Another quick update.....

Be careful what you wish for......I was thankful last week that with my new treatment, I didn't experience the "Chemo Cloud" that I had experienced with my other treatments.  Unfortunatly, that side effect was replaced with severe body aches that I have had to put up with for the past 5 days.  Feels like I have been hit by a bus (repeatedly).  I was down and out for the holiday weekend which made me a bit blue.  Hoping the aches will begin to ease here soon........Just wanted to update you.  I will hopefully be on the mend here shortly.


Sometimes rock bottom is good.....solid ground....
and a dead end street is just a place to turn around....
    Buddy Buie and J.R. Cobb

Chemo Treatment #4.......

Quick update:  2/3 of the way through!  Ya-hoo!  Two more to go......

This was the first of the last three treatments with one drug rather than the three I was getting.  I had no allergic reaction while being infused (Thank, God).  Risk is there for the next two but only during the infusion.  Although I am feeling the usual fatigue, I do not have as much of the "Chemo Cloud" that hangs on for days that I had with the other three treatments.  Hopefully that will remain the case with my next two treatments.  But of course, with each side effect that is taken away - others are given to you.  I will be gaining weight with this new drug.....water rentention.  So if you haven't seen me in awhile and bump into me somewhere, I will be the fat, bald woman.......Don't know how I am going to merge into my fall wardrobe with the extra weight gain.  Sure don't want to buy new clothes!  But, I am willing to take this on, too, if the chemo does its job and rids me of any remaining cancer cells.

More updates later this week.....Thanks for sending me those inspirational songs and CD's.  Di is willing to burn me a new CD with the single song titles.  I just love it and I am keeping track of who has sent me which song so I can feel your energy and love!

Thanks for the continued prayers......



"There is in every true woman's heart a spark of heavenly fire, which lies dormant in the broad daylight of prosperity; but which kindles up and beams and blazes in the dark hour of adversity"........Washington Irving

Thanks, Karen  ;-)

Post Traumatic Growth .....

My friend, Vicki, is witty, creative, smart and lives every inch of life.  I wish I would have tried half the things she has tried in her life including learning to ride a motorcycle.  Vicki is an excellent rider.  Five years ago she was in a terrible accident.  I received the call from her husband the day before my 50th birthday that she was in a hospital in Nashville with multiple injuries including a fractured pelvis.  Vicki was in for a long recovery.  It was extremely serious.  I told both her husband and her son, that if anyone had the will and the drive to get through an extended recovery - it would be Vicki.  She didn't let me down. When I went to visit her in Atlanta 3 months after the accident, she had graduated from a wheelchair to a walker.  We went to the pool every day so she could get her swim therapy to help her shoulder injury.  She confessed to me that she wasn't suppose to be going to the pool on her own but she had been for two weeks.  She needed to get on with it.....start the recovery.....not wait around for someone to help her.  (Sorry, Mike, hopefully she confessed this to you.)  She continues to amaze me with how well she has recovered.The pieces and parts that still might give her pain or discomfort, she deals with and moves on!  She stopped by my office the other day with an interesting article that she said reminded her of us.  The article was on a new study on Post Traumatic Growth.  The opposite of Post Traumatic Stress disorder.  The article talks about those individuals who continue to grow and learn and produce after a traumatic event or events.  Well, that certainly fits the bill with Vicki and my sister who both inspire me.  But I wasn't sure about me.  I was flattered she put me in the group. I certainly have endured heartache and grief in my life and I am still standing but alot of people manage through these circumstances.  Maybe the cancer will add to my strength once I have made it through the recovery.  I remember my cousin once told me that recovery is 10% of the statistics and medical treatments and 95% attitude.  We have all read or heard stories about individuals who have endured more than their share and somehow, some way they rise above and come out stronger.  I told my sister that one day after Jake is in total remission and living his incredible life, she will be a resource and inspiration to mothers who are in the position of having a newly diagnosed child with cancer.  She has truly kept herself together for herself and her family through these past two years of all the surgeries, treatments and therapy with Jake.  Amazing.  And Vicki?  She is back on her motorcycle with the wind blowing through her hair.....(figuratively that is as she wears a helmet.....)  

So, in my last blog I reached out to all of you to send me your inspiration song titles......Aly sent me a list.  Vicki dropped off a CD!!!  They are the only two people I have heard from so....... my request comes again to send me your song titles or burn me a whole CD!

 "Sometimes the only steps that matter are the ones you take yourself."  (from one of Vicki's inspirational songs).

Music Therapy.....

