Sunday, June 19, 2011

More Radiation Weirdness: Scar Boost

As I completed last Wednesday’s radiation treatment the technicians asked me if I “minded staying around a few minutes more.”

Oh, sure. Why not.

Since it was Wednesday, the day I see Dr. Ross, and I’d already planned on being there longer than normal, why not? What else could I have to do? Cancer treatment is my new job, isn’t it?

They informed me that they needed to do another simulation, of sorts, in preparation for the next phase: the Scar Boost.

They promised it would only take about 15 minutes. From what I can tell, their clock runs much slower than mine.

Considering the only other simulation I’d undergone had seemed a mild form of torture, I wasn’t jumping up and down with excitement. But knowing that I had been lying on that table and stretching my body into radiation formation for weeks now, I figured I could handle it. This would be the test to see if my flexibility and endurance had improved since that first simulation.

Plus, I didn’t have a choice. Where cancer fighting is concerned, you do what has to be done. Doesn’t pay to grumble. Although, I did wonder what they would have said if I’d replied, “No thank you.”

So, I found myself back in the simulation room with the two sweet simulation ladies, with their Sharpie markers, and fancy tape, to prep for my SCAR BOOST. Sounds pretty cool, huh?

They even called in Dr. Ross to mark on me this time. With green Sharpie, no less...something to accent the red and black marks already there.

Once the body art was finished and Dr. Ross left, they added a few finishing touches with green paint pen. Yes, paint pen…as in the kind they sell at Hobby Lobby. In prep for high tech radiation treatment I am marked with Sharpies and paint pens from the local hobby store. As an art teacher I appreciated that. 

Once marked I was then scanned and photographed so Dr. Ross could prepare whatever high tech scientific things needed to be prepared for my scar boost.

Unless you have already been there done that, you are, like I was, probably asking: "What is this so called 'scar boost' of which you speak?”

Short answer via sweet simulation ladies:
It’s where they will irradiate the scar area during the final few days of treatment.

More concise answer via Dr. Ross:
The overall breast area radiation is about to end and for the last few days of treatment only the area around the scar will be irradiated. If breast cancer is going to return for a regional recurrence (in the chest/breast area) it is most likely to return to the area around the mastectomy scar. Why? (It has nothing to do with the location of the previous tumor.) This is why: Since the scarred tissue receives less oxygen, the radiation that has already been given does not work as well there. So, the scar boost will help insure that any bad cells hanging around the scar area are damaged for good. Simple as that.

Made sense to me, and was pretty darn interesting, in my humble opinion.

I’ve read that cancer does not like oxygen, which is one (of MANY) reasons to get aerobic exercise and meditate using deep breathing everyday. Get that oxygen flowing…really flowing…throughout your body as often as possible. (Have you ever noticed how shallowly we breathe when at rest?)

Did you just take a deep breath? If not, do it now. And again...and again.

But I digress.

The simulation was nothing like the last one. My arm muscle or tendon or whatever gave me such grief the last time cooperated much better this round, plus, I didn’t have to lay there for an hour. (Although that may still come…I haven’t been worked over by the other team yet.)

As I headed to the dressing room following my visit with Dr. Ross, I was curious to see the artwork on my chest. I was not disappointed. It was just as impressive as the previous map of Arkansas, for sure. This time they’d drawn a green NASCAR track around my mastectomy scar. Awesome. I am one tatted up gal.

Note to self: Being instructed to not wash away green paint marker does not work when included with 3 mile walks, 10 mile bike rides, and hot, humid two-shower days. Oops. Tomorrow is Monday; we'll see what they say.

Thursday, June 9, 2011

Chia Patti

Losing my hair back in the fall was an interesting experience, to say the least. The unfortunate side of it was that this hair loss was due to the chemotherapy regimen I was on at the time (TAC) that, it turned out, did absolutely nothing for my cancer. Nada. Zip. Zilch. Lost my hair, sick as a dog, missed work, all for naught. That chemo came to a screeching halt in October when it was determined that my tumor had grown considerably.

We quickly decided to move from neoadjuvant to adjuvant chemotherapy and had the tumor removed the old fashioned way – via sharp knife and talented doctor. A section of the tumor was sent for profiling, which came back with discouraging results, showing it to be resistant to the majority of chemotherapy choices. One of the chemo regimens that showed the least resistance was the one I just completed 6 weeks ago, the previously blogged about and frequently whined about Cisplatin and Gemcitabine.

In most minds, breast cancer treatment equals hair loss, but not with this regimen of chemo. That’s the one and only good thing about the Cis/Gem combo.

Once TAC ended, within about 6-8 weeks I began to notice a baby fine haze of darkness on my head and eyebrows. At one point I actually thought I had a smudge of something on my eyebrow area and tried to wipe it off, then realized it was new hair! By Christmas the baby fine haze had morphed into a sort of Euro-funky-skinhead sort of chic.

