Luck Fupus

A lupus blog…

She blinded me with science…

This was supposed to go live tomorrow. But I got some news tonight (Tuesday), I have horrible insomnia and I finished early. And when I say “early,” this post was actually meant to go up last week.
#operationprocrastination

Hi My Loves!

One of my favorite bloggers, turned real-life friend Stephanie, of Life According To Steph and Pug Mother fame, writes a post every Thursday entitled Thursday Thoughts which is usually a mish-mash of her views on current events, politics, pictures of the her 3 amazing pugs, nail polish and other beauty products, etc… here is last week’s Thursday Thoughts, check it out, she’s the best.

SMD’s Pugs- Geege, Gus, & Maisel. I have never even seen any of the Star Wars movies, yet this is my favorite picture of the pups.
#puglife

Two weeks ago, poor little Geege  (Darth Vader) crossed over the fuzzy rainbow bridge where he can frolic on the beach and eat Kohr Brother’s ice cream forever. Please keep Steph, her husband Mike, Maisel and Gus in your thoughts. Pets really do become family. On my birthday, Steph and Mike were kind enough to let us stay at their shore house, and I got to meet the Three Amigos. I’m so happy I got the chance to snuggle Geege, if only for a moment. Rest in Puppy Peace, sweet boy.

Mar & the Three Amigos on my birthday!

Though short-lived, my time spent working in the cardiac ICU at CHOP has been the highlight of my nursing career. Sure, there were ups an downs, and not just with the kids being so critically ill, but with my own demons, questioning if I was a good enough nurse to take care of such fragile patients, and dealing with what I eventually learned was survivor’s guilt.

As nurses, even though we take care of hundreds, even thousands of patients over the course of our careers, there are always a few we hold nearest and dearest to our hearts, the ones who change our lives and make us strive to be better nurses and humans.

From the moment he grabbed my hand and asked how I got my [open-heart surgery] scar, I knew Brendan was going to make me a better nurse. He is the sole reason that despite dealing with a slew of new-onset health issues from lupus, I left my job in apheresis in pursuit of a high-stress, physically and mentally demanding job in the CICU, to give back and take care of kids with “defective hearts” just like me. Some of the highest, and lowest, points in my career are because of Brendan, a man with so much sass, so much positive energy, so much optimism even in the face of complex cardiac issues. I’ve been so grateful that I not only got to be one of his nurses, an integral part of his care when he received his new heart, but that over the years, we became friends. I gave him advice on nursing school, patient advocacy, growing up, surviving congenital heart defects, love and relationships, we talked about being away from home and I lectured him on the importance of safe-sex and ALWAYS taking his anti-rejection meds… once a nurse, always a nurse.

I found out tonight he died. I am heartbroken, and although the nurse in me knows transplanted organs don’t last forever, I am shaken to the core. I’m ashamed to admit I didn’t even know his health had taken such a bad turn, and makes me realize how as of late, my head has been up my ass.

Brendan, I don’t even know what to say. You single-handedly (or single-ventrically) improved my nursing career. I’m thankful we crossed paths in this crazy life, and I am forever indebted for everything you taught me, including seeing the best in people. Watching you grow over the years, go to school,  party with your friends, move away from home, will resonate with me always.  You have such a zest for life, and there are few who would appreciate the gift you were given like you did.

See you on the other side.

Marla & B
At an ACHD event in 2013

 

My dad’s chronic lymphocytic leukemia (CLL) relapsed in 2016, and he soon started a new oral chemotherapy called Imbruvica. For a couple of months it looked like it was doing the trick, but over time, his lymphocyte count rose. Blood work showed that my dad developed a genetic mutation over the years, and this mutation decreases the efficacy of Imbruvica, eventually rendering it useless. CLL patients who are high-risk, have relapse/refractory disease who progressed on Imbruvica showed to have poor-outcomes.

