Week One - Done!

Despite it's somewhat inauspicious ending, week one is done!  I say it was inauspicious, not because I did not do yesterday's radiation (I did!), but because I got tested for Strep and was, unfortunately, positive.  Despite those results, when we went to pick up my Rx, it had not been called in yet.  The next morning (today), still no meds for Kelly and I was starting to feel quite bad.  After calling the triage nurses at Froedtert and getting an answering machine, I finally decided to call their "emergency" answering service - shows you my level of desperation.  I got through there and they were super-nice and understanding and within a few hours I received a call from Walgreen's that my prescription was in.  Hallelujah!  I am now on the road to feeling better.

Even though I had chills yesterday and an extremely achy body, I still had a nice time at radiation.  A nice time, you say?!  Yes.  After completing the day's radiating the girls confronted me saying,
"We hear you don't like Country Music?!"
Uh-oh.  Whoops.
I said, "You got a hold of my blog!"
"Nope", they answered.
Dena came down and told them, "No more country music!"

DENA!  You wonderful, hilarious, sneaky, awesome friend!  I love you to pieces.  And, boy are you devious!

After that, the girls (we need to come up with a name for this awesome team of women) and I talked for quite a bit about my blog and what was on it, etc. I also learned a little bit more about them and I feel so very privileged to have them on my team to make certain we rid my body of any lurking cancer cells.  The thing I love the most about them is their huge smiles when I walk in every day.  No matter how much you love your job, there are always things that happen that can get you down or distract you.  But, these girls are always smiling.  They made sure there was no Country playing today and Courtney even fixed my damn (sorry) chin strap so that it's no longer choking me.  They make sure I have warm blankets not just around my legs, but also each of my arms, and they laugh at me when I throw up my eyes everyday at the taping down of Girlfriend No. 1.

I am very thankful to have them.  And now, I will address them directly:

Dear Barb, Kacia, Courtney, Kim, that dude that was there that one day (ha! sorry, I don't remember your name!), and anyone who happens to be there in the future:

Please don't take anything I wrote previous to this day as something against you.  If I complained, it was about the situation.  If I griped, it's because it's what I do when I find myself in strange situations - I find a way to complain about it in a semi-humorous way and then I move on in life.  If I swore, it was not at you!  You have all been nothing but professional, helpful, kind and understanding.  The torture you inflicted upon me was simply your job and something I completely understand.  I signed up for it because I want my best chance at being rid of the C-word for-ever.  I mean this truly when I say to you - I love you all.  Can we be best friends?!

Sincerely, 
Kelly Kons

Today's selfie (from left to right): Kacia, me, Barb, and Kim (not pictured Courtney)

Courtney - don't let me chicken out from asking you for a picture!

Really?!

Sorry for the lack of post yesterday. I went to bed early due to not feeling so well myself. Now this morning my throat hurts worse when I swallow. I think it may be time for me to get tested for Strep as well. Grrrr...  I can't believe I made it through six months of Chemo with one small cold (that did knock me out, but still...) and now that it is almost Summer I get sick?! Crazy. 

Here is yesterday's selfie. 

This is my friend, Erin Ledlie. She was kind enough to go to radiation with me yesterday. It was especially nice of her as I had my first weekly doctor appt. and didn't know what to expect. But, because t was the first it went very quick. Still, kinda boring for people who come with me to just sit in the waiting room for a half hour. It sure does make the car ride more fun, though!  Thanks, Erin!

Afternoon selfie:

Come A Little Closer

Day Three and also the third day that I heard the song "Come a Little Closer" on the radio as I was getting radiated.  I thought "Radioactive" by Imagine Dragons would be my theme song for these weeks, but now I am thinking that maybe I am inviting these rays to come a little closer, or maybe I need to listen to the entire song thoroughly for the message I may be missing out on.  (Nope.  Just looked it up and I gotta say I don't think I am missing out on any hidden messages there.)

Here is my selfie for the day:

Frustrated

Titled, "Frustrated" because shortly before I took this picture I received a call from Matthew that Lariska came home from school today sick.  I left for Physical Therapy at Froedtert at 10am and then stuck around the hospital for 1:15pm radiation. I got out of PT to find like four missed calls on my phone.  One from the school nurse, one from my mom, one from Matt, and one from...I am not sure...it probably wasn't related to Lari being sick.  Anyway...Lari has been complaining of a sore throat.  Matt has tonsillitis and is on antibiotics for it and you may remember back in February that Lari ended up in the hospital from being dehydrated due to Strep Throat. Well, I was not going to take any chances, so I called the pediatrician and waited on their Nurses Line for quite some time before finally getting through and made an appointment for 2:45pm.