I have been friends with Diane for over 30 years.  (God, hard to believe. ) We worked together and lived in flats in the city when we were in our 20's.  I could be sure of two things whenever I went over to Di's flat.....music was always playing and candles always burning.  I can still count on those two things when I go to her house now.  Di put together a beautiful CD for me of inspirational music she downloaded.  It has been an incredible gift.  All the songs are wonderful but I want to tell you about two particular songs on the CD that are my favorites.  One is a song that I have never heard.  It is called "Look to the Rainbow".  Treat yourself and go to utube and pick your favorite artist's rendition and listen to it.  I find myself humming it.  It brings me joy and peace.  The other is the theme song from "Rocky".  I was never a big Rocky fan because of the violence in the movie but I did appreciate the underlying theme of getting what you want because of passion and dedication.  Well, let me tell you that when that theme song comes on, my friends at work have to put up with me jogging through the hallways with my boxing and fighting moves.  I simply HAVE to get up and move when that song comes on.  It is perfect to keep me in fighting shape.....

So obviously I have been thinking alot about music and its healing qualities.  When Jake was in the hospital in ICU and purposefully paralyzed in order for his body to recover, from the allergic reaction and complications he had from blood platelets, I know my sister sang him his lullabies every night.  When I stayed with him when my sister would have the occassional dinner with Mike or go home to be with her other boys, I, too would sing to Jake.  I would sing him this non-sensical little song that my friend Carol sang to her children when they were babies.  I, in turn, sang it to all my nieces and nephews and my children.  So, I sang him that song to let him know I was there.  Then I would sing him a song from Nemo (his favorite movie).  It was the song that Doree sang to Nemo when he was in a challenging situation....."Keep on swimming.....Keep on swimming"......I was trying to keep Jake "inspired" to keep up the fight as Di is trying to keep me inspired.  Jake certainly fought through it all and continues to fight.  After he came out of the paralytics, the music therapist would come in to work with him.  Sue and I often rolled our eyes as this baby could not speak or sit up and we thought the music therapy wasn't important as each day was a challenge just to get him through.  But Sue relented and the music therapist started out just playing a few chords for Jake each day.  Then it became a song.  Then Jake was singing!  To this day, he LOVES to sing and often asks me to "Sing me my songs, Aunt Joan"....the ones I sang to him in the hospital!   

So my friends and family, find your song and sing it loud especially when you are feeling a little down, it will lift you up!   I would love to hear your suggestions for me for songs you find inspirational and I will have Di burn me another CD.......

Sing, Sing a song
Sing out loud, sing out strong
Sing of good things not bad
Sing of happy not sad.......

As my friend, Bob Dylan, says....

A hard rain's a gonna fall.......

What a week.  My third chemo treatment seemed to really take it out of me.  I don't know if it is a cumulative effect that is catching up with me or if my body is just tiring but none-the-less I am half way through my chemo treatments.  The next three treatments will be one drug only rather than the three I have been getting.  Don't know if that is a good thing or bad.  Will have to wait and see.  My oncologist did mention that this one drug is known to cause allergic reactions so they will administer the first one very slowly and monitor me.  Next treatment is Aug 29.

Besides my chemo, it has been a very emotion filled week thus my weepiness I suppose.   A good friend of mine died after battling with ALS for 6 years.  I know people often talk about how "special" people handled a particular illness after they die but she was truly incredble.  She was an amazing person before her diagnosis - soft spoken, funny, VERY laid back. She kept her grace and dignity throughout the six years.  If I heard one person say how amazing she handled it, I heard a hundred.  We were in awe.  Horrific disease that no one should have to endure.  Mark and I went to her service on Saturday.  It was a beautiful day after all this blasted heat we have been having.  I heard some of the most beautiful music I have ever heard at a funeral service.  I truly believe that she was one of those angels walking among us.  God rest her soul.

This past week also brought news about my nephew Jake.  His 6 month MRI came back clear which is great news.  The miracle continues.  However, the doctors are insisting that he now go through a very long, delicate, serious surgery to repair his esophagus.  This little guy has been through so much that it breaks our hearts to think he must endure more.  But the doctors are all impressed at how far he has come in the last year and the surgery is necessary so we must move forward.  (read my sister's beautiful words on caring bridge for details.....)

So I guess considering this week, it is no surprise that I found myself sobbing in my bed a couple of nights uncontrollably.  It was the the kind of cry you just can't stop.  The kind of cry that is raw and full of pain but is cleansing and healing once it is over.  At first I tried to stop but then I realized it is simply part of the journey. 

I realize now that I was crying for more than myself and the long road of treatment I have ahead.  I was crying for the loss of my friend and her family that now must learn to live without her; I was crying for my sister and brother-in-law as they prepare to surrender their child once again to the doctors and their expertise; I was crying for all the changes that have happened.  But a hard rain has fallen and a good rain cleanses everything and sometimes provides a rainbow..........

