Archives: Personal

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.

  

Trashy Novels and Redeeming Fiction

Today was an epic three novel day! My favorite kind of summer day. Definitely feeling the fatigue from my last infusion, so I gave myself a rest day and made the most of my time with my Kindle! The first two novels weren’t noteworthy (romance trash I’ll delete and try to forget.) But today I decided to tackle “The Fault in Our Stars” by John Green. I’d been quite nervous to read this book considering I try my very best to steer clear of pediatric cancer stories whenever possible. I experience an abundance of pain and sad stories because of the cancer communities I participate in and although I do follow and actively support the parents of a few pediatric melanoma patients, I do avoid intentional exposure to those stories. My mama/cancer patient/selfish heart just can’t deal.

I am so glad I risked reading “The Fault in Our Stars.” Although it is about pediatric cancer patients, I found myself relating to them as patients much more than with my mom heart. So much of the worldview and frustrations expressed by the characters in this story resonated with me. From facing a terminal diagnosis turned to cautious optimism due to new drugs, impatience with cliches but understanding that others are doing their best to comfort. Identifing with the fraternity of patients, despite differences in outcomes and diagnosis. And especially fear of hurting loved ones due to the diagnosis hit home. Even the frustration with those who attempt to lead support groups but are maddening in their probing. The annoyance at the warrior mantra and “winning” a battle when while we would like to claim credit for victory, much of this journey is beyond a patient or doctor’s control. And especially the frustration of the seeming randomness and unfairness of the disease and success of treatments. All struck a deep place in my heart and mirrored some of my own internal dialogue.

I was also surprised that I made it though the book with most of my emotional detachment intact. I shed a few tears as I read but more for myself and fellow patients than the characters in the book. Am I becoming scarred to the pain of this disease? Perhaps, but more likely I am too intimate with stories of friends who have suffered to die and suffered to live facing similar circumstances to these characters. It was those friends’ stories along with my own which brought tears as they echoed in the book.

I would certainly recommend the read to anyone. You might need some tissues handy as the characters are lovable and it is a book focused on pediatric cancer!

Blame the chemo-brain for my not recognizing this earlier, but I realized when I finished the book, John Green is the face of one of my favorite vlogs. You should check out his Youtube Channel Vlogbrothers! Once this connection clicked I wasn’t surprised at all that I loved the book!

Anti-pd1 cycle 17

 

Melanoma infusion

Technically I’m getting fluids here… but close enough!

Last Thursday (June 19th) I had dose 17, week 60 of the Merck MK-3475 trial drug. (AKA Pembrolizumab, formerly known as Lambrolizumab, anti-pd1, melanoma immuno-therapy, my miracle drug)

I had a CT scan and saw Dr. Cranmer last week for scan results, which looked fabulous. Everything continues to shrink! We spent most of the visit geeking out and comparing notes about ASCO (American Society of Clinical Oncology) Annual Conference and the melanoma conference I’d attended in May. Nice to just chat about shared frustrations in the need for patients to see melanoma specialists and not being given treatments in an order that seems logical (at least to us….)

This appointment, since we knew things were looking good, Daniel stayed home with the kids while I went to my appointment alone. Labs look great! My LDH has dropped again! I am well within the normal zone for this tumor marker in blood.

LDH Levels on Anti-PD1

LDH Levels while on Anti-pd1 Trial. You can see when my immune system activated and a spike while on drug holiday.

I saw my nurse practitioner and the trial nurse coordinator. This was a quick visit since everything had been reviewed last week.

I headed upstairs for my liter of fluids and infusion. It was a quiet day in the research room. I did freeze sitting under an AC vent with the cold IV drip so I got my first heated blanket wrap in a while. Feels a little odd when it’s 103 degrees outside!

I went home and slept all afternoon which is unusual for me. Usually when I have fluids with treatment, I am not as wiped out. Perhaps the heat just wiped me out. Getting into a 130 degree car is probably enough to suck most of that liter of fluid right back out of me! The weekend was tolerable, although the post infusion thirst is insane. I also am fighting my usual rash and a slight headache. My one new symptom this month is dry eye and some slight redness since the infusion. It’s always an adventure, but SO worth it for amazing results!

 

You might be a cancer geek if…

On Friday night you are reading ASCO (American Society of Clinical Oncology) melanoma related Abstracts on your laptop

With these books beside it at the ready
•The Tales of Beedle the Bard by JK Rowling (Potter fan)
•Small Steps by Louis Sachar (former teacher geek out)
•Missing Microbes by Martin Blaser (NPR recommendation by hubby and BFF)
•Doctor Jenner and the Speckled Monster- The search for the Smallpox Vaccine by Albert Martin

And you have a small legal pad containing a list of things to do to improve your SEO and blog post ideas.

So, if your Friday night looks like this, you might be a cancer geek. Or just geek in general.

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Thursday Anti-pd1 Appointment Update!

Anti-pd1 Dose 16, Trial Week 56 (I wrote this on the way home from my appointment last week, but didn’t get it posted. I’m much too lazy to go back and change the tenses, so pretend you are reading this last week!)

Great appointment today at the cancer center. Started with requesting my favorite nurse to check my port placement. It had caused some issues at my last appointment, but it was confirmed as caused by an inexperienced nurse, not port issues! Phew!

My labs looked good. My LDH (a tumor marker in blood) has officially been in the normal range for two months now! It continues to steadily go down which feels incredibly victorious!

I saw my nurse practitioner and discussed upping my SSRI (Lexapro) as expected (the dose usually needs upping after 4-6 weeks.) This fits my normal pattern. I’ve been on SSRIs for post partum depression, again for interferon (my first melanoma treatment) side effects, after I was diagnosed stage 4 and now again. It probably now something I will stay on forever. I am very comfortable that I need this due to brain chemistry issues and not some moral or spiritual failing on my part. {Soapbox} I feel it is important to bring mental illness discussion into the light and out of a place of fear and condemnation. {/Soapbox}

I also was having some left flank pain which worried me because it felt so similar to flank pain I’d had with subq (under the skin) tumors on my right side. No worries though, it’s just a muscle spasm. I am scheduled for massage next week if I can’t get in before that.

Infusion went fine. Got to catch up with a friend and his caregiver I’d met in our local support group. Requested IV fluids since they seem to help with my fatigue. I just can’t seem to drink enough ever to keep myself hydrated.

My only other anti-pd1 side effects are a slight rash around my neck and on the back of my hands.

Not a bad morning at the cancer center! Now to go celebrate my new 3rd and 4th graders since today was their last day of school! Yippee!!!