Hope & Courage

I am overwhelmed by the response to the Hope and Courage segment that aired on abc27 Thursday night.  I loved everything about the show  ...except for the fact that it's my story.  If you didn't get a chance to see it, you should be able to view it through this link:  Hope and Courage - abc27 interview

Rich and I were invited to the television station to watch the show being aired from there. They provided dinner for all of us that were involved in the show and we even got a tour of the station.  (we were like kids in a candy store when they turned us loose in the news room)  Part of the show was live, but thankfully our part was taped (and edited) ahead of time.   It took SIX hours with the producers to get the 8 minutes of footage that aired!

My doctor was also there at the station and I was honored to sit between her and Rich.  I was giddy with excitement when my Nurse Navigator walked in the room and I got to give her a HUGE hug.  I haven't seen her for at least two years!  We talk often, but I don't get to see her in person much. I can't even begin to express how grateful I am for such a compassionate and dedicated medical team at Penn State Hershey Cancer Institute. 

I said that I loved everything about the show   ...except for the fact that it's my story.  I guess I can't say that statement is entirely true.  Of course, I wish I wasn't "that girl with cancer" and I most certainly have better things to do with my time than sitting through a three-hour chemo treatment,  but there are so many things about this journey that I wouldn't trade for the world!

To those of you who have supported us, we have been humbled, blessed, and overcome by gratitude and cannot thank you enough.

 

A litte note with a big challenge ....

Yesterday, I came across a note that I had written on September 7, 2012.  It was a short little note that I had jotted down while listening to one of the speakers at a Women of Faith conference in Philadelphia.  (Sorry, I neglected to write down which speaker.)  I believe it may have either been Sheila Walsh or Patsy Clairmont speaking about Moses and the burning bush. 


Tree On Fire, sunset at Saughtreeegate Farm.
Photo taken by Neil Maughan.

The story in Exodus tells us that Moses is in the wilderness taking care of sheep when he sees a bush engulfed in flames.  At first glance, this is probably not an unusual sight, but Moses soon realizes that this particular bush is not burning up.  Can't you just picture the puzzled look on his face?

As Moses gets closer, the voice of God calls out to him, "Moses, Moses!" 

"Here I am," Moses answers. 

"Don't come any closer," God says.  He explains to Moses that He knows how miserable His chosen people are in Egypt where they are being held by Pharaoh as slaves.  God has heard their cries for help and tells Moses that he is go back to Egypt to rescue them.

Moses's response to God is "Why me?"  Isn't that often our first response when faced with difficulty?  I know I have cried out those very words countless times.

God's response to Moses was clear and simple. He simply says "I will be with you."

We are all going to have to walk through a fire at some point in our lives, aren't we?  Just as Moses did, we need to get past "Why me?" and choose cling to the promise that God will be with us every step of the way.  In her book "A Woman's Heart," Beth Moore writes “only you can decide how your fires will affect you. Will you be sanctified or scarred?" 


The note that I wrote a year ago is this: 

"If you see someone who is going through the fire...

if they have flames all around them and are not consumed....  

Listen!  Watch!

...you are seeing the power of God."

 

Isaiah 43:2

When you pass through the waters,
I will be with you;

and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.

 

 



Treatment, Bus Trips, and "The Survivor's Creed"

I was hesitant to post this update too soon for fear of jinxing myself, but I think I'm in the clear now.  It has been about a week and a half since my last treatment and I feel FANTASTIC!  I have experienced very few side-effects.   A bit of fatigue and a big 'ole bruise at the infusion site, but other than that it's been relatively smooth sailing.  I am praying that the bruise heals before my next treatment and that no permanent damage was done to my vein. 

 

This treatment is a combination of two drugs:  Gemcitabine and Carboplatin.  This combination is affectionately called "GemCarbo." 

• Gemcitabine is a nucleoside metabolic inhibitor" which means that it works by stopping the process that cells use to divide and repair themselves, leading to cell death. 

