Meeting with Fleener--Cancelled Herceptin & Perjeta #19

There has been lots of this over the last few days.  I feel so broken and sad.  There is guilt of knowing that God is a God of miracles and yet not being able to just trust completely that all will be well.  I feel trapped between the science and the MRI images--so many tumors!--and the blind faith that there is still hope.  Right now I feel hopeless.  I'm angry.  I feel like I've let down so many people, that I'm leaving my children and spouse much too soon.  How could I bring these boys to this world and then just go, especially when there is so much still do to?  I feel like they won't remember me, and I've tried so hard to be so much for them--making traditions, being a nurturer, teaching them discipline, and so many other things, yet they are still SO young!  How will any of it stick?  I know I can still fight and that I am strong, but I am starting to get tired.  My head hurts so much, and I've noticed that it's gotten harder to move and stand in just the last few days.  I'm scared to lose who I am.  

I am also so touched and overwhelmed at the love and outpouring of kindness and prayers for our family.   It is incredible to see the far-reaching effects of connections made through our many travels and associations over the years.  I have loved seeing that web of love through such a rocky and dark time.



























On Tuesday, I went to my regularly scheduled appointment with Dr. Fleener.  Stephen surprised me by getting off early and meeting me there!  The nurses, office managers, financial ladies, and more came up to hug me and give me some comfort---news travels fast.
There really was no silver lining to the reports today.  The hard part about me is that my body was reacting so well to Herceptin and Perjeta and there were no other symptoms until the past week.  The PET scan scans from the bottom of the ears to the knees, looking for high glucose areas.  It's not the best on the brain because the brain has such high activity all the time.
Dr. Fleener still thinks I have on the longer end of things.  She has high hopes that my cancer reacted so well to radiation before.  "It just melted away the last time."  She hopes that it will work that well again, which will give me a longer end of that spectrum of time.  Those averages include people who are in their 70s, coming in in wheelchairs, not healthy at all.

I have a little on that.

She did give me the news that I could skip treatment today, especially since I've never missed one.

I took that as a sign, especially since Stephen was off.  We skipped out and went to a movie.

It was a perfect idea.

Goble

Stephen was able to get off work early and meet me at Dr. Goble's office, which was a nice comfort. I was so glad to have company and to not be alone.

I filled out a bit of paperwork, but not much, as I am already an established patient.

I was called back and did the typical stats--weight/BP etc.  All that was fine.

I was asked about pain and other symptoms--how's my breathing, stuff like that.

We then moved into the exam room and waited for the doctor.  He walked in with a med student, and we said it was fine that he sit in.

Dr. Goble did an exam and questioning.  He kept asking about my breathing.  He checked my reflexes, my vision, (wanted me to remind him about my eye injury), and checked my strength in pushing against his pressure with arms and legs.  All that seemed fine.

Then explained that my MRI results showed tumors....the first I'd heard that word, and that's when it hit me...how real and scary this was.  He asked if we wanted to see the MRI, and Stephen piped up, "YES!"

As Dr. Goble was pulling up the files on his computer, he explained that the MRI basically cuts my skull into a "loaf of bread," in all directions, so they can scan through each "slice" and see what's going on.

When the images on the screen came up, and Dr. Goble began scrolling through the "slices," that's when I knew it was bad.  Stephen said something like, "MAN!" and just started crying.  The tears were rolling down his cheeks, and I knew that MRI was not good.  It looked like every slice of my brain loaf had multiple moldy spots...on both sides, and all over.

Dr. Goble was showing how neurosurgery wasn't really an option, as there were too many tumors for surgery to help.  We could do radiation and hopefully alleviate some of my symptoms and give me some relief from the headaches and nausea.

Stephen asked how much time I had, and Dr. Goble explained that it was hard to tell at this point because they don't know how I'll respond to radiation, but just from the scans, it would be 6 months to a year.

There's no real hope of a cure....it's just how much time am I going to get.

It's not supposed to be this way!

As Dr. Goble went back with his student in the hall to collect some paperwork, Stephen overheard him tell the student that I have a very aggressive type of cancer.

He came back and explained that I would do full brain radiation for 10 sessions, basically 10 days in a row.  Then, they would wait about 6 weeks to let everything process and scan me again.  At that point, they'd be able to see if and how well the radiation worked, which would give them a better clue of how to proceed.