I was not particularly looking forward to having to sit in the hospital between appointments for an hour, but I didn't mind that I was going to get to read my book for awhile.  Well, between calls to Matt, my mom, and the Ped. I had five minutes left before I had to be at radiation.  Sigh.

But, on the plus side, radiation was super-fast today.  On Monday and Tuesday they had to take some x-rays (I don't really know why - it has something to do with making sure the radiation is going to hit the right part of the body and not the wrong stuff.  You know...we wouldn't want to get extra poisonous horrific stuff places it doesn't belong, but it's okay to put it where there once was cancer?!?! So weird.), but today they didn't need to take any and so it was just positioning and re-positioning and taping and such.  I think it took maybe fifteen minutes.  And a few of those minutes were the "pleasantries" where we all asked each other how we were and that kind of thing.  It is kind of fun getting to know Barb, and Kacia, and Courtney.  They are all super-nice and answer all of my questions very easily.  And, they said I can bring my camera in any day I want to so I can add some visual aids to the blog.  I am going to try and do that tomorrow.  Yay!

After radiation, I headed home, grabbed Lariska, went to the pediatrician, found out she does indeed have Strep, went to the pharmacy, got her prescription (and eight new toothbrushes as well as some Children's Advil), went to Panera Bread and got some soup for her for dinner and then finally came home.  By the time I got here it was 4pm.  Sheesh!  Long, crazy, frustrating day.  I am glad it is now almost bedtime.  I, for one, am ready for bed!

Three down, twenty-seven to go. 

Day Two

After attending the Burleigh Volunteer Appreciation Breakfast, Sue Brandel accompanied me to radiation. I asked her kind of spur of the moment if she wanted to come with me and was thrilled when she said, "Yes."  Radiation is not like Chemo where attendees get to sit with me. I go in a back waiting room and everything, so friends sit in a separate place from me. And then I spend the next 20-25 minutes receiving the radiation, which no one would want to be near, anyway. So, it was awful nice of Sue to go with me. It made a dull car ride a lot more fun!  And, we had a short lunch together in the hospital bistro afterward. It had been awhile since I had been there, but next time we need to go somewhere more fun!

Thanks, Sue, for going with me!  Day two was a lot better than I thought it would be!  Two down. Twenty-eight to go. 

Radiation - Day One

I have been trying to come up with something creative to make my thirty days of radiation more fun. Originally, I thought I would get something for each day and fill a jar with those somethings.  Or hand them to the radiation people every day.  Or have them hand me something.  Yeah, nothing really came to mind.  And then the weekend was over and it was Monday and other things in life seemed more important.

So, when we were on our way to my first real radiation appointment today (Matt came with me), I was disappointed I had not come up with something to make this more "fun".  (Let's be honest, for the last two weeks I have been turning to Matt and saying, "I don't want to do this." at random intervals.  I mean, come on, who, really, would want to do any of this?  But, with Chemo I had just been newly diagnosed and was desperate to do anything to get the cancerous sh#! out of my body and my friends came with me every time and made me laugh.  And then with the surgery, while something I so-did-not-want-to-do it was just an obvious necessity to get past - twice.  But, with the radiation, it feels superfluous and silly, and really, all I can think of is "Project X"  and that silver arm coming out of the floor and I don't want to be some monkey flying a simulated airplane just to see how long my brain will function!...  Okay, did that just get weird?  Forget that part...  Can we just make radiation fun somehow?)  So, finally I decided I would take a daily selfie in an attempt to document my feelings for the day.

Day One:  Trepidation (Fretful?  "I don't want to do this!")

As it turns out, Day One was not so bad.  If you can get past the part where my arms were back above my head and slightly raised, and Girlfriend No. 1 was taped to the table.  If you can get past the damn (sorry) chin strap that chokes me out and irritates my ear.  If you can get past the fact that they had to take an additional x-ray before the thing began.  If you can get past the part where I chickened out and didn't ask them to change the radio station (Country again).  If you can get past the hard table and the drawing on the body and the cold exposure of my self to the colder machines.  If you can get past all of that...then...yeah, this was the easy part.

