Final Radiation

Giving a nod to the Big Guy on my last day

“Have you been given your discharge instructions yet?” the nurse asked me as she handed me a slip of paper with those very same words on it.  After I shook my head, she sat down and went over the Do’s and Don’ts of radiation after care.

“Whatever you do -do NOT just pull off those stickers!” she warned.  “I watched a lady who rang the bell on her last treatment then pull off a sticker only to have a bunch of skin come with it.  The blood on her chest was some major rain on her big day.”

Dang!  I assured her that I would let the stickers come off naturally.  I didn’t ring the bell after my final treatment.  Sure, treatment wasn’t comfortable but it was a FAR cry easier than chemo.  Besides, no techs or nurses even accompanied me back to the lobby where the bell hung.   I had no one with me during this treatment and not even the receptionists knew my name.  It seemed almost…pathetic to ring this bell.

Radiation was certainly different than chemo in many aspects.  The biggest pain for me was the drive.  Chemo was a mere 7 minutes away and done weekly.  Radiation was an hour away daily.  The time and expense ($80 in peach pass tolls!) alone made this treatment a strain on my life.  I was glad that I did not have to burden anyone else with accompanying me.  Chemo was a few hours in a chair chatting with super friendly wonderful nurses who took a genuine interest in my life (or at least they fake it really well!).  Radiation was a few minutes with the techs then 10 minutes alone on a table.  In and out.  Impersonal.

Still, if I had my druthers, I would have never experienced either treatment.

I was told that my skin will “continue to cook” by a cancer sister.  The nurses stated it as “the cumulative effect of the rays will continue to deliver treatment” so I should be prepared that my skin will get worse before it gets better despite having no more sessions.

I’ve seen pics online so I can state with confidence that I really should not complain.  So take the rest of this paragraph in the spirit of educating others, not whining.  You can see in the pic that my skin looks like its sunburned in a square shape.  It’s kinda freaky how precise this machine is but I’m grateful that it is!  The pain really only began in the last week or so.  But its nothing I can’t deal with.  I have been religious with the Calendula cream and will take an Ibuprofen when the pain gets to me.

I am now in possession of my Bolus – the gel cover that was used to redirect the rays closer to the surface of my skin.  You can read more about it’s purpose HERE.  They cannot re-use them and I’m sure my insurance paid a pretty penny for it, so I requested to take it home with me.  Apparently I am not the only person to ask.  I was told another lady uses her to cool her skin after treatment.  I thought was a wonderful idea so when I got home, I put mine in the fridge.

The next day when I got home from treatment, I took the chilled Bolus out of the fridge and laid down on the bed.  I gently laid the gel on my chest and just about jumped out of my skin!  Holy cow that was COLD!!  It was like slowly edging into the cold water in a lake.  Once it hits your belly you can’t help but to squeal.   Brilliant idea in theory but not so great in the execution.  It still sits in my fridge, unused.

I did have a wonderful experience on my last day of treatment though.  Winship is a very busy cancer center.  The radiation department has several rooms of different machines designed to spit death rays at all sorts of different body parts.  The waiting room is always full.  But treatments are relatively quick so the waiting room turnover is pretty fast.

Still, most people have their appointments at the same time daily so the faces get to be familiar after a while.  Fortunately, none of us spend that much time waiting as the clinic has got the process down flat.  As I was leaving one day, there was an Asian lady and her husband that got into the same elevator as me.  I recognized them from the waiting room, but since no one talks to anyone else in there, I just smiled and said “Hi”.  They were really nice and said they had seen me there several times.  I told them I only had a few treatments and was looking forward to ringing that bell.  The doors opened and off we went.

Well, today this lady came into the waiting room alone.  I looked around for her husband and figured he must be in treatment at the moment.  She came directly over to me and sat next to me.  She handed me a Chik Fil-a bag that smelled delicious.  She congratulated me on my final treatment and said hers was on the 18th.  I was at a loss for words.  Not only because she remembered my last day and had gone thru the trouble to bring me something to celebrate it, but also because she did not look like a patient at all.  She literally glowed with life.

I thanked her and asked her about her treatment.  She had no stickers because she was there for a tumor near her brain/pituitary gland.  It was a recurrence and inoperable.  She was hopeful that radiation would do the trick.  Just then my tech came to take me to the doc.  I barely had time to give her a hug and wish her luck.  Hopefully, I would see her again on my way out and get her name.

In the patient waiting room I opened the bag and discovered a card was included with the breakfast.  Her hand written note put a tear to my eye.  She told me that I inspired HER with my calm and the “you got this” look about me.  She told me that her family prayed for me – a total stranger.  I was so touched.  I was humbled again at how God uses people to touch others.  I wanted to tell her that if I had that look about me -it was ALL because I know that GOD has “got this.”  I wanted to tell her I thought SHE was amazing for reaching out and that SHE inspired me to be more outgoing with my faith.

But alas, I did not see her again.  I take solace knowing that she is a Christian woman and I will see her again some day -hopefully a LONG time from now.  I will pass along the pamphlet she included in the card that contained Bible verses to someone else I encounter who may need the knowledge we already have and cling to.

It really was the perfect ending to this chapter.  Thank you Efee!

On the way out of the clinic I got a call from the clinical trial nurse who received my information from my oncologist.  She will be sending me more information on the trial and a consent form to sign.  I’ll explain all that in my next post.

Tonight I celebrate!  And I need to put some lotion on the areas under the stickers I took off.  Yeah -yeah…I know….

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Cancer induced losses

8 unexpected losses I experienced due to breast cancer…

After hearing that “you’ve got cancer” diagnosis, your mind spirals immediately to the potential loss of your life.  Of course no one likes to talk about that or even THINK about it, but anyone whose heard those fateful words knows that it’s something we all have to consider then figure out how to overcome.

