Archive for September, 2009

one down, twenty seven to go

September 30, 2009

Ok, so today I finally got my first radiation.  It was really kind of anticlimatic.  I spent all my anxiety energy yesterday on what I thought  was my first radiation.  Radiation is so different from chemotherapy.  Most everyone has told me how much easier it is than chemotherapy.  Well, I’m here to say, it is not necessarily easier, just different.

I think chemotherapy is very tactile, very physical.  When you get chemo, people come and talk to you, they bring you something to drink or eat.  The nurses come and pat your arm or just visit with you for a minute.  It is a very feminine way to interact.  Yea, sure chemo is hard on the body, and can even be painful, but the treatments themselves are made bearable by the many kindnesses shown by the incredible nurses in the oncology practice.  At least that was my experience.

Radiation is different.  While it is seemingly noninvasive, the feeling you get at the point of treatment is quite isolating.  The technicians are so busy, and completely focused on getting the body into the correct position for the treatment, the connection to the human contact with the patient (me!) is seemingly secondary or maybe even third on their list.  Now, not all of the nursing staff is this pressured for time, for space, for….etc.  Some of the nurses on the outside of the immediate radiation bubble are  compassionate and interactive. 

It has been suggested that I wouldn’t feel the tightness of skin for a while, too.  I think that is a little white lie, too.  I think it is definitely tighter in my left chest, the treatment side, than on the right side.  Yea, I know there has only been one treatment, but that is what I feel.

Right now, too tired to go on.  I’ll try to remember to tell you about the “kid” on the Radiation Oncology Ward……………

Imagine my surprise….

September 29, 2009

 —when I went to Flower Hospital today to receive my first radiation treatment……..except I didn’t.  Didn’t receive the treatment, that is.  And I didn’t even quite realize that, until it was over, except that it wasn’t.  Sound a little like Alice in Wonderland?

Can this rollercoaster ride get any more wierd or what?  Nevermind.  Forget that question. (Don’t want to invite insanity into my already unsteady life.)

So anyway, after much anxiety last night I woke up this morning pretty much ready to receive my first dose of radiation for any funky cells that might be hiding out in my chest.  Had the sweetest nurse, lead me through the labyrinth of halls to the dressing area, and we hit it off right away.  I tried to just stay there and chat with her, but noooo, I had a job to do.  Had to get undressed (top half only, please!) put on the decidedly unfashionable and HUGE hospital gown & bathrobe to wait my turn.  Oops…no need to wait, step right on down the hallway, turn this way, turn that, and through the 8 inch thick door to……holy cow, a very, very large machine with a hard flat surface where I am supposed to lay.  I tried to stall for a few minutes with some lame questions of whats this for and whats that there, but it was inevitable.  I was gonna get on that hard bed for a little ride.

And there was Betsy, the body cast.  MY body cast.  I figured if I am to spend 14 or more hours in the next five weeks laying “perfectly still please” in this body cast, at least she should have a name.  Today I had quite a conversation going with myself in my head while I was laying perfectly still, and “Betsy” won the naming rights.  Lucky me, I have been doing quite a few arm exercises during my walks this summer and having my arms in position above my head (elbows above my ears) is not a bit uncomfortable.  Actually “Bets” is a pretty cozy place to be. 

So there I was, snug as a bug in a rug, and in THIS COLD ROOM, unlike the cold simulation room from last week, they actually tuck your body, arms, hands, and bare naked head up in warmed blankets!   Wow, what a relief that was!  It may seem like a small thing, except it’s not.  Last week I would have paid mightily for a little warmth, and this week it came automatically.  Things are lookin’ up already.

Anyway, it was a helluva long time of this great big machine moving up and around and making noise, and there I was, all by myself.  The rest of the party was behind the great big thick door.  Well, I guess they were “listening” or at least they told me they were right there and could hear me and see me the entire time.  But it doesn’t seem that way when you are in the room all alone.  I guess this is something I don’t like…the lack of human contact in the radiation room.  I imagined this is what people who claim alien abductions go through, because it sure was an alien experience for me.  Especially wierd is seeing yourself  when the clean shiny glass surface periodically rotated into my field of vision.  And the reflection you see is your scarred, bare naked chest with a “pick-up-sticks” pattern of red laser lines scattered about.  It is difficult to keep your head perfectly still in “Bets”‘ when you just want to gawk at that image for as long as you can.

