Bills, Bills, Bills

If you are insured and receive statements periodically from your insurance company you might see the “THIS IS NOT A BILL” watermark and then ignore it toss it in a drawer until the actual bill comes. I am 100% am guilty of this.

We all know how expensive health care is, and that intensifies once you are being treated for a chronic condition. To give you an example to demonstrate how absolutely INSANE this is:
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So what you’re looking at is one of several bills that average a little over $67 a pop for an injection called Neupogen. Neupogen helps increase the number neutrophil count in your blood and thus helping your body to fight off infection. I am required to receive three shots in the week prior to a new cycle of chemo; therefore every three weeks it appears that I would need to spend about $200 JUST to get these shots.

What is most alarming to me is that for the uninsured, it would cost a person nearly $3000 every three weeks to keep their white blood cells in check for chemotherapy. Forget the thousands upon thousands of dollars charged for chemo, surgeries, and other fun complications.

…And we are talking ONE MICROGRAM of the stuff.

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Um…yes, actually.

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But seriously. This is nuts. I am well insured, working, and able to pay my medical bills just fine but seriously how does anyone that does not have the same circumstances afford to be sick? Just, how?!

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It’s pretty disheartening. For $960, Neupogen shots better come in a diamond encrusted syringe.

Alas, I digress…

I’m not here to solely complain about corporate greed. What I really want to do is set the backstory for something that I didn’t know was a thing!

Listen up sick people-

After talking to Sheila to confirm that what I was reading was accurate, she informed me that it was but she would put me in contact with someone at the hospital to talk about it.

Luckily as of Oct. 24th they are switching to a less expensive brand of this drug (Zarxio- which I feel strongly should be the future name of my first child. No stealing, expectant mothers). This makes for much more affordable option (just over $500 a shot before insurance) and a far more reasonable co-pay.

What is even better is that this drug company has a co-pay assistance program that would help to cover the cost of what insurance will not! It’s not a payment plan, you don’t need to pay it back, and if I had to guess it’s offered to get more people to use their product. I would have never known this unless the Financial Authorization Coordinator, Kristi wasn’t so diligent.

So in conclusion, having a chronic illness can be crazy expensive, no I don’t need a loan, and finally- QUESTION your bills before you blindly pay them.

 

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(p.s. If you thought for a second that I would name this post ‘Bills, Bills, Bills’ and not post a Destiny’s Child GIF than you clearly don’t know me well enough).

 

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Unnecessary Excitement

It wouldn’t be a true Jess Sultaire day at Women and Infants hospital if I didn’t cause a little bit of trouble.

Today began as your average weekly chemo day would. Day 1 of another 3 week cycle: steroid, Pepcid, Benadryl, 1 hour of Taxol, and 3 hours of Carboplatin.

A little background surrounding Carbo. There is a risk of allergic reaction therefore you are required to take 20 mg of steroids the night before and the morning of chemo on the Carbo days. I was pretty confident that I wouldn’t have a reaction. I still took the steroids as a precaution but mostly because I’m a rule follower.

Even so, I was confident that if I was going to react to Carbo, it would have happened already.

Fast forward to the beginning of hour 3 of 3 for Carboplatin.

Amparo, our medical assistant, happened to walk by my room. It was nearing the end of the day so she popped her head in to say goodbye. Mid-sentence she interrupted herself to say: “you are all red!”. A look of concern came over her face. Of course, not realizing how I actually looked, I responded (perhaps a little too casually): “Nahh. I’m fine, it’s just hot in here.”

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With growing concern in her voice she called in the first infusion nurse she could find.

It turns out it was a potentially far more serious situation than I knew. All of the sudden EVERY chemo nurse had surrounded my bed. I’m not joking- there were 8 medical professionals crammed into this room. Everything happened so fast. I was having a reaction to the Carbo and the protocol is to act quickly.

