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Mikki630's Breast Cancer Chronicle
My Journal
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Part of my journey through treatment & other stuff...

Preface:

I wanted to give you a little history of events leading up to the creation of my journal.  While this is a website focused on breast cancer, it is impossible to separate my journal entries dealing with my cancer and dealing with the loss of my beloved mother. You see, I was diagnosed with breast cancer just 20 days after my mom's swift death.

 

My mom was diagnosed with a rare leukemia (acute promyelocytic leukemia, also known as APL or M3) just 5 days before her death.  Many of the journal entries address the profound grief I felt upon her diagnosis, death and the aftermath. In many of them, I'm talking to her. Some of the writings mix my cancer experience and my mom's passing.

 

Some of the names you will encounter are: Pic (my hubby), Lauren (9 yo daughter), Aaron (3   yo son), Betty (Pic's mom; my mom's best friend for 40 years), and Gordon (my older brother).

 

This was extremely cathartic for me.  I had all of these thoughts running through my mind & was finally able to begin putting them to paper about 2 months after it all started. Guaranteed, you will weep, smile and find hope and peace here. I hope that you find what you're looking for.

 

Postscript 2002: I have decided that, although I published most of my journal online in the past, I wanted to focus on the few breast cancer entries and the entries that I knew would make you smile.

 

I have color-coded the entries: pink=dealing with cancer and blue=heartwarming entries

 

 

 

The Birthday Card

  

My 37th birthday was on June 30th, 1997.  On July 1st, two days before my first surgery, I was sorting through some papers at my parents' house.  I had been there about 2 hours or so, paying bills and organizing Dad's personal affairs.  Dad and I were in the dining room.

 

All of a sudden I heard a faint high-pitched sound.  I initially thought it was the ice cream man's truck in the distance, but it never got louder.  Then it hit me.  I was hearing one of those musical cards playing "Happy Birthday!"  Dad couldn't hear its high pitch, but I became a woman with a mission.

 

I tore that room apart, looking through every drawer.  It became louder when I approached a box into which Dad had emptied a drawer.  I began digging and the song got louder.  Just as I found it, it became silent.

 

There it was, a birthday card mom must have bought for someone some time ago.  It was closed and in its cellophane wrapper, just as it had come from the store.  Now, everyone knows that these cards only work when they are open. 

 

I was so thrilled when I saw itI got the biggest smile on my face!  I said, "I can't believe itshe just said 'Happy Birthday' to me!"  Dad didn't comprehend what I'd said.  I looked up toward Heaven and said, "Thanks, Mom."

 

There was no logical explanation for this to have occurred.  I had been sitting near that box for 2 hours before it suddenly began to play.  When I opened the card, I couldn't get it to play again.

 

I believe that my mother's love and intense feelings about my grief over losing her gave her the fleeting ability to show me tangibly that she is indeed hovering over me.  She truly has her wings!

 

 

 

 

My Family

 

 I feel confident about my cancer battle, although I still can't help looking at the 3 people left in this world, whom I love with all my heart, wondering what they would do if I died.

 

My beloved Picolo, my soulmate, my rock.  What a kind, gentle man.  My sweet, beloved Lauren, my little lady with a big heart, my intellectual one.  My precious "Menja" Aaron, my sparkling little boy with that mischievous twinkle.

 

I try to stay strong and upbeats, to keep life as stable as it can be at a time like this.  It's not always easy.  I snap, I yell, perhaps more than usual, or maybe not.  But I'm realizing that I don't want my daughter to remember me as a yeller, or my son to remember only Mom's angry "spanky hand." 

 

I'm more in tune with everyone's emotions, and their right to feel (and deal with) my cancer in their own ways.  Picolo either withdraws or lashes out.  Punishments don't always fit the crimes.  Lauren clings, wanting to be near me.  Aaron whines and throws tantrums more often.  All want more of me, on their own levels.  I need to be near them and to feel their love, yet I need to withdraw too.

 

I'm so lucky that my cancer was found early.  Sparing my breasts was never an issue.  God sparing my life was and is.  I need to be with my soulmate, to watch over and guide our little lady and our spirited "Menja" boy into adulthood.  If I can't see my grandchildren, please let me have enough time with my family in our cocoon.   I want to watch my children grow up with my wonderful man at my side.

 

I'm really trying hard to heal my surgical wounds.  High protein diet, vitamins A, C and E and antioxidants in massive quantities, all with my surgeon's approval.

 

I need to fight for them.

 

I need to fight for ME.

 

I don't want to die.

 

 

 

Anxiously Awaiting Chemo

 

There have been many more highs than lows since my diagnosis.  I've felt a calm, reassuring feeling that everything was removed during surgery.  Chemo is only to get rid of any "what ifs."

 

I was to receive my first chemo on August 14th, 1997 but was rejected.  I wept in Pic's arms.  Apparently, my incisions hadn't healed enough.  As a matter of fact, under each armpit was a hole that you could stick a pencil into at least ".