The radiation shouldn't have too many damaging effects on my abilities.  I will probably just be fatigued.  The biggest thing is that I will lose my hair, and this time it probably won't grow back, as it will be fried off.

They will only be radiating my brain, so I won't have problems with my esophagus or other body parts.  I also shouldn't have any memory loss or other lessening of brain function, and to help with that, they are starting me on a drug used for dementia patients.  It will just give my brain extra protection.  I start off on a very low dose and work up to the highest.  They will keep me on the steroids, but will eventually start tapering those down to a place where I will still be comfortable, but not so reliant on them.  At the same time, the radiation should help with my symptoms, so that should even out.

We asked how this got so bad so fast.  He said that it's a great question.  A PET scan only shows from the bottom of the ears to the knees.  Its job is to scan for high glucose activated cells, which are most likely areas of cancer, which is a main reason why I do a sugar/carb fast for 24 hours prior to the test. The brain has a high level of activity all the time, so a PET scan doesn't differentiate between cancer and normal brain activity.  In theory, my body was doing so well in remission with the herceptin and perjeta, and I wasn't having any symptoms, so there was no reason to seek further studies.

Until this week when these symptoms came up, at least.

He didn't think this was here 6 months ago, maybe not even 4 months ago.  It's so aggressive, it just came up so quickly, and it finally just started putting so much pressure on my brain and affecting my 4th ventricle, which is what was causing the symptoms.

I could stay that day and get fitted for the radiation mask, which I chose to do.

I went back into another room and had to remove all metal.  I laid back on a table and had this wet, hot mold placed over my face.  It was hard to breath through and the tears made it hard to endure, as well.  We had to let it dry up and fit to my face.  Then, I was scanned in order to mark up the mask for the proper placement for radiation.  Before too long, she pulled that thing off my face and I was able to leave.

Then, it was time to go home and tell the boys.

That was NOT fun at all.

Kyle was quiet.

Ryan said, "I don't want Mom to die.  She's not supposed to die when I'm a kid.  She's not supposed to die until I'm an adult and have my own kids.  I don't want that to happen."

Evan was kind of clueless.  He just kept saying, "Don't cry.  Don't cry.  If you don't cry, it's all better."

I am so sad that they are all so young and it feels as if they won't remember me.  I've tried so hard to be a great mom, but those early years are so important, but fading in the memory as time goes on.

Kyle had soccer practice.  I took a bath.  I laid in bed an fell asleep.  It was a long, hard day.

More Fluids and MRI

The week of the PET scan didn't get any better.  I kept having headaches and only felt well when lying down.  I threw up in the car rider line at school and had to sit in the school's nurse's office until I regained color and felt better.  (A lovely 4th grade teacher took Evan to her class, so he was entertained!)

By Friday, things were not getting better, so I decided to drive down to Dr. Fleener's office and report to the nurses in order to get more fluids and talk about my symptoms before it got so bad over the weekend that I ended up in the ER.
After talking with Dr. Fleener, it was decided that I'd get fluids and having an MRI that day.  I wasn't sure that was going to work, as Evan has a short day at preschool on Fridays, but there the nurses insisted that an MRI was happening that day.

I sat in the chair, crying and tired.  Not sure what was wrong with me....just so tired.

My in-laws were able to pick up Evan and hang out with him for a few hours until the older boys got home from school.
I got some fluids, and the nurses used the right needle for my port that could also be used for the MRI contrast, so I didn't have to get another IV.  (LOVE THEM!)
I headed down to the imaging center and waited to be called back.
At first, the tech wasn't sure she could use the needle through my port.  I insisted she could and that I did NOT want an IV.  Thankfully, she checked with the senior tech, who was happy to report that my port could be used---they just needed to pull out a bit more blood before collecting the real sample AND they had to go over to the ER to get Heparin to keep it from clotting up.  (I'd probably get an ER charge for that....thanks.)
The MRI was fine and had no problems until they informed me that they could no remove that needle from my port, as they aren't trained for that.  And, Dr. Fleener's office was closed, so I couldn't go back there.  I immediately thought of texting Stephen to see if I could just come up to the OR and have some nurse remove it at his hospital.  He said, "sure."
I hadn't eaten any lunch, and it was 2:15 at this point.
As I was waiting in the drive-thru lane, Dr. Fleener called.  Like, 15 minutes after I got out of the imaging center.  It couldn't be good.
She explained that the radiologist just called to tell her of the report of my MRI, and it wasn't good.  There were several spots in my brain that looked abnormal, most likely cancer.
"Lovely," I responded.
"I used a much worse word when I heard the news, so you're better than I am!" she explained.

