Archives: Melanoma

What a miracle am I!

The family is spending our last evening of winter break enjoying one another and I have the following childrens song going through my head. Do you know this one?

I’ve got hands, watch them clap

Oh! What a miracle am I

I’ve got feet, watch them stomp

Oh! What a miracle am I

Oh what a miracle, Oh what a miracle

Every little part of me.

I’m something special, so very special

Ain’t nobody quite like me!

Tonight I am feeling the miracle of my life. Six years after a stage 3/4 melanoma diagnosis, I am returning to work full time! I’ll be doing my dream job with a dream team at the kids’ school. I feel prepared, energized and as ready as I can be (with perhaps a little nervousness mixed in!)

It’s strange that without reflection this feels a bit like I’ve been home with the kids for these 11.5 years just doing the stay a home mom thing. But with reflection that comes with saying goodbye to a dear friend who passed away Jan 1st after a melanoma battle, hearing a friend jokingly say I should be given credence because I had dodged death, sharing my story of hope with a friend looking into clinical trials for pancreatic cancer, I relaze this is HUGE!

I’m not proud of myself for surviving this far. I have done nothing to deserve this. I am a beloved child of God, but so is my friend who passed away this week. I am seeing amazing doctors in a time when medicine is advancing quickly and successfully treating many cancer patients. So was my friend. I didn’t juice or kale my way healthy. I am lucky. And thankful for that. SO thankful. And tonight I’ll sing that I am a miracle. Not out of pride, but with a thankful heart and full of hope for my friends who are facing melanoma and other cancers. We all deserve miracles.

Tomorrow and for the rest of the semester, I will go spend the day with 28 2nd graders. We will get to know one another as we study fractions and adjectives and write poetry. My students won’t know about my cancer journey. It’s not a secret, but it’s not applicable in the classroom.

CANCER will NOT be relevant in every area of my life!

Thank you God. Thank you to everyone who has supported us. My cancer journey isn’t over, but it is limited in it’s power. I’ll give it one day a month when I go have my infusion for a few hours. And I’ll enjoy this gift of life. Oh what a miracle.

  

Sun Safety Essentials!

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I am thrilled to be attending my first Mom 2.0 Summit at the end of the month! Bloggers from all over the country and even Canada are gathering in Scottsdale to share ideas and inspiration. I am lucky enough to live in Arizona so I can drive with some friends to attend!

I know many people are looking forward to soaking up our beautiful Arizona warmth and weather! And by golly, we look forward to sharing it! But, there is danger associated with our sunshine I’ve faced firsthand.

I am a fair-skinned red-head and grew up in Arizona. I wore sunscreen most of the time, never laid out in the sun nor went near a tanning bed. Yet, the UV is so extreme in Arizona, I ended up being diagnosed with melanoma (the bad skin cancer) at age 29.

I’ve been on a 6-year journey battling lung and brain tumors and want everyone to avoid what I’ve been through. Here are some tips so you can enjoy our beautiful weather and avoid injuring your own skin and risking your health.

Who wants cancer or to look old prematurely?
Not you?
I thought so.

Slip, Slap, Slop and Seek Shade

UV levels are highest between 10am and 4pm. I looked up the UV levels at the Phoenician over the next 4 days. You can clearly see from the image below when you need to use sun protection!

UV levels in Phoenix April 2015

http://uv.willyweather.com/az/maricopa-county/scottsdale.html

My mantra for when I teach sun safety for children is, Slip on a shirt, Slap on a hat and sunglasses, Slop on sunscreen and Seek shade outside!

Continue reading →

Stability

Stable melanoma

One year stable!

 

Many of my melanoma friends (aka “mela-homies” if you tend to the dorkwad side like I do) reach a place where they take a photo of themselves holding a sign that says “NED” to celebrate scan results which show “No Evidence of Disease.” NED is the best it gets in late stage melanoma. There isn’t remission status because melanoma is too sneaky in returning.

Perhaps one day I will be NED, but I had a lot of tumors and they leave scar tissue and shadows on scans so it may be difficult for me ever to be declared “NED.” My scars just may be too numerous and deep.

But, I had a CT scan yesterday and got a call from my nurse today that my results were STABLE! This is the best we could have hoped for and worth celebrating! So here is to stable scans!  My first stable scans were on Jan 27, 2014 so yesterday was my one year anniversary of stability. It is time to celebrate a year of stability!!! Hurrah!

Five years of melanoma

Five years ago today I was diagnosed with melanoma. The phone rang while I was sitting at the kitchen table creating picture labels for dresser drawers with Joey and Abby. I had NO idea what was coming or what the diagnosis meant. Joey was 5 and Abby was 3. I had Danny come home that day at lunch to cry on his shoulder in fear. I knew melanoma was “the bad skin cancer” but not much else.

It’s been five years, seven surgeries, six biopsies, ten treatment approaches, nine chemotherapy and immunotherapy drugs, tumors come and gone through treatment and surgery and two years of dealing with brain tumors and their aftermath. We’ve come a long way, baby! And I know a lot more about melanoma and its treatment now.

We are in an odd place though. Continue reading →

Historic day in mela-land! Anti-pd1 FDA approved!