Then, as if that wasn’t eventful enough, this lovely and efficient nurse came in and gave me another pinpoint tattoo.  Sweet thing that she was, she apologized for the pinprick I was about to get, not realizing that I have no working nerves in that portion of the center of my chest.  Can feel the pressure  just barely, but pain from a pin prick?  Nope, can’t feel it.  Now I got six little bitty tattoo’s.   

Well, after what seemed like a real long time, but was only probably 25 minutes or so, they came in to get me up and escort me out.  Only then did I completely realise that I had received no radiation.  It was another kind of “set up” experience, they were aligning equipment, lines of proposed radiation, and who knows what else.  I must say it was kind of disappointing news.  I don’t know how I misunderstood this.  Perhaps it was mentioned when the nurse called to set up all my appointments, but I was so eager to get going that I didn’t hear correctly, or perhaps it was not mentioned at all.  I don’t know which it was.  All I know is that I still have 28 days to go.  big sigh….  It’s all OK though.  I am continually relearning what disappointment is, and how insignificant it is all at once.

There was one big bright spot in the day though.  Research nurse Joyce enrolled me in a clinical study integrating the Nia method of exercise into your lifestyle while undergoing radiation treatment for Breast Cancer.  I was to be placed in one of two arms of the study….the control group with no specific training or exercise, or in the group with instruction and a plan for the Nia method of exercise.  I hopedhopedhoped to be placed in the Nia arm, and whoopie, I won!  I’ll find out more tomorrow about the details of the Nia method, but today I provided baseline data with a 6 minute brisk walk calculating the “mileage” and some range of motion evaluations as well.  It felt good to be doing something that actually feels good. 

I’ll tell more about Nia as I learn it.  Right now it is time to go sleep in anticipation of a half day of work tomorrow, and, once again, my first day of radiation!

 

Radiation Blues

September 29, 2009

September 28th, 2009

It’s radiation eve for me, the house is quiet and I seem to be doing everything under the sun to avoid going to sleep.  I know that this is going to be way easier than the chemo…I’ve heard it over and over from friends and strangers alike, but I can’t seem to shake the creepy feeling that the thought of radiation gives me. 

Wish I could suck back some of that warm fuzzy pink feeling from the Komen “walk” on Sunday…especially being on the field with the other ladies. 

What is my problem?  and why can’t I just get over it? 

Komen Northwest Ohio Race For The Cure

September 27, 2009
Charlie, normally allergic to pink, gets into the spirit!

Charlie, normally allergic to pink, gets into the spirit!

All I can say is, this was priceless to me.  Both of my boys willingly got up at 7:00 am and didn’t complain about going to the Race for the Cure this morning.  They stuck real close, and didn’t annoy each other too much.

I got to visit with lots of colleagues and students from Anthony Wayne.  We had the largest team at the race with over 400 participants!

Also had a chance to see my friends from The Victory Center. 

Now I am off to an “oncology massage” at the Center for Healing Arts here in Perrysburg.  More later!

The radiation schedule

September 26, 2009

Now, for the moment I have been waiting for………(drumroll optional)…..The Radiation Schedule! 

Finally got the phone call (waited 8 days from the set-up appointment) and found out I’m a “two-fer” girl.  Most people get only one appointment time, one 15 minute time slot, but I get two appointments,a 30 minute time slot!   I don’t really understand why (unless it is just that I’m so damned important!).  Hopefully I will get the time to ask questions on my first date with the radiation girls, but I won’t hold my breath.  So far, my impression of the radiation folks is that they are veryveryvery busy, and really are just trying to get their job done, and will answer the questions if they can do so while they are doing some kind of busy work out of your field of vision.  Maybe I’m being unfair….but that is just my impression at this point time.  I’ll have 28 consecutive daily opportunities to get a better perspective. 