• Carboplatin is the only platinum-based chemotherapy approved to treat breast cancer.  It weakens or destroys breast cancer cells by damaging the genetic material in the cells and making it hard for cells to repair any genetic damage.

I don't fully understand how they work, but am very optimistic that they will work! I will have three weeks between treatments to allow my blood cell counts to recover.  We expect to do three cycles and then scan to determine how well it's working.  Depending upon the results of the scan, I may be able to discontinue the drug or I may have to stay on a "maintenance" dose for a period of time.  It will totally depend on how effective the treatment is with knocking out those pesky cancer cells.

Four days after this treatment, I boarded a bus full of very excited ladies and headed to Philadelphia for a Women of Faith conference.  This year's theme was "Believe That God Can Do Anything."  A very appropriate theme if you ask me!?!


We were also excited to find out that Women of Faith had recently partnered with the National Breast Cancer Research Foundation.  In support of that, they held a "pink out" at the stadium where everyone wears their pink attire and accessories to show their support.  During the opening remarks, they asked for everyone who has been effected by breast cancer to stand so they could pray for us.  Let me just tell you - I would have never expected so many people to stand.  What a blessing to see all of us being covered by prayer upon prayer upon prayer. 

Heather, Carla, Karen, and Missy all "Pinked-Out"

To add to our pink t-shirts, we were all able accessorize with matching pink leather bracelets that are embossed with these encouraging words from scripture...

 "In this world you may have trouble,

but fear not I have overcome the world."

~John 16:33

 



 All of the speakers at the conference were fantastic, but Max Lucado shared some ideas that I'd like to share.   He is talking about what to do when you are in a pit.  ..a pit of despair, of hopelessness, of poor health, of depression,   ....whatever pit you are in, here are some things to help you climb out:  

1. "Lay claim to the nearness of God."  In times of difficulty you have to allow God's Word to trump your emotions.  Hebrews 13:5 says "Never will I leave you; never will I forsake you."  We may lose sense of His presence, but He is always there.  He is near no matter what our mood or circumstances are.   He is near even if we don't "feel" like He is.
2. "Cling to His character" Think about everything you know to be true about God and make a list!  He is faithful, eternal, sovereign, majestic, unchanging, merciful, patient, He still knows my name....  Keep this list on-hand so that you can refer to it when you need to be reminded of God's character.
3. "Pray your pain out."  This is a time for honest prayers.  Scream it out if you have to, but let it out!   The entire book of Lamentations is Jeremiah's raw and honest prayers to God.  Part of healing is going deep and getting real with God.  Let him into the darkest, most fearful and angry corners of you heart.  I promise you that He will meet you there! 
4.  "Lean on Gods people." This is not the time to run away to become a hermit.  Max Lucado says to "be a barnacle on the boat of Gods church."  As much as we may want to run away, in reality we need community, we need His people, and we need His presence.

"The Survivor's Creed."

by Max Lucado 

---------------

You will get through this.

It won't be painless.

It won't be quick.

But God will use this mess for good.

Don't be foolish or naïve.

But don't despair either.

With God's help, you'll get though this!

 

  

 

 

Soon to come..... Lazarus!  There is so much packed into that little story.  I'm unpacking it bit by bit and can't wait to share it with all of you!  Until then, cling to His character and always allow His Word to trump your emotions!

 

 

 

 

 

 

 

 

     

Rare side-effects ...you have GOT to be kidding me?

My first (and only) chemotherapy treatment of Navelbine was Tuesday, three weeks ago. I have to admit that I was overly confident that there would be minimal side-effects and, boy oh boy, was I ever wrong!

I progressed through the typical side-effects for the first five days - very slight nausea, a bit of fatigue, food tasted funny for a few days.  The typical description for "food tasting funny" is that you experience a metallic taste your mouth when eating.  I described it to my doctor that it felt like I was eating a lemon and my entire mouth puckered - tongue, mouth, throat, and every single salivary gland.  As it turns out, the medicine actually messes up your ability to sense proportions between sweet and sour tastes.  Annoying, but tolerable.    