But there were numerous other unexpected losses that no one prepared me for.  If you are a newly diagnosed patient it may be helpful to know what potentially lies ahead so you can be ready and even take measures to avoid if possible.  This is by no means an all inclusive list.  I encourage my cancer sisters to post their own losses in the comments.

Loss of sleep…

Of course after you hear the news that you have cancer, there is usually an immediate loss of sleep as your mind goes into overdrive trying to digest it all, learn about treatments, find doctors, inform loved ones…etc.  This will eventually die down as your diagnosis becomes your “new normal”.  What I wasn’t expecting was how chemo would disrupt my sleep cycle, how radiation would make me tired and nap during the day -thus making sleep at night harder to find, or how chemo-induced menopause would give me night sweats so badly that I would wake several times a night drenched and kicking off my covers in the dead of winter.

Loss of hair…

Everyone is well aware that most ladies lose their hair during chemo.  I was prepared for that.  What I wasn’t anticipating was losing ALL the hair on my body!  I mean ALL.  The upside to this was time saved not having to shave my legs or pits and that I now know what having a Brazilian is like without suffering the mind blowing pain of GETTING that wax job.  The downside was losing my eyelashes and brows.  I never realized that your eye lids tend to stick together when you blink without lashes or that lashes aren’t there to look pretty but to keep dust and stuff out of your eyes -which happens WAY more often than you think.  Thankfully, all this hair does come back so don’t throw out all your razors just yet.  And learning to strategically apply makeup can cover up the facial hair losses.

Loss of self esteem…

As a result of the above loss, many women experience a serious loss of self esteem as well.  There were days during chemo that I couldn’t even bear to look at myself in the mirror.  Sure, everyone will tell you that you shouldn’t be so down on yourself and that the hair loss is temporary but I think the majority of my cancer sisters will agree that knowing this and feeling this are two different things.  Even months later, as my hair grows out and I am dealing with that “yucky growing out stage” I don’t feel very attractive.  Losing one’s breasts is also a major deal for many of us too.  They are a huge part of our femininity and most women’s clothes are designed to accentuate our bosoms.  Its hard to lose those curves.  It’s hard to look at ugly scars.  Many of us lose our confidence as well since our looks are simply a big part of who we are.  Right or wrong -it is what it is.

Loss of appetite/ taste buds…

Having no previous experience with chemo, the loss of taste buds was something that was completely unexpected for me.  Sure, most people have heard horror stories about how chemo patients spend hours vomiting after treatment.  This never once happened to me.  The meds that go along with chemo today are very good at controlling potential side effects.  Some people do experience nausea nonetheless.  But the chemo itself will destroy some of your taste buds making food seem unappealing and taste differently.  Take heart!  They DO come back and sucking on ice chips during chemo will help to protect them.

Loss of modesty…

I used to be called a prude back in the day.  Now I don’t think twice before whipping my shirt off in front of people -males included.  After having numerous male doctors stare at, draw on and cut into my chest, I lost any sense of modesty I had about my upper body.  losing my breasts made my chest look like a mangled mess of skin – no longer something feminine at all.  Even after the reconstruction, the loss of sensation in the new boobs gives me a surreal feeling -like they aren’t even mine.  And since they are the work of a physician and not my God-given sweater puppies, I usually don’t have a problem showing them to people -as long as there is a medical reason anyway.  No Girls Gone Wild for me!

Loss of memory…

Anyone who has gone through chemo will tell you that chemo brain is a real thing… if they can remember what it was like.  Chemo’s job is to kill off fast growing cells.  This is why things like hair, nails and taste buds are affected.  Brain cells are also affected -especially the short term memory ones.  I was in a meeting at a cancer support group once where we went around the room introducing ourselves.  By the time it was my turn -I had already forgotten the first 4 ladies’ names.  When I said so, they all laughed in solidarity and we decided that name tags were in order from then on.  I have forgotten about food on the stove, conversations I had with people the day before and the reason I walked in to a room.  It’s harder for me to pull up memories from the past or even words I used to know to describe things.  Granted some of this is just indicative of getting older, but it became more pronounced during and after chemo.  It’s gotten a little better months later, but some ladies tell me they STILL suffer this side effect years later.

Loss of money…

Medical bills.  Need I say more?  In addition to that obvious pocketbook drain, I wasn’t prepared for the other expenses incurred after my diagnosis.  Things like gas to drive the myriad of doctor appointments and treatments, wigs and other head coverings, supplements and other alternative treatments are extra expenses that insurance doesn’t cover.  For many, a change in diet also puts a strain on the budget.  Eating clean isn’t cheap!  You may need to buy new clothes due to weight loss or gain (depending on treatments and diet changes) or as a result of your changing chest size.  Thankfully, I have a wonderful support group that helped me with these unexpected expenses.  Try not to stress out about the money thing.  Like becoming a new parent, you find a way to work it out as you go.

Loss of time…

Of course the first thing a newly diagnosed cancer patient thinks about is the potentially shortened lifespan.  But once you deal with that and realize that many cancers are very beatable these days, you will find that you now have to deal with the reality that you will still lose time out of your life.  Hours lost due to treatments, doctor appointments, travel time, time in surgery, recovery time, extra naps and even time standing in a room trying to remember what brought you there.  I’ve lost time that I could’ve spent vacationing or visiting family out of town.  They say that time lost is something you can never recover but before this post starts to get you down, let’s think about the things you can GAIN after diagnosis…

Many of us never realized just how many people care about us until you “get sick.”  I was astounded at the outpouring of love, support and prayers from people as my cancer news spread.  Some from people I would never have expected.

