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.

  

Long overdue Keytruda dose 21 update

Once upon a September and October, I began having a few strange symptoms with my Keytruda doses including weight gain that didn’t match my calorie intake, loss of pubic hair, some hot flashes. I mentioned them after discussing them with a nurse practitioner here. I had my estrogen levels tested and menopause was ruled out. Yay!

At my November appointment, my oncologist had taken a look at my symptoms and labs and diagnosed me with metabolic disorder. I certainly have a family history of these symptoms, although I don’t know if anyone in my family has actually discussed the overarching diagnosis of metabolic disorder with a doctor in the past.

My oncologist believes these symptoms are probably something that eventually would have been diagnosed with age, but the clinical trial medications or perhaps just the stress of this cancer journey have brought on the symptoms on a good 20 years early. Thankfully they are treatable and may not need medication but sweat therapy (aka exercise!)

It was after I finished with the doctor that my triglyceride levels came back from the lab and were high enough to rate a grade 3 adverse affect which meant I couldn’t get treatment that day. I came back the next day for fasting blood work which reduced my levels from 400 to 300, but not low enough to get me off the hook for a medication. I began meds and had beautiful blood work and dose 21 two weeks late on November 21st. It went without a hitch, thank God! Now I wait to see an endocrinologist to treat medication induced metabolic syndrome.

Looking For Light in a Dark Room | Cancer Knowledge Network.

Living with chronic advanced cancer is a tough path. I understand that others around me often don’t really understand that melanoma has no remission. It’s fatiguing to deal with as a patient, family and surrounding community. And thinking about living a long life post “lab rat” (clinical trial patient) is intimidating not knowing what long term health issues may surface.

Finding ways to support this population is imperative and one of the reasons I consider myself a patient advocate. It’s nice to see my own needs considered and reflected on by other patients.

Just kidding, but for reals

Yesterday at my appointment with the nurse practitioner, we were discussing some unusual side effects I’ve been having. My trial nurse looked up a list of side effects of one of my drugs. The list was extremely long and literally included these four side effect possibilities.
Weight loss
Euphoria
Weight gain
Depression

Of course these were not listed together so perhaps we wouldn’t notice? Tonight I prayed as I opened my pill bottle.

“God, please allow this bottle to bring euphoria and weight loss as the side effects. Just kidding. Sorta. But for reals. Amen.”

I’ll let you know what happens.

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