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How can we help?

February 13, 2014

I haven’t posted in eons and my primary excuse is that I been sick.  Like, the ugly kind of sick.  Christmas and New Year passed in a cranky, painful haze.  We had a good weekend at my sister’s in spite of a raging temperature and raging temperament (you can only blame steroids on so much , my friends).  Then actual Christmas Day we spent lounging and being doted on my my aunt’s house.  Full Christmas dinner going down in Kentucky, partial Christmas dinner coming up in middle Tennessee.

Then the New Year.  I have had my third hospitalization already this year and hopefully, it will have been my last.  Dehydration, Pneumonia/Sepsis, and Constipation.   Yes, my final visit to the hospital was embarrassingly enough for severe constipation.  

We had a brief interlude with another infusion drug–Yervoy.   But, alas, it has been as ineffective as the others and was making me more sick than well.  The wonder drug oral chemo had been working quite well, but the aggressive type of melanoma I have has already rendered it useless and, again, one more cure that was making me more ill than improved.   So as you lie in the dim light of a hospital room with a potty chair not two feet from the bed, you want to talk through options, through what comes next, through what is going on with your husband but you are just too miserable to think, too exhausted to even reach out for comfort and just wait until it is time for the next apin shot to course through the IV and hold back the hours until they come with another one of those shots that wraps your guts in knots and forces actions that should have happened naturally, days, maybe even weeks ago.

I hope that sets sufficient tone for you because even glancing over it leaves me in tears and depressed.   

Hospice is the new buzz word around here.  Because of my steady decline and the inability of any of the curative measures to make a lasting dent in my disease, we have entered hospice care.   Hospice is wonderful.  If you have never had any experience with them, be blessed.   If you ever have any need for them, don’t hesitate.  Hospice is going to help take care of me.  They are going to help keep me at home and out of the hospital and they are going to provide much needed services for my family and support system to make all of this easier and more comfortable.  

But I don’t want this post to be focused on hospice or even failed medications or dying.  I want to take a minute and talk about God’s favorite kid.  See, that is still me.  I still pronounce everyday that healing is in my hands.  I still believe that it is part of God’s promise to me for length of days and long life.  I don’t understand how it all works, but I won’t question or diminish the Word of God just because I can’t figure it out.  Neither will I give God any less power or grace just because I haven’t seen it, yet.

Throughout this entire process I have asked you to pray for us.  To pray for the promise that was provided on the Cross the “by His stripes we were healed”.  Now I continue to ask you to pray.  Pray for the strength and grace of God that we may continue act with both grace and intention.  I think about the power of prayer and promises and commitment often these days and leave you with my own paraphrase:

Dear Heavenly Father,

Holy is your name!

We seek Your Convenant Kingdom and Your Will to accomplished, right here on earth.  

The same as it is in Heaven.

Provide for each of our daily needs and provide us with your Grace as we give your Grace to those we encounter.

Help us to follow your lead, and seperate us from all that is profane,

We continually recognize you as King, having all and giving You all Power and Glory.

Forever.  

Amen

(Mareeka paraphrase)

Keep the Faith!

 

When Death is in the room

November 12, 2013

Friends, I have been absent from the blog for a long time time.  Partly because I have been very sick, partly because I had nothing to say about being quite so sick.

I know you have been praying, sometimes because my sister posted “please pray”, sometimes because you just had me on your heart and prayed, lots of times because that is just what you do.  Everyday. You just pray for me.  To give you the whole story of what we have been through in the last couple months, I need to go back to August. It seems a long way, but Chris says I am not very honest about my condition, I say, I just try to focus on the good things.

So, back to August.  I was working full time and that wasn’t working what with the weekly all day trips to Vandy, getting drugs and blood and what not. I dropped a day a week from my work schedule and for a few weeks it worked.  It took the pressure off.  I wasn’t having to spend evenings at home making up hours I had lost during treatment because treatment was not conducive to work. I required drugs and sedation to not vomit all the way through.