I also gained many new friends.  The solidarity from my cancer sisters is precious.  They have helped me get through these tough times, given me advice and hope for my future.  Be sure to join support groups -you will be glad you did!

I gained all sorts of new knowledge as a result of this diagnosis and a new appreciation for life.  I gained a stronger faith and the realization that I can use this disease to help others in numerous different ways.

But most importantly, I gained the realization and acceptance that all the above losses were lessons to me.  They were (are) things to get though that made me a stronger person.  That taught me how precious each day was.  Things that gave me perspective and grew me as a person.  Not all losses are bad.  We will ALL lose our lives some day.  It’s inevitable.  But not all of us are given the opportunity to gain an appreciation of each morning we wake up or the time to go repair torn relationships or make peace with God.

Life is what you make of it.  Pay attention to your own losses and gains.  You might find a way to make peace with your diagnosis too.

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Changes since Diagnosis

Hearing the words “You’ve got cancer” absolutely WILL change you.  It’s inevitable.  Not only will your body and mind go through changes, but your soul/morality/spirit will likely change as well.  Below are some of ways that cancer has changed me.

I accept that there is no ONE right treatment.

When first diagnosed, I was all about natural and alternative medicine.   After diagnosis I was basically TOLD I needed surgery which I blindly believed and went forward with.  After the initial shock wore off and the rushrushrush to make a decision passed I was boldly decided to move forward with my natural alternative treatment to “make sure” the cancer did not return.  My readers know how this turned out.  The tumor returned in less than three months.

My faith in alternative medicine remains as I firmly believe that the change of diet and the various supplements I continue to use have helped strengthen my body and allowed me to “breeze” through both chemo and radiation.  I’ve seen some cancer sisters beat their disease using only natural treatments but I have also seen numerous sisters using only alternative methods continue to get more sick and sometimes lose the battle altogether.   There are just far too many mitigating factors to be able to say that any one treatment – conventional or alternative -is going to work for everybody.  Yes, big pharma is still the enemy but I no longer assume all conventional doctors are “in on it”.  Most just really believe that they are doing the best they can to heal you.

Exercise is no longer something just to lose weight.

Yeah yeah- this is something I should have known all along, but getting exercise was never a priority for me.  It’s just not fun and usually made me hurt afterwards.  Luckily, I had begun exercising over a year before I was diagnosed in order to lose weight.  So continuing to get my daily walks in was no big trouble for me.  What I discovered was that no matter how tired I became from the chemo or how much of a struggle it was to lace those shoes up and get off the couch, I saw the actual lab evidence of how the exercise raised my blood counts and boosted my energy.  It may seem counter-intuitive to spend precious energy when your body seems to be telling you to rest, but getting daily exercise in really IS for your overall health – not just to work off those Doritos you ate.

Your self esteem WILL suffer.

I’ve been told numerous times how strong I am and how amazing my attitude is…blah blah blah.  Seriously -thank you!  But most of you have no idea what goes through a girl’s mind and heart when dealing with all the breast cancer stuff.  Everyone wants you to be strong so you hide the tears and plaster on a smile.  But every cancer sister has cried looking at herself in the mirror.  Losing your hair, your brows, your eyelashes, and often a breast or two cuts your esteem to the core.  Some of us lose our pretty skin by the ravages of chemicals and radiation.  Clothes no longer fit right, muscle tone is lost, bags show up under eyes, nails become brittle and often disfigured.  I lost nearly all of my upper body strength and now have hanging skin all about my mid-section.

I often chastise myself for feeling ugly.  Be grateful you are alive, Gail!  Be grateful you started out with a pretty face.  Be grateful you know how to use make up.  Be grateful you can afford wigs.  Be grateful your hair IS growing back!  It won’t look butch forever…etc.  I am also so grateful to have people in my life who try to pump up my flailing ego.  Yes, caring so much about one’s looks is a bit shallow, but it just IS and that’s ok.

But I know some cancer sisters who lost their boyfriends or husbands over this looks thing.  Men who lost their love and/or passion when their woman suffered the side effects of treatments.  “I’m sorry baby, you just don’t turn me on anymore” , “I’m afraid to touch you now -you seem so fragile” , “you’re always sitting on the couch or at the doctor” , “treatment made you you gain (or lose) weight”… etc.  I’ve heard stories of how men have failed horribly at supporting their woman.  Sure, it’s easy to say that one should be glad to be rid of a man like that, but it’s still a massive ego killer.

Sure, men are visual and looks matter to them.  I get that.  But you know what?  Your woman is fighting just to stay alive.  She is fighting her own esteem battles.  Now is the time that YOU be strong and suck it up and tell her she is pretty even if you don’t think she is.  Look past the broken boobs, the bald head, the sickly skin and see the amazingly beautiful women underneath that needs you to touch her, hold her, make love to her, tell her she’s your everything.  Give her a reason to keep up the battle.  Don’t bail on her now.

There is no such thing as “too busy”

Today’s world is definitely more time consuming than the olden days, but I’ve come to realize that “being busy” is really no excuse.  I am busy too -yet always make time for my treatments and doctor appointments.  Getting cancer has forced me to re-arrange my life.  It changed my priorities.  Facing mortality has made me put spending time with people at a higher priority than say…my job, cleaning my house, my hobbies…etc.  If Cousin Jerry calls and wants to meet for coffee but receives the response, “I’m sorry,  I’m swamped with work and the kids right now” what you are really saying is “I’m sorry, you are not the priority right now.”

I’m not judging and I certainly do not expect that other people put me as a high priority in their life.  I just realize now that when someone does put me as a priority -its something to truly cherish!!