December 2010
So, here I am. It’s been over 7 months since the hair cell eating chemo ended and my hair has been allowed to grow. Right now it's only about an inch and a half long...shorter than I'd hoped after 7 months growth. I'm convinced that the chemo I just completed arrested the growth somehow. But I'm thankful to have this little bit...truly I am. Only, odd thing is, it seems someone else’s hair has taken the place of my old hair. Instead of my usual thick, somewhat wavy locks, my new do consists of a much finer and very curly crop of hair.

I knew this was a possibility, having read about something affectionately called “chemo curls”…and now those curls have come to live on my head. Like I said, I have someone else’s hair.

March 2011

Good start on a mullet. March 2011
 The hair color, at least, is the same. I did not lose the pigment that sometimes occurs following chemo, leading to a head full of white hair, though it does seem I have quite a few more grey hairs than before.

As far as style goes, I've gone from a nice Jewish boy look (think Adam Sandler), to my current, slightly longer locked, Will Ferrell style. Next stop, Mr. Kotter…or maybe Chia Patti.

I actually went to my hairdresser, Amanda, at Enve last week…first one in about 10 months! Not sure what she could do with these short little curls, but I was anxious to at least get rid of the weird mullet that was beginning to form on the back of my neck. She actually managed to blow dry and flat iron my hair, leaving it somewhat straight and a half inch longer. A miracle, for sure! Being this short, though, I don't think I'll trust myself with a flat iron for a while. I don't care for blisters on my fingers or head.

I would have loved to come out looking like Halle Berry, but it’s going to take a lot more than a haircut to make that happen.

I try not to complain about these curls (very often) since it definitely beats no hair at all (as David sweetly reminds me). I do get compliments, but am always suspicious. I haven’t decided if they’re genuine or sympathy induced. I seem to have lots of friends who are pretty bad liars.

And when all is said and done, a good baseball hat still comes in handy now and then.

At my birthday celebration last month.

The mullet is gone.
I'm thinking I could get used to this.

Eh...I don't think so.

Tuesday, June 7, 2011

One Year Ago Today...

Mark one off the bucket list.
No, it wasn't the date I found out I had cancer. It was one year ago today that I boarded an airplane in Little Rock with 15 other Arkansas teachers and embarked on a trip of a lifetime. We were headed for a fantastic three week tour of China, as part of the Bringing China to Arkansas Program (thanks to UALR and The Freeman Foundation).

Those three weeks in June were some of the most amazing and memorable of my life. Not only did I learn a great deal about a fantastic country, but I was able to see and do things of which I had only dreamed, and do these things with people who would soon become my very dear friends.

I have fantastic and lovely memories of that time in my life.

It's a little scary how much can happen in a year.

We returned from this trip at the end of June and a couple of weeks later I heard the words, "That doesn't look good." (I really don't think anyone ever said, "You have cancer.") The lump about which this was spoken was actually found while in Beijing, near the end of our stay in China.

The point of all this is not to review the many ups and downs of my crazy year, but to point out how quickly life can change. There is no doubt that I had cancer while in China, yet was clueless. I felt great, was going at full tilt, and loving every minute of the trip. Even after finding the lump I was not worried. I'd had lumps before. No biggy. It wasn't until I had it checked out that things changed...and changed fast.

Not to be morbid, but I'm sure someone reading this is in the same boat I was in at the time. Not a sinking boat, but a boat with some serious cracks in the hull. And like me, you just don't know.

So, all you healthy people out there, consider this and live each day like it could be one of your last. Be thankful for the good things in your, friends, pets, home, blue skies, sunshine, birdsong, trees, flowers, laughter, tears, hugs, waking up each day. The list goes on and on.

Be kind to strangers and family, complain less, encourage more.

Be diligent in taking care of only get one body. Get up and move; spend less time online.

I can no longer frivolously say things like, "I'll be glad when this week is over" or "I can't wait for next year!" My mom used to tell me I was wishing my life away, and she was right. She passed away at the young age of 71. She was not ready to leave.

Life moves quicker than you think, and this is not Walmart. There are no guarantees.

“Carpe diem! Rejoice while you are alive; enjoy the day; live life to the fullest; make the most of what you have. It is later than you think.”  Horace


Clueless at the Temple of Heaven - Beijing

Clueless at the Terracotta Warriors - Xian
My favorite town, Lijiang,
and the best travel companions ever!

The Bund - Shanghai,
and me without a care in the world.

Sunday, June 5, 2011

The Radiation Ride

Fourteen down, sixteen to go. Almost half way there.

I began radiation treatments almost 3 weeks ago, on May 17, to be exact. I have a standing 9:30 appointment everyday from now through the end of June, or when I begin to glow...whichever comes first. It's my new part-time job.

Radiation is not quite what I imagined. Not really sure what that was, but this isn't it.

