Plain and Simple

Posterior Subcopsular Cataract, ever hear of it.  I didn't until last Thursday.  The doctor wondered why I hadn't heard of it since I already had one on my left eye.

Flashback Spring and Fall, 2004

I have reading glasses now, but I am having a very difficult time at work seeing the numbers and letters on a page.  They are awfully blurry and it seems to have happened overnight.  I have found the solution though, all I need to do is wear my glasses, and keep my left eye closed.  This works for about five minutes and I feel a headache coming on.  Okay, I guess I will have to make an appointment out of my 'oh so busy life'.  Busy by the way of going to work and then coming home and going to bed.

I see the doctor and he tells me I have a cataract.  It usually happens to people in their 70s and 80s.  Okay.  I go for the surgery in the Fall, which apparently they have fast-tracked me in because of my age.  I am young to have a cataract and when I go to the Pan Am Clinic to have it done, I see that 'yes' I am young.  Everyone else in the room is 90 or 100.  I feel almost like I should have a diaper on.

Jacquie (taking me again) the friendliest person to old people is chatting and having a merry time with the seniors and they love her.  I am tight-lipped and pissed off that I even have to be there so I am not speaking.  Besides that I wouldn't be able to hear them anyway. (As my good friend Deanna would be able to testify as she was always interpreting for me at work at the time.)

I have the surgery and it is easy as pie.  The most painful thing of it all is that it feels like you have a bit of soap in your eye.

The next day I think someone has turned on a really bright light.  It is amazing how well I can see and how wonderful everything looks.  Even my dirty kitchen looks that much dirtier.  It is awesome.

Present Day

Last Thursday after my tooth fiasco, I go to the eye doctor.  He says 'What can I do for you?'  I have a cataract. 'What makes you say that?'  I had one once before on my left eye.  Okay, he does some tests.  He says 'You have a cataract on your right eye.'  No shit Sherlock.

He says "There are three types of cataracts and unfortunately you have the rarest and most aggresive type."  Just a second, I'm confused, am I in my oncologist office.  Rare and aggressive are words I have heard before. Words that struck terror into my soul.

Posterior subcapsular cataracts typically start near the center of the back part of the capsule surrounding the lens. These cataracts often advance rapidly. For many patients, major impairment of eyesight, including near-vision problems and glare, develops within several months.  Cataracts form in front of the posterior capsule as a cluster of swollen cells. The posterior capsule is the lens casing at the back of the lens. These cataracts develop as independent, isolated entities.  Although they are not common, progression and severity can be more extreme than other types.

How can I have this.  How can I have gotten, not only one of these but two of them and both in different eyes?  Do my children need to worry about this happening to them.

He says "Even though these cataracts usually occur in the elderly, they are rare.  Your children do not have to worry about this.  80% of the population will get the type that as they age they just feel that maybe their vision is getting worse.  Another 10% it is genetic.  The other 10% is the type of cataract you have.  It is not what you ate, it is not what you did.  Plain and simple it is just bad luck."  I could swear he looked at my PICC line as he said those words.

Bad luck, I feel crushed.  Tell me about it.

He proceeds to tell me that 'I will need to have cataract surgery as soon as they can get me in.'  I tell him, that it may have to go around my chemo, depending on what is going on.  He tells me 'that if there were no cataract surgeries I would probably be blind within the year.  As my left eye would have already been blind and my right eye would be going in that direction as well.'

I tell him that plain and simple "Aren't I lucky than that they do have cataract surgery as I will be able to see well again in no time."  And having said that I realize that I am.

I just got off the phone with the doctor's office and they have set up an appointment for me to see the specialist in May.  Who would have thought that my breast and my eyes would have so much in common.  Rare and aggressive and now a long wait to see the specialist.  When I waited to see the breast surgeon my cancer became irreversible.  

Plain and simple --- Wish me luck that I get this operation sooner than later.

Welcome Home

Rest in peace Angie.

Valley of Death

Angie is dying.  I am praying that you die Angie.  I know what you wanted.  Please God, if you haven't taken her yet, please take her now.

Jill and Helen if there are really pearly gates, please open them for her.

God, Angie really believes in you.  Please don't disappoint her.  

Angie, death has cast a dark cloud over you for 4 long years.  I need you to be able to see some light now, to have that dark cloud disappear.  You have suffered pain and mostly you have suffered at the thought of leaving your two beautiful boys and your wonderful husband.  These enemies have to be put behind you now.  Death is our final destination Angie and all of your strength and courage cannot overcome it.  It is here.  

The Lord is my Shepherd; I shall not want.
He maketh me to lie down in green pastures:
He leadeth me beside the still waters.
He restoreth my soul:
He leadeth me in the paths of righteousness for His name' sake.

Yea, though I walk through the valley of the shadow of death,
I will fear no evil: For thou art with me;
Thy rod and thy staff, they comfort me.
Thou preparest a table before me in the presence of mine enemies;
Thou annointest my head with oil; My cup runneth over.

Surely goodness and mercy shall follow me all the days of my life,
and I will dwell in the House of the Lord forever.

You love God so much Angie.  Make him answer all the questions you had for him.  Let him know you weren't ready to leave your little boys.

I love you Angie.  I will miss you Angie.  I will miss all your questions.  Your never ending questions.  You are brilliant.  I love you Angie.

Dwell in the House of the Lord Angie, so that I know what door to knock on when I come to call on you to play.

Tilt Your Head Back

Just before Nadalene and Charlton's wedding in September a cap on my second molar was very loose and I thought it was going to fall out.  

Okay, simple enough, go to the dentist and get it pushed back in more firmly.  Just one of my famous last thoughts.

I need to set the stage here before this actress can go on.

I was getting my chemo (FEC) every three weeks so the timing with the dentist was important.  My blood had to be up and my chemo gut had to be down.  Fine, I get myself to the dentist and guess what, it is not so simple after all.

Number one, my gums have shrunk, probably from the chemo and so the cap no longer fits.  Fine, make me another one.  Number two, can not do that as the tooth and post have broken a bit and there is nothing for a new cap to hold on to.  Number three, I will have to go see an oral surgeon and get the tooth pulled.

Okay, what could I get done that day at the dentist.  I get some x-rays which should have been a few minute process which dragged on for 1/2 hour because of my severe gagging.  In she would shove the film.  Out I would pull it and hold my head over their garbage can.  In she would shove it, out I would pull it.  Finally I told her to give me the film, for her to stand by the camera and as soon as she saw me put in the film that she should take the picture.  Believe me it was a Herculean effort.  After that I get my teeth cleaned (You can only imagine.  And if you can't, re-read the bit about the x-rays).

I can't get in to see the oral surgeon until after the wedding.  Needless to say, I just kept pushing the tooth back up in my gum.  By the way, it fell out when I was eating a chocolate bar and I thought it was a stone or even a little bone from a mouse.  After washing the chocolate off of it I realized that it was my cap.  Then of course my tongue went up to the molar and sure enough the cap was missing.