Then the vomiting and sweats spread from just treatment day to everyday.  There is nothing more professional than spending half of a VP level meeting in the bathroom chucking whatever stupid thing you thought would stay in your stomach through the morning.  I am not sure if you have ever heard me vomit.  It is not a dainty, feminine thing.  It makes me think that actual body parts are going to emit from my mouth.  I can’t vomit softly. I am not sure I can do anything softly.  So there I was, telling my account manager that I couldn’t do it.  I couldn’t finish the day on this project we were just getting started that relied heavily on my nursing experience, that I was out.  Great timing.  I felt horrible.  Physically.  Emotionally. Professionally. This project was going to be the most interesting and involved project I had been on to date and I had to let it go.  So I took short tem disability. I left miserable and it went downhill from there.

We spent th next few weeks continuing the treatment and declining physically.  I spent all day on Monday at Vandy, mostly in the infusion department getting study drugs and anti nausea medicine and blood  transfusions. We watched my lab work decline as my liver enzymes went up, my blood count went down, and everything else went sideways.  I spent the rest of the week constantly medicating against the vomiting and fever and chills. Mostly the vomiting.  I got to a place where I was living on Popsicles and Pringles. They gave me Phenergan that I could rub on my wrist because I was unable to keep it down and too weak to put it elsewhere it might be beneficial.  At that point I spent a weekend in the hospital. This was the same week that my oncologist had the conversation with Chris and I that it was not the medication that was making me so sick, it was the melanoma. It had overgrown most of my abdomen and there were no more treatment options.  Our new goal is keep Mareeka comfortable, he said.  So the weekend hospital visit was to try to get some big gun IV meds in me and pump up my fluid volumes.  Oh, yeah, in the meantime, my liver slowed down fluid processing and I developed ascites in my abdomen that made me look about six months pregnant and made it very difficult to breath and even harder to eat.  They would take care of that while I was in the hospital, too. So the brand new doctor who had never done this before got to drain my abdomen.  I told him from the get-go that I was going to run my mouth.  I was an ass.  I would like to blame the drugs, but it really was just me being unfiltered.   And rude. Chris called my family and several close friends to the hospital because they needed to hear the prognosis from someon other that us.  They tanked me up, I was discharged. Not much changed at home except Chris took off work and I had a drain placed. They placed a semi-permanent drain in my abdomen that let us drain the ascities as often as we needed to help me breathe. About twice a day.  The other significant change was that people started showing up. Not just dropping by and leaving food, but staying the weekend, cooking the meals and feeding them to my family and doing our laundry.  

This precarious balance of trying to sustain me with popsicles and draining large amounts of fluid lasted about three weeks. Then over the weekend Chris went to play soccer and when he got home, I couldn’t stay awake.  I couldn’t answer questions.  I couldn’t slow my heart rate down under 155.  Chris and my dad threw me in the car and wheeled me to the ED. I  barely passed through triage and straight to a trauma room. None of this do I remember. What I remember is that they asked me who was president and I said Jimmy Carter.  Chris says that isn’t even true.  They asked, I did not respond. I woke up three days later in the ICU totally oblivious. Hannah was there and I could barely sit up.  Don’t worry, it gets worse.

I was still reeling with vomiting, now mostly wretching because nothing was really going down, but I kept trying.  The situation came to a head when one afternoon, shortly after lunch, I was having more wretching only this time accompanied by the worst pain I have ever experienced. I am pretty stoic, I can handle pain pretty well.  I was grunting and groaning just under a scream, it hurt so bad.  

An ascites drain, a few milligrams of Dilaudid, and some Phenergan later, I was able to be still long enough for a CT.  Turns out one of the tumors in my abdomen was located right where my stomach meets my intestines and it had all but blocked passage of anything out of my stomach.  Enter the vomitting and inability to maintain my fluid and electrolyte balance, which was my most critical and pressing problem.  We were failing on two fronts.  There was nothing left to do to reduce the size of the tumors and we were also failing on the “keep Mareeka comfortable” goal.

Enter the Melanoma oncology fellow.  Right in the midst of the wretching and moaning and draining. I mean, like a shadow, he popped in the room in the midst of the worst of it. “We have some new information”  See, between the time Dr. S gave us our new goal and this day, he had sent my tumor to a specialty lab that marks DNA.  Out of the 700+ lines of DNA that were reviewed, 7% of them had a bRAF mutation.  There is treatment for bRaf mutations.  There is targeted chemo for bRAF mutations.  We could take the bRAF chemo and see if it can be effective against such a small amount of mutated tumor.