STRESS -it’s just not worth it!

“Let it go Phil”  It’s my new mantra.  Stress is the true cancer creator.  I’ve talked to hundreds of people in all different walks of life.  Some were smokers, overweight, and ate the typical American unhealthy diet.  Some were health nuts, avoided all toxins, and exercised daily.  Most were somewhere in between.  Yet they all got cancer and every one of them questioned WHY?  Why is it that some people go through their entire life smoking and never get cancer?  How “fair” is that?

We may all have different body make ups, chemistry, cells, genes…etc. But we are all subject to the effects of stress.  Stress lowers your immune system and shortens your DNA chains – making it more likely for a cell to mutate.   There are numerous different ways to stress your body.  Most people think our jobs, horrible bosses, traffic, family issues,debt and so on are stress but bad diet, toxins, chemicals we ingest and come in contact with are culprits too.   We are constantly bombarded with stress.  Some people are genetically more capable of handling it.  Some people take measures to reduce it.  Some people are just plain lucky that it doesn’t kill them.

But EVERY. SINGLE. PERSON. I’ve talked to who was diagnosed with cancer said their diagnosis came after a particularly bad stress event.  One’s mother had died, another went through a bad divorce, another was raped, another had to move cross country after losing her job.  My own event was living with and subsequently divorcing an alcoholic who suffered with PTSD.  This revelation made me re-examine my life and my current stress levels.  I now strive to let go of as much as possible and then take measures to relieve what is left.

Will it matter tomorrow? Or next week?  Let it go, Phil.  Perhaps that man who just cut you off on the freeway is frantically trying to get to his dying mother or his daughter who was just shot in a drive by so let it go, Phil.  That cashier who is winning the record for being the slowest EVER may have arthritis so bad she can barely see past her pain but had to come to work to feed her grand babies so who cares that it added an extra 10 minutes to my shopping trip.  Let it go, Phil.  If I can’t make up a potential stress relieving excuse then I employ the “just forgive and let it go” method.  And if all else fails, a stiff drink, an extra walk, some yoga or meditation or a good belly laugh with my friends will usually do the trick.

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I’m sure there are many other ways I’ve changed since hearing the cancer news but this is enough for one post.  I think these changes have all been positive and made me into a calmer, nicer person.  I’m letting go of the know-it-all girl, usually too busy to make time for people who let stress get the best of her.

If you’ve got time, I’m happy to pick up the phone and find ways to help belly laugh your stress away too.  xoxo

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1/3 complete

“When you’re ready, take a deep breathe and hold.”

Her voice is smooth and soothing.  I have heard Jodi say these same exact words at least a hundred times now.  I swallow, then fill my lungs with a healthy dose of oxygen, close my throat and freeze.

BBBBZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ

I now keep my eyes closed during treatment simply because there is nothing to look at and it’s easier to keep my mind from messing with me while I’m trying to remain completely frozen as the rays of radiation are bombarding my body ever so closely to my heart.  The loud buzzing stops.

“You can breathe.”

I slowly let my breath out, enjoying the release.  It’s like a cleansing yoga breath, I tell myself.  The breath holds are not always the same length.  The machine makes it’s mechanical move noise as the techs put it into the next position. Wwhhirrrr

“When you’re ready, take a deep breathe and hold.”

I try not to picture exactly how these rays are hitting my skin as I take another breath and freeze.  BBbbbzzzzzzzzzzzzzzzzzzz.    This buzz seems to be lasting a way long time.  Suddenly my lungs feel like they are on fire and if I don’t take a breath my entire body will jerk. zzzzzzzzzzzzzzzzzzz.  No, no Gail.  You are fine. This hold is no different than the others.

“You can breath.”

It’s a struggle, but I slowly let my breath out instead of gasp.  Seriously, none of these breath holds are any longer than 15 seconds.  The machine slowly whirls into its next position.  I wiggle my fingers in an attempt to force some blood into them.  I already can’t feel my thumb.

“When you’re ready, take a deep breathe and hold.”

Though I am in a big friggin hurry to get my arm out of Guido’s vice grip, I wait until my next natural breath exhale before I suck in air and push out my chest.  BBBBzzzzzzzzzzzzzz.  Funny, as a singer, I was taught to breath with my belly.  Belly breathing is actually the healthiest way to breath as it draws oxygen deep into your lower lungs.   Belly breathing is what you naturally do when you take those super deep cleanings breaths that feel so amazing.  Most people breathe with their chest.  If you place one hand on your chest and the other on your belly -which moves more when you breath?

“You can breath.”   Wwhhiiirrrrr.

After my third or fourth treatment, one of the techs asked me if I did yoga.  I told her I DID -but it had been about a year since I’d been able to due to my numerous surgeries.  Then she asked me if I was a runner or swimmer.  ???  I chuckled and said, “Do I LOOK like a runner?”

“Take a deep breath and hold.”    BBBBZZZZZZZZZZzz

She told me that I had amazing breath control.  Ahhh!  That’s when I told her that I was a singer.  I was also an actor wwaaaayyyyy back in the day.  In drama class we actually practiced freezing our bodies.  I was in a play once where we had to hold still for a several minutes at a time while action was happening elsewhere on stage.  I may not have been the best actress, but I could hold a freeze stance like nobody’s business.

“You can breathe.”  wwwhhhiiiirrrr

I don’t have a breast there so my field is much smaller.  You can see why a deep breath is important to pull the tissue as far away as possible.

It’s been far too many years since those days, but there’s something about the potential of accidentally radiating my heart that gives my body the motivation it needs to remain stock still.  I swear the only movement you see while that machine buzzes its death rays into me is the beating of my heart revealed by belly pulses.

