Our Chemo "Adventure

Our Chemo "Adventure"

Today I had to bring my kids with me to chemo.  I knew this wasn’t going to be easy, so I told them we were going to an adventure to the hospital.  I didn’t mention most of the adventure consists of me sitting in a chair for 3 hours.  They were going to have to figure that out on their own.  Brinley has been to the Cancer Center with me a few times for CBC’s and she has delivered lunch when I was getting a blood transfusion, but has never been there for the full duration.  Coen is usually in school so he really hasn’t been to the hospital my second home.  As soon as we got there Coen noticed the rooftop putting green outside for cancer patients and visitors.  He went to the window and looked longingly at it.  Of course he wanted to go out there, but I reminded him it was too cold.  He asked if he could go out there in the summer when I have chemo.  I was elated to tell him that I won’t have chemo in the summer, I will be done with chemo!!! Yay!!!  I shared this obviously exciting news with the kids, but I could see Coen was thinking about something.  His reply to my enthusiasm was “I kind of wish you still had cancer in the summer so I could play out there.”  Really?  He must have seen the disappointment on my face because he added “just a little bit of cancer.”  I knew if I didn’t laugh I might cry.  So I laughed.  I told him that instead of me having cancer, I would happily take him mini-golfing as much as he wanted this summer because I was hoping I never had to endure chemo again.  Our “adventure” was off to an interesting start.

I packed an adventure bag with snacks, crayons, coloring books, and a movie if needed.  They were great almost the whole time.  We went back to see the doctor and Brinley called him a “paleontologist”.  Coen corrected her saying “he’s not looking for dinosaur bones Brinley.  He’s the oncologist.  Right mom?”  They always find a way to make me laugh.  The nurses let them “help” out by holding the bandages and stuff.  The kids were so interested in all the tubes and cords and watching the medicine enter my body.  They asked a million questions and were truly exploring. We spent the next couple of hours coloring and having a snack.  Then, my neighbor/friend came to pick them up.  Once again she saved the day.  The kids were just starting to get restless and began fighting over the rolling chair and who would push my IV pole while I went to the bathroom.  Overall, the kids were incredible and I think our impromptu adventure was a success!

Looking on the Bright Side…Coen and Brinley are always amazed at my coloring skills and gave me numerous compliments.  It’s almost enough to make up for the cancer in the summer comment.

 

The Results Are In...You're Still Not Well

The Results Are In…You’re Still Not Well

The official results of my wellness screening came via mail today.  I already knew what to expect, but it was still difficult to see on yet another piece of paper that I’m sick.  Another confirmation that my life has changed because of my health.  This packet is full of more information that my health has failed me, but it taunts me.  Printed on this packets are sayings like Knowledge is Power and We believe in the power of your good health.  They should have a different packet for people who fail the wellness screening.  People who open up the packet and have to read about their bad health don’t want to be thanked for participating in the program and be told that “this program has provided participants like you the information they need to better understand and gain control of their health.”  I’m pretty sure that is all written in a sarcastic tone just for me.  The sentence about how “this screening process is intended to identify areas that you may choose to improve, so you can maximize your current health and live your life to the fullest” is especially cynical.  Really?  I was living my life to the fullest, until cancer came along and threatened everything I knew.  The real slap in the face…my cancer prevention score is 90.4%.  That is my “success score”.  That’s what it says!  Everything points to me being a healthy young woman, yet here I am. 

The packet also includes an overall wellness score based on the lab results.  A score of 1, 2, 3, or 4 is assigned with 4 being the most significant for health concerns.  Every year up until now, I have received a 1.  This year, it’s no surprise I received a 4.  It shows results that are significantly or critically outside the reference range for a person of my age and gender.   Another failed test.  I’m getting really good at failing.  Does that count for something?

Looking on the Bright Side…I think I have an idea for a new font; it’s called sarcasm.  This way when you type in a sarcastic tone, it will be obvious to the reader. 