I see the oral surgeon in October, he tells me he will pull it that day, but has to call my oncologist's nurse (Lori, who I love) first to see if my blood is okay.  He comes back in and tells me that No, he can't do it and they will have to wait until I come off of chemo.  My tooth is not killing me so of course I stay on chemo.

In the meantime, I need to go back to my dentist beause the post they put in to hold the cap feels like steel and it is long and cutting the shit out of my tongue.  The dentist proceeds to file the steel down.  Now I have the grinding sound with steel chips going in my mouth and the hygenist with a water hose scooping them out.  Does it sound fun?

Four months later, I am on a break from chemo so I rebook an appointment with the oral surgeon.  I tell him he has the go-ahead from my oncologist, but more importantly from my nurse Lori (hee hee).  

My appointment was on Thursday.  Mickey dropped me off and I went to face the music.  I was an absolute nervous wreck.  I need to reset the stage before I open the curtains.

Up the elevator to the 8th floor.  Down the hall to an office within his office.  The dental hygenist is kind (Kendra remember that).  I sit on the dental chair and tell her that I am nervous (as if she doesn't have eyes in her head) and that I have a bad gagging reflex.  She tells me not to worry as they are faster than a dentist's office and it only takes more time if the tooth breaks.  She leaves, the dentist comes in.  He tells me that it will be fine and that he will just give me a couple of needles to freeze it and then we will be on our way.  He puts a dental bib on me  and gives me a needle in the cheek (not bad) followed by a needle in the roof of my mouth (holy shit).  Tells me he will be back.

I sit straight up in the chair telling myself that 'fear is the mindkiller'.  I breath in and out and try to relax my muscles.  I look out the window at the CTV building, nothing seems to be working.  I am still petrified.  

I look out the window again and I see my reflection in the glass, it is almost like a mirror.  I see a giant baby Josephine with her bib on.  (I'm lucky I get to feed her quite often.)  I keep looking at myself/Josephine and then I actually start making baby faces and doing baby snarls at my reflection.  I keep snarling and moving my head just like Josephine does.  A miracle, I don't feel quite as afraid anymore.  Thank you Josephine.

The surgeon and the hygenist come in and I am all set to go.  I keep my eyes closed and he pulls.  He tells me she will have to hold my shoulders down as I keep popping up and he keeps pulling.  Tells me to open my eyes.  I do.  He says are you okay.  I nod.  I close my eyes.  He keeps pulling.  

Now he tells me what I don't want to hear.  The tooth broke
and now he will have to pull the roots out.
I tell myself what I want to hear: it doesn't hurt, they are
 almost done, keep your eyes closed.

It is done. I pay.  I phone Mickey.  Mickey comes to get me.

I get in the car and as she says how did it go.  I cry hysterically.  My nerves are shot.  I appreicated that Mickey reacted exactly like I wanted her too.  She said nothing and just let me be, because sometimes there is just nothing to say.

I want you all to know that I had myself all worked up for nothing.  We just can't let our fears get the best of us.  Do what you need to do to bring yourself back to what is real.  If it is horrible, it will be upon you soon enough.  Fear just makes it that much harder.

Thanks for listening to my whinings everyone.  Love from the actress with a huge gap in her teeth on the left hand side.

The Ant and the Cheese

Two months after I was diagnosed with cancer I registered for an art therapy group that would meet once a week at the Breast Cancer Centre for Hope.  Angelique and Nadalene really encouraged me to attend this and I am really glad I did.

It was at art therapy that I met the only other lady I know that has Inflammatory Breast Cancer.  When I stated that I had IBC, Pat touched my arm and said that she had it too and that she was alive five years after diagnosis and that I could live longer than six months.  Pat has since become a very dear friend and I love her courage and enthusiasm.  Pat, you may never know how much you encouraged me that day and on the days since.

The session lasted about 1 1/2 hours and started with us all sitting in a circle (about 10 people).   The therapist would tell us what we would do that day and then we would work on it for about 45 minutes and then we would meet back in the circle and discuss what our work meant to us.  We were discouraged from talking while doing the work which was great because I always felt like I was alone and I was right into my project.

Flashback - April, 2006

Our first assignment was to do a collage.  Tanis, the therapist, had set up tables with different pictures torn from magazines covering the tables.  We were told to pick up any pictures that we had a reaction to and then make a collage.

The following are descriptions of my pictures and what meaning they had for me.

The Word Caught = I felt caught.

Robot Man on the Moon with the word Science = I depend on science to live.

Five Hearts = Wahid, Me, Angelique, Nadalene and Nathan.

Home Sweet Home = My family life.

The Number 49 = I was 49 years old when I was diagnosed.

A Lady Favoring Her Left Breast = My left breast is my healthy one.

The Word Play = Because I forget how too.

Sphere = My mind.

A Jug of Water = Because I have to drink it all the time and it makes me gag.

A Woman With Many Faces = The many fronts/faces I wear.

Sheep = I feel like a sheep being led to the slaughter.

Prison Bars = I feel trapped.

The Word Stroke = I wish I would have had a stroke and died then it would be easier for me and my family.

A Head With Another Head Growing Out of the Back of the Skull With a Screaming Face = I have to be careful that I don't let my mind go crazy.

The Word Watch = I need to watch.

An Older Lady With Her Face in Her Hands Looking Defeated = How I sometimes feel inside.

A Man in a Bed Holding on to His Back = Cancer in my bones causing a sore back.

A Ticket Dispenser With a Red Cross on It = Blood transfusions.

A Traveller Being Followed by a Crocodile = Just reminded me of a book or paper I have.

Cartoon of a Woman Dressed for Outdoors With the Reflection of a Man in a Mirror = I felt the woman is looking out at darkness and the man in the mirror represented my cancer outside, only it is inside because his reflection is in the mirror.

Snowflake = Because I love Christmas.

The Word Family = My family.

Five Stick Figures = Wahid, Me, Angelique, Nadalene, and Nathan.

A Life Machine Graph = Up and down, just like I feel.

Two Ants and One is Carrying a Long Piece of Cheese = The ant is doing the impossible carrying how many times its weight with the cheese; if the load gets too heavy the other ant can help.  It reminded me that the impossible can be done and I have a lot of support.  I am not alone, even though I have to carry the weight alone.

When we all gathered in a circle to show our work and to discuss it, I realized I was in a room of talented people.  My work all throughout art therapy was childish in appearance.  The work, however, touched my core.  After we sat, and others discussed their work and what the pictures meant to them, it was my turn.

I was extremely emotional.  And I mean EXTREMELY emotional.  I could barely string two words together.  I was sobbing like my heart was broken.  My heart was broken.

I came home and showed my family and each time I showed someone I was bawling like a baby.  It was great.  

I had never reached my emotions before in a visual way.  It has always been with words.  I honestly can't say enough about how helpful it was to me.  I now understand why they have art therapists who work with children from war-torn countries.  You need to get these feelings out.

Even though I know that this was just over two months after my initial diagnosis when I attended art therapy and that I was an emotional wreck, I believe that it did wonders for me.