Let’s see, take a new drug that might do something beneficial or take no drug and count the days.  Seems like an easy choice.  Yes, please, bring me the drugs.  The simplicity of two little pills taken twice a day was just icing on the cake.  So, that afternoon, I took all the anti-vomit drugs, took the whopping doses of pain meds and then took the chemo.  It stayed down.  Later that night I took another dose and slept all night.  Two doses later I was eating small vollumes of liquid and soft foods and having no vomiting and being discharged from the hospital.

We made the trip home.  I was so weak, Chris had to help me up the three stairs from the garage into the house.  I started with 3-4 four ounces of soup and soft food and short walks–to the end of the sidewalk, around the house three times. I have gotten better everyday. I have almost mastered a mile. It’s the hot, pukey feeling that stops me. I think now that it is cooling off, I will go further. This week, we might get a little exercise in the pool.

So there you have it. Death was in the room. But Death did not win. I asked myself yesterday in the shower, why didn’t I die? I am a nurse. A critical care nurse. I have been on the professional end of that situation and I wonder. It was easier for my body to die than live, why didn’t I die? Why? Because I said so! Because for almost two years I have been saying, “I will not quit, I will not fail, I will not die, I will not suffer loss”. Because for almost two years, everyday my father says ” She will not die but live and declare the works of The Lord”. Because we believe in a God who does not lie and whose word will not fail.

Death may not be in the room with you today, but is there something that you need to say out loud? Where do you need to apply some persistence? Don’t accept things that aren’t aligned with what God says is possible for you. Start using your mouth. Don’t believe me? Don’t wait until Death is in the room to try it out!

Square One

August 14, 2013

Monday of this week was the first day of my new clinical trial and since I have gotten a whole lot of questions about it, I thought I would share it here.

I mentioned Anti PD-1 in an earlier post but was leery to go into too much detail before the trial actually started because getting into a trial like this is often a trial in itself.  But now we are in and so I will fill you in on all the fun and gory details of how we got there.

I hear you asking “how does this clinical trial work and how do I know you aren’t going to get screwed by randomization again?”  I know you are asking that because that is the first thing my sister said.  

Take it easy, friend, here is how it works:  The study again has three arms.  It is a two drug trial–ipilumimab and novilimab.  One arm gets the novilimab, one arm gets the ipilumimab and the third arm gets both.  It is a double blinded study meaning no one knows what group I am in except a scientist in a lab somewhere far from Franklin, Tennessee.  Probably.  I don’t really know where Bristol Mayer Squibb has lab facilities.

Back to the study.  So, every participant is randomized into one of these groups, however, previous research of novilimab shows that those who took ipilumimab (ipi) before they took novilimab (novi) have a far better response than those who just got novi.  This was an incidental finding when treating melanoma patients whose disease had progressed.  Now, the drug company, 10,000 oncologists, and the FDA want to replicate those results.  SO the trial progresses as this:  If a participant has progression of disease while in the study, they can be unblinded and receive the ipi if they were not already getting it.  (Ipi has been approved by the FDA, novi has not).

One of the other big requirements of the study is that the participants had to be otherwise healthy.  I mean, except for a little cancer and all.  I fit that bill.  Pretty much.  Ask me to tell you about the two units of blood that were ordered for me from Mexico.  I fit that bill.  I am symptomatic, but my body is healthy, no cardiac problems, no brain mets, no kidney problems, otherwise healthy, just a little cancer.

We had our first infusion on Monday evening and I had some significant physical responses to the novi “dose” that make Chris and I pretty confident there was drug in that infusion.  Not so sure about the ipi “dose” but that one usually doesn’t show any symptoms until after the third dose.

The side effects we have to look forward to are pretty mild, considering.  Both drugs are Immune therapy, neither are chemotherapy agents.  The side effects look like a strong immune response–fever, fatigue, appetite loss, maybe some muscle loss, diarrhea, extreme cases a little colitis or a little pleuritis.  Both things that are very treatable and things that we can try to ward off at the pass.