“When you’re ready, take a deep breathe and hold.”

I sure wish my arm would pulse with blood!  I remain stock still during the breath hold and try to distract my mind from the pain in my shoulder and arm.  If I don’t get situated just right in Guido’s grip, the blood gets cut off almost immediately to arm.  Yesterday was one of those glorious times when my position allowed enough blood down my arm that I only needed to wriggle my fingers once or twice instead of constantly.

“You can breathe.”  wwhhhirr

I let my breath out and wriggle my shoulder just a little.  I feel a slight bit of warmth come down my arm.  Ahhhh…  I know I’m nearing the end of the treatment now.  A few days ago I started counting how many breath holds I had to do.  Apparently the treatment is different each day.

“When you’re ready, take a deep breath and hold.”

I had asked the techs about the variances at the last treatment.  I was told that yes, they DO change up the treatment  to avoid over radiating any certain area and sometimes they target other areas.  Some days they put a silicone “skin” over me that nice and cool and about a quarter inch thick that is supposed to help direct the rays closer to the top of the dermis.  And sometimes they break up the breath hold into two doses for my sake.  It depends on who is pressing the button that day.

“You can breathe.”  Whhirrrr

Woof!  That was a long one!  Apparently they WILL go longer than 15 seconds for a good breath holder.  At least that speeds up the session a little.  I keep the breath hold count on my right hand by lifting my fingers.  The sessions usually involve about 12-16 breath holds.

“When you’re ready, take a deep breath and hold.”

Each session begins by me whipping off my shirt and laying down on the table.  Two or three techs will get me into position by scooching me on the table using the sheet beneath me to line up the stickers on my belly and chest to the laser guides that shine on me.  The faster they do this the better.  Then they disappear into the adjoining room and the thick steel door closes behind them.

“You can breathe.”   whirrrr

The first thing that happens is the x-ray module comes down and once in position, I’m told to take a breath and hold while an x-ray is taken to make sure I am in the exact proper position.  once a week they add a CT scan as well.

“When you’re ready, take a deep breath and hold.”

The X-ray makes a near imperceptible sound.  But I’ve learned to listen hard for it after the one time the tech forgot to tell me I could breathe again.  After I thought I was about to pass out from holding my breath, I finally yelled out, “Can I breathe?” using as little oxygen as I could.  Soooo happy to hear the “Oh whoops -yes! Breathe!”  Now that I know what to listen for, I won’t be afraid to let my breath go if someone forgets again.

“You can breathe.”   There was a long pause this time with no whhhiiirr.  I opened my eyes to look at the door.  Am I done?  Sometimes the tech will tell me its the last one but they usually don’t.  Even if the door opens I can’t always move my arm in case they are coming in to re-position me or re-mark me.  Alas -no door opened.

“When you’re ready, take a deep breathe and hold.”   BBBbzzzzzzz

Boo.   The radiation module of the machine is definitely behind me now.  The other reason I keep my eyes closed during treatment is that there is a bright light that shines in my eyes once the machine has rotated towards my back.  Guido holds my head in a position that I can only to my right so I’ve never seen just how far the machine rotates but I’m told that it targets all the lymph nodes under my left arm as well.  In fact, the field on my body that is targeted is bigger than I had anticipated.

“You can breathe.”

I can already feel my skin beginning to burn.  I’m into my 11th session now.  A third of the way through the entire treatment.  An area from the middle of my neck (all on the left side of course) down to under my arm, all around to my back (about as far as my right hand can reach) and about 2-3 inches below where my breast used to be is now getting pink and hot.

“When you’re ready, take a deep breath and hold.”

I put the recommended Calendula cream on as soon as I get home and again before I go to bed.  It’s supposed to help but the doc warned me that my treatment is very aggressive and that I WILL burn some.  This is why its important to use the cream and to stay out of the sun.  What they didn’t warn me about was the itch.  Like a sunburn, I’m finding the area also has that weird hurt-itch happening as well.  And of course it hurts like a mo-fo if I forget and actually scratch it.

I have another several breath holds to suffer through, but you get the idea.  The whole process is pretty boring but tedious as I try to distract myself from freaking out during breath holds, not twitching when I get random nerve pains during treatment, or forgetting I’m supposed to be holding my breath when a good song comes on the radio that I want to sing to.

It’s always music to my ears when the door opens and I’m told I can lower my arm.  They lower the table and unbind my feet so I can hop off and put my shirt on.  I collect my parking pass, say my goodbyes (usually a “see you tomorrow”) and make the long trek back out to my car.

I am pleased with myself as I climb the 5-6 floors to where ever I was able to find parking that I can go up that many flights without getting winded.  Thank you awesome breath holds!  I realize that for the first time in a long time I feel positive about my future.

My intuition or body awareness that I’ve developed over the last year that has let me know when Larry was growing back and assured me that those lymph nodes were NOT cancerous is giving me a sense of peace about this treatment.  It occurred to me today that I really feel that radiation is what’s going to work to finally kill off Larry for good.  I know that is everyone’s fervent prayer these days -mine as well.

It’s that proverbial breath hold waiting for the NED (“no evidence of disease” all clear message) that I can’t wait to tell everyone:

“You can breathe.”

 

 

 

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Beginning Radiation

I was just about to leave my desk for the day when my office phone rang.  A quick glance at the readout told me the call was coming from the hospital system that did my biopsy.  Finally!!

It was indeed Dr Lin (the radiation oncologist) calling.  Her 12 yr old voice had its usually pleasant tone to it as she went thru the niceties of asking how my weekend was.