The sweet sounding woman who called me with my schedule told me that trying to schedule a double appointment is very difficult, and she had to jump around for times, but this is what I got:

The first appointment is this coming Tuesday, September 29 from 9:30 to 10:00.  Feel free to think of me then.  I know I’ll be a little anxious about the whole thing.

Then the next 7 appointments are at 2:30, which will necessitate me working only a half day.  This really disappointed me at first, but since my first three days back at school were less than successful at teaching all 7 periods, maybe it is OK.

After that, my appointments are at 3:30.  Lucky me, I get to wake up at 4:45 to get ready to go to work, work a full day teaching 120+ kids, and when the end-of-the-day-bell rings, dash up route 23 to Flower Hospital to get irradiated.  Then scurry home to pick up kids, do homework, make dinner, figure out what the hell I am teaching the next day before the next day arrives……….every day until November 5th.

Really, I am grateful.  I am aware daily that I am lucky to be going through this, lucky that it was discovered before it destroyed any more of me.  Now that I am back at work, life is zooming by quickly!  While this is good on one hand, I miss the reflection time.  I am teaching two new classes this year, and even though it is familiar content, it all needs to be rearranged which requires thought and some new resources.  I welcome the change of topics for my brain, but it has added anxiety (again) to my already full plate of mixed emotions and concerns.  I want more time for more research, though I don’t really know why.  I have read so much already about this part of my treatment……I think that perhaps the studying has been like a security blanket for me.  The more effort I put into understanding, the less intimidating it is, or the better I can visualize the processes occurring in this struggle of medicine versus cancer.

Tomorrow, downtown Toledo will be splashed with pink.  The Komen walk will take over the streets.  I have mixed feelings about doing this, but I’ll be there with my sons.  I’ll tell you more about it later.

Help! I laid down and can’t get back up!

September 23, 2009

So today, day two back at work, taught for 4 classes, then at lunch laid down and couldn’t get back up.  Seriously.  I knew the bell had rung and just laid there.  Now I didn’t abandon a bunch of kids in my classroom….I knew my wonderful substitute would just pick up the ball, but I really could barely move, let alone try to teach a class.  I think it is all the energy work I had this summer which permits me to quickly fall into a deep relaxation, so with just a 30-40 minute “chill out” I felt so much better and headed back to the classroom.  Although I did have a few teary moments when I thought about how inefficient I was at that moment.  I felt like my body and mind weren’t cooperating, and being the owner of both of them, I am unable to make them mind.  Again….it’s hard when you are not used to being weak.

Then you just have to figure out how to scrape yourself up and move on.

Did have some good news though.  Got the call about the start of radiation.  Next Tuesday at 9:30 am.  Lucky me, I get two time slots for some reason.  More on the next post, time to fall asleep now.

day two, back to work

September 23, 2009

Yesterday, my first day back at school was exhausting.  I had to lay down at lunch and then only will power kept me going for three more class periods.  Took a nap when I came home, forced myself up again so as not to destroy the sleep pattern for the night.  No major assassins on  sleep from the night except for the usual moments of heat waves. 

But still I am more tired than usual as I get ready for work.

This is so disappointing.  My mind is ready to move on, but the rest of me doesn’t seem to be cooperating.  Reminds me of something my friend Anne mentioned to me last month, “It’s hard when you are not used to being weak.”  You would think I would be used to that by now, but I’m not.  Tears come too easily when I think about how to manage this return to work…..and I don’t seem to have any answers.

tuesday 1:57 am

September 22, 2009

Been awake for 53 minutes this time, flashing heat like crazy, too.  Don’t have time to “write it out”….today is the first day back at work and I need to wake up in 3 hours with energy and life.  Now I’m worried about oversleeping on top of being tired.  

How do I overcome this?

Back to work, I think….