If this week was any indication, I will have about 36 hours of running a low grade fever and feeling bad and then I will need a good night’s sleep.  I worked yesterday, I worked today.  I didn’t feel great yesterday, but today I mostly just feel like I need a nap.

Now if you are very clever, you noticed at the beginning that I mentioned something about Anti-PD 1.  This is the cool part.  This is the Peter Parker, Unbreakable stuff.  This is where all those dollars donated to cancer research starts to pay off in spades.  The medicine I am taking is a brand new paradigm in treating cancers.  It has only been pursued for a few years and completely flies in the face of standard chemotherapy.  If you are allergic to science, stop reading now.  Regular chemotherapy kills off as much of your immune system as it can without killing you in hopes that it can also kill off all of the cancer cells.  This therapy enhances your immune system to both recognize and destroy cancer cells through your body’s own T cells.  That is where the Anti Death comes to play.  Yes, I said Anti Death.  Doesn’t that sound cool?  One drug helps the T cells identify the cancer cells as irregular or foreign, the other drug stops an enzyme reaction in your T cells called programmed death that identifies when the T cell has accomplished enough work and destroys itself.  Now I will have bionic T cells.  They will have been treated with Anti Death.  

It is working.  There have been phenomenal results with every solid tumor cancer that has been given this therapy.  There have been EXTRAORDINARY results with melanoma.

I keep telling Chris I AM ANTI DEATH! (to be said in the voice of Batman). I am going as Anti Death for Halloween.  I just have to figure out what Anti Death looks like.  I think it looks like what I see in the mirror every morning.

Okay, this post has gotten long enough.  If you still have questions, please post them as comments either on Facebook or on the WordPress site.  Pretty much nothing is off limits.  I am a nurse, I am used to talking to people about anything.

 

Keep the Faith,

God’s Favorite Kid

 

Stones vs. Mountains

August 14, 2013

Not to worry, this is not a new, more complicated version of rock, paper, scissors, lizard, Spock. This is a small insight into my psyche for the last couple weeks and maybe we can come through this together.

A dear friend of mine posted this Max Lucado devotional a few weeks ago and it ripped all over me. My responses didn’t say anything about Lucado, it was all about where I have been the last few weeks.

The post was exactly this:

In Mark 5:23, Jairus pleads with Jesus, “My daughter is dying. Please come, heal her so she will live.”

He doesn’t barter with Jesus. He doesn’t negotiate. He just pleads. He asks Jesus for His help. And Jesus, who loves the honest heart, goes to give it. But before they get very far, they’re interrupted by emissaries who tell them, “Your daughter is dead. There’s no need to bother the Teacher anymore.”

Get ready. Hang on to your hat. Here’s where Jesus takes control. The Bible says: “But Jesus paid no attention to what they said.” I love that line! He ignored what the people said. Why don’t you do that? When falsehood, accusations, or negativism come, just ignore it. Close your ears. Walk away. Ignore the ones who say it’s too late to start over. Disregard those who say you’ll never amount to anything.

Jesus said to Jairus what He says to you: “Don’t be afraid—just believe!” “Trust Me,” Jesus is pleading. “Just trust Me.”

Max Lucado, He Still Moves Stones

Now, I don’t have my response recorded but I can recall it pretty closely. I responded such:
I am so frustrated by Max this week, it seems everything I read from him, he is minimizing the miraculous. It wasn’t just a group of people being negative or bringing falsehood. That little girl was dead. I am not talking about negativity or small problems. I need a life and death Jesus. I don’t want to limit God to stones, I need a God who still moves mountains.

Through all of that righteous indignation in my tone, here is where my head and heart had been– I was repeating my brain scans. My least favorite thing to do. I have needed a small miracle every time I have been in the MRI scanner to get though it without having a complete come apart. What if the melanoma has spread to my brain? What if the melanoma has spread to my brain? What will we do if the melanoma has spread to my brain?

