Ready for 3 day chemo! Retirement!

Ups and downs, highs and lows... that is what I've had, and what I have felt.

I'm still not 100% and that is frustrating.  I have days I think I could run a marathon and days that I wish to say in my pjs, and nap away the day.

My port placement was quick and to the point.  A 6:00am arrival had me home by 9:00 am, including a pit stop at McDonald's for an egg McMuffin and parfait (healing powers!)  I felt zippy and energized, then poof!  crashed like a demolition derby car.  Just another layer in the ouch!, makes me tired, wears me out, makes me hurt categories.

I've recovered from it, with just a hint of tenderness at the two incision points, and am slowly adjusting to having the large butterscotch disc under my skin.  I cover it when people hug me, as they unknowingly bump it, and am adjusting to certain required changes in things I do and how I do them.  I've bumped it fairly hard a few times, oy vey!  My children are so learning some new words! *^&(!!

CHEMO

John and I went to chemo class today.  What an educating experience.  I feel confident and comfortable with my plan and the people involved.  I'm ready.

Chemo will begin next Tuesday, April 2.  Because nothing about this has been "normal," I get to be unique once again.  My infusions will be spread across three days.  Yep.  I get chemo on Tuesday, Wednesday, AND Thursday.  Lucky me :)  My Day 1 will be 5-6 hours, days 2-3 will be 4-5.  I will receive the three day treatments every 21 days, 5-6 treatments depending on toxicity and progression.

We are fortunate that the American Cancer Society has a Hope Lodge right down the street.  It will allow me to stay, for free, while I do my treatments.  John, nor anyone else, are allowed to come into the room where patients are receiving treatments.  With that knowledge, and the fact that I'll be there for three days... well... I'm thinking I may just stay there.

Avastin has been approved, so I will be receving a cocktail of Cispatin, Topotecan, and Avastin.  The Avastin was just recently approved by the National Gynecologic Oncology Group for treatment of recurrent cervical cancer, with patients in the clinical trials having an added 30% increase in life expectancy.

The only pickle to all this?  My cocktail is a tough cookie.  They strongly recommend that I stay home for my first cycle.  Yep.  Home.  More.  While I enjoy being home to a point, I totally miss my job, my friends and my kiddoes!  Combine that with not having any more leave, and well... I'm not at a high point in my joy.
I want health, I want life, I want happiness.  If that means staying home, living frugally, any changes that need to be made, I'm in 197%.

FAMILY

My sister is doing well.  She just completed her 2nd treatment and while tired, is still her joyous, loving, amazing self.  Such a gift my sisters are.  If only I could grab their homes and pull us all a bit closer.

This past Friday was a great day of celebration.  Family and friends gathered to honor and celebrate John's 24 years of service to our great country.  He was honored during his ceremony, being recognized for all things secret squirrel like.  My emotions were bittersweet: thrilled to have him home, but saddened to see him bid adieu to all he has known and greatly loved for so long.

John's 20 year old son Adam, was able to visit / attend the retirement with us.  It has been too long since we have seen Adam, and simply, it was truly the icing on the cake/cherry on the sundae.  To say the children love him is too simple.  He is their idol, their dream, the greatest brother in the world.  While I am fairly sure his shoulders are sore, I know that he would have carried Mary Elizabeth to the moon and back.  Time flew too quickly, and the plane took him back to CT.  We are NOT going to wait too long to see him again.

Johns Aunt, sisters, and cousin were able to join as well.  Hard to believe it had been nearly 5 years since our last visit.  The kids had a ball spending time with them all.

The children had a big time playing on the Blackhawks, getting dirty :o), and being recognized for their sacrifices as well.  It is not easy being an Army kiddo, especially one in our house.  Our children are professional sayers of "hellos" and "bye byes" to their daddy.  We/ THEY look forward to occupying his days with all they encompass.

    

Thank you to each of you who have joined me in this journey of love, healing, faith, and support.  While in the midst of my moments of selfish sadness, I find comfort in your words, comments, cards, and love.  I feel the prayers, karma and support.  Sometimes I feel they are all I have to get me through a moment.  

