Wonder Away

Hair.

Over-rated.

Under-rated.

I am learning.

My hair is growing...and it is DIFFERENT.  

No surprise.

Lots of people have told me about someone they know who went through cancer treatment and their hair grew back curly, or straight, or an odd color.

Mine is white.

In places.

And, in someplaces, there is a twinge of red.  ish.

But mostly white.

AND I DON'T CARE.

Nope.

Because I am comfortable with who I am, and if the person I am has white hair, or no hair, or straight hair, or hair that stands on end, I am comfortable.

Ok.  Almost comfortable.  

I really wouldn't want to be bald for ever.

And I may decide, later, that white hair is not what I desire.  I may decide to have a bit more of the 'ish', as in red, back.  

But I have learned over the past 7 months that there are other, more important things.  Like life.  And family.  And friendships.  And my relationship with my Creator.  I am learning -- even these things I already knew.  

I am learning anew.

I have learned that other people, friends even, are not comfortable with what I look like.

"Are you going to color your hair when it gets longer?" 

"No"

"Oooooh....are you sure?"

NO!  I am NOT sure.

Because I am learning to try and not say "I will/would 'never'".  

Slowly learning, but I AM learning.

But I am happy, right now, with white hair.

With curly hair.

With straight hair.

And the ease that that happiness provides, that that acceptance provides, is priceless.  That ease allows me to be me.  Not my hair.  Not my body (ok, another caveat...I am not entirely comfortable with my body...not the weight gain, not the new body that does not fit into my clothes, etc. -- but I am not going to obsess about it.)

People who know me, know me.  Whether my hair, or my body, is 'normal' or odd.  And they either love me or they don't.  

People who don't know me probably wonder.

That's ok by me.  Wonder away.

My, How They Love Cameras

Yesterday was the trial run on radiation.

I started things off wrong.

Who would know that they want the gown on with the opening in the back? My goodness, one would think (I think) that the opening would need to be in the front if one's breast was going to be radiated.

But, no. Opening in the back. So I take off the gown and turn it around. The technicians (two women this time) hold up a robe in front of me for "privacy". This action makes me chuckle to myself. Modesty? Really? I do appreciate their care - so thoughtful and sweet.

The 'treatment room' is so high tech it makes me think I am in a movie. Laser beams shooting out of the walls and ceiling. The lasers are used to line me up according to my tattoos. Pretty darn amazing.

As I lay there with my arms above my head, I have an itch.

On my collar bone.

And it is a pretty intense itch..."can I move my arms?"

"NO! We need you to stay still."

"But my collar bone..."

The kindness comes again. The technician comes over and itches my collar bone for me. And she is good at it! Follows my directions quickly and precisely. "up just a bit. over towards my chin. yes yes you got it. Thank you!"

Before Dr. Wang came in to check and make sure all was well, the markers come out again. One more large circle on my chest and onto my back. Something makes me think that perhaps these technicians are the ones who only wanted to draw in kindergarten...Reminds of me of Miss Rachel who would (and did) draw on everything and anything (sheets, Camille's lamp, walls, etc. etc. etc.)

Then the camera came out.

Again.

I had to wonder, just how many photos of my breast does one radiation center need to have? More than they do currently, it seems.

I ask "what do you need the photos for?"

Chuckle. (The chuckle only made me more wary...) Dr. Wang responds "the photos only go in your treatment chart. They aren't used for anything else". Good. Good.

Then one of the technicians says "we don't take any photos of your face, so no one who ever sees these would know it is you..."

Ok, then. I feel much better.

Not really.

So the test run begins.

And it is all well and good. Because all went well, I get the first treatment.

Done!

Dr. Wang has changed the treatment plan, according to the technicians. Only 30 treatments instead of 33. Higher dose of radiation, so fewer treatments. Not going to argue with that!

I will report at 3:00 p.m. every day, Monday-Friday, for the next six weeks.

And get my picture taken every week or so.

I may be completely camera shy by the time I'm done.

Normal, I Love You

“Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day I shall dig my nails into the earth, or bury my face in the pillow, or raise my hands to the sky and want, more than all the world, your return"-Mary Jean Iron

I have lived that quote.  So many times, I have buried my face into my pillow, sobbing, wanting to return to "normal life".  Life as it was before November 8th, 2008.  Life before cancer.