The actual radiation?  Takes like 30 seconds three or four times over.  There is a quiet clicking noise while it is happening and it is very short.  Can't see it.  Can't feel it.  The majority of the time is taken up with the drawing, the taping, the positioning, the re-positioning, the checking and double-checking. My arms still fell soundly asleep.  My psyche still felt like I was trapped in a choke-hold.  And my modesty still had to go out the window.  BUT...it was much shorter and I have now met these people before.  I can see how they will become friends over the next six weeks.  Dr. Wilson is still not safe from the cursing, but at least I can see that it is now going to get easier.

And the countdown begins.  29 more to go.

The Big Easy - Part 2

MFT.  I will share with you that "M" stands for Medieval.  And "T" stands for Torture.  I will let you figure out what the "F" stands for all on your own.

Tonight was what I believe they refer to as the "dry run" for radiation.  I returned tonight to Froedtert and was introduced to my "team".  I will have the same three people, for the most part, for the next six weeks.  This evening I met Barb and Kacia (Kay-sha) and I believe the third person's name is Courtney (but you only get two at a time, so I will have to meet Courtney another day). They seem very nice and helpful, but I must be a dunce because when they told me that when I come in (I took that to mean "in the future") I can ask them for whatever radio station I would like, I just nodded my head and smiled. Refer to this moment later.

Here's what they don't tell you beforehand about the dry run  - in order to set the machines up properly for the exact area of your body that they are going to radiate, they take a series of x-rays.  Do you get to sit in a nice cushy chair for these rays of sunshine?  Oh no.  Of course not.  Nope.  You must lie on the same plastic table, with just a towel and a gown between you and the hard knocks life, with both your arms over your head and slightly raised, yet again, no real cushion under your head, and the chin strap firmly in place causing a wonderful choking sensation.  And, by the way, remember when that CT scan was the longest five minutes of your life?  Yeah....  These x-rays are gonna take like a half-hour.  Now, stay still.

I am not catholic, but Holy Mary, Mother of God, this is some kind of torture.  The lights go on.  The lights turn off.  You hear a clicking occasionally (of the x-rays).  Sometimes the bed-thingy moves suddenly causing a disorienting/nauseating sensation to creep into your head and then you realize there are people in the room with you again, but because of the damn (sorry) chin strap you can't see anything except what is exactly right above your head and, gee, it would be a little bit nice if they informed you of their presence, but then they are by your head with a marker putting dots on your body ("Don't worry, they come right off in the shower.") and telling you that the machine will now rotate under your body to take x-rays and then they are gone and there is more lights on, lights off, click, click, click.  All the while, your arms are above your head and slightly raised and they have gone from prickly, to painful, to numb, and then back again.  Oh, and did I mention the radio is set to the Country Station? I am sorry if this offends you, but that is a whole new torture all of it's own.  I thought I was supposed to choose a station in the future.  Not today!  Sheesh!  Thirty minutes of just about anything else (except, potentially Rap) would've been better.

And then...the second time they come in to adjust all the knobs and buttons and doo-hickys (not really, mostly they adjust my body to what I assume by the reflections I see, are lights appearing on it to show them where everything should be - thus, the tattoos), they tell me that they have to restart the computer (not the entire test, praise the lord, or we would have had some t-r-o-u-b-l-e) and that it will just take a couple of extra minutes.  Hey, no worries folks.  I didn't really need my arms, anyway!?

By that point, I had actually gone from being nervous, to somewhat relaxed, to extremely uncomfortable, to internally slap-happy.  Suddenly it all felt like a big joke to me.  Country music?!  Ha ha ha ha.  Computer reboot?!  Hee hee hee hee.  Tattoos and markers?  Ho ho ho ho.  X-rays and radiation.  ROTF.  

Okay, all set.  Now lie still.  For twenty more minutes.  Ahhhhhhhhhhhhhhhh!

The next time they came in I heard the biggest joke of all.  My nearly-B non-cancerous breast is in the way of the radiation beams so they will have to tape it down to get it out of the way.  Okay, what?! Yeah...they don't want to radiate anything else other than the specific area that needs to be radiated and that includes Girlfriend No. 1, so it will have to go ahead and get out of the way via a long piece of tape that stretches from my chest to....the table!  Yup!  The table.  Chin strapped in.  Breast taped down...to the table!  Awe-some.