Be blessed, be thankful, be well~

xo

Suzanne

PET, Port, Planning for Chemo, People

PET

PET scan was ALL CLEAR!  WOO HOO!!!

That means no more secrets hiding out in secret places!  Now.. to face the devil head on.

PORT

Up and at 'em in the morning for my port to be put in.  We have to be at the surgery center by 6; very thankful that my non-morning self lives less than 3 miles away.  My surgeon said the procedure takes approximately 20 minutes, so I will be home before lunch.

PLANNING

Chemotherapy plan is still in the planning.  I am NOT doing my treatments here in Hopkinsville.  After visiting  the medical oncology office here, leaving upset, scared, angry, and horrified, I took some time, some breaths, some prayer and long discussions with my little sister that was here, and my gyn. onc., Dr. Numnum, and realized the answer was right in front of me.

My treatments will be in Nashville, and I am so very much at peace with this decision.  Now, to get the ball rolling.  Dr. N is looking at protocol etc., but I should have a plan in place by the end of the week.  A drug that was just used in clinical trials in addition to what I would "normally" receive gave patients with a naughty, naughty cancer like mine, a 30% addition to their survival rates.  Avastin, in addition to the regular cocktail, is like throwing the kitchen sink at my junk.  Just need insurance approval...  I have a fair to good chance of it, as my 1st treatments, the surgery and radiation in 2012, failed.  We shall see.

PEOPLE

Telling your husband, sisters, brother, family members, and friends that you have cancer, AGAIN, stinks...

However, telling your children, seeing their faces, questions, tears, fears, and worries, is harder than anything I have ever done.  Tonight I shared my battle with the children's choir that I help with at church.  The quilting group of Hopkinsville FUMC made a quilt, and had it out, so that parishioners could say a prayer, and tie a knot for me.  Many of the children in the choir were at church and heard my name/saw the quilt and had questions.
Telling them was tough, to see their "big kid (2nd-5th) faces change/worry, was hard.  What was harder was what occurred when we got home.  At jammie time, after watching a movie, JM broke down.  My big boy, my big strong, freckly, blue-eyed baby cried, and hugged, and squeezed.  Then as quickly as it came, it moved on.  It just took Mommy's hugs, kisses, and for him to "feel" my love, and to know I was right there.

Mary Elizabeth witnessed his emotion, and while I recognized the worry across her face, she was okay.  She knew John Michael needed to hear, feel, and have Mommy.

Sigh... tough Mommy evening


My sister Michelle has come and gone.  My sister Pam surprised me with a visit too!  She and her girls rolled in Friday afternoon, just in time for fun in the sun and 75 degrees!  We had bunches of fun, and early Saturday drove to Nashville to watch Mary Elizabeth and her team cheer in the Mardi Gras competition. The  JAGS, her team, rocked it!  Adding another 1st place to their resume.  Because I still do not do well sitting / standing for a bit, we did not stay to watch the others as we normally do.  We headed back to home and were able to catch JM wrestle at his meet, winning 2/3 of his match ups.  Proud of my kiddos!

Well, chemo plan to come soon.  As always, thank you for taking a moment to check in.  This crazy roller coaster I'm on is manageable only because of a few things:  the love of my family, the love and support of my friends, and the support and love of the Big Guy making all the plans from above.

Be well, Be strong, Be bad-ass everyday :)

Xanax, Port, Chemo, Oh My!

I'm back! Whew! So, it has been nearly 2 weeks. Sorry for those creeping here daily, but I needed to go "radio-silent" as I say to my sisters...

Speaking of my rock-star, cougars and against cancer ass-kicking sisters, and Grammy too!:

Many have asked about my sister, Pam, who is also fighting her own battle with cancer. She as recovered from surgery fabulously, and began chemo last week. She is back to work as of yesterday and fighting like a girl! I'm still going to buy a lottery ticket and win, so she can quit all that lawyering business and come here!