I need to revisit art.

"Poof" Their Gone

"I have cancer" works better than "abracadabra" at making friends disappear.

Cancer, in and of itself is a landmine.  That I will agree with.  But I want you to know, that as of today, it is not contagious.

Friends and family have withdrawn from me since I have been diagnosed with cancer.  It has never been overt, nothing I could really catch them on.  It was much harder, it was subtle.  That avoidance of eye contact, the digging in their pockets or purse as I sweep by, or that sudden and animated conversation with their spouse.  Either way, it hurts.

When friends or family hear that I have cancer they are so terror-stricken that "poof" they either disappear or are struck into in-action.  I know that there are many reasons for this, but to be honest I DON'T GIVE A SHIT, so please keep your reasoning to yourself.

I know that my family and friends love me and are worried about me.  I love them and am worried about them too.  I also know that it is hard to stay invested in someone who is going to leave you.  Caring about me will cause you sorrow and pain.  Remember that caring about you causes me sorrow and pain now.  I die, you hurt.  You cared, I die, I hurt you.  Self-preservation sets in.  Maybe you need to set yourself apart from me to save yourself.

Cancer has changed who my friends are.  Family and friends I thought I could count on have vanished and new friends and some old friends have gone over and beyond the call of friendship.
 
Jill, Helen, Darlene, Angie, Sally, etc. etc. have all experienced the disappearance of friends.  It has broken some of their hearts.  We have all been understanding, more than understanding.  Seeing all the reasons why our friends and family would need to avoid us.  It was never a condemnation about them.  And as a matter of fact, instead of feeling sorry for ourselves we felt sorry for the family member or friend.

But why not a condemnation.  I can't speak for Jill, Helen, Darlene, Angie or Sally, but I will speak for myself.

Condemnation, why not? Really, why shouldn't it kinda be a condemnation?  They find it to hard to be around us for whatever reason.  Really, what is it like for us than, if it is too hard for you to be around us.  You poor people that don't have cancer, but only have to be around a person with cancer.  How horrible your lives must be.

On the whole I have more family and friends that have stayed and supported me than have vanished and left me.  I am thankful that they realize I have cancer and not the plague.

Know better and do better.

Partners for Life

This picture is what my parents would have looked like surrounded by their 13 children.  The only difference would have been that in my family there are 9 girls and 4 boys.  Even though my oldest sibling is a boy we always state "9 girls" first.  Hit people with the sucker punch.

I love my brothers and sisters very much.  In my family the oldest and thrid oldest children are boys and the youngest and third youngest are boys.  Aren't they lucky to be surrounded by all those girls.  I think so, because my brothers are well loved.  Let me play the name and number game.

Harry Camille = one son.
Kathleen (Kathy) Jean = one son and two daughters.
Dwain Larry Bruce = four sons.
Suzanne (Suzie) Cecille Antoinette = two daughters.
Monique (Mickey) Desiree = three sons and one daughter.
Camille Francois = two sons and one daughter.
Jacqueline (Jacquie) Bernadette Opal = two sons and one daughter.
Renee Gabrielle = two daughters and one son.
Colette Michelle Therese = one son and one daughter.
Loretta (Lori) Jean = no children.
Gerard-Michael (Gerry) = two sons and one daughter.
Rochelle (Shelly) Marie = one daughter and two sons.
Joseph (Joey) Paul = two sons and two daughters.

So the number is 13 children have 35 children.  If we each had 13 children like our parents the number of children would have been 166.  

The people we marry come later in our lives and our parents will at some point have to leave us. So our siblings may be the only people we'll ever know who truly are our partners for life.

In our family we have lots of love.  The great part of a family our size too is that if someone is fighting with someone else, the other siblings tend to help them sort things out and make-up.  Of course, having to crawl into the same bed at the end of the day with the person you were fighting with helps too.  

We also have a lot of skeletons hanging in our family closet. My own closet is relatively empty and it is certainly not up to me to discuss what anyone else has in their closet.  But having said this, I also want to say that we support each other and we try to make sure that no one gets eaten by the wolves.

I have been dealing with a crisis for over two years and I can tell you that every member of my family (with the exception of a younger sister who has cut herself off from the family completely) has stood by me in some way or other.  They are here for me to help keep the wolves at bay.

My sisters are my best friends as well as my best friend Heidi.  (Heidi, believe me you are something to squeeze into that mix.)  I love and am loved by my siblings and I am grateful.

I am also so in love with the 35 children I mentioned earlier.  My neices and nephews.

I have 11 partners for life and I consider myself very very lucky in that regard.  I often wonder how people (my own children included) can sleep in a bed by themselves.  It was so cozy sleeping with two sisters on each side of me and even sometimes having another two sleep at the foot of the bed.  Mind you, they might think Mickey, me and Shelly were at the foot of the bed but they would be wrong.  Right Mickey and Shelly.

I love my childhood but even more than that I love my partners for life.

I Have the Sun

Really, what a beautiful day.  What could be better than celebrating a day of love (Christmas).

Where I am in my life right now, I am just happy to be here.  I have no expectations for something grand.  I will be happy with what the day brings and I will not be disappointed.  

In someways I have always expected Wahid to come riding in on a white horse, with a bottle of champagne in one hand, a card and a ticket for Paris along with the reservations for our dinner under the Eiffel Tower, and a dozen roses stuck between his teeth.  I wonder why I was disappointed.  Maybe I wanted to be disappointed.  

I looked for the moon when the sun was sitting right there in front of me the whole time.  I wanted the moon with all its mystery and aloofness.  I wanted the moon with all the romance it symbolizes and in someways I wanted the crazy wild werewolf howling at the moon too.  What I had and have is the sun.  The warm comforting sun, which greets me in the morning with its sunny smile.  The sun with its steadiness.  The sun with its rays of hope that fill up my day.  I am so happy and content to have the sun.  The one thing I did get however, was the crazy wild werewolf howling at the moon.  And I like my werewolf just fine.

Valentines usually brings with it a lovely card and some roses.  Something I just learnt recently was that when you juggle the letters of the word Rose we get the word Eros who is the God of Love.  Last year Wahid bought a wonderful card and three roses.  He said they were for each of his children.  For those of you who know Wahid and for those of you who don't.  He is the wisest, sweetest man I know.

Once upon a time in a romantic century it was believed that birds chose their mate for the year on February 14th.  Since doves and pigeons mate for life they symbolize loyalty, fidelity and love.

Wahid and I originally met at a house party at his brothers.  I worked with Wahid's sister-in-law Charlotte (Charlotte died of cancer) and was invited to her housewarming.  I remember seeing this really good looking, and I mean really good looking guy (Wahid).  Wahid was dressed in white bell-bottom pants and a blue and white polyester top.  Does it sound over the top, well it wasn't.  Honestly he was (still is) striking.  Anyway, really never said two words to him, and he never said two words to me.  All I know is that he was a dancing machine (and still is).  We did dance.