But, in reality, even November 7th, 2008 was not life before cancer.  Or June 2008.  It was just life before I knew I had cancer.  Life in ignorance of cancer.  

But now,  in the last two weeks, I have had some "normal" days.

Almost.

I am loving "almost normal". 

Loving it.

 Because I am starting to feel good.

GOOD!

Still tired.  But not so much.

I can almost stay awake until 9 in the evening.  That is late  for me.

I still am watching and feeling my fingernails separate from my nail beds.

The bottom of my feet are still numb.  

When I get up to walk somewhere, I must stand still for a few seconds to get my balance and my footing before putting one foot in front of the other and walking out the door.  

I still have kankles.  You know, where there is no definition from knee to ankle.

I still have weight gain and fluid retention.  

And episodes of 'chemo brain'.

But....

I don't have severe bone aches.

And I don't have severe nail pain.

And I am not melting into the floor nearly as often.

And I have had two weeks without treatments.

Normal days.

Working.

Being a wife.

Being a mother.

Just normal stuff.

I love it.

No cancer war until Wednesday.

~ 30 Minutes ~

Today I had my upper torso mapped.

3-D imaging.

I didn't get to see the map, but I am guessing it is pretty cool.

When I arrived, I was given "some more paper work to fill out".  

Except I didn't fill it out.  It was for the social worker.  Asking personal questions.  Sorry.  Thanks but no thanks.  I am not interested in filling out a form about my emotional well being, and my sex life, that is then reviewed by office staff and probably entered into a computer.  Nope.

Next was the tour and instructions on how the radiation treatment regimen will unfold.  No need to check in, just go to the treatment waiting room.  Go change into a gown and robe.  The waiting room has cameras, so the staff will see me when I arrive and come get me.

Today, I had to identify myself by my birthdate, as the technicians could not tell if I was me.  The photo they had of me (taken on December 3, 2008) is of a woman with red hair and terrified and sad eyes.  I tell myself they couldn't recognize me from the photo not just because my hair is gone, but because my eyes are no longer terrified and I do not look sad.  Yes.  That must be why.  Not sad and terrified, but strong and courageous.  I ask the technicians to take a new photo -- and they cheerfully agree.

I had two technicians helping me today, a man and a woman.  Both very friendly and helpful.

Then into the mapping room.  The doctor came in and marked my chest with a pen.  As she was looking at my breast, which has one big incision scar across the breadth, she asked, with uncertainty in her voice, "is this the lumpectomy site?"  Well, hello, yes.  There is only one scar; where else would it be?

The technician must have seen some response on my face, because he said "doesn't even look like a scar!  Just a red line on your breast!"  I think "really?  how odd is that?  A woman with a red line across her breast.  Is that better than a scar?"  But I said nothing.  

After the CT scan mapped my chest, it was tattoo time.  The male technician did the tattooing because the woman tech had just painted her nails (at work? what?), and didn't want to put gloves on her hands quite yet.  

I have four little dots now forever on my upper body.  

And a recognition that my initial opposition to tattoos is renewed.  

I have given serious thought (much to my husband's chagrin...) to getting a tattoo once this cancer stuff is done.  But after today, and the four little dots, I doubt I am brave enough to proceed.  

Because tattoos hurt -- feel like bee stings.  

And I am guessing that the pain (not unbearable, but certainly uncomfortable) will be enough to keep my head on my shoulders and prevent any craziness of subjecting myself to repeated pin pricks...   Just imagine a bee sting over and over and over in a small area.  Ouch.

Ok, now for the last part of my mapping adventure...here's where you may want to stop reading if you're wary of too much information.  Because the next paragraph will certainly be too much information. 

One of the last things the male technician did was snap a few photos..."ok, Drenda, we need to get a photo to show the position of your arms".  I think, ok, that sounds reasonable.  

"Ok, great.  Now I just need to get a photo of your breast straight on."

WHHAAATTT?

Before I could say anything (not that it would have mattered), snap!  The photo of my breast is now a digital memory.  OH MY GOODNESS!  

After having babies, and cancer surgery, and repeated exams, and, and, and..., I am pretty good about letting the medical professionals see parts of my body that they need to.   BUT A PHOTO?  Are you kidding me?