Chemo finally came to a long awaited stop at the end of April, just in time for my birthday. Best gift ever! Right after this I went for what is called a "simulation". This is done a couple of weeks before radiation begins. A simulation is basically their time to get all your rad ducks in a row.

During the simulation you get to disrobe and sprawl out on a narrow table as they position you on a sort of dense bean bag sort of body pillow. My radiation covers my (missing) breast area, as well as left armpit, clavicle, and neck, so to accomplish this involves some serious overhead stretching. At least serious for me.

I knew I was in trouble when they had me lay back and raise my arms above my head, grasping wrist in hand, and then "relax" my arms down. Oh really? There is no "relaxing" my left arm when in that position. It would have been more realistic if they had said, "Now pull your left arm back until you feel the muscles scream." But, being kindly technicians they asked me to "relax".

For most people this would be a simple task. While laying back, place your arms above your head, grasp the opposite wrist, and relax. For me, not. My right arm was very obedient, but my left arm now has a mind of its own...a somewhat closed mind. As my left elbow continued to stick up in the air, they continued to insist I "relax". I quickly explained that I WAS relaxed. ...Oh.

...Helllooww! Had a mastectomy, followed by axillary dissection! Things are not what they should be. You'd think they'd be used to this sort of thing. Or maybe I fit in a new category of super-wimp.

So with some quick readjusting and finagling they managed to get my arm into an acceptable position. At least enough to run me back and forth through the CT scanner a couple of times without whacking my elbow. CT is another part of the simulation. Doc needs scans to plan for the rads.

During this time they also spent a few minutes marking and taping me. When I was back in the dressing room I expected to look in the mirror and see all sorts of cool and technical looking marks on my chest, but from what I could tell they had drawn a crude map of Arkansas in black Sharpie, then added a few red X's for dramatic effect. Some of the marks were taped over with a clear, thin sort of tape. I was told I could shower and continue life as normal, so no probs. Distance swimming was discouraged, though.

I was back for actual radiation two weeks later. The first day was by far the hardest. On this day I met the technicians who have been treating me daily. Again, they laid me out on a table, this time in the "cradle". Sounds comfortable, doesn't it? Don't be fooled. The cradle is the form created from the imprint of my body in the bean bag thing during the simulation...painful arm position and all.

This whole first treatment ordeal takes about an hour. Lying on a table for an hour seems like no big deal, except when you have my left arm. It was an hour of torture. As they adjusted me, removed old tape, re-marked, re-taped, said things like "slide her up a few centimeters, 85, 97, that's good, what do you have?, 95, scoot her over a bit, hold still, be right back,... *silence*...*silence*...*silence*..."

I lay there with a shoulder beginning to cramp, looking at the images of spring trees in the plastic coverings over the fluorescent lighting above, and feeling a bit surreal. Am I really doing this? Am I really about to let them irradiate me? It's amazing what the desire for remission will allow.

The shoulder cramping got worse and when I pitifully and childishly asked "how much longer?" and was told "about 20 minutes" I almost had a panic attack. Yep, I'm a wimp. I tried to imagine I was lying in a grassy meadow, as the images of spring foliage above insinuated, but that was a joke. During the middle of everything it dawned on me that I'd given birth twice, without epidural, so surely I could do this. A little Lamaze breathing helped, too.

Finally, they got everything just the way they wanted, had finished the final drawing project on my topless chest, and it was time for my first treatment. This only lasted a few minutes and included something called a "bolus". A bolus, in this instance, is a warm wet towel spread over my chest during treatment. As it was explained to me, this "tricks" the radiation into thinking my skin is thicker than it is and will make my skin pinker so the doctor can actually see the effect on my skin. I get the wet towel treatment every third day.

The radiation itself comes from a rather large, robotic cyclops sort of machine with a long neck and large flat and round sort of eye with a large square pupil. As my table is automatically raised and moved toward the cyclops, the cyclops comes to meet me. It hovers around and over me, zapping me from above and both sides, and at intervals that I now have memorized. I know when the eye is right above me and I hear the long rhythmic whirring and tinking sound that it's almost over.

I see Dr. Ross once a week so he can make sure all is as it should be. Right now side effects are beginning to become more pronounced. Skin on my left chest area, shoulder, and neck is changing, both in color and texture. I also have a continual sore throat due to one section of my esophagus being hit with the rads. Not really feeling the fatigue yet, and I'm not planning to.

Compared to chemo, this is a cakewalk.

Daily treatments have become routine. I stay longer on Wednesdays to see the doctor, but otherwise I'm in and out without much ado. Enough time to grab the gown from my own personal cubby, disrobe, wrap up in the extra large gown, lock clothing in cabinet, and park myself in the waiting area. They usually call me back right away and off we go to Rad Land.

I have sixteen treatments to go, with weekends and holidays off, so I should be finished by the end of June. After that, the only treatment I will be receiving is prayer...a definite group effort. Thanks to all of you who are helping with that one!