Charlotte and I are at work and she invites me over to her house for dinner a few weeks later (of course by this time I have told her that her brother-in-law is gorgeous).

I am sitting on the couch, Wahid's little nephew Micheal is sitting there and we're talking.  Wahid comes into the room and sits on the other end of the couch.  He is looking at me, I smile and say "Hi."  He replys 'Hi.'  I continue talking to Micheal and Wahid keeps looking at me, actually he is really staring at me, at this point it is uncomfortable.  I turn and look at him, he keeps staring, I turn and continue talking to Micheal.  Now Wahid is trying to intimidate me, he is staring and not turning around.  So, I twist in my seat and stare right back at him.  Now we are having a staring contest.  Next thing I know he smiles and then acts like a normal person.  I'm like "if you think you are going to intimidate me buddy that is not going to happen."  He calls me a week later to go to a show.

Wahid has been given an opportunity to say his version of the story.  I told him to write his version and I would write mine.  He declined with a laugh saying 'I don't want to tell people my business.'  I laughed and said they are going to know it anyway.  

By the way, the story of the staring contest, did have some context for him.  He wanted to see how I would react before he got too interested in me.  He says he likes the fact that I have so much 'umph' and was not cowed by his look.

I am pleased to say that after 34 years of being together I can still get butterflies when he walks into a room.  How lucky are we.

The rest is history (which I will revisit) and as a matter of fact we have had three little valentines of our own.  We call them Angelique, Nadalene and Nathan.

Happy Valentines my Valentines.

My Weekly Flush

Yesterday I made my weekly trip to Cancer Care Manitoba at the St. Boniface locatiion.  I have PICC care once a week and it can take anywhere from 15 to 30 minutes.  While I was there I thought I might describe the PICC care and the chemotherapy rooms for all you lucky people that hopefully will never ever have to receive this care or enter these rooms.

A PICC is a long, flexible tube that is put into a vein in your arm and threaded up into a large vein just above your heart. It is used for giving fluids or drug treatment into your bloodstream. PICC stands for "Peripherally Inserted Central Catheter".  The picture above is just like my PICC only mine comes out three inches higher on th arm.  (Did you notice a ring of ownership in the 'mine' if you did you are quite correct as I love my PICC line and am quite attached to it.  It has saved me grief beyond grief.)

I'm getting dropped to the door of Cancer Care for chemo or PICC care usually first thing in the morning.  My rides are either Nadalene, Jacquie, or Gilbert.  I walk straight to the elevator and arrive at the first floor.  Off I get and walk down a long hall to the back reception area where I am always greeted by the smiling Terry (I could tell from the start that she was a sweethearted person).  Terry gives my file to a clerk and I am brought down another long hallway where I pass three treatment rooms with beds (where I usually have my blood transfusions), there are two bathrooms in this hallway as well (we need them often because we are getting so much fluid so it is important to know where they are).  

I am now at the far end of the hospital with the clerk and she puts my file on the nurses' desk and I take a seat in a blue recliner.  When the nurse comes I am offered a pillow
and a blanket.

At this back area there are four recliners for the 'cancer putter-up with' and a chair beside each recliner for the 'cancer putter-up with's sidekick of the day.'  There is another room with four recliners on the other side of a wall, as well there are two beds with curtains that can be pulled around them.  Also, there are curtains that can be pulled around each recliner.

Unfortunately there are too many people with cancer and these chairs and beds are in constant use.  I like an early appointment so that I can get a chair in a corner by the window when I am getting chemo or my monthly treatment of Pamidronite (for my bones).  For the PICC it doesn't matter because I am in for such a short time.

Every week I get my PICC line flushed out and I get the dressing changed.  Piece of cake.  Speaking of cake, I almost forgot to mention that besides having absolutely wonderful nurses, they have a great volunteer staff as well.  We don't get offered cake but we do get offered cookies and if you are there over lunch you are given a choice of soup.  I always get either the chicken noodle or the cream of mushroom.

When I am having chemo or a blood transfusion I can be there for 3/4 of a day so I always have someone come and bring me lunch or just stay and visit for awhile.  For the blood transfusion I have had Wahid, Angelique, Nadalene, Jacquie and Shelly.  For the chemo I have had Wahid, Jacquie, Colette, Angelique, Nadalene, and Nathan all stay the day with me.

 When Wahid, Angelique and Nadalene were all at work, Nathan had Fridays off of school so he always brought me.  It was always fun with Nathan and for some reason the time would fly.  One time we brought all of our income tax stuff and I taught Nathan how to do it.  Next thing I knew while we sat there he did everybody elses too.  

Another time that sticks out in my mind was when the nurse Tammy was going to give me my first treatment of FEC (I was really afraid of this because I had heard all the horror stories, by the way, they are justified.)  Tammy was going to manually inject the E in the FEC (Fluorouracil (5FU), epirubicin and cyclophosphamide, it is a chemo cocktail with three different drugs) which is red in colour (its alias is the Red Devil) and I had told Nathan ahead of time that I was dreading it.  At that point, he pulled out a Maxim magazine and asked Tammy and I a questionnaire on what we thought men think of different subjects.  It was so interesting and Tammy and I were so into it, that before I knew it she had finished injecting the epirubicin and the 5FU.

I am thankful to all of the wonderful people that have made this horrible experience more easy to swallow.  I am sorry that my family had to go through this with me and it makes me sad for myself and for them.  I love you all.

Musings From a Wanna-Be Muse

I started journaling in 1998.  It seems funny to me to look at so many of the things that I have written, much still rings true and much is complete nonsense.

Flashbacks From the Month of February

February 10, 2004

*Nadalene and I went to a new restaurant for lunch 'Inferno Bistro'.

*I took a love survey.  I don't believe in true love at first sight (I still don't).  I think love takes time, maybe six months to a year.  I think true love (or any love for that matter) can die if it is not taken care of and appreciated.  I don't think you can have an open-sexual experience when it is true love (I still don't). I have never been cheated on.  I have never cheated.  If someone cheats I don't believe that means the person doesn't love you (I still believe this).  It is not important to me at all that the person I love share the same religion as me.  Sexual desire can fade and it can still be real love.  I would not reconnect with my first love given the chance.  I would not be unfaithful even if I knew my husband would never find out.  I believe that you can have more than one true love (I still believe this).  For me, these are elements of love: honesty, respect, listening, giving, tenderness, sex, dignity, and logic.

February 11, 2004

*I drove Angelique to work today because her garage door is broken.  I stayed at the house to make sure that no one went in their garage.

*I think I am the real thing.  I definitely have sides of me where I'm not as authentic as I need to be, but that is me too.  So, yes, I am the real thing.

*I definitely do not count on anyone to complete me. I am complete.

*My love and attention need to be a little less on the children and a little more on Wahid.  A little/lot less on housework/dinners and more on family and friends.  Maybe even read less. YIKES!

*I do not envy people who have true love.  They would have nothing I don't already have.  I do need to build on the love I have for Wahid.  I need to make the transistion from mother to wife.  Real love for me means mutual respect.  Wanting the other person to be as fulfilled as you are.