*I should clarify before you get too concerned that luckily my only symptom of this reaction was turning Heinz ketchup red from head to toe. My airway was not restricted and I did not experience itchy palms.*

They swiftly hooked me up to the blood pressure cuff and pulse oximeter to continually monitor my blood pressure, pulse, and blood oxygen. I they pushed a dose of steroid and Benadryl directly into tubing to reverse the effects of the reaction.

Even though I was physically okay. Something happened, in my mind I was triggered.

The sudden rush of nurses and their collective looks of concerns tapped into a buried trauma. It was so reminiscent of the fear and confusion I felt when I went into septic shock earlier this past summer. I didn’t have a visual “flashback” but I very intensely tapped into that deep seeded fear and confusion where I didn’t know what this all meant. I began to experience an involuntary physical reaction to that fear- increased heart rate, shortness of breath, tears.I can’t be sure because I don’t believe I have had one before, but I think this could be classified as an anxiety attack. They placed oxygen under my nose to help me catch my breath while Betsy and Caryn rubbed my back and reassured me that I was okay.

I know I speak incessantly about the stellar care I receive at Women and Infants but it cannot go unacknowledged just how well they support their patients. In addition to every single nurse coming to my aid and knowing just what to do, they were incredibly warm and compassionate. One of them even ran upstairs to get Sheila because she knew we were close and thought she would help to make me feel comfortable.

If this blog ever ends up in the hands Mark Marcantano (President and COO of WIH), the following infusion staff deserve a massive raise and recognition as a result of this  particular incident: Amparo, Betsy, Caryn, Ann-Marie, Ivone, Beth, Susan, Sandra, and of course Sheila.

(Sidenote: Unsuccessfully tried to find contact information for Mr. Macantano to email him directly. If anyone has it, send it my way. Between GYN onc, the 4th floor of the main hospital, and the infusion center, senior leadership NEEDS to know the level of care that is being provided by these angels)

Anyway…

Over time the redness came down, I was able to catch my breath, and the fear subsided. Betsy told me that she would stay as late as it took for the redness to disappear. By about 6pm I was back to normal.

So after all of the months that I’ve receive platinum based chemotherapy dating back to 2013, why now? Why would I react all of the sudden?

While I had assumed (wrongly) that the more exposure to something, the more your body gets used to it, that is not true in this case. Over time your body can start to view the Carboplatin drug as an antigen, meaning a toxin/foreign substance/allergen. As a result, your immune system reacts by sending antibodies to fight against the antigens.

I kind of see it going down like this:

What now?

The next two weeks of my chemo cycle is fortunately only Taxol. When my new cycle begins we will likely do a “desensitization chemo”. This protocol is considered when a drug is seemingly working but a patient reacts like I did to it. Instead of going to the infusion center I would receive the treatment in the main hospital oncology floor. I wouldn’t be inpatient (I can go home when it’s done), but the infusion would be incredibly slow.

~1 hour for predrugs: steroids, Pepcid, Benadryl

~1 hour for Taxol

~6 hours for Carboplatin (normally it is 3 hours)

It’ll be a pretty long day but it’s a safer way to infuse and reap the benefit of a drug that could be working under close supervision.

Now, if this desensitization chemo still causes me to react, we will probably have to break up with Carbo. We could potentially just continue with Taxol only or maybe Dr. Robison will have another chemo up her sleeve to try.

So that’s that. I’m totally fine. Aside from feeling fatigued, I’m feeling okay today.

I will need to have Cory bring me to Providence to pick up my car from the hospital. I ended up needing so much Benedryl yesterday that they told me I couldn’t operate heavy machinery for 24 hours. Sarah Breen is an incredibly selfless human and no questions asked picked me up from chemo and drove me the 45 minutes home even though she worked all day (an hour away as it is). THANK you Sarah. I love you more than you will ever know for all you do and all you are.

I’ll end on a less dramatic, happier note:

My CA-125 dropped from 843 to 642 🙂

Progress.

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The Bucket List: Sans Morgan Freeman & Jack Nicholson

I don’t think there is a way to say this without sounding a cheesy.