I have no modesty left.  None.  It is gone.  I am now officially eighty years old and will be talking about just about everything you never wanted to know about being eighty years old.  Thanks, cancer. Good one.  I am now my grandma.  Try me.

By the time it was all over, my arms were somewhat floppy, my head felt fuzzy from being on that hard surface, my back was stiff, and ear was bright red from where the damn (sorry) chin strap was digging into it.  But forty-five minutes later ("Sorry that took extra long")...it was over.

Apparently, next comes the easy part??? 

Great Expectations

Disclaimer: I wrote this post several weeks ago, basically a few days after my second surgery.  I had actually gone through the process of posting it and then shortly afterward jumped over to Facebook to see what there was to see there.  When I got there I discovered that my sister had posted a very enthusiastic and wonderful post about how I was cancer-free -- and she included a link to this blog...which was just fine and totally okay, except that I didn't want a person who knew very little about me to jump from her excited post to my cynical and snarky post (below).  It didn't feel right, so I took the post down.

Later, I talked with a new friend of mine about our respective blogs.  Jamie is a member of the Young Survivor's Coalition, and she encouraged me to put this post back out there.  To not sugar-coat everything, but to be real.  I think that, for the most part, I have been pretty real on this blog.  I leave out details sometimes because it is either just too much information or not something I feel comfortable sharing.  And, in general, I make it a rule not to post on bad days because it is my experience that one bad day is followed by five good ones and I don't think those days are a fair representation of myself.  For example, I might have a down day where I question absolutely everything, but then the next days are great and I talk myself back up again and know that everything is going to be okay.  A few hours of negative thinking does not warrant a word-rampage -- I would rather wait for the time when I am back to myself to share my thoughts.

But, what I wrote below did not come from a bad day exactly, more like a general feeling of this experience overall.  And so...I am going to go ahead and share it.  In the end, I feel it was a positive message.  Happy reading.

05/01/2014

Apparently, I have been so spoiled by the miracle of your prayers throughout this whole cancer adventure that my expectations have gotten out of hand.  Chemo went so well and I was hearing that my tumor was 1cm or smaller and I just felt so close to that "Complete Response" thing.  And, I stupidly read on the internet - something they told me not to do and I really haven't done too much of - that getting a complete response greatly reduces your risk of recurrence.  I can't remember the percentage and don't feel like I should look it up now anymore, but yeah...I was just so excited because I was so close.  Really. I could taste it.  And, it sounded so, so good...

When I looked in the mirror after surgery, I felt like I no longer recognized myself.  Well, actually, I have been feeling that way for a long time.  But now it really hit home.  I have been bald for the last six months, I have a scar where they put in the port and a bump where the port sticks out.  My nails are discolored and my toes feel arthritic.  I have gained 10-15 lbs (depending on the day) and now I have mis-matched breasts -- one smaller than than even before.  I have a long scar across that breast as well as another one under my right arm.  I have a hole under my right arm with a tube hanging out of it where the fluid my body used to drain via my lymph nodes is now being drained into the tube.  I have to empty that tube several times a day.  When I look in the mirror, I am just not sure I see the same person anymore.

But, when our surgeon heard about my disappointment at the lopsided boobs, her response was something to the effect of, "But your missing the point.  Your lymph nodes were clear!  And, also I can't even tell when I look at you that one is smaller than the other." (As I am wheeled out of the hospital with a surgical bra on.)

I told Matt this evening that I guess when you have cancer you have to lower your expectations a little.  I guess you are not supposed to be disappointed by a .5cm tumor, or lopsided boobs, or hair that is coming in unevenly.  I guess you are supposed to rejoice that your hair is coming in at all, that you still have some breast left, and that there was hardly any tumor for them to take.

No really.  That is what you are supposed to do.  It just doesn't seem fair.

So...this is me, lowering my expectations a notch and apologizing for getting out of hand............

...Okay, and now this is me shaking all of the sarcasm out of my system and truly saying to myself and everyone I know and thanking God from the bottom of my heart that:

1) I am alive
2) I am cancer-free (and radiation will hopefully make that even more certain)
3) I am so blessed to have such an amazing network of pray-ers and supporters and friends
4) That even though I set my sights a little too high, the goal that we attained is still absolutely, and undeniably amazing.  And, I could never take that for granted.

So, thank you all so much.  I could not have gotten this far without all of you.