I answered her with my heart beating wildly.  Get on with it woman!  was what I wanted to scream at her.  She passed along the negative-for-cancer results I was so hoping to hear as if it was no big deal.  As if I hadn’t been thinking about nothing BUT the possibility I might hear bad news.  I barely heard her talking about our next steps while I did my happy dance in front of my desk and tried not to pull the phone out of the wall….

The next day I took the hour long trip to Emory for my first radiation appointment.  I was warned that this appointment would be another long and uncomfortable one as they did test after test to make sure the machine was properly aligned.  I was still walking on air with my “NOT stage 4” news that I was all willing to go thru whatever torture they did to me with a glad heart.

I walked into a large room made small by the massive machine that occupied most of the square footage.  Holy cow!  I thought the first mapping machine was big!  Luckily I don’t have to describe it for you as one of the techs was more than happy to take some pics of it for me.  Apparently it wasn’t a weird request.  And he kindly draped a towel over me first.  lol  Yah -no photoshopping required.

Dr Lin was there along with 3-4 techs – one of them male.  They all greeted me as I walked in and introduced themselves.  Dan (the only name I remember for obvious reasons) explained the procedure and what to expect for all subsequent visits.  I was told to take off my shirt and lie on the table.  None of these techs made a move to leave the room but looked expectantly at me and waited.

Oh.  OK.  I was suddenly glad that I had lost my shame at whipping off my shirt in front of guys. Well, medical men anyway.  I should probably clarify that.

I laid on the table that was already set up with the blue foam form made specially for me.  I I settled back into it and raised my arm to fit into its torturous hold, instantly hating it.  The form shall be herein be dubbed Guido!

The techs strapped my feet together again (yuk!) and moved me around on the table to line up my stickers with the laser lines.  When I was adjusted to their satisfaction, everyone left the room and this giant thick door closed.  Dang.  I suppose.  This is radiation after all.

I was told to lie still and to breath and hold my breath about 30 or 40 times while the machine spun around me.  There was an xray module on it that took several photos of me to make sure the machine would not damage my insides.  After about 20 mins a voice thru a speaker told me the doctor wanted to take a CT as well.

With the numerous surgeries I’ve had, there is very little tissue left on my chest and thus not much room between my skin and my heart.  I was told it was vital to take the same big measured breathes that were designed to pull my chest wall as far away from my heart as possible.  I was suddenly very glad that I quit smoking 20 years ago and did yoga for a few years.  I discovered I still retained the ability to perfectly freeze my body from my old drama class days.  My breath holds were highly praised by the team.  Apparently this an issue with quite a few people.

It was getting more and more difficult as time went on to remain still in between breaths tho.  My arm was aching so badly and my thumb and forefinger kept going numb.  Stupid Guido.

I was actually excited when the disembodied voice finally told me they were all set to begin treatment.  Almost done! I kept telling my poor arm.  Hang in there!

The machine swung around again to my right side -the side where I could actually see having my head turned in that direction.  Take a deep breath and hold….  I watched the inside of the machine move in an intricate pattern as a buzzing sounded.  The buzzing stopped and I was told to breath again while the pattern re-set itself.  They let me take a pic of this part of the machine.  I was told that the pieces move to direct the radiation in a specific pattern.

After another dozen or so breath holds while the machine had rotated several times towards the other side of me, the voice said the words I was longing to hear:  “Ok last one.”

Thank God!  I couldn’t feel my hand by this point.  Unfortunately, I was then told to remain still while they moved some of my stickers around.  Ugh!!  I was finally allowed to move my arm and sit up.  The session was done.  I picked out the time slot all my future appointments would be then drove another hour back home.

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When I got home, I went to put the recommended lotion on and was surprised to see a deep dent in my chest.  Was that there before?  I didn’t think so, but the only pic I could find was taken maybe two weeks after the last surgery where I may very well have still be swollen.  I asked the techs about today when I went in for my second treatment.

They were stumped and called my doctor in to take a look to be safe.  Today’s treatment was shorter than the first, but still longer than I anticipated.  I was told that I get x-rayed before every session to make sure all is aligned before they begin the 10 mins or so of treatment.  That’s a total of about 20 mins I have to lie in Guido’s grip.  Just long enough to make my shoulder scream and thumb go numb.  The next 6 weeks are gonna suck.

The doc checked my previous pics that she had and said she saw a dent there before but it was covered with a sticker before so maybe it just looks bigger now.  She wasn’t worried.  Since the techs will see me everyday and the doc once a week I will have enough expert eyes on me and my skin that I’ll just trust them and let it go.

So far, the chemo pills are causing me no side effects -yah!  I only have to take them on radiation days (M-F).  I have random pains in my left chest but I hope they are just healing pains.  It’s too soon for anything to be radiation related.   A tech told me that I wouldn’t see any redness for a few weeks but she lies.  The redness looks more like skin that has had a heating pad on it.  It doesn’t hurt and seems to go away by the next morning.  I’m staying well hydrated and using the lotions.

So all seems good.  I won’t bore you all with the same “radiation again” story for the next 28 treatments.  I’ll post again if something significant happens.  In the meantime, assume all is well and please keep praying for Larry to finally succumb once and for all.

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EBUS biopsy

“Any questions?” the anesthesiologist asked for the tenth time.  He had just done a very thorough job of explaining the EBUS (Endobronchial Ultrasound) procedure I was about to undergo.   So thorough, in fact, that it freaked me out a little bit.  Just the thought of all those tubes going down my throat was making me a little panicky.

“Am I going to know what’s going on during the procedure?”  I couldn’t imagine being able to lay still while they fished those tubes down my throat.  But the doctor had told me that I would only be partly sedated.  A “twilight sedation” is what its called.  I would be conscious during the procedure but unlikely to remember anything.  I’ll do my best to describe what it was really like.