February, 2004

*A year of travel for the family.  Wahid - Trinidad, Nadalene and Charlton - Cuba, Nathan - Germany, Angelique, Nadalene, and I - Banff and Angelique and Don will be going on their honeymoon to Germany, Spain, and Portugal.  Lucky family.

*Started doing things for the wedding.  Set a love goal for me to know Wahid and for him to know me better.  I don't believe that this has happened yet for either of us. (It is starting too).

February 4, 2007

*Colette is in San Diego.  Funny how she is always on my mind.  My kids have become a lot closer to Colette this past year.  I know it is because they see how much she is there for me.  Jacquie of course is beyond the beyond.

February 5, 2007

*Angelique and I went and bought some baby things yesterday.

*Physically I am afraid to do almost anything.  Sometimes I don't want to even leave the house in case I get sick or feel faint.  I just realized that I go nowhere by myself.  Need a safety net.  

*Physically I no longer trust my body.  My body is me, it is not something I can leave at the door.  My soul of course is the real me, but while I'm on this earth I need my body to get me around.  I have taken my body for granted and have abused it.  I believe that had I taken better care of my body and not held in toxic stress I would not have cancer today (I still do).  I have cheated my family and myself.

*Financially I am afraid to spend money as I don't have any income.

February 6, 2007

*It will be one year that I was officially diagnosed with IBC.  Amazing what you can come through.  (It is funny how you almost forget those things. ALMOST!)  

*God, thankyou for this year and I hope many many more.

*Emotionally and spiritually it has been a jam-packed year.  A year of seeing what I am made of.  A year of seeing what my husband and children are made of.  

February 7, 2007

*Bummed out today as noticed six new cancer spots along my lower back.  I hope and pray that the Xeloda will work (it didn't).  

*Mickey came over yesterday and I discussed with her how I was feeling a disconnect.  She couldn't believe it.  I discussed that I felt her shutting down when I would talk about what I was going through.  She made me promise her that I would let her know immediately if I felt she was doing that (I will).  (Mickey is brilliant and I love her so much -- I love you with my heart and admire you with my mind.)

*Mom and Dad have been wonderful and have not tried to minimize my disease.  By seeing it for what it is keeps me strong because I don't have to feel that I am kept under a gag order.

*Angelique, Nadalene, and Nathan are made of the most incredible strength!!  Incredible.  Loving, caring, compassionate, wise, open, helpful, sympathetic, generous, strong.  I really would not be where I am spiritually and emotionally if it were not for them.  They are my best support group.  They reflect back to me that Wahid and I must have done lots of things right.  I love you all so much (and I still do).

Maybe a lot of this wasn't nonsense after all.

My Heaven Will Certainly Have a Library

My first love was my mother and father, my second love was my siblings (8 sisters and 4 brothers), and my third love was books or paper.  I have disappointed or been disappointed by my first two loves, but never by my third.

My Mom with her keen eye spotted my love of books at an early age.  One of my first memories involves the Sears Christmas Catalogue.  I would know of its arrival by my Mom calling me to her room where she would show me a shiny magazine, wrapped in its delivery paper or plastic. The ritual had started.

Journey back with me to a 4-year olds memory, to a simpler time and a Christmas catalogue.  I would be allowed to climb up on her bed, my Mom would plump up the pillows and put the blanket on my lap, I would get handed the magazine unopened, I was allowed to open it (this was probably the only time I was ever allowed to open anything besides my Christmas presents or a door).  My Mom would just about walk out of the room when she would suddenly turn and tell me that she forgot to give me some of her medicine (a piece of Black Magic chocolate  -- there sure was magic going on in that room at that time but it certainly wasn't black magic), she would present the box and I was allowed to pick any one I wanted. Mom would slowly shut the door and I was left to my own little heaven on a bed in a bedroom that we were never allowed in, with a chocolate in one hand and the catalogue in the other.  I think I have just described my first Crush.

I remember being 7 years old in Grade 2 and my Mom always letting me read my older brothers and sisters books.  I especially remember reading a Grade 5 English Book that had lots of stories in the one book.  Crush No. 2.

On and on and on; books and books and books.  

When I was 15 or 16 I read a series of books from a French writer that were translated into English.  These books were about a steamy, sulty, sexy, brave, intelligent, kind, adventurous woman named 'Angelique'.  I loved the character and I loved the name, not of course as much as I love my own Angelique, but you get the point.

I wish I could take credit for Nadalene's name too, but I can't.  Wahid named Nadalene after a girl he liked at grade school in Trinidad.  I absolutely love the name.  At first I kept thinking he meant Magdalene or even Natalie, but no he meant Nadalene.  I had never heard it before.  But now it is one of my favourite names.  It sounds like music to me.

I can take credit with Wahid in naming Nathan.  If we had a boy we wanted a strong name.  At the time I was reading what some people call the greatest book of all (Bible).  I remember exactly what was going on when I spotted the name.  Angelique was at school, Wahid was at work, Nadalene was home from kindergarden and was dancing around the rec room, while I was sitting in a brown checked chair watching her dance and sing, and reading the bible on the sly whenI saw the name.  I told Wahid and we both loved it.  Not of course as much as we love our own Nathan, but you get the point.  By the way, Nathan is NOT short for Nathaniel.

So as you can see two out of three of our children's names came out of books.  Crush No. 3.

I have probably over the years read thousands of books, averaging three books a week.  In many ways I have read books rather than lived an active life.  That is probably more bad than good, but it is what it is.

When I was diagnosed with cancer I stopped reading for enjoyment.  I had 'The Time Traveller's Wife' on my nightstand for over a year.  Finally read it for my bookclub.

It would seem appropriate that someone who's name came out of a 
book would buy me books to kick start my reading again.
Books that would help me live with my diagnosis.  Books that would inspire me.
Thank you Angelique.

The first book Angelique bought was 'Cancer - 50 Essential Things to Do' by Greg Anderson.  This book helped me journal out so many feelings.  It gave me so much insight and some quotes that empowered me.  Such as: "A spiritually toxic outlook after a cancer diagnosis can make a difficult situation a living hell."  "Treatment is effetive." and "Be a tough-minded realist using a just-think-positive approach to find solutions. Look for why I can do things; not why I can't."  Journalling with this book was an incredibly healing process.  I highly recommend this book to anyone dealing with cancer or trying to understand cancer.

Angelique bought me 'The Power of Now' by Eckhart Tolle.  I had first heard of this book from one of my very favourite people (Elizabeth).  This book really just confirmed how I was already living.  I would recommend this book to anyone.

Reading these last two books certainly was not Crush No. 4, however what they did for me is what I enjoy the most about reading.  They made me think.

Blood Angels

Over a 19 month period, I have had 16 blood transfusions.  Most times I will get two units of blood, but on a few occassions I have received three units.

The explanation I received as to why I need so many transfusions is because I have cancer in my bone marrow, which means I am developing only immature blood cells and so my hemoglobin is always low.  