She set me up for an appointment with Dr. Goble, the radiation oncologist I worked with before.
She also sent in a steroid for me to take to hopefully help with the headaches and pressure.

I looked at the time, and realized that I wouldn't make it in time to get my older boys from school, so I called my friend to see if she could walk with them and explained why.  It wasn't easy saying it out loud.

At this point, I texted Stephen back about taking the needle out, and asked if he could do it because I needed to talk to him.

Right after that, our bishop texted me saying that he'd been thinking about us all week and did I have any news (good or bad) from the tests.

I responded that I'd just gotten off the phone with my doctor 13 minutes ago and that there is cancer in my brain.

He apologized for texting so soon after hearing bad news, but the first thought that came to my mind was a testimony of the mantle of bishop that he has, especially after just being called to be a brand new bishop.  He was sensitive to some of my most personal needs and followed that prompting to reach out.  Since I hadn't even told Stephen or family yet, I figured I needed to take care of that first.

I called my mom on the way to Stephen's hospital, but got voicemail.

Stephen met me at the door and I told him immediately.

"Great," he said.  "Like we don't have anything else to worry about, we'll just keep fighting this."

He pulled the needle out and had to get back to work.

Then came the hard part of telling people and crying and not being able to tell people because I was crying.

I had to pick up my meds, but just wanted to go home and not have to think about it.

It was a hard night, but at that point I had some hope that maybe we caught this early and there would be a treatment that could beat it back.

I'd find out more on Monday, and Dr. Fleener was on call all weekend if I needed her.

She did say that she could admit me to the hospital if I felt that this was that much of an emergency, but I felt it was fine to wait until Monday.

It was a long Saturday and Sunday, but there were lots and lots of prayers sent up on our behalf, our entire church family participating in a special fast for us, as well as wearing pink in support.

PET Scan

PET Scan time is not my favorite time.

The stress and anxiety of the unknowns and the dark cloud of questioning when cancer is going to return is hard enough; add on the unpleasantness of fasting for at least 6 hours prior to the study, plus 24 hours of a water/lean protein/green veggie diet?  Well, like I said....not my favorite.  

A massive headache from last night into the morning made it difficult to get out of bed.  Once I finally did, I walked into the kitchen to get breakfast for the boys and became instantly nauseous.  Running to the sink, I dry heaved, but nothing came out.....until I left to help the boys again....and threw up on the floor.  Again, nothing really came out....just bile.  And, I couldn't eat or drink anything to get that taste out of my mouth.  

Then came the fun part: dealing with insurance.  Thankfully, the wonderful ladies at Dr. Fleener's office are AMAZING and helped convince the hospital people to not collect the full deductible from me, but to wait until their claim went through.  

My wonderful oncology nurses happily accessed my port, so I didn't need an IV.  They could tell I wasn't my *normal* self, so asked me to come back after the scan to get some fluids and possibly nausea meds.  

It was then time to get my wonderful injection of radioactive isotopes and wait for that junk to get through my body.  The scan is the easy part: just lie still with my arms over my head and practically sleep for an hour.  

I'm glad for the love and care from the nurses who insisted in getting me fluids and crackers and juice to help get me back to myself again.  

Now, home to rest and get rid of this massive headache and back to waiting and hoping for good results!!!

H&P #18

I finally took the boys to go see Disney's new movie, Moana.

I LOVED IT!!!  I thought it was a beautiful story, with beautiful imagery, and it made me want to take another trip to some islands.  I enjoyed so much of Moana's story--she was chosen for great things, she was conflicted about how and where she should lead her people, her courage/determination/spunk, her desire to make the world a better place.