Michelle is currently here! with two of her three. Mr. 17 months and Miss 3 year old, have kept me full of smiles and giggles so far this morning. Big sister wanted to stay NC so as to not miss school, PLUS have 4 nights of sleep overs with friends, woo-hoo! She has brought health, hope and healing with her <3

Grammy is hanging in there. Busy as ever with tax season, and day by day coping with all that late has put on the plates of her children. Big Daddy is taking care of her, but some hurts the heart cannot heal. I miss her daily and wish she was here to pet my hand.

I've been busy, busy, busy and John has been right at my side! Helping me, being both Mommy AND Daddy, and prepping for RETIREMENT!

Yep, next Friday, March 22! We are also having dinner catered here by Rutland's Catering!

Kiddoes! 

Our children do know. What do they know? Well, with the ages of 9 and 6, their questions and levels of understanding vary. 

They DO know Mommy is sick with cancer.
They DO know the sick is where my baby parts used to be.
They DO know I am going to take special medicines.
They DO know I may get a new hairstyle.
They DO ask questions almost daily. Yes, death has been questioned. 

It is okay to talk to children about cancer, and if your child knows mine, I ask that you please do. I'm not secretive, nor should you be. I'm more than happy to answer any questions that your child, or you may have.  

Here is my latest update...

Met with Dr. Numnum, my gynecological. oncologist in Nashville last week. Talked chemo mixes, my recovery, my outlook, etc.

What I know:
95% of people that had what I had last year would still be cancer free, I'm in the 5% (stupid percentages)
My cancer is nasty, highly aggressive
This is not going to be an easy fight

I'm going to stop there....

Fast forward to today,

John and I met with the local medical oncologist (chemo Dr.) and staff yesterday.. I was made to feel completely like a number, and by no means a name by the entire staff, except for the Dr., but had some initial concerns there too. I left in tears, my heart was racing, I felt defeated, when I had not even been given the opportunity to run the race.

I am who I am, and with that said, I called my radiation oncologist's nurse and was able to go to the other half of the office and meet with my radiation oncologist, Dr. Murray, who treated me last year, and shared ALL of my concerns from that day. He did reiterate what Dr. Numnum, had told me, that I can have my chemo anywhere, but I need to be comfortable where I do it, and with who. How is it possible that one half of an office can make you feel as if you are in an Aveda spa with a Buddhist temple like atmosphere, and the other side part third world?

With that said, I am considering doing my chemo in Nashville. I know the drive may be a pickle, but if you could seen me yesterday, well... you'd probably offer to drive me. John felt many of the same things as I did. I think we have been spoiled throughout this 13 month journey with Dr. Numnum, Dr. Murray, and even my regular OB-GYN, Dr. Gapp.

My oncologist in Nashville is just back from a national conference, where he presented and learned. His nurse called and said that he is excited to share some things with me, so we will talk tonight.

So..... here I am! 

PET scan is this Thursday

Chemo port being put in next Tuesday

Chemo tentatively scheduled to being the 25th of this month

Still not up to full speed, but getting there. Many days I feel like the fileted fish that I became during surgery, but my energy and ability to be up and about is increasing daily. Completely off pain meds, but am embracing Xanax for nerves/anxiety that has kicked in with all this.

I am so very thankful, WE are so very thankful, for all who are "with us" as we embrace and face this battle head-on. Am I scared? YES! Terrified even. Will you see it? Nope, but that is my choice. If you ask me how I am, you will probably receive a "great!" in reply, don't question it, just run with it....

I truly can feel the prayers, kind thoughts, and well-wishes, truly. The meals and cards, and my friend Sue's buckets-o-fun, have brought me more joy and strength, when I thought I had run out. I'm getting to see my dear friend Mary Anne bunches, as she drops items off, and am trying to see to joy in all things. I am a person of strong Faith, but I do question. I believe we can all attest to times of questioning our own faith. I do, however, remain faithful, humbled by God's glory each day.

Be well and big hugs,

Suzanne