By Friday, I was feeling great and enjoyed a fantastic weekend.  We met up with friends at the Lancaster Airport Community Days and all of our kids were in their glory with the planes.  Afterwards, we all went out for dinner and then retreated back to our house for a campfire, s'mores, several glasses of wine, and some very entertaining conversation.  Sunday was my annual family reunion at a local park and the weather was absolutely perfect!  I was, and will continue to be, determined to not let my health slow us down anymore than absolutely necessary.  

Lancaster Airport Community Days

Lancaster Airport Community Days

Lancaster Airport Community Days

Family Reunion

Partway through the  family reunion, I started to experience heartburn.  (Well, at least that's what I thought it was.)  By Monday morning, the "heartburn" had progressed to my stomach.  It continued to get worse and by Tuesday morning I decided that it was time to call the doctor.  I was very worried because I was scheduled to have my second treatment that afternoon and nothing seemed to be helping with the pain.  ...and by pain,  I mean a doubled-over in bed, feeling like I was having labor contractions every 90 seconds kind of pain.  It was awful!  I was miserable, grumpy, scared, resentful, angry, and in pain.

 

My doctor immediately cancelled my second treatment and called in a prescription for pain meds.  I had all intentions of posting an update at that point, but I essentially slept for the next three days.  I think this was partially from the pain meds, but also from being tired from treatment, exhaustion from dealing with the pain for several days, and feeling devastated that I wouldn't be able to continue with this treatment.

I understand now that my pain was caused by the effect Navelbine has on nerves. It is referred to as "peripheral neuropathy" and often affects the hands and feet. This is because the longer a nerve is, the more vulnerable it is to injury and the nerves going to the hands and feet are some of the longest in the body.  In my case, it was the nerves surrounding my stomach were affected.   Once a nerve is damaged, it likely to start behaving abnormally. It may become quiet and send no information, which causes numbness or, as in my case, it may send excessive and inappropriate pain messages.  This condition happens in less than 2% of patients and, for me, would most-likely occur after each treatment of Navelbine.  Of all the things for me to excel at, of course it had to be rare side-effects, right?  

 

By Friday, I was able to stop taking the pain meds and was back to normal by Saturday.   Well, physically back to normal, but I was a mess emotionally because I had no idea what my next option was for treatment.  All I knew is that I had to be pain-free for at least a week before I could start any new treatment.   

 

After another week of waiting, we decided that my next treatment will be a combination of two drugs called Gemcitabine and Carboplatin.  This is commonly referred to as "GemCarbo.  In my doctor's words, "I hope this will work well with limited side effects."  I had my first treatment today and am nervously awaiting side-effects.  

 

Encouraging quote sent to me by a good friend the day of my first chemo treatment.  Words to live by!!

 

Eighteen hours post-chemo

I received my first chemo treatment eighteen hours ago and so far so good. I've had a mild headache, but it's quite possible that it's from having my hair in a ponytail for too long.  (only me, right?)

The medication that I am being treated with is called "Navelbine." Many patients refer to it with a chuckle as "Navy Beans." Nausea is a common side-effect, but I was given medicine though my IV to prevent it and it worked like a charm!

I do have some vein discoloration in my arm where the Navelbine was injected. It doesn't hurt, but there is a definite reddish tint to my vein rather than it's normal bluish-purple color.  Navelbine is a vesicant which means it is a chemical that causes extensive tissue damage and blistering if it escapes from the vein.  I think I just have normal discoloration, but it is something I'll have to keep an eye on. I'm very hopeful that it doesn't worsen. 

Navelbine is somewhat unique among chemotherapy drugs. Many chemotherapy drugs are completely synthetic, but Navelbine is only partially synthetic and is extracted from the periwinkle flower. I think I'll visualize this pretty little purple flower during treatment next week. 

Navelbine prevents cells from dividing by fusing with the microtubules inside a cell's cytoplasm. Remember mitosis and meiosis from biology class?  Because Navelbine prevents normal cell division, it can both slow the spread of cancers and kill existing cancer cells.  I'll take both options, please!?!  