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Yesterday, I was speaking with a counselor who is working with our family. As I explained some of our back story to her, I told her that when I was diagnosed with melanoma in 2009, my kids were 3 and 5 years old. I was 29. When I progressed to stage 4 a year later, my goal and focus was being here to get Abby through kindergarten. When I reached that goal my focus became to see the kids finish elementary school. After some big bumps in the road (brain tumors are BIG bumps) I began the clinical trial I am currently in. One day about a year ago after repeated good scans, I remember looking at Daniel and saying, “I’m going to see them graduate high school!”  Today my hope is to see them married and rock my grandbabies.

Today, the FDA approved the drug that is saving my life. I am so excited and thankful for this medication and that is will now be available for my melanoma friends. The trade name announced today is Keytruda. The medication name is Pembrolizumab.

There are more anti-pd1 drugs being developed for multiple cancers which are literally changing cancer treatment and outcomes. What an amazing day to sit and take a deep breath and know that my friends now have access to this drug. History was made today.

It’s bittersweet as I remember MANY friends whom I have loved and lost along this road. From my diagnosis in 2009 to today, 5 new drugs have been approved for stage 4 melanoma. In 2009, the offerings and success rates were dismal. But, I also feel such hope for the future. For my friends currently struggling, for my friends who will be diagnosed in the future, and especially for my children. Today brings hope and joy!

Thank you God for the doctors, researchers, trial patients, nurses and financial donors who allowed this to happen. We have not yet won the war against cancer, but today was a big step as a new arsenal was made available to those on the frontlines.

For more information about Keytruda, see Merck’s Press Release.

Stable, shrinking, and storms! Anti-pd1 dose 19

This post was written on Aug 14th during my infusion. I didn’t get it polished to post at the time. That night was Parent Information Night at school. Joey ended up in the PICU the next day! Add recovery from that, some time the site was down and life in general and Anti-pd1 dose 20 is only 3 days away! I am on every 12 week scans now, which is a welcome break, so this post includes the results of those scans.

Today was my appointment for scan results and my next dose of anti-pd1. It was a long morning of waiting. I was quite nervous about my scans this go round. Lots of my friends are encountering major potholes and detours on their melanoma journeys and it caused me some fear that my lately smooth road might get bumpy. I am thankful for my success on this trial but heartbroken for those who I love who are struggling. Cancer is a horrid disease. Thankfully my oncologist told me I was his only patient who received good news morning. That certainly put the wait time into perspective.

So, things are good in Marthaville! My tumors continue shrinking and remain stable. So I continue pressing on! We had a fantastic storm while I was at the cancer center including some loud thunder claps and a good power brown out.

Mk-3475 Antipd1 Dose 19

Stable! Shrinking! Storming!

Post MK-3475 (Keytruda) flush

My post infusion 30cc flush. (Other trial folks and I have noticed that this is delivered differently depending on our center. This syringe is added to my medication bag to make sure I get every drop!

Daymares and Talking Gooder

Today was my six month follow up with the neurologist about my seizure meds. I had two things I wanted to discuss with her today. One is my daymares which are vivid and I often can’t wake from despite repeated false awakenings in my dreams. This may be caused by the Keppra I am on due to focal seizures. Although it would be unusual for it to cause new symptoms after a year. So, after some discussion about my variety of medications which may be the root of these symptoms, we came up with two plans.

Plan A is for me to reduce my Ambien dose to the new FDA recommendations for woman (5mg rather than my prescribed 10mg.) And go back on brand name Keppra just to be safe. Generic meds have the same primary ingredient as the name brand, but filler ingredients don’t have to be exactly the same. So with medications which affect brain chemistry, my neurologist is more comfortable sticking with brand name when insurance cooperates!
Plan B is to reduce my Keppra (seizure med) dose from 1000mg XR to 750mg XR daily if plan A doesn’t work.

My other question for her was about my frustrations with expressing myself. I tend to be a grammar stickler, but despite repeated rereadings, I am overlooking simple misspellings and misused words in my writing. It is embarrassing and frustrating! I have noticed that in the past year my verbal aphasia has improved significantly, so we are hopeful that my brain will continue rewiring around my necrotic (dead) tumor sites. Speech therapy could help or playing some of the brain games online. We do know that my seizures affected my communication and reading so it makes sense that these areas are the slowest to recover. In the meantime, I shall consider blogging therapy and continue begging forgiveness for my grammar mistakes. It’s all a part of the journey. Isn’t cancer grand?

3 days and a ton of bricks post anti-pd1 therapy

I felt so great after my infusion of anti-pd1 therapy on Thursday! Came home and enjoyed the family and got some chores done. On Friday I stayed busy and had a girls night out with some of my besties. This morning, three days post infusion, I felt I’d been hit with a ton of bricks. I saw the signs coming last night, drinking tons of water but it wasn’t absorbing. Then at one point while out with friends, I felt fatigue and a bit of light headedness wash over me. I also didn’t finish my gelato from Frost- a sure sign of impending doom! Once in bed, I realized my leg that swells with lymphedema was very swollen.

So, I shouldn’t have been surprised when I woke up swollen, sore and exhausted! I slept most of the morning and more this afternoon. I’m so glad Daniel is home to carry the load. He takes such good care of us. The family is out on a walk and I am still resting. This is the new normal and I wonder if it will ever really feel normal. I am so thankful that most days now are good days so the bad ones stand out!