To receive this blood I will spend between 6 to 8 hours
 in the hospital. It is long but I bring books, journals, and
 the MP3 player Angelique bought me for this purpose. 

The first historical attempt at blood transfusion was described by the 15th-century chronicler Stefano Infessura. Infessura relates that, in 1492, as Pope Innocent VIII sank into a coma, the blood of three boys was infused into the dying pontiff (through the mouth, as the concept of circulation and methods for intravenous access did not exist at that time) at the suggestion of a physician. The boys were ten years old, and had been promised a ducat each. However, not only the pope died, but so did the three children. Some authors have discredited Infessura's account, accusing him of anti-papalism.  (source -- Wikipedia)

Now back to the 21st century.  

Flashback February, 2006

When I had my first blood transfusion (see earlier blog) I was completely out of it not only because of my cancer diagnosis but also because I was very weak physically.  However, I remember feeling that a blood transfusion meant near death.  Let me explain this further.

In the late 50's and early 60's my mother gave birth to two full-term still-born babies.  Peter was the first and Pauline was the second.  I asked my Mom about this today and she believes that they both had the cord around their necks.  Poor babies, poor Mom.  My Mom almost bled to death and I still remember the term around the house was 'Mom bled white.'  

By the way, I still remember the little white coffin that Pauline was in.  We were all in church except I don't remember my Mom being there.  Maybe she was still in the hospital?? (I can't phone and ask her though because when I talked to her this
morning I mentioned that I might have more questions.  
"Not this morning I hope, because I am watching Lost.")
 My Mom kills me, she is so wicked.

Mom received blood transfusions after these births.  My Mom tells me the story of after having Peter she was sitting in her hospital bed reading a magazine and suddenly turned to look at the wall and saw a vision of the Last Supper.  Her words were "Oh shit. Christ. What the fuck, I can't die I have all these kids at home."  Mom was shaken.  Not long after Mom saw a vision of Mary standing at the foot of her bed and then knew that she would be okay.  Needless to say I come from a long line of 'Mary' lovers.

So now you see where my blood transfusion = near death comes from.  I also, for some reason had a difficult time wrapping my brain around the fact that I had to have transfusions.  I needed to get my brain wrapped around the idea that blood transfusion = life.

Nadalene once again helped me by saying "Mom, think of it this way:  Think of each drop of blood as the donor's prayers that the person receiving their blood is getting healthy."  This made me feel so much better because it made me think of my good friend Bev who I know gives blood regularly.  Her heart is pure and I know that she would donate for the very reason Nadalene stated.

Flash Forward - Present Time

For anyone who donates blood or who is thinking of donating blood please know that you are an angel to me.  You help me to be able to make it through a day.  There are many times before a blood transfusion that I am really not able to make it from the couch to the phone and if I go upstairs to the bathroom, I see my bed and flop right into it.  It is a fatique that I don't believe many people understand.

In the novel 'East of Eden' one of John Steinback's characters tells his son "You see, there's a responsibility in being a person. It's more than just taking up space where air would be."

I have never donated blood and I have too many excuses as to why not.  But the bottom line is because I know I didn't want the needle.  Now, how I wish I had.  I know better now.

Dr. Frank En Stein I Presume

No one ever told me that radiation therapy was chemotherapy's other ugly stepsister.  Maybe this is what made my experience worse for me.  I was unprepared.  I thought that it was going to be a walk in the park followed by a long afternoon nap.  

Flashback September, 2006

Am being sent to Radiation Oncologist as chemo is not working on my breast, arm, or the skin metastasis on my arm.  This means a break from chemo because you can't have both at the same time.  YAHOO.  Meet with doctor, he is great (the fact that he is very attractive doesn't hurt either).  

I am sent to get a cast made of my upper body.  The man doing it is probably my age, he wraps my upper body in saran wrap and then prepares his plaster of paris and slops it on me from my neck to my lower abdomen.  He tells me not to move or it will crack and then leaves the room for about 10 minutes.  Just about forgot to say, he also had to cover my face with saran wrap except my mouth so that plaster of paris does not go in my eyes, etc.  So far so good.  My arm of course is killing me, but I am well practiced in the art of the Stiff Upper Lip.  

He comes back in and as he is removing this huge apparatus off of me he proceeds to ask me how long I have been retired.  Retired, I am probably younger than you buddy.  Can you believe that after all I have been going through my feelings are hurt.

Come back another day to get a simulation done on how the radiation will be going on me.  I lie on the table and they do all their calculations, the doctor comes down and they agree that everything looks fine.  By the way I am wearing the cast and they have screwed me down to the table.  I have to keep my right arm up and hold onto a pole.  My arm is killing me and I start feeling sorry for myself.  

Come back again and this time I am going to start the first of twenty radiation treatments which last about 20 minutes.  Every day for 20 days I will go to Cancer Care, take an elevator downstairs, report to a desk, grab a gown, sit and wait, go into the room, drop off my gown, lie on a table, I will reach for the pole (my arm will be screaming), I will be screwed down from my neck and shoulders to my lower waist, the table will raise the technicians will do all kind of measurements, they will leave, I will be left alone and the door will seal shut (when it closes it sounds like a vacumn suction).  I will get radiated, the door will open, they will adjust and rotate me again, the door will seal shut, I will get more radiation and then they will come in and unscrew me and help me off the table and say I am free to leave.  

When I received my first treatment I should have been in there
for no longer than 1/2 hour.  I was there for almost 1 1/2 hours.  They couldn't get me screwed in properly and they had to send me back to the simulation room and they were able to get me in right away, then I get sent back to the radiation room and they are still having trouble.  I guess they are streseed because they can't get it right and one of them says to me in a very irriated voice "You have to lie still it is not going on right."  I shoot daggers out of my eyes and tell Dr. Frank En Stein's assistant Igor that I have been lying very still and that my arm is killing me.  The other room had no problem getting it on, so maybe the problem was with him, because I know that it certainly wasn't with me.  Now 'Fuck off".  

Guess what, Igor gets it on and away we go.  I lie there with my head turned again to the wall and tears just drip down.  I have never ever in my whole life felt like such a slab of meat.  I felt like I wasn't even a person.  I am glad to say that treatments after that went off without a hitch.

Thank you Dr. Frank En Stein and all the Igors that work with you.

Whatever the worse kind of burns are, I got them.  I still have one scar around my neck area.  The skin burnt off of me, and left a few gapping holes.  I bought a salve for it and boy did that help.  I had to sit around the house though with no top on.  

I mentioned to someone that I had to have no top on and they mentioned to someone that I had to have no top on and that someone said "Well, I don't want to see that."  NICE.  My stiff upper lip didn't feel quite so stiff, it even seemed
to crumble a bit.

I really love words and these below by John Dryden make me feel better when I remember
this time and remind myself that I am not just a piece of meat:

"I'm a little wounded, but I am not slain;
I will lay me down to bleed a while.  
Then I'll rise and fight again."
(John Dryden -- 1631-1700)

p.s. Jacquie thank you for all the rides and the waiting around.  You truly are an angel.