I am thinking that in any other context, that photo would be considered pornography.  Not even a chance it would be considered art.  But now a part of my chart, apparently.

What a day.  I am exhausted.

This appointment actually only took 30 minutes; I am learning that lots can transpire in 30 short minutes.  

Chemo Brain

Chemo Brain. 

An actual condition.

One I've claimed to have on a number of occasions. 

But those claims were just examples of me being a "cancer user".

As in using cancer as an excuse for my own, normal, lapses.

But no more. 

Because I have experienced Chemo Brain for real this week. 

And it is REALLY frustrating. Really.

I was upset with my daughter and "lecturing". But I couldn't supply the right word. She had to do it for me. 

It went something like this (although typing the conversation leaves much to be desired. Hard to hear the emotion.) "Ellie, you MUST get your room cleaned. You MUST clean it so that the carpet can be seen. I am going to run errands, and when I come back, you better have...have...have...made....um....um..." "Progress? Do you mean progress?" "YES! YOU BETTER HAVE MADE PROGRESS!"

(and, o.k., I realize that is not a great example of good parenting...before you even start to point out how I could have handled room cleaning better, please know I realize I could have been a better parent. I have lots of room to improve, and understand that I won't really "get it" until I am a grandparent...)

Not funny at the time, that my little girl has to help me find the words for her own lecture, but I can almost see the humor now. Not sure she does, or will ever, see the humor. She was just mad at me that she had to clean her room.

Another 'real' example of Chemo Brain: I was at work, and writing an email to a number of people regarding grant requests that the County will be submitting for federal stimulus dollars. In the email, I was asking for draft language that could be sent to our Congressional Delegation that they could, in turn, use to send support letters on our behalf. 

I was spelling out what the draft language should include. I couldn't think of the word I was looking for, "hmm, no, not 'important', 'profound?' 'something like propelling, but WHAT is it?"....so I went out in the hall and asked a co-worker to help me. 

"Karen, I am looking for a word but can't think of the right one..." 

She looked at me blankly. I realize that I did not give her much to go on. But she stood there listening patiently to me as I talked it out. 

And then the word came to me. 

"COMPELLING" 

Yes! That was the word. The draft language should include compelling reasons that the County should be awarded the grant.

It is very disconcerting to have these brain lapses. I am not usually at a loss for words.

Luckily for me, and for all of you, Chemo Brain is not supposed to be permanent.

That's what I am telling myself...when I can find the right wordage.

Radiation, Oh My!

Don and I visited the radiation oncologist, Dr. Alice Wang, the Friday before Memorial Day.  May 22nd.

That day, she outlined the radiation trek ahead.  

Oh my goodness.  It is a trek.  Not as arduous as chemotherapy, but it will still be intrusive.

I will see her on Monday, June 8th for "mapping"...and my tattoos.  

Sorry to say that the tattoos will be only dots.  But I may connect them in the future.

Then, Dr. Wang will need a week to "plan" my treatment.  That means doing the math and computer work to map the best shot at my breast.  Trying to hit as little of my lungs as possible.  Good for me that the cancer was in the right breast.  That saves my heart.

Dr. Wang said radiation treatment should begin on June 15th.

I asked for a slight delay in treatment -- two days.  Don is off of work that week (yeah! for finally getting some vacation time in summer!), and we'll have all three of our girls home until Wednesday.  I want some all-family fun!  

I am slated to begin the radiation on Wednesday, June 17th.  By my calculations (and my calculations could be off - I've never been great at math), I will finish radiation on August 4th.    Yikes.  That is A LOT of radiation.  And many days.  33 treatments in all...every day, Monday through Friday.  Holidays off.

We leave Dr. Wang's office with the understanding that someone on her staff will call to schedule the follow-up appointments.  That was May 22nd.

Today is June 3rd.  No call yet.  I am starting to get a bit nervous.  So I call the office.  "Oh.  Drenda Howatt.  We've got you scheduled for 9:30 a.m. on Monday, June 8th."  "Really?  I didn't know."  "What?  No one called to tell you?"  "Nope."