**spoilers ahead!**

My favorite side story of the movie was the amazing theme of love within a family.  It's not often that Disney gives us a story of a full family unit, as princesses often lose parents, grow up not knowing parents, have only one parent, etc.  Moana shows the love of father, mother, daughter, and grandmother, which all play a great role in her story.  In the great circle of life, as Moana grows, we see Gramma Tala aging, as well.  It is when Gramma becomes ill and close to death that Moana gains the strength she needs to leave and fulfill her life's mission.

This scene struck a chord with me, especially Gramma Tala's dying words to Moana.

After Gramma's encouragement and plea for Moana to go, leave, become who she was always meant to be by doing what she as always meant to do, Moana responds, tearfully, "I can't leave you!"

Gramma Tala's answer was so powerful to me: 
"There is no where you could go that I won?t be with you."

I know the tears which came next were not for Gramma's death or Moana's courage to try, but in relation to my own life.  Unfortunately, I have had to come face to face with the very real possibility that I will die long before I want and much sooner than I could have imagined.  At that moment in the movie, I pictured myself----MANY YEARS down the road---giving my last words of counsel and encouragement to my own children.  And, what better answer when they cry that me leaving is too soon and they don't want to or can't go on without me than to copy Gramma Tala:  My son, "There is no where you could go that I won't be with you."  For, I strongly believe that my calling of mother will not end with my last breath in this life.  I, too, will be with them on their journeys, giving them comfort, protection, encouragement, and love.

For, really, isn't this something each of us has already been promised before when we fear the hard journeys of life?

Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest.
                                                        (Joshua 1:9)

As we embark on the difficult, sometimes dangerous, paths to fulfill our destinies, and become the people we were always meant to be, may we always remember that the Lord has gone before us, so that He can be with us where ever we may go.  There is, truly, no where we could go that He will not be with us.  Knowing that is the best reason to follow him, by being strong and of good courage, not afraid or dismayed in the challenges we face in doing what must be done, no matter the hardships.

The hardest part in all of my cancer journey has been facing the possibility of leaving my family far too soon from mortality.  Even this should not be a fear, if I believe that God will get me (and them) through it  because He is with me (and them).  And, because He does this for me, I take great comfort in being able to pass that comfort onto my children.

That helps me "be not afraid."

H&P #17 + appt. with Fleener

Seventeen.  

Seventeen treatments in 2016 + more in 2017.  That's almost perfect for a treatment once every three weeks.  

Today I met with Dr. Fleener.  She asked how things are going.  The phrase "praise Jesus" was offered more than once in response to my answers, that things are going well, mostly status quo.  No diarrhea, no extreme exhaustion, nothing out of the ordinary to report.  

"How's the rash?" she asked.  

"It's gone," I answered.

"Gone?"  

"Yes! Do you want to see?"

"Wow.  All I can see are the scars marking where the rash once was.  Praise Jesus!  Have you been putting cream on it?"

"NO. The only thing I've done differently is take vitamins for skin, hair, and nails, and my skin cleared up."

"Those do have Vitamin E.  As long as it keeps working, I say just keep taking it!  You are my poster-child patient!  I tell people I have a patient who's been on this Herceptin/Perjeta regimen for awhile, and she just keeps going along, doing well.  I'm going to write a book about you someday!!"

I won't come back until January 17th and will make an appointment for my ECHO and PET then, hopefully having met my deductible by then and worked out payments by then.  

The 17th.  of 2017. 

That number keeps jumping out at me.  I usually love celebrating the new year, thinking on the past year's goals and making resolutions for the year ahead.  This year, cancer is making that difficult.

Although 2016 has not been the best year in social events and new stories, it's been a good year for our family.  I've been in remission for the entire year!  We've traveled more and further than perhaps any other year.  My first book was published.  Stephen is the healthiest he's been in a decade.  We've had much joy and happiness.  And, cancer was hardly a blip on the screen.  

But, we're coming up on 2017, another odd-numbered year.  

Perhaps it's a superstitious thing, but the odd years haven't had the best record when it comes to cancer:

2013--1st diagnosis + treatments, surgeries

2014--beat cancer

2015--2nd diagnosis + treatments

2016--in remission

2017--?

As scared as I might be of cancer's return, especially in the next odd-numbered year, all that comes back to mind is:

FEAR NOT.

Fear not, for God is with me.