Call Me Back...You're Not Well!

Call Me Back…You’re Not Well!

It’s a couple days after the Wellness Screening and I get a message from someone at the Laboratory who would like to discuss some of the results of the blood test with me.  She would like me to call her back right away.  I know what this is about.  Although I filled out the questionnaire which included the information about me having cancer, it must not have made it to the people who analyze the blood sample.  I call her back during my chemo treatment, I have plenty of time. 

I barely give her my full name so she knows who’s calling before she starts in.  I guess she has been waiting for my call back.  I should just make it easy on her and tell her upfront that I have cancer so I already know I’m sick but I think she has been rehearsing what she’s going to say to me so I let her start.  She has the test results from my blood sample on her desk and she does what doctors and nurses are often so good at doing; she’s setting me up gently for a big blow.  She doesn’t know that I already know what’s coming.  She begins to tell me that my white blood count is very low (actually for a chemo patient my white blood count of 1.6 was considered decent, up from 0.0!) and recommended that I see my personal physician immediately as such an abnormal result could indicate something serious.  She is about to continue when I stop her.  I let her in on the secret.  Surprise!  I have cancer!  I knew all along that I wasn’t well!  Ha ha, joke’s on you nice lady!  I hear the relief in her voice when she realizes that she isn’t the one to have to break the bad news to me, “you failed your wellness screening and you’re incredibly sick”.  I thank her for calling me with the news and let her know that I appreciate the quick and personal response rather than having to wait another two weeks for the results to come by mail.  Had I not already known, it would have meant a great deal.  She wishes me well and makes sure that I am getting my CBC’s done and monitored regularly.  I let her know that yes, they are completed every week and my last one was done just a few minutes ago.  I’m sure she is happy to be able to cross my name off of her list of dreaded things to do today. 

Looking on the Bright Side…it was oddly amusing to know that I gave someone good news by letting them know I have cancer.  I felt like it was very generous of me to not have to let her think she was delivering horrible life changing news to me.  That’s already been done.  You’re welcome!

Wellness? Check

Wellness?  Check

Every year through my job (the school district) we have had the opportunity to participate in a Wellness Screening Program.  This is the first year that it was mandatory, unless you don’t mind a monthly fee for not participating.  For the past few years, I have always done the wellness screenings, but knowing I wasn’t well this year I could have done without it.  To avoid the extra cost, I did the free screening which includes getting results from a series of blood tests, my BMI, blood pressure, a health questionnaire, etc.  I went in to the school gym wearing my head scarf and an obvious “I am not well” look to participate in the wellness screening.  Kind of ironic, right? 

I did everything I needed to do, including the Health Power Profile Questionnaire where the question “do you have or have you ever had cancer?” came up.  I realized that for the rest of my life I would have to respond to that ominous question with a “yes”.  Which I reluctantly did.  What would happen if I put “no”, would it change something?  I guess not, it would just feel so good to be able to put “NO!!!!”  (I would have had to add the exclamation marks).  All those previous years of filling out this questionnaire I breezed by this question.  Now this question brings me so much pain.  Now this question takes my breath away for a moment.  I think there should have at least been more options to choose from other than just a simple “yes” or “no”.  There is nothing simple about cancer.  Maybe they should take a cue from Facebook and add an “it’s complicated” option.  Or there could be an “according to the doctors, yes, but I am still in denial” option for those who are not ready to commit to a full blown “yes”.  Or maybe a “don’t worry about it” option for those who are exhausted with all the cancer talk and questions.

I guess I will wait for the results to arrive in the mail.  I already know what they are going to look like.  Am I well?  No, but it’s complicated!

Looking on the Bright Side…my blood pressure, cholesterol, and BMI are completely normal.  Take that cancer!

My Hair is Growing!!!