Like my numerous surgeries, I had to have an IV inserted in my hand.  I’m honestly impressed with my little hand vein that it has withstood so many punctures in such a short time frame.  I hope the rest of my body is that resilient!

Unlike my other surgeries, no chill out medicine was given to me as I was being wheeled back to the OR.  This procedure was done at a different hospital than all the others so nothing was familiar to me.  I’m not sure why I wasn’t nervous about this.  Perhaps I have finally gotten to that point of no longer being scared to die.  If I don’t wake up then at least it would be a painless way to go.  🙂

Being totally awake and sober, I took the opportunity to study the OR while the techs busied themselves preparing.  I never realized just how many different machines are in the room.  This room had a bunch of TV screens hanging above the bed.  I was glad that the doctor would be looking at some really huge screens to watch the ultrasound camera during the procedure.

One of the techs came over to me with what looked a big atomizer (like a yellow teapot with a spout and trigger).  He told me that he would spraying Lidocaine down my throat to numb it up and that I wouldn’t like it at all.  I opened my mouth and he gave the sprayer a couple of good pumps.  It didn’t taste that horrible.  What was the big deal?  Dr Berkowitz (performing the biopsy) stopped studying my PET scan and came over to tell me to pant a couple of times while I got sprayed to get the numbing agent as far down my throat as possible.

The tech sprayed me again while I panted a little.  I was a little worried about aspirating this stuff but apparently no one else was.  I opened my throat and leaned my head then tried to swallow.  TRIED.  Whoa!  I could feel the liquid go down but could not feel half my throat move much.  Weird.  I fought down a little panic and told the tech that I thought my throat might be closing up.

He smiled gently and told me that was what it was supposed to feel like.  He showed me my blood oxygen level was at 100% and assured me that I was breathing just fine.  I tried to relax and act cool but could hear that fool heart monitor betraying me.  I was sprayed a few more times and suddenly realized that I felt some pain in my IV hand.  I whipped my head around and was about to say OW when the nurse told me she just gave me the anesthesia.  Good!  Cuz this panicky numb throat thing was getting to me.

She told me to just lay back.  She didn’t NEED to tell me as my head was suddenly feeling quite heavy.  I couldn’t keep my eyes open either.  I wondered how long it would take for me to fall asleep.  The sprayer tech told me to open my mouth and that he was going to put a little round plastic thing in it to help keep my mouth open.  It wasn’t that big so it wasn’t uncomfortable.  He told me to put my tongue in the center of it. I felt him strapping something around my head to hold it place.

I remember the doctor telling me that he was beginning the procedure and that I might feel some pressure but honestly, I don’t remember the specifics anymore.  It was weird – I WAS awake so I could perform whatever tasks they were telling me, like to swallow or cough on command.  At some point, I realized that I wasn’t able to breath very well.  I must have raised my hand like the doc told me to before I was sedated.  I remember hearing the techs say something and I learned later that they gave me some more sedation.

Which is probably why I don’t remember anything after that.  I woke up in the same draped area I started out in.  A nurse was telling me that all went well and that my throat would hurt for a while and that I would cough for about 24 hours.  My daughter was there as well.  When did she get there??

The doctor came out once I was more awake and told me that he thought everything looked good, but obviously only the pathologist could be sure.  He took samples from the three lymph nodes that were causing concern.  Two were lower in middle chest -like just below the sternum- and the third one was further up and apparently caused us all some trouble.  It was during the attempt to biopsy that one that my trachea started to spasm, making me feel like I couldn’t breath.  But he’s a well seasoned doctor and got the sample despite my resisting trachea.

It wasn’t long before the IV was taken out and I was told I could go home.  My daughter blessedly asked if I had to eat anything first and they agreed that would be a good idea to make sure I had no problems swallowing.  The jello felt like heaven going down.

Now, several hours and a short nap later, my throat is really pissed at me.  Between the Lidocaine wearing off and all the coughing I’ve been doing, I think I’m going to take Nyquil tonight to knock me out and coat my aching throat.  And yes!  My chest feels quite heavy and hurts when I cough.  Yuk!  This little procedure kicked my butt way worse than any of my surgeries.  All on top of a cold too.  Boo

I was told it would take 2-5 days to get results.  I’m not entirely sure WHO will tell me the results, but I will let you all know as soon as I hear something.  I am hoping I get to be pissed about going through all this “for nothing” – that I get the all clear.  Then all I have to worry about is figuring out a way to kill the Michael Meyers Larry lump once and for all.

And work on losing the 10 pounds I’ve gained not being to exercise properly.  Sigh…

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Radiation Mapping

“Here’s a gown,” the technician handed me a standard hospital gown.  “Put it on with the opening to the back.”  I took the gown from her but asked,

“Didn’t you just tell me that I will be topless while on the table?  Seriously -I don’t need this.  I lost any modesty as far as my chest goes like a year ago.”  I tried to hand the gown back to her but she insisted I put it on while all the technicians left the room.

I rolled my eyes and started unbuttoning my shirt.  It was amusing to watch the techs all run from the room.  The room itself was quite large.  The main attraction was a machine that looked a lot like the MRI machine I was just in last week complete with the moving table the patient lies on and the big donut shape the tables moves into.  Only this room had cool red laser lines everywhere as well.

When the ladies (and the one male doctor that would be supervising my treatment) came back in to the room, the was suddenly a flurry of activity.  Two of the techs laid me on the table and the next thing I knew, the pointless gown was taken off me and I was being moved around and held in place while the blue bag beneath me began to fill with some Styrofoam substance that would make sure I was held in place and not able to move.  My left arm was raised above my head so my hand touched the top of my head.  A mold is made of each person’s body so that every time you come in for your treatment. you are lying in the same place and position.