I made a bucket list…

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A cancer patient made a bucket list, how original.

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So why now? What prompted this cliche?

A single article: 91 year old’s bucket list journey

I read the initial article as it circulated social media a few months ago. It’s about a woman diagnosed with Uterine Cancer at age 90. She decided to skip chemo and go travel to do all of things she has always imagined doing in her lifetime. As you may see, she did a whole heck of a lot in the span of a year, probably more than most do in their lifetimes.

No one wants to live out their days hooked up to IV poison. At 90 years old I would have said “eff it” too and just let everything else take its course.

Admittedly I was jealous of Norma. If it was evident that I would meet my maker soon, I would want to do the same. The reality is that I’m in my 20’s, there is a lot of life to be had, and no indication that I’ll be kicking the bucket anytime soon (that’s a good thing). I still need to work full time and plan for the future.

Norma’s adventure got me thinking about purpose and fulfillment. Am I doing everything I want to live a purposeful life? What do I want to do that I haven’t done yet? What can I do that will push my own boundaries? As I spun through the “I really want to ______” rolodex of my mind I became overwhelmed. Can I do what I need to do? Will I have the resources? Will I feel well enough?

Is there enough time?

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And there I went again, staring my mortality in the face.

It happens every now and again. The thought of my own mortality isn’t persistent. Sure it’s intrusive, but not a daily thing. For me, it doesn’t act as these ongoing big, dramatic, moments. When I go to bed at night I don’t think to myself “hope I wake up tomorrow!” I think “my phone just indicated that I need to wake up for work in four hours and twenty-one minutes, yikes.”

The reality is that intrusive thoughts will visit you periodically and you have to sit with the discomfort and find productive ways to transform it.

The grim realities of disease can either drag you down or they can motivate you (although truthfully it’s a little of column A and a little of column B.) In this case, I sat with these strong feelings and allowed it to challenge my pattern of thinking.

I had the great privilege of speaking with Zach Mercurio, writer and educator recently. Zach writes and speaks openly about awakening one’s purpose. He has published some great articles in the Huffington Post as well as on his blog, Purpose Speaks. His message is mainly “why does this matter?”, more specifically “why does what I’m doing matter right now?”

Coming down from the energy of the Izzy Gala, combined with speaking to Zach on this topic, and being super peanut-butter-and-jealous of Norma, my bucket list was born. It was a way to reconcile the nagging thought that time could be* running out.

*I purposely said “could be” instead of “is” because no one knows when their story eneds. For all I know, I can live with cancer for 10’s of years or a freak sinkhole could form around my bed and I could fall in and die without warning (for real THIS HAPPENED in Florida in 2013). I’m not Nostradamus therefore I have no business agonizing over how much time I ultimately have on this earth. It doesn’t really matter. What matters is what I’m doing right now.

So back to the bucket list. Or perhaps a more appropriate name would just be: Joyful Opportunities. A collection of low stress, high intrinsic reward ideas to pepper into my daily life as I see fit.

You may be wondering: “Jess, what’s are these “joyful opportunities” you speak of?!”

I’ve opted to keep my list to myself for a few reasons, although I will share a few examples to demonstrate my pattern of thinking. First, it’s highly personal and although my list is pretty vanilla, I’m not inviting others to weigh in on what I find meaningful to me. Secondly, this should be a low-pressure endeavor. By putting such goals in a public forum I may feel more stress to have to achieve them. These joyful opportunities are to serve as rainbow sprinkles on an already fulfilling life, not check boxes on a to-do list. I’d rather keep the full list between me and the pages of my journal.

(P.S. Steph Frazitta, if you’re reading this, my list lives in the fresh pages of the new journal you gifted to me. I couldn’t think of a better home for it.)

I will say that I found my goals falling into three overarching themes: 1.) Travel, 2.) Things I want to create, 3.) Things I want to do for others. (and as a byproduct of all themes, 4.) Things I want to eat, nom nom nom.)