 

My oncologist empathized with me about being all psyched up and ready, but we both knew the answer was "not today."  The oncology fellow felt it necessary to inject realism.  As if I needed any more realism after having already had 2 major surgeries!  In her broken English she said, "You not heal propalee.  Chemo kill bad cells and good cells.  If you not healed, you could get infection and you could die."

 

I was pissed because I wasn't going to press the issue with the oncologist.  I knew why I couldn't have the chemo.  She certainly didn't need to say this with my loving, but scared-shitless husband in the room.

 

I'm afraid of chemo, and I admit it.  It works much like a forest fire in that it destroys nearly everything in its path.  All you can do is pray and work toward making your body as strong as possible beforehand in hopes that your good cells will replenish.

 

Since that day, I've seen my surgeon weekly.  My basic problem is "slow wound healing."  Now, anyone who knows me, knows that when I'm ready for a fight, a challenge, whateverI WANT IT NOW!!

 

Here's where Mom's calming influence helps.  I now look at it this way:  I'll expect to not have chemo on my assigned days.  That way, if it actually happens I'll be pleasantly surprised.  Works for me!

 

 

 

 

The Goodbye Balloons

 

 

Funerals are a strange thing for little kids. God knows they're tough enough on adults!  We were trying to find a way to bring some closure for Lauren and Aaron.  Aaron had a hard time with "How long does Oma have to stay in that box?"  Lauren just missed you like crazy--all the things you had done together that wouldn't ever happen again.

 

Pic and I took them to the balloon store after your funeral.  We let them each choose a helium balloon: Lauren chose a pearlized mint, Aaron chose pink.  We took them home and they each had a message written on their balloons:  "To Oma from Lauren," and "To Oma from Aaron."

 

We'd gotten home pretty late--the sun was almost set.  The 4 of us went out to our driveway.  At the count of 3 they simultaneously released their balloons.  It was so moving!  The balloons stayed together, dancing from side to side directly into the setting sun.  They stayed together until we couldn't see them anymore.  Lauren was sure she'd seen an arm reach out to get them!  They jumped up and down yelling, "Bye, Oma!"  It was so uplifting for all of us.

 

I was misty eyed.

 

 

The Angel Pin

 

 

After your diagnosis, I was frantically trying to find an angel pin with my birthstone (June) for you to wear while you were in the hospital.  I was so disappointed that there were none to be had.

 

And then you were gone.

 

When I found out I had cancer, I knew already that you were my Angel.  I mean, what could be more powerfully healing than a mother's undying love for her child?  I didn't feel alone.

 

Getting ready for chemotherapy, I knew I wanted a piece of you with me.  I began wearing your diamond anniversary band (the others were too small).  It was the last ring you'd worn.  I also felt a pressing need to find an angel pin with your birthstone (March) to wear to chemo.  Ironically, all I could find were June birthstones.

 

Then it hit me.

 

You died on June 3rd--that's when you became my angel.  I bought the June pin.  I feel your presence when I wear it.  I rub your ring for comfort.

 

And I allow myself to cry.

 

Please help me to be strong for my family.  Please guide my doctors as they perform their tasks.  And please intervene in your angelic way to make me the best possible person I can be.

 

 

 

Please keep in mind that chemo is a very individual experience and that my experience was over 6 years ago--things have changed in that time!!  There are many different chemo regimens as well as many new anti-nausea meds that can be prescribed.  Just because I didn;t have the best time, doesn't mean YOU won't!

 

 

Chemo-Session I

 

I had my first of 4 chemo sessions on 9/11/1997 (uh-oh, 9-1-1).  I was really excited to begin this fight, as I've waited sooooooo long in the wings plagued by "slow wound healing."  I slept well the night before, had my tote bag all packed--journal, St. Peregrine's medal, animal cookies, crackers and a book. Thought I was all prepared. HA!

 

Things went well at the hospital.  I received my oral pre-meds and then the chemo.  The Adriamycin 128mg (looked like red Kool-aid) was infused by IV push over 15 minutes.  The Cytoxan 1280mg was infused slowly and then speeded up, at which point my nose was burning and I developed a sinus-type headache (cheeks, forehead, behind the eyes headache).  They slowed it down and all was well.

 

I felt OK leaving the infusion center with my little prescriptions in hand and firm instructions to drink 8 oz of water every hour for the next 12 hours, and to pee at least every 2 hours, lest the Cytoxan give me hemorrhagic cystitis.  God knows, my urine was going to be reddish pink-orange for the next 1-3 days from the Adriamycin!

 

I noticed a gradual change during the ride homesomething different.  My thighs felt weird.  I wasn't nauseated but wasn't quite right either. 

 

I needed to take the anti-nausea meds with food and thought chicken-flavored ramen noodles would be gentle enough and would help me fulfill part of the fluid requirement. Big mistake.  Within an hour of eating, oooh boy!  I realized they'd not given me enough pre-med anti-emetics.  Oh sh*t, I was in for a treat. 