Fear not, believe only. (see Luke 8:50)

And, the words to a hymn:

Fear not, I am with thee; oh, be not dismayed,

For I am thy God and will still give thee aid.

I'll strengthen thee, help thee, and cause thee to stand,

Upheld by my righteous, upheld by my righteous,

Upheld by my righteous, omnipotent hand. 

(see "How Firm a Foundation")

No matter what 2017 brings, I need not fear.  God knows me and will bless me, in every condition, with His eternal, unchangeable love.  

With that testimony, I can move forward with the knowledge that 2017 will be a good year, one in which I can continue stomping out cancer.  

H& P #16

Today, as I work toward a goal to Light the World, I was asked to ponder on and share a favorite scripture.  The first one that came to mind was one that has been a favorite since my high school days.  

And if men come unto me I will show unto them their weakness. I give unto men weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them. (Ether 12:27)

I began to love this verse even more through a study and discussion in one of my years of seminary.  The teacher knew that most of the students, including myself, were familiar with this passage.  However, he wondered if anyone knew that back story that prompted this response from above.  We skimmed back a few verses and learned.  A prophet lists many great things that were done by faith.  He marvels at the miracles and blessings that come from God.  Then, he worries that the things he writes will not be received because he is not talented at writing.  He fears the mocking of others.

It was the next part that hit home:

And thou hast made us that we could write but little, because of the awkwardness of our hands.  (Ether 12:25).

All of my life I had been mocked because of the birth defect that caused my own hands to have "awkwardness."  There were many tasks made more challenging because of this weakness.  I had often complained in a similar way. 

However, God's answer is simple.  Everyone on earth has weakness.  God blesses us with talents, but he also allows for our individual weak areas.  When life is difficult or a task seems insurmountable, all He asks is that we turn to Him in faith.  When we recognize that we are weak and ask for God's help, it is then we He can make us strong.   

In different seasons of life, we describe the weakness and awkwardness of our experiences, perhaps something like this:

• "God, you've made it that I can sleep but little, because of the newness of my baby."
• "God, I feel that I can teach but little, because of the difficulty of my students."
• "My ability to make it through the day is but little, because of length of each hour.  
• "God, I only feel like surviving but little, because of the length of my battle."

In those low moments, humility is the answer.  Faith is a big part of it, too.  No matter what the awkwardness may be, there is help from on high to overcome, to develop, to become strong enough to endure.  And, when you begin to see that strength, the ways in which the Lord is blessing you and making your "weak things become strong," that is when you see the miracles of life-both the large and the small.  

One such miracle I've notice in my life, (Beside the headaches finally going away!), is one I see in the mirror everyday.  Early on in the treatment of cancer this time around, I began to have a terrible skin reaction.  The doctors and nurses all believed it was an allergic reaction or a side effect from one, or more of, my drugs.  Then, when I completed the hard chemo, we'd hoped the rash would go away, too.  No such luck--they were here to stay and often became worse: large, red, itchy, and sometimes even with whiteheads.  Thankfully, they were mostly contained to my torso, rarely popping up on legs, arms, or face.  Here's a refresher from July 2nd:

I have not changed my drug list.  I continue to receive the same cancer treatments that were causing this unfortunate side effect.  However, the reaction has not been bad in the last few months.  If fact, it's starting to heal!  

(You can still see the traces of my mastectomy and the drain exit points.) 

Whether it's my body building up resistance, the new hair, skin, & nails vitamins I started taking, or God simply helping me to be strong enough to overcome, I'm so grateful for this relief!  My skin, as you can see, is not completely back to normal, but God is slowly and steadily, in a million different ways, making weak things become strong through countless miracles.  

Melodee Cooper is a Texan by birth, a Texas Aggie by choice, the wife of a fellow Aggie because ?he loves her more,? and a mother of three boys by a combination of time, modern science, and divine intervention. She has taught both 5th and 6th grade math and science, and is now able to be a stay-at-home mom, an author, an amateur decorator, a crafter, a blogger, and a holiday enthusiast. She is battling Stage 4 cancer while remaining optimistic and grateful for the blessings in her life. Melodee is the co-author of "Suffering & Surviving: Finding Sunshine in the Storm," and hopes to lift others through sharing her experiences and faith.