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I acknowledge that I won’t do everything that I wrote in my journal but I was fairly realistic and simple with the experiences I hope to have, so much of it is doable. One example that I am willing to share is something I hope to do this weekend:

  •  Bake a lattice top apple pie from scratch.

I chose this experience because it’s one of those things that “matters now”. Baking to me is calming, low-stress, productive, and requires you to be in the moment. It allows me to share with others and quietly create something beautiful (hopefully) and delicious (hopefully).

Sure I have more adventurous experiences on my list and pie might sound boring but again it is an intentional endeavor and matters to me in this moment.

I’ll end on a spoiler alert: sky diving, bungee jumping, and freebasing did not make the list. Anyone who knows me should not be shocked by this.

Enjoy the long weekend everyone! Be sure to fit in moments for yourself where the joy to stress ratio isn’t too skewed in the stress direction.

Living in Lilac

Here we are at the 5th annual Izzy Gala.

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I look at this photo and can only think about how lucky I am. On a purely surface level, we are lucky to be afforded the comfort and luxury of spending an evening at a “purple” tie event on the 18th floor ballroom of the historic Biltmore Providence. Not everyone gets to dress up in a gown, sip champagne, tear up the dance floor to a live band, and retire to a beautiful room facing the city’s statehouse alongside their dashingly handsome best friend. It is a privilege to take part in such an experience.

That “luck” extends beyond the feeling of glitz and glamour. I think we can all agree that having cancer doesn’t make one lucky by any stretch of the imagination. I suppose what I mean is more serendipitous. All of the twists and turns that life has taken in the past few years that have led to deeply routed connections with some incredible individuals. I always harp on community that exists around illness and it is truly beautiful to see it in action.

The Izzy Foundation blossomed out of grief. The grief of a child leaving the physical world too soon as a result of cancer. From the ashes of loss came rebirth and Isabelle Wohlrab’s tiny, loving, spirit would live on. In Izzy’s memory you have a brightly decorated family room in Hasbro Children’s Hospital that provides comfort and respite to families that are just trying to hold it together through some of their toughest days. You have over $23,000 in scholarships this year alone for children and their siblings to be able to go to school and ease the burden of growing medical debts. These are tangible results of a community that decided to make life better for others facing similar battles.

When Dr. Robison was giving her toast, she spoke about the intention behind this year’s theme “Living in Lilac”. Beyond continuing with the purple theme, it was important to her to communicate that in spite of it all, you and your loved ones can live a full and vibrant life alongside cancer. It cannot dull all of the laughter or love or generous spirit we have within us. This year I listened to her  deliver the toast not as Dr. Robison, my trusted oncologist- but as Tina, Izzy’s mom. It was raw, authentic, and hopeful.

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As the primary facilitator of my care since 2013, I’ve always known that Tina “gets it” when it comes to evaluating medical decisions from the standpoint of quality of life, impact on family, work, etc. Last night was a reminder of that level of understanding.

That understanding extends to the Women and Infant’s staff present that have also become like family. Last night I had the pleasure of bopping around to Tom Petty alongside people that have consistently gone beyond the call of duty to ensure that I stay well. To these medical professionals, you aren’t just the next patient on the schedule. They cheer you on, they cry with you, they hurt when you hurt. They don’t just go home when their shift is over. These are people that on the most human level, feel for your experience and do everything they can to help improve it.

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Living with cancer can be a lonely task whether you are the patient or caregiver or loved one. We don’t always understand the disease and we don’t always feel in control of our fate. Sometimes we feel exhausted, utterly depleted. Sometimes we let the fear of “what-if’s” consume our projections of the future. Sometimes it feels like too much for any one person to handle.

Well, it is.

But- with the support, warmth, and drive of a community that understands the plight, we can come together and lift each other up in unimaginable ways.

Last night’s event was bursting with the kind of love that could only be captured in the heart of a spirited child. I am grateful to those that made it possible for Cory and I to share that experience. It means more to us than you know.

Izzy would be so proud.

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