Do you see the maybe not so subtlety there? I was doing the the very thing I was complaining about. God, I can trust you for a miracle as long as it fits inside my parameters of how You can work. Surely, God can heal my body of melanoma, but my brain is a whole different thing!

I was driving home from work the day before my MRI, not really focused on anything and I heard a voice deep in my spirit in a worried affectation saying ” What am I going to do? What if it is in her brain? What am I going to do? I mean, melanoma is one thing, but brain mets? What am I going to do?” And I just started laughing. Out loud, alone in my car. I was laughing at the Holy Spirit for teasing me. Teasing me and teaching me the exact same lesson that He taught Jairus. JUST TRUST ME!

So, I am taking God out of the box. I am trusting Him.

What is limiting you from letting God do something good for you? Are your problems too big for him to handle? Are they not big enough to bother God?

Problems big or small, you are still God’s favorite kid.

God’s Favorite Kid

July 22, 2013

I am going to go out on a limb here and preach a little bit.  If that isn’t your thing, back slowly away or just graze the following content with a half smile…

I haven’t written for several weeks because I haven’t been really sure of how to say what I want to say. I have written several posts that never made it public because I felt a little bit like I was going out on a limb and once you are out there, it is really hard to come back.  It is much easier to fall.

So here goes:

I used to say all the time that I was God’s favorite kid.  Something good happened to me as no real result of my effort, I would just shrug and say “I’m God’s favorite kid”.  That is how I was raised.  That is how we talked in my house, that is what I believe in the real true core of my spirit.  I am God’s favorite kid.

See, when I was young, middle school age, not even a teenager, I geeked out on GRACE.  Some kids geeked out on Star Trek or sports.  For me, it was grace. I had a box set of cassette tapes by Kenneth Copeland about Grace and how grace empowered our contract with God as adoptees into His family.  I had notebooks filled with notes and thoughts and sermons and more thoughts and more notes on what it meant to me–personally–to be God’s kid.  I know.  I was a weird kid.  I still am.

But I have always lived in that world–having a very real, pragmatic view of what being God’s kid meant to me.  I am God’s favorite kid.

Um, I hear you saying, Um, Mareeka.  You have cancer.  It is kinda the bad kind and it seems to keep getting worse, not better.  Would God’s favorite kid get cancer?  Here is the short answer:  yes.

Here is the long answer:  I will not attempt to explain everything that I do not understand.  I do know that I live in a world that is wrought with sickness and disease and strife and disappointment and hurt.  I also know that life isn’t fair and in every life there is trouble.  I know that I am human.  But I am God’s favorite kid.  I know that I have been talking to God lately about not understanding my circumstances but KNOWING that He has a path laid out ahead of me.  I have been talking to God a lot about not getting in the way of my healing.  I have been talking to Him a lot about the promises He made and how He needs to hold up His end of the contract.

And this is the response I am getting.  Every time I go to God, I am reminded of His deep and abiding love for me.  Every time I go to God, He reminds me that out of His love for me he provided Grace that would meet every need.  Every time I go to God, He reinforces that I am indeed, His favorite kid.

I don’t believe that God allowed me to have cancer so I would learn something.  I don’t believe that.  I did, however, tell my dad that if I was going to go through this that I would be coming out the other side smarter.

Here is what I am learning–when we start to understand who God is and how much He loves us, nothing else is a stretch.  When we really start to grasp the intensity of which God loves us and how hungry He is to share that love with us and show us grace, everything else seems to get much smaller.  Healing isn’t a stretch, not when you are the favorite kid of an Almighty God.  Mountains that seemed to loom giant in front of us just seem to lose their scariness when you start looking at them through the eyes of God’s favorite kid.