Some Fantasies Are Better Left As Fantasies

Not many people know this about me but in the past two years I have wished for someone to sneak in my room and blow my brains out.

Chemotheraphy has helped me tremendously but I am not going to pretend that it has been easy.  When I first started, it wasn't too bad, all I had was the shakes, flue like symptoms and aching bones.  

People who know me know that for me to throw-up is a traumatic event. My routine is to #1  lay around holding my stomach and moan; #2 stand by the toilet holding my stomach and moan; #3 stand by the toilet and stomp my feet while saying "God, Oh God, Oh God, Oh God." #4 is screaming for someone to bring me a pail (usually Nadalene). #5 sit on the toilet with the pail in front of me and throw-up.  While throwing up I scream for someone (Nadalene again) to bring me water, a cloth, a new pyjama and while they are at it change the throw-up pail and for Pete's sake turn down the heat.

Okay, so you can see what is coming.  I started throwing up.  I took many pills to stop throwing up, but after a while taking the pills gave me the shakes and made me want to throw up.  Isn't it funny what you can get use too.  Eventually, even though I still did my steps from #1 to #5, I got to the point where I would just come downstairs and continue carrying on a conversation, gag a bit more and continue where I left off.  

I feel that I could have been okay if all I did was throw-up.  Worse was to come, so I was not okay.

I developed by my fourth chemo what I would call chemo gut.  I would just try to sleep and wished that the medical profession could slip me into a coma for the first 3 days of my treatment.  As I had chemo every 7 days this seemed like a lot of suffering.  In the end I was sick 7 days of the 7 and it was unbearable.  But I knew I could still do it.  I had to do it.

This is when I would tell my dear friends Jill, Helen, Angie and Darlene that I wished I was dead.  They totally understood because they have cancer too.  

Every day I would dream/fantasize that a person would come when I was having my afternoon nap and blow my brains out.  I didn't want to see the person because I didn't want to be frightened, I just wanted them to come in the house, float up the stairs, and when I had my face turned to the wall pull the trigger. In this fantasy it was extremely important that they
didn't scare me.

I am writing this blog so obviously there was no person, no gun, and no shot to the head.  How happy am I now that this never happened.  I am ecstatic.  I am off of chemo for now and life is good.  I know I will be on it again some day and I know I will come out of the other side of it again.  It is not easy.  But it can and has to be done for I have a family I love and I don't want to leave them.  Choose life.
 

Chemotherapy -- A Sheep in Wolf's Clothing

Flashback February, 2006

Appointment to see my oncologist (I end up loving her by the way).  Wahid and I sitting in the office waiting, waiting, waiting for the other shoe to drop.  I do not yet know what stage of cancer I am.  She talks to us and tells us that I need to start chemotherapy immediately and that they will put a PICC line in my arm and I will have chemo once a week.

She tells me I have Stage 4 cancer  and that there is no 
Stage 5 and that this is pallative treatment,
not a cure.  Was that a shoe I just heard drop?   

But first I need to see the hematologist because my blood is out of whack and he comes down the hall to her office and then proceeds to give me a bone marrow biopsy two minutes later.  His nurse helps him, they tell me and Wahid that they got a core sample but couldn't get anymore as I had too much meat on my bones (not his words but the meaning is the same).  He tells me I have to have 2 units of blood the next day and to be back in the morning.  I pull up my pants.  

My oncologist returns and tells me what chemo I will be starting (Taxotere).  At this point Wahid looks like he has seen a ghost and I am in computer mode (a complete robot).

Next day go to St. Boniface to get blood transfusion -- nurses try 4 times in one arm 5 times in other arm and then they try twice in the feet and finally get in right foot on third try.  Now, I don't know what can be more painful than that.  Ladies, if you think childbirth was bad you are dreaming.  I am so convinced of this that before I have to do that again, I will have an affair with an elephant and give birth to a 'humaelepha'.

Unsure of timeline here.  Anyway, a few days later I go to get my PICC put in, which will help with all this needle poking.  I go to a little operating theatre (basically a closet because real room is being used) and nurse and doctor use ultrasound machine to see best vein.  The doctor is the same one that gave Angelique a kidney biopsy years previous.  I am lying on a slab of a table crying my eyes out facing the wall because the stupid bastard can't get it in.  My arm is turning black and blue.  The nurse is wonderful and she is also getting annoyed at doctor and basically says just leave it, it is not going in.  I go home and my skin develops blood pockets so it is just hanging down and Jacquie insists I put ice on it.  That helps.

Hospital wants me to come back and try again, the next week when another doctor is there and he never misses.  Fine.  Notice the chemo is being on hold, because they can't get this PICC line in.  Go get it done, I'm ready to cry again and the doctor says all done.  He had the same nurse and it was great.  I was thrilled.

**Just an aside -- the doctor who first tried to give me the PICC line was on my television set 4 months later because he was being charged in the States with child molestation.  Yes, you heard me right.  Apparently the hospital was keeping him on????  No wonder he fucked-up because he probably wasn't even thinking of his job at the time but about the charges that were against him.

Wahid and I go back to the hospital on a snowy Friday morning and we face my fear.  My sheep in wolf's clothing.  I have armed myself with many mantras:  "Do not be intimidated by medical personnel or the process."  "I am not uncontrolled panic even though I may occassionally experience panic."  "Fear is the mind-killer."  "I am free from worry.  I know peace."  And I got great strength from "The Lord is my shepherd."  Angelique told me a quote from Winston Churchill "When in hell, march straight through."  

Flash Forward - February, 2008

I have faced my fear, my sheep in wolf's clothing 33 times wihtin a two year period.  It has truly helped me live longer.  Many times when I was discouraged (which I will discuss in later blogs) or angry, I would burst out laughing because Nadalene would be yelling in the background "Save the anger for the cancer."  I don't know why but that cracked me up every time.  She is bending down beside me and cleaning up my mess and saying "Save it for the cancer."  I still find that so funny.  

I read this just before I started chemo "I saw those chemicals as a great healing agent, something coming into my body to make me well.  I welcomed my chemotherapy with open arms."  Unfortunately I don't know who to quote it from, but whoever you are thank you.

A Lump Is Not Necessary To Have Breast Cancer

I have been asking myself why I didn't insist with my doctor that I had breast cancer.  The first time I saw her for this complaint I remember my first words when she checked me were "I don't have breast cancer do I?"  hee hee, kinda, DO I?   "Oh no" she says "you don't have a lump."  Okay right, she's right, I don't have a lump.  Nor do I have a history of breast cancer or for that matter any kind of cancer in my family.  We are a family exempt of cancer.  I will definitely have a heart attack because I am built like a ball and we have a history of heart disease in our family.  

I went back and forth to this doctor as my breast got worse and worse and each time, I'm like "I don't have breast cancer do I?" and each time I got the same response.  I was sent for a mammogram and it came back with no change from the mammogram I had two years previously.  By the end of the six months (which is a death sentence in IBC) I was finally sent to a breast surgeon who confirmed that "YES, in fact I do have breast cancer."  no hee hee, no kinda, just a you DO.