I was told to “hold still” and we practiced my “breath & hold” technique that is designed to fill my lungs with air to push my chest wall away from my heart and lungs as much as possible so they are not hit by the radiation beams.

Wow -this position is really uncomfortable.  I asked the tech if other ladies complained about their arm going numb.

“Oh yeah.  Every time.  You arm WILL go numb.  Sorry, but you just have to deal with it till we are done.”  She handed me a little red rubber ball to squeeze.  Apparently it helps keep some blood flowing to your fingers.

It doesn’t.

My head was held to the side looking to my right so I couldn’t see just how many techs were in the room but judging at the number of hands touching me and voices I heard, I’m guessing there were at least 5 people in the room including my doctor.  My feet were tied together and someone laid a warm towel over my chest.  It’s a damn good thing that I don’t have issues being held down!

I was told that the table would move back and forth while the machine scanned me.  Then everyone left the room and I was told thru a speaker to breath and hold while the machine did it’s thing.  After a few trips through the donut, the techs all came back into the room, the now cooled towel was removed and people started marking on my body with markers.  Weirdly -I couldn’t feel most of these marks since they were on my chest that no longer has any nerve endings.

Dr Lin

By this time my arm hurt so bad that no amount of ball squeezing helped.  I tried to keep my tone light when I asked if they were almost done and then tried not to cry when I was told they were only halfway finished.  I tried to wriggle my arm a bit to see if I could find a way to let a little blood back in.  I mean -my fingers were getting cold for Pete’s sake!  But one of the techs sternly told me not to move.  Dammit.

They finished marking me and left again.  Another few trips thru the donut.  I tried to concentrate on the holding of my breath instead of the vise like grip on my shoulder.  I wondered what was actually pinching the veins closed.  I wondered how long my fingers could go without blood before they started to die.  I wondered how many other ladies wanted to kill the techs by the time this fool mapping was done.  At least it was my left arm.  My right arm still worked and could punch someone.

The next time the techs came in, they added a few more marks then applied stickers on top of them all.  These stickers were mostly waterproof and pretty darn sticky so I could still shower with them on.  Just no baths or swimming during treatment.  I wondered if I would even be able to lift my damn arm to wash my hair anymore if they didn’t hurry the hell up.

(Yah on the washing the hair, BTW!  It may be yucky short still but at least it HAVE hair again!!)

They finally finished up their torture session and laid the hospital gown back on me.  Really?  Then told me I could put my arm and down and sit up.  Thank GOD!!

But I couldn’t actually move my arm by then.  The nurse laughed at my grunt and kindly helped me     ever    so   slowly   put my arm down.  She wisely knew it would hurt to move it.  I felt the blood blessedly rush back into my arm and down into my fingers.  I rotated my shoulder to help it along then suddenly BAM the pricklies started.  Owowowow!

I was glad to have the distraction of putting my shirt back on.  By this time the techs gave up the pretense of giving me privacy.  The main tech gave me instructions on caring for the stickers while I tried to get my stiff fingers to button my shirt.  No way was I going to be able to work the tiny clasp on my necklace so I put it in my pocket (and yes, I found it in the dryer this morning. Sigh)

I was told my treatments would start next Tuesday at 12:30 and was given a fast track card for checking in and parking instructions.  Apparently my first treatment would be about 45 mins so they can fine tune the machine but every treatment thereafter would only take 10-15 mins.

That was all yesterday.

Today I got a call from Dr Lin telling me that we will wait another week before I start treatment.  What I didn’t tell you about was the lengthy conversation we had before the mapping.  Apparently those three little lymph nodes were causing everyone concern -especially her.  Here’s the short recap version:

If those nodes are NOT cancerous, then treatment goes as planned.  6 weeks of radiation that targets all the typical areas.

If the nodes ARE cancerous, then we need to remap in order to target them as well and treatment will likely be shortened.  At first this didn’t make sense to me till she said the “conventional” treatment plan for metastatic cancer is a quick blast with radiation then back on to chemo.

Notice those three nodes near the sternum? Doc says they are the LEAST likely for breast cancer to move into.

I informed her that I doubted I would go back on chemo.  My oncologist and I already discussed that and even he agreed.  I’ve already done the most aggressive regiment they have so it won’t be very effective to do it again.  We are both hoping that my TNBC is one that responds better to radiation than chemo.  But Dr Lin felt that my insurance might have an issue with the “unconventional” treatment plan without knowing FOR SURE if those lymph nodes were cancerous or not.

So now I have a biopsy scheduled for next Wednesday so we can know for sure.  I am not thrilled.  There are many who believe that biopsies can actually spread the cancer -after all, you are breaking open an encapsulated tumor in order to collect cells from it.  Considering that Larry’s son grew right next to him, I tend to follow that belief.  However, a quick Google search reveals numerous medical studies that assure me biopsies are safe and unlikely to spread cancer.   Hmm

This biopsy will be done as an EBUS (Endobronchial Ultrasound Bronchoscopy) which means I will be put under either light or full general sedation while the doctor puts tubes down my throat with an ultrasound camera that will help him find the nodes and take a sample via a fine needle aspiration.  It should take a few days to get the results.  At that time, Dr Lin will decide what the best course of treatment is.

So radiation gets put off yet another week.  Sigh.  The good news is that she is more encouraged that these nodes will be negative now that she’s gotten a second opinion from her radiologist  who agreed that they are more likely lighting up as a result of healing.

Fingers crossed!!!

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