 

 

Determined ...and a little bit stubborn!

Are any of you are familiar with the Kübler-Ross model for the "five stages of grief?"  The theory is that when a person faces the reality of an extreme or terrible fate, she will experience a series of five emotional stages: denial, anger, bargaining, depression and acceptance. I can honestly say that I have experienced all of these stages over the past two weeks.  ...and to be completely honest, I have probably spent more time in the "anger" stage than I should have.  (sorry honey)

 

After coming to the end of my rope time and time again, I propose that we must move past Kübler-Ross's five stages and enter a sixth phase  .....a phase of DETERMINATION!  

 

• Determination to be realistic rather than live in denial. By realistic, I don't mean relying upon statistics.  (By the way, I told my doctor four years ago that I didn't want to hear statistics and she hasn't given me a single one yet.)   I'm talking about being "real."   ... showing myself for what I truly am - a hot mess of brokenness.   Thankfully, as a follower of Christ, I know that He doesn't see me that way.   My reality is that in Christ, I am a new creation - perfect and complete!   (II Corinthians 5:17) 

• Determination to not let anger overcome me. (Boy, I need a lot of help with this one.) Anger that crashes over me like a storm surge topping out at thirty feet above sea level. Anger that causes me to come unglued and completely blow things out of proportion. Anger that blinds me to the truth.  Every time I hear the saying "it's not what happens to you that matters, it's how you react to it," I want to jump up and scream "BUT IT DOES MATTER WHAT HAPPENS TO ME!"  I want to yell, and pound my fists, and smash things, and maybe even kick my feet just a little bit. Yes, anger is a very slippery slope for me. Perhaps we can work on this one together?

• Determination to not get caught up in bargaining with God. You know how the prayer goes ... "Lord, if you just do this one thing for me, I promise to be a better person."  Really? Do I really expect God to haggle with little 'ole me when he has already paid the ultimate price? 

• Determination to be wary of depression and the damage it can cause to my health.   The web address of this blog says it all - TODAY I CHOOSE TO LAUGH!  

• Determined to not be satisfied with acceptance and passive resignation. It's all to easy to be like Eeyore from Winnie-the-Poo and mutter "Oh bother. End of the Road. Nothing to do, and no hope of things getting better."  It can't just end with acceptance, there has to be more to it than that!!

I AM DETERMINED!  (...and just a little bit stubborn)

Gratitude changes everything...

Today didn't turn out quite as we expected. You'd think that I'd be used to that by now, but I'm not - not even a little bit.   The good news is that the radiation treatments seem to have worked and my hip is showing improvement!  (hmmmmmm..... does that warrant a new celebratory tattoo?)  The bad news is that there are some areas on my upper spine that clearly show progression.  The decision was pretty obvious - time to change meds ....again.  

For now, I seem to have reached the end of treating this disease hormonally and am venturing into the realm of more traditional chemotherapy.  We have decided on a drug called "Navelbine" as my next treatment.  This is a very mild chemotherapy treatment that will hopefully knock these nasty cells out enough so I can go off all medications for a while.  We expect very minimal side-effects. Fatigue and a low white blood cell count are the two most common side-effects, both of which I have experienced before.  

The drug will be administered through an IV line.  The infusion takes about two hours and I will have one treatment a week for three or four weeks followed by a week or two off to recuperate.   I will have to have blood tests before each treatment to make sure that my white blood cell count doesn't drop too low.  Our goal is to get through two complete cycles (6-8 treatments) and then we will scan to see if it is working.  If it works, I'll go through one or two more cycles and then be off ALL medications for as long as there is no evidence of progression.  I have been on medication for four years, so the possibility of being off of them makes me almost giddy with excitement.

Today was full of bad news, good news, bad news, good news.... I've lost track of the score, so it really boils down to this thought:  Today's scan was MUCH better than it was 18 months ago and that scan was MUCH better than it was four years ago and even though today seems like a step backwards, I'm still ahead of where I started!