I understand that my doctor had never seen IBC like this before (she did have a patient that had IBC but it presented differently than mine).  The funny thing is I still like this doctor, I know that she crucifies herself for her mistake, I know that she is a medical doctor and not a magical doctor.  I know, I know, I know.  I just can't help thinking if only she had been more informed about this or at least given me something to see if it was an infection or sent me to a breast surgeon earlier like I asked her too.

I have a huge part to play in this because after all it is MY life, not hers.  I have to be my own advocate, and for Christ's sake I was 49 years old.  I wish I was one of those people who knowing something was seriously wrong would have insisted, because I knew something was seriously wrong.   I never wanted to be the squeaky wheel, now I wish I was.  I want this to be a warning to all of you.  Trust yourself.  Know that you know what you know.

Over and over in my head I played out the myths of breast cancer.  Lump. Mother or aunt had breast cancer. Had late periods. Never had children. Never breastfed.  Mammogram was clean.  I fit in to none of those myths.  That is why today I want to give some information to other women about IBC.  Please look at the facts and more than that please have faith in yourself.

WHAT IS INFLAMMATORY BREAST CANCER:

Inflammatory breast cancer is a rare but very aggressive type of breast cancer in which the cancer cells block the lymph vessels in the skin of the breast. This type of breast cancer is called “inflammatory” because the breast often looks swollen and red, or “inflamed.” IBC accounts for 1 to 5% of all breast cancers. It tends to be diagnosed in younger women compared to non-IBC breast cancer. It occurs more frequently and at a younger age in African Americans than in Whites. Like other types of breast cancer, IBC can occur in men, but usually at an older age than in women. Some studies have shown an association between family history of breast cancer and IBC, but more studies are needed to draw firm conclusions.

Symptoms of IBC may include redness, swelling, and warmth in the breast, often without a distinct lump in the breast. The redness and warmth are caused by cancer cells blocking the lymph vessels in the skin. The skin of the breast may also appear pink, reddish purple, or bruised. The skin may also have ridges or appear pitted, like the skin of an orange (called peau d’orange), which is caused by a buildup of fluid and edema (swelling) in the breast. Other symptoms include heaviness, burning, aching, increase in breast size, tenderness, or a nipple that is inverted (facing inward). These symptoms usually develop quickly—over a period of weeks or months. Swollen lymph nodes may also be present under the arm, above the collarbone, or in both places. However, it is important to note that these symptoms may also be signs of other conditions such as infection, injury, or other types of cancer.

Diagnosis of IBC is based primarily on the results of a doctor’s clinical examination. Biopsy, mammogram, and breast ultrasound are used to confirm the diagnosis. IBC is classified as either stage IIIB or stage IV breast cancer. Stage IIIB breast cancers are locally advanced; stage IV breast cancer is cancer that has spread to other organs.  IBC tends to grow rapidly, and the physical appearance of the breast of patients with IBC is different from that of patients with other stage III breast cancers. IBC is an especially aggressive, locally advanced breast cancer.Cancer staging describes the extent or severity of an individual’s cancer.  Knowing a cancer’s stage helps the doctor develop a treatment plan and estimate prognosis (the likely outcome or course of the disease; the chance of recovery or recurrence).

Treatment consisting of chemotherapy, targeted therapy, surgery, radiation therapy, and hormonal therapy is used to treat IBC. Patients may also receive supportive care to help manage the side effects of the cancer and its treatment. Chemotherapy (anticancer drugs) is generally the first treatment for patients with IBC, and is called neoadjuvant therapy. Chemotherapy is systemic treatment, which means that it affects cells throughout the body. The purpose of chemotherapy is to control or kill cancer cells, including those that may have spread to other parts of the body.After chemotherapy, patients with IBC may undergo surgery and radiation therapy to the chest wall. Both radiation and surgery are local treatments that affect only cells in the tumor and the immediately surrounding area.

After initial systemic and local treatment, patients with IBC may receive additional systemic treatments to reduce the risk of recurrence (cancer coming back). Such treatments may include additional chemotherapy, hormonal therapy (treatment that interferes with the effects of the female hormone estrogen, which can promote the growth of breast cancer cells), targeted therapy (such as trastuzumab, also known as Herceptin®), or all three. Trastuzumab is administered to patients whose tumors overexpress the HER–2 tumor protein.  --  Posted in Inflamatory Breast Cancer.

I know that this was probably long and boring, but if only I had bored myself with it earlier.  That is the end of it though, I can't live in what ifs, or shouldas, I have to live with right now.

Ciao dear ones.  (I love the word ciao)

In The Beginning There Was No Light

That is me, right in the middle of these monsters.  I have chosen to be happy, to care, and to love.  Let me tell you what precipitated my choice.

I was diagnosed with Inflammatory Breast Cancer (IBC) in February, 2006.  HEY WHAT?  I was told that I had Stage 4 cancer and that I had the rarest form of breast cancer and that being rare didn't make it a baby, it made it a monster.  It is the most aggressive form of breast cancer.  I made a big mistake in the beginning and looked on the internet  -- please people don't torture yourself like that.  I had to remind myself that information doesn't equal knowledge and that even though there is nothing but information on the internet, it didn't mean it was knowledge.  I had to be more selective about my sources.  Bottom line though is that I have a terminal disease.

For the first two years after my diagnosis I was stuck in a whirlwind of activity that any 80 year old woman would be able to relate to.  I went to doctors, I went to group meetings (I attended many funerals), I never drove myself anywhere (A huge thank you to my sister Jacquie.), and I have had mucho mucho medicine.  I almost forgot to mention that I have a head of white hair that any elderly lady would envy and it is nicley trimmed if I do say so myself (Thank you Kirsten, my darling hairdresser).

I have grieved for the life I thought I would have and I have lived in the shadowland.  BUT NOW.  I have returned and have chosen to be happy, to care, and to love.  No one could have more reasons for these choices than I have -- well I guess that is not literally true.  I have a brilliant husband whom I respect.  I have two beautiful and amazingly supportive daughters who have become exactly what I wished for.  I have a wonderful son whose compassion and joyful spirit brings such everyday pleasure into my life, I am so proud of him.  I love you all Wahid, Angelique, Nadalene, and Nathan.  I have two son-in-laws and my son's long-time love.  They are each incredible and I have felt their warmth and caring for me over these two years.  I love you Don, Charlton, and Raquel.

I am so in love with the most special little girl you would ever want to know.  Josephine, my darling Josephine.  I like the fact that her name and the feeling I have when I see or even think of her starts with a 'J'.  Josephine and Joy.  Josephine is the best medicine I have had in the past two years.  Josephine has not taken my cancer away, but she has reminded me that  I am still alive.  Thank you Josephine.

So there you go, I am choosing to live everyday, even on the days I don't want to.

Love you all dear ones.  Renee xoxoxoxo