Then I say "I am supposed to start treatment on June 17th."  "Oh yes!  We have you scheduled for 11 a.m. on the 17th."  Great.  Good to know they're taking care of business.  Just wished they'd have thought to tell me.

During our visit with Dr. Wang, she discussed radiation side effects with us.  (I am really beginning to hate those words.  "side effects".  As if they are just by-standers.  Let me just say that some of them are not really on the "side".  They are sometimes "front and center".  Often, they have not been by-standers, but involved in the game....and sometimes winning.  I understand that "front effects", or "front and center effects" doesn't really sound right either.  But I do hate "side effects".)  

Anyway, back to what Dr. Wang told us.  Fatigue is a big issue with radiation.  Apparently, I will probably feel fine for the first two weeks or so, but then "it hits".  And the fatigue will (I shall tell myself that it "can"...not "will") last for quite some time after radiation is over.  What does that mean for me?  No telling at this point.  

I am liking the date of August 5th.  

Loving it already.

And, if we can get passports in time, I am thinking that Don and I will have to celebrate its arrival with a little trip to Victoria sometime that month.  

Yep.

I may not be good at math, but I can make a  plan!

~Saying "NO" Feels So Good~

Last Thursday was another appointment with Jerry.

First, though, to the lab to have blood drawn. The clinical trial called for lots of blood that day. Thirteen vials. Yikes. This was the first time that the lab tech has had any problem with drawing blood from my port...seems the needle was trying to suck up my vein. So I ask the tech "which needle are you using?" Response: "3/4 inch". "hmm. That's is why my chart says to use the 1 inch needle...3/4 inch is too short."

After weeks of going for blood work and always asking to make sure the 1 inch needle was used, the one time I don't ask/remind, the short needle is used. This is the kind of thing that is so tiring. Rhetorical question here, but must I always tell them how to do their job?

After a bit more fiddling around, the lab tech was able to get the short needle to draw blood.

All 13 vials full.

Good news at vitals. Lost 3 pounds since the previous week. Fluid retention is slowly relenting.

My time with Jerry went well. Everything seems fine..echo-cardiogram results unchanged and completely normal. No detectable heart damage from chemo-therapy. EKG results also normal. I am a normal girl...except that I have breast cancer. Go figure.

I asked Jerry if I can get back to normal life now. Yes. Manicures and pedicures? He chuckles. I chuckle. Don shakes his head at me. As if my normal, before cancer, life held time for such pleasures. Then Jerry responds, "oh, well wait a few weeks on those..." Shaving? "wait a few weeks on that, too". Occasional glass of wine? Yes.

Jerry tells me that I'll come back for more blood work, and start the clinical trial drug lapatinib on July 9th. I asked Jerry what happens if I decide to quit the trial. Can I go back to the regular treatment of herceptin? "Oh. Why do you ask?, But, yes. If you go off of the study, you can go back to the herceptin and finish out the treatment schedule on that. Most people tolerate lapatinib quite well, though." I feel better knowing that I still have the option, but I think my question made Jerry nervous.

I won't see Jerry again until July 16th. Oh my goodness. That is a long time from now. Good news and bad news. Jerry makes me feel safe.

He says I will also need to come in sometime between now and July 9th to have my port flushed. And then he tells me to "keep up the good work."

Wait!

How, exactly, do I do that? It's his good work, not mine.

Or maybe it's His good work.

As we leave, I stop at the front desk to make my appointments.

The woman at the desk is very friendly and we get the lab appointment and the appointment to see Jerry all set.

And then I say "I need to come in to get my port flushed." "Oh, I can't make that appointment here. You'll have to go upstairs to the Infusion Suite to make that appointment."

"Excuse me?"

"You have to go upstairs."

"No, thank you, I'm done upstairs and am not going back." She looks at me, quite confused.

I say, to myself, 'you're confused? Really? Surely I am not the first patient who refuses to go upstairs?'

But I just repeat my first response to her.

"I am finished upstairs and am not going back there."

Pause.

"Oh. I guess you can call in to get the appointment."

Okay.

I'll call.

And then I may send that cancer office some of my thoughts...like a little primer in customer service and patient emotional care.

In retrospect, I may have gained a bit of insight into two year old children.

Saying "no" feels good.

It is empowering.

And I didn't even stomp my feet.