Papa Luck Fupus was diagnosed with CLL in 1991, and this is his second relapse; not bad for 26 years with the disease, he’s been remarkably lucky. At his official diagnosis, my parents were told he’d have about 10-12 good years, and he just had his 26th “cancer diagnosis-versary.” He’s clearly done something right in this time.

My dad was aware that now is the time to undergo some type of treatment, but his only wish was not having standard chemotherapy; he did several rounds of chemo in 2003(4?), and it was difficult on him. Captain Obvious, over here.

Respecting his wishes, my parents went to his oncologist to discuss options, and I was hard at work looking into clinical trials he may have been eligible for. I consider myself an informed patient, and clinicaltrials.gov makes my fucking head spin, so I don’t have a clue how your average person navigates the website without their head exploding.

One night while channel surfing, my dad came across a documentary on National Geographic, Breakthrough: Curing CancerIntrigued, my parents watched.

 

A CAR t-cell…is genetically modified… allows it to see & recognize a cancer cell. A CAR… is a molecule that’s synthetic, we can put it into an immune cell & genetically change the immune cell to express the CAR molecule… allows it to become active… and kill the leukemia.

CAR t-cell therapy is groundbreaking, and I’ve mentioned on several occasions that this will be a game-changer in healthcare, mark my word. The first reported clinical trial of CD19 CAR t-cells for the treatment of relapse/refractory CLL was conducted in 14 patients at the University of Pennsylvania. 4 patients reached complete remission and 4 partial remission; as of 2015, no patient who received complete remission had relapsed.

In Marla terms

  • Super Nurses hook patients on to an apheresis machine to collect the patient’s own t-cells.
  • Genius scientists in bunny suits spend hours upon hours in a lab where the t-cells are isolated and genetically modified with inactive HIV virus to become CAR t-cells.
  • Patient receives 1-2 chemotherapy treatments to “condition” their immune system.
  • Patient is infused with CAR t-cells.
  • Patient’s immune system goes all Fight Club on the cancer cells.

My dad called University of Pennsylvania the next day for information on the trial, and within weeks he met with physicians, scientists, and nurse practitioners, underwent extensive testing, signed consents and he was officially enrolled. He left the comfort of the hospital where he’s been a patient for 26 years, left the security blanket of his team at Fox Chase Cancer Center, not only to hopefully get into remission, but to make his mark and do his part in medicine. I’m beaming with pride not only as his daughter, but as a patient advocate who yearns to be a part of something this ground-breaking.

Two weeks ago I took him to apheresis, and watched as his blood spun through a centrifuge, separating his t-cells into a collection bag. It was surreal. Maybe as I type this, some super smart scientist is working to isolate his t-cells.

Dad and his Sweet Pea (me!) He’s kicking cancer ass LIKE A BOSS!

 

The comments and messages I’ve gotten over the years from you guys since I started this crazy blog are a huge part of what keeps me going. Words of encouragement, from essentially strangers, knowing I have people cheering me on- I love it. I was told by someone not that long ago that my blog, being active on social media, going to conferences, going on dating apps (dude, who wants to be alone?) was something I did only for attention and validation. I would be lying if I said that didn’t sting a bit, but it made me take a step back and reflect on everything I’ve done since I created Luck Fupus in 2012.

Dating apps aside, yeah it is awesome to be validated for all of this, to know that changes are being made in healthcare because I speak the fuck up. What person in their right mind would put all the work and tears into putting themselves out there and making themselves vulnerable to THE WORLD, if there wasn’t some type of validation and knowing you’re making a difference?

He wasn’t very nice, that one. In the end.

My point? I’m back, bitches.

Comments

  1. SMD says:

    Wait, WHO told you that about the attention and validation? And while it feels nice, yeah, it’s also about writing. And sharing. And helping others. And I feel a little like saying F U to that person.

    Second, thank you for the kind words. xoxo

    • Anna Watson says:

      You have given me a voice please never doubt your nay Sayers . I am 74 and self diagnosed in 1997 . I am only now being treated as an out patient at a London Lupus hospital. Your information is informative. Thank you you make my old heart sing xxx

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