September 21, 2009

Well tomorrow, I will be back at work….I think.  As of Friday afternoon my “release to work” document had not arrived yet at my supervisor’s office…..  I am hoping it maybe went to the wrong place and is waiting for someone to “claim it”.  Or maybe this is just one more thing for me to get anxious about (already has happened.)  However, at this point, I am also anxious about returning to school, too….anxious about how kids are going to react to me with my new “look”, a kinda’ bald, and stubbly hair (not attractive).

One thing I will really miss is the early morning walks I have religiously completed.  It is slightly more than 2 miles and includes a steep, stone staircase 55 steps up and 55 going down.  I have looked at the daily exercise as my “job” since both oncology docs have stressed the importance of exercise to my recovery.  I have walked, even on days I really didn’t feel like it, and most days completed more than the 2 miles, including the wickedly difficult stone staircase.  For someone who was a “hit or miss” exerciser, this is pretty good for me.

  

RACE FOR THE CURE

Just in case you were wondering……I am participating in the 16th Annual Susan G. Komen Northwest Ohio Race for the Cure on September 27, 2009.   If you are interested in making a donation, you can visit http://nworace09.kintera.org   and visit my donation page where you can make a gift via your credit card. Simply click “Donate to a Participant” and look me up by first name: Kay-Lynne

I am wholly uncomfortable asking people for money, so this is the only time I’ll mention it, but I am thrilled that I am halfway to my goal of a $100.00 donation!  The Komen Foundation raises money for the battle against breast cancer through education, screening, treatment and research. Best of all, up to 75% of the funds raised stay in our 24 county Northwest Ohio community. The remaining 25% funds the Komen Foundation Award and Research Grant Program.

RACE FOR VICTORY

Also, the Student Academy of the American Academy of Physician Assistants (SAAAPA) at The University of Toledo is sponsoring the 3rd Annual “Race for Victory”5K Run/3K Walk on Saturday, October 3rd, 2009, at Swan Creek Preserve Metropark in Toledo. All net proceeds raised by this event will be donated to The Victory Center.  Of course, if you have read any of my blog, you know how much I love TVC which is a non-profit organization. It is not a government agency nor is it a recipient of United Way funds. Every dollar raised from individual donations, foundation grants, corporate or business contributions, and special events is earmarked to provide programs for cancer patients like me and their family members.   Unfortunately, TVCand the SAAAPA group does not have a handy “click it and donate” function on their website, but if you are motivated to donate, you can send your check to: 5532 W. Central Ave. Suite B, Toledo. OH 43615  (PH: 419-531-7600)   or visit the Victory Center’s website: www.thevictorycenter.org 

There.  Done with the solicitation. (Took me three days to get the nerve to write and post this.)


back to work plan

September 17, 2009

Well today I took a big step in reclaiming my old life.  I stopped by school to talk to my principal and long term substitute teacher about my “return to work” plan.  It was a good day to do this, too, as it was one of the “cook-out” potlucks organized by our amazing and wonderful staff, so everyone came to the lunchroom.  I had the opportunity to at least say hello and show off my new stubbly hairdo.

What a nice group of people I work with.  I received a lot of great big hugs, well wishes, and even some lovely gifts (jewlery!!)  I am a little bit apprehensive about returning to a full work day, but I couldn’t possibly ask for a better place, or better people to work with.  So here is the plan:  I have been released for part-time work for 2 weeks, and after that, I think it is my call, but I plan to be working full time by the middle of October.  The way I plan to organize the “part time” plan is to work for three days in a row beginning on Tuesday.  There might be easier ways to work 24 hours in one week, but I think this is better for the students.  At least I hope it is…

Now, of course, I haven’t started my “radiation” yet.  I am still waiting for “the call” which will tell me when I start the treatment and what time of day.  I sure hope they got the message that as a teacher, I can only do this after 3:30 pm, otherwise it will ruin my carefully laid out plans.  Of course, I know that at the Cancer Center, they have lots of other priorities other than my wishes to plan around…

I’m keeping my fingers and toes crossed that I hear something tomorrow (Friday) so I don’t have to endure the weekend still with all this uncertainty.