As I wondered what quote I was going to end my blog with, my friend, Karen, who makes me these beautiful cards filled with inspirational quotes sent me another.  It is no coincidence that once again the quote she selected said it all for me after this past week.....Please keep our jake in your prayers (and throw me in there, too!)

"Courage doesn't always roar. 
Sometimes courage is the little voice at the end of the day that says,
"I'll try again tomorrow!" ...........Mary Anne Rasmacher

WHY CAN'T I THINK PINK?

I know about strength in numbers.  I know about the solidarity of a group and representing that group as a whole. Countries are recognized by the colors and symbols of their flags.   I remember our school picnic parades as a kid where each class was assigned a "color" to dress in to stand out, identify, be part of the pride of being in that grade.  We all know that pink is the universally recognized color for breast cancer awareness.  I remember walking in the Komen Race with my family in memory of our mother and seeing the sea of pink and how moving it was.  Why can't I think pink now?  Why can't I embrace the color and its instantly recognized branding?  Is it because I am now part of the club?  A club no one ever wants to be part of?  A club we can only hope will someday be disbanded?

I remember seeing women that I now look exactly like.  They were women I would pass in the grocery store, at a restaurant, the park or simply walking down the street.  They were women who wore the baseball caps that I now wear, the scarves sometimes under them to somehow try to hide those areas that were bald.  We all know they have cancer.  I use to do one of two things.  The first would be to catch her eye and give a small smile of what I hoped came through as encouragement rather than pity.  The second would be to not catch her eye at all so that she could feel "normal" and not be looked at, judged or pitied.  Ah, but I now know the second option was never helpful as you never feel "normal" again.  At least, not for a very long time if ever I suppose.

I see people look at me now that I am bald and wearing my hats.  The weather is "too hot for hair" right now in St Louis so I do  not wear my wig often. I see them look at me exactly the same way as I looked at all those women before me.  Most of the time, I try not to make eye contact as I am not yet a totally comfortable member of the club but every once in awhile I make eye contact.  And when I do, it gives me strength.  I feel like a fighter that must look at fear right in the eyes.   I am surprised at myself that I have gotten quite comfortable so quickly with my new head and its' wardrobe.  But I learned from Jake and my sister that your new "normal" is set for you pretty quickly and you have to get right back up when you are knocked down in order to keep going.

When my mother was fighting her battle, we rarely talked about the cancer.  It was the big pink elephant in the room (god, even that elephant was pink!).  We went to her doctors appts, sat by her hospital bed, watched as her hair fell out but we never TALKED about the cancer.  Pink wasn't even in the picture then.  But now I have an ocean of support and people I can talk to daily if I want to.  How afraid she must have been and didn't vocalize it to anyone that I know of.  I have a list as long as my arm of people I can call and cry with, laugh with, shout with or simply be with.  We have come come along way and I am sure all the dollars donated has made that difference.  And if the color pink helps people make that connection, then it has already done its job.

Maybe I will get use to pink although I don't think so.  I want it to remain my daughter's favorite color without bringing to mind her mother's cancer; I want it to be the color of the roses on the 50 year old rose bush in my neighbor's garden; I want it to be the memory of the bridesmaid dress I wore in my sister's wedding; I want it to be the color of my husband's dress shirt (my favorite); I want it to be the memory of the pink and white checked seersucker dresses that my mom, my sister and I wore one Easter (now a fond memory - at the time not so fond).    Maybe in my lifetime, I can see pink go back to just being the "pink" I had in my life before my diagnosis. Maybe in my lifetime, the club I am now a member of will be disbanded.

 Presley bought me a tshirt to wear to my chemo appts.  It is a white tshirt with pink and brown writing. It says "think pink" on the front in small lettering.   If someone comments on my shirt, I say you must read the back for those are the words that mean everything -
                                                                               
                                                             Supporting the Fighters
                                                              Admiring the Survivors
                                                                Honoring the Taken
                                                        And Never, Ever Giving up Hope

PROS & CONS OF BEING BALD

PROS

Only need one towel to shower
Less money spent on shampoo and product
Less time getting ready in the morning
Guess I can find out who really does have more "fun" - through a blonde or brunette wig (Thanks to Brig for that "pro")
Now when I say "Who loves you baby?" it has much more impact!  (My younger family and friends might need to google that to see what I mean)



CONS

My pjs sometimes get "stuck" on my stubble on the top of my head
Don't know where my face "ends" when putting on my makeup
Need a place to hang all my hats
Spending more money on earrings to go with my new bald look




When the World says, "Give Up", HOPE whispers, "Try it one more time."......unknown author