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.