My Hair is Growing!!!
My hair is growing!  My hair is growing!  I feel like Chicken Little freaking out about the sky falling.  I thought I felt a bit more stubble/peach fuzz when I ran my hand over my head, but I wasn’t sure.  Then this morning I look at my underarm and yes there is definitely a tiny bit of hair there and a tiny bit of stubble on my legs.  This is mostly great!  I will say it has been nice that I haven’t had to worry about shaving.  The last time I shaved was December (I should mention, it maybe isn’t all that unusual to say in March that I haven’t shaved since December, so let me clarify...this is the first time I haven’t needed to shave).  The hair on my head is growing back, that makes me very happy.  Now I know it is going to be a painfully long process and I may get desperate.  I already have a vision…think baby girls who barely have any hair, but their determined mothers gather that little amount of fine hair to the top of their head and they put a bow on it.  I may do that.  And if you see it, please play along. You could tell me that I look great and maybe comment that my hair is "getting so long”.  Humor me. 

Now I’m going to grab my friends Henny Penny, Loosey Goosey, and Foxy Loxy to find the King and tell him the great news.  My hair is growing!  My hair is growing!

Looking on the Bright Side…My daughter has a lovely stash of colorful headbands, bows, barrettes, and hair clips that I know she will gladly share with me. 

Until then, I will share my head scarves with Brinley.

My So Called Journey

My Journey
Some people refer to their cancer experience as a “journey”.  That may work for them, but it doesn’t sit right with me.  I’m undecided what to call it, but the word journey sounds too much like a trip or too Chris Harrison-ish from the ‘The Bachelor’.  I need a different word; something less like an outing or a ride.  Maybe excursion?  No, still too trippy.  I need a word that captures the drama and intensity of cancer.  A word that reflects the unpleasantness and unpredictability of life with cancer.  Does a word like this exist?  I can’t say the word ‘journey’ without visualizing a rose ceremony.  Although it is a dramatic rose ceremony and the person whose “journey” has ended without a rose does leave in tears.  They leave thinking their dreams of a perfect life are suddenly gone.  Maybe they are not so far off. 

Maybe cancer is the “I’m sorry you didn’t receive a rose” ceremony from up above.  That would definitely qualify as the most dramatic rose ceremony ever.  I will keep thinking about.  In the meantime, I’m going to work on finding some dramatic music.

Looking on the Bright Side…I am working on planning a trip-excursion-outing to Jamaica to celebrate the end of cancer.  That is a journey, ya man!

No rose for me:(

Winning or Losing?

My life is so full of contradictions right now.  My emotions are like a roller coaster and I have been screaming to stop the ride but it just keeps going.  Some days I feel so strong and I feel like I got this, I will not let cancer destroy my life.  Other days I feel so weak and overwhelmed and wonder if cancer is getting the better of me. 

Some days I look at my body and think I look fine, the scars and the hairless head are signs that I am a fighter.  Other days I want to avoid the mirror at all costs because nothing says “ugly” like having no breasts, no hair, no eyelashes, and no eyebrows.  I am appalled by the person looking back at me.  It is all a reminder that cancer has invaded me. 

Some days I want nothing more than to get out of the house and enjoy the real world.  Cancer cannot stop me.  Other days I just want to stay home.  I don’t want to see anyone or go anywhere.   

Some days I walk into the cancer center and I’m ready.  I’m ready for chemo and I remind myself that I am young and my body can probably handle it a lot better than the other patients who are 40+ years older than me.  Other days I walk into the cancer center feeling depressed that I have to be back.  I’m upset that this has happened to me now.  I’m too young for this.

Some days I want to pretend that everything is back to normal, but even on my “good” days I am still exhausted and weak.  I’m just well enough not to feel horrible.  I actually forget what it’s like to have energy and to have a carefree day.  Every time I have to take my medicine, or go to the hospital, or take a nap, or look in the mirror I am reminded of cancer.  Depending on the day, I feel like either a fighter or someone who just got knocked out.

Looking on the Bright Side…I do look forward to sounding like a badass some day when I can finally say that I am a cancer survivor.