there is no saving them now, and that fatigue.  Oh, the fatigue. 

I'm beginning to believe that "Fatigue" is the very worst "F" word out there. 

But my cough is finally gone, my nose bleeds have stopped, I can take deep breaths once more, and my hair - or at least the "advance team" for my hair - is about half an inch long now. 

If you're in the midst of chemotherapy right now or getting ready to begin it, as I've said before, you'll get through it.  I did.  Take it one day at a time.  Address side effects as they come up.  And rest.  Hydrate and rest.  Accept help.  Trust. 

You'll get through it and, in about a month or so, you'll look back and wonder how you did. 

Tuesday, July 19, 2016

Thank you, Nurse L

Nurse L,

That first day back on March 4, I waited anxiously to find out who my nurse would be for chemotherapy.  I remember worrying about whether I would like her (knowing only her name).  This would be the person who would answer my questions, calm my fears, handle the dangerous drugs - quite literally holding my life in her hands.  She would watch me closely for signs of the allergic reactions that could kill me.  I can't imagine going through this hell relying on someone I did not trust.

Thank God they gave me you.

You have been a joy, a balm, a voice of reason during a time when it is so easy to spin out of control.  You've listened calmly to each of my questions, anxieties, oddities, and answered them all. 

Do you truly understand just how important you are to the people sitting in those pods?  Our chemo nurses are our lifelines and often the first to get our questions - our real questions.  You hold our hands through one of the most difficult times we'll ever have in our lives.  Our hopefully long long lives.

You are loved.
You are respected.
And I am so incredibly grateful to you for helping to save my life.  You realize that is what you do each day, right?
You save lives.

Thank you for making the choice to become a nurse. Each and every one of your patients is blessed to have you.  And I am proud that I have been among them.

I wrote the above in a thank you card today.  There have been so many people who have been essential to my treatment but some do stick out more - those bright lights amidst the gloom - and Nurse L was one of them.  All of the nurses I've encountered at Lemmen-Holton have been fantastic.  Our community is truly blessed to have them.

Oh ... and did I mention:  TODAY WAS MY LAST EFFIN' CHEMOTHERAPY!!

I'll write more on that later.

But now ... we dance!