 

All of my prescriptions contained 4 to 8 pills, to be taken 12 hours apart.  What are the docs so afraid of?  That this stuff is so good that they'll addict me to something over 4 days???  I thought that the doctors would recognize the importance of consulting the hospital pharmacist for proper dosing--"pharmacokinetics," it's called ('far-muh-ko-kin-NET-iks).   The fact is, you CAN'T dose a 200 pound person the same as a 120 pound person!!!  Generic dosing STINKS.  They'll hear from ME next time.

 

In addition to having such a regimented drink & pee schedule, everytime my stomach became full (usually every 3 hours), I'd throw up.  It's as if the fluids couldn't exit my stomach other than upward!  Twas gonna be a long night

 

Day 1 was the worstflu-like symptoms, aches, pallor, chills, nausea and vomiting.

Day 2 was bettermostly slight nausea.  I ate 2 pudding cups, cup of orange sherbet & drank gingerale.  No appetite. Exhausted.

Day 3 better stillstill no appetite to speak of. I made weak tea, and tried (but failed) to eat Cream of Wheat.  I settled on 2 pieces of toastwent OK.  The rest of the day, 2 pudding cups, gingerale, tea and finally a sparse egg salad sandwich!  So far, so good.  Basically compared to day 1, I'm doing GREAT!  Just hanging out trying to relax.

 

 

This my personal experience in 1997---yours may vary significantly!  There are so many different anti-nausea medications that can be prescribed now. Just because I didn't have the best time with it doesn't mean YOU won't!

 

Chemo Session II

 

My bloodwork the week before this session really took a beating.  I was hoping it had sufficiently rebounded so that I could receive this magic Napalm.  Since I'd had such difficulty with nausea and vomiting the first time around, some slight changes were made.  I received 2 of the 3 pre-meds by IV. I also received extra meds to take home.

 

The session itself was pretty benign. Because of some side effects, they had to run the Cytoxan very slowly. It felt like I was there for hours (I WAS).

 

Prior to the infusion, the doctor reviewed my labs and examined me.  Although my liver function tests were normal, my cholesterol had jumped 60 points in 1 week and my liver felt enlarged to the doctor.  Basically nothing to worry about but they'll closely watch my liver enzymes next time.

 

I didn't experience the vomiting this time but I did manage to have a consistent level of mild nausea.  I was still able to eat but felt as if all food just sat in my stomach for the longest time.  I was also horribly constipated from the chemo for about 5 days and then had the runs for 2 days after that.  Basically, I didn't feel totally human again for 7 days after the session.

 

I also didn't tolerated the meds wellI think it was the steroids.  Something was making me WIREDI kept hearing the chimes on our grandfather clock all night long. I wasn't able to fall asleep until 5AM or so.  This went on for 4 days.  I was completely exhausted yet unable to sleep.  I was irritable and on the verge of tears.

 

My energy level was determined, literally, minute by minute.  I would make plans to do something, yet within minutes I couldn't carry them out.  This was really tough on the family this time.  At least when I'd vomit, they could SEE that I was sick.  This time, I was merely another couch potato and without any other visual clues, it was hard for them to realize that I'd been through the wringer.

 

Just prior to this session, while my white count (WBC) was in the toilet,  poor Lauren had bronchitis and a 104 F temp.  She really needed to snuggle with her mommy but I was forced to keep her at arms length and then wear a mask.  God how I hated that!  She had a hard time believing that I could become severely ill if she infected me.   After all, she's my baby who needed her mommy and resented that I couldn't carry out business as usual.

 

I'll be glad when all this is over.  Two down, 2 to go. Keep me healthy and on schedule!

 

 

I must say that I truly felt this way after I was diagnosed.  I must also truly say that, 3+ years out, I no longer felt this way.  Cancer does NOT overshadow my life.  I don't think about it everyday.  Sure, these feelings still creep in once in awhile (and most likely will for the rest of my life). The difference in then and now is that it no longer overwhelms my everyday life!  There IS hope!!

 

 

The Spectre

 

If there's a true downside of living with cancer, I'd have to say that it's the spectre that will always hover over our lives--the overwhelming unknown entity known as "recurrence." 

 

Is the cancer truly gone? Or is it lurking, yet undiscovered, in some out-of-the-way place in my body? 

 

Will I live a long full life?  Or a not-so-long full life?

 

Will I be allowed the opportunity to raise my children to adulthood?

 

Will I become a doting grandmother?

 

Will I be a long-term partner for my beloved husband?

 

As positive and upbeat an outlook as I have, all these questions remain locked away in some dark dusty corner of my brain.  Every once in awhile, they leak out.

 

I believe everything in life is pre-determined. Perhaps it's best that we don't know everything.  But it truly can be Hell not knowing what my future will hold.

 

So I guess, for NOW, I'll hold onto life as I know it with a vengeance!

 

 

 

1997, Michele L. McLachlan. All rights reserved.  May be reprinted solely for private, noncommercial use. Full credit must be given to author when distributing this material