I have been listening to lots of music and sermons to build up my spirit and feed my soul over the last few weeks and one song has played over and over and over.  There is a link to it here:  http://www.youtube.com/watch?v=bnH4k3NHWoQ

The song goes:

No mountain, no valley
No gain or loss we know
Could keep us from Your love

No sickness, no secret
No chain is strong enough
To keep us from Your love
To keep us from Your love

How high? How wide?
No matter where I am
Healing is in Your hands

How deep? How strong?
Now by Your grace I stand
Healing is in Your hands

Our present, our future
Our past is in Your hands
We’re covered by Your blood
We’re covered by Your blood

How high? How wide?
No matter where I am
Healing is in Your hands

How deep? How strong?
Now by Your grace I stand
Healing is in Your hands

In all things we know that
We are more than conquerors
You keep us by Your love

How high? How wide? Oh, Lord
No matter where I am
Healing is in Your hands

How deep? How deep is Your love?
How strong? How strong is Your love?
Now by Your grace I stand
Healing is in Your hands

I have been listening to that song over and over and over and tears streaming down my face asking God–How do I get it out of Your hands and into mine?  God, I don’t want to get in my own way here.  I don’t want to let notions of how You work or what you do limit Your ability to act in my situation and I don’t know how God talks to you, but me, usually He gives me a picture and a thought to hold on to.  This is what I got–a picture of God, holding out all of these things in his hands–tangible, real life, everyday kinds of things–holding them out to me.  Just holding them there outstretched to me.  And I was singing this song over and over and I just heard the Holy Spirit say:  Put it in your hand.

So now when I sing that song, I don’t sing “Healing is in Your Hand” I sing “Healing is in MY hand”  And I still sing it over and over and over and tears are still streaming down my face every time I do, because I know.  I know.  I know.  Healing is in my hand.

Can you conceive of how much God loves us and wants to do good things for us?

What do you need to put in your hand today?

Ever heard of anti-PD1?

July 2, 2013

Still got your big girl panties on, friends? I hope so, because you are going to need them.

I don’t know how else to say it but just to come right out and say it–I have progressed to stage IV melanoma. I had PET scans on Friday last week and follow up with the oncologist today. Since my last set of scans I have developed significant liver metastasis, some bone mets, and some more lymph nodes.

When Dr. S and Debbie, the nurse practitioner both came in the room, we knew the news was not going to be good. When I asked to see the scans and Dr. S told us he didn’t think it was a very good idea, I knew it was bad.

So there it is.

I am repeating my brain scans on Wednesday and having a liver biopsy as soon as it can get scheduled. A new drug study is opening on Wednesday and the study drugs are having some phenomenal results. I may be the first person to sign the consent.

That being said, we are not sitting down, we are not quitting, we are not giving up. Physically, I feel great. I am still working, eating well, working on getting stronger and still taking care of my babies. We aren’t going to change anything. We will keep moving forward. We will keep putting one foot in front of the other.

Back an eon ago when I was diagnosed, I wrote down the five things that I was most afraid of and re-wrote all of those fears into positive statements that I repeated over and over. Since my latest recurrence, I have been reading a book of healing scriptures daily. In the last six hours, I have been stripped down to the absolute elemental. I am repeating over and over “I will live and not die. I will live and not die. I will live and not die.” The truth is, I believe that. It is easy when I am not feeling any symptoms. I still FEEL like I am on the road to recovery. I will continue to walk this out.

Keep the faith,
Mareeka

It’s What All the Cool Kids are Wearing…

June 11, 2013

My niece is five months younger than Amelia and we love watching them grow together.  The first year there was a significant difference in those five months, since their first birthdays, there has been very little distinguishable in their age.  Then Amelia went and got herself potty trained just a little bit before her cousin.

 

Well, that playing field is leveled once again and Ms. Harper sent us a video with her newly minted song and dance about big girl panties.  “I’m wearing big girl panties, I’m wearing big girl panties.”  It is a little repetitive but very sweet.

 

One of my best friends is always encouraging me with the fact that I “have on my big girl panties” or I can “put on my big girl panties” and tough it out.  That I have the resources to get through this.

 

Well, this week, my car exploded.  Okay, really, the dealership told me that a starter coil exploded and took out the communication between my starter and the engine cylinders.  We have been carpooling around on a single vehicle.  We weren’t expecting to fork out for “hybrid” repairs.  Work is tooling back into busy mode.  And I just got a text from daycare that my son is biting.  People.

 

Needless to say, Harper’s song is spinning through my brain today:

 

I’m wearing big girl panties!  I’m wearing big girl panties!  I’m wearing big girl panties!  I’m wearing big girl panties!

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