How will Santa know where to find me?

My one medical update is that I FINALLY was granted the procedure to have a g-tube placed. This is a tube that goes through my stomach that attaches to a small pouch. If I feel as if I am obstructed instead of having to go to the ER and spend months in the hospital on bowel rest, all I need to do is excuse myself and empty my pouch. I will not have to rely so much on uncooperative intestines.

I’m in a lot of pain but have a small pain button that administers IV meds continuously at a very low dose. Every ten minutes it can push a larger dose by patient request (by pressing button). It is also controlled in such a way that patients cannot overdose. No worries, friends! No accidental OD’s here.

So as much as I didn’t want a g-tube this summer, I know that this is necessary and dare I say it-

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I think I’m glad I got one…

 

 

So I thought good and hard about what I wanted to share with you.There are the miserable weeks upon weeks of pain, uncertainty, fear, blood, procedures, guilt, what feels unfair.  I could tell you about how part of me is ready to escape these walls and seek the comfort of Cory and my little house in our little town on our little street.

 

So instead I’m going to share with you how spending EVERY holiday in the hospital didn’t totally suck. I’m not saying that there aren’t better ways to spend your holidays but it’s not all doom and gloom when you’re surrounded by the right people.

 

Christmas

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The nurses decorated my room, hung a stocking, and left two unopened gifts. It turned out to be a fuzzy robe and slippers paying it forward from a previous patient. So nice! The last perfect touch was Maggy’s poinsiettta.

I was truly disappointed not to have “our firsts” together in the new house like our first christmas tree or our first cookie decorating(eating til’ we puke) night. More than anything I was looking forward to watching Christmas Vacation together per our tradition. That said, it will make next year’s Christmas list.

 

New Years 2017

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I expecting a low key night with my handsome fella and Stacey  but I was double surprised when  my other wolf pup sista, Michelle, walked through the door! It was the best surprise. I am sad that I don’t have a pic of all of us and that I felt so crummy around 10:30 forcing myself to bed early. Then again 2016 kinda sucked so I suppose it was fine to bow out of the old year early. Cory, Michelle and Stacey could have been anywhere else with anyone else having a much more exciting night (or at least experienced better people watching. Thanks love buckets 🙂

The next day I experienced some more home town lovin’ from my girl Jaclyn in the afternoon. She hauled her law school hehind down from Boston to check in. Thanks to school her life these days is very often not her own so I was appreciative that homegirl could come.

 

Last but not least,

My 29th Birthday

Before I go into any detail about my actual birthday I must remind those that have infrequent encounters with nurses. These are not just the people that take blood pressure and take your temperature. Nurses are the special breed of super-human, caffeine-driven, part-scientist, part-mathematician, part-mind reader, part-social worker, part -cheerleader, part ass-kicker, will not take no for an answer cherry on top of your day advocate. If anything they are just like you and me but profoundly better in every way.

So it should be no surprise that with my luck, my birthday fell on a day that I’m STILL living in the hospital. I mean, that’s bad enough but I’m also still NPO which means I cannot eat or drink anything besides an occasional ice chip (edit: as of this evening I can have liquids). Emily found a solution for that 😉

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This is how it went down from the real beginning:

12:01am: Entire 3rd shift nursing staff enters my room to sing the Happy Birthday Song (I’m already full of happy tears)

Throughout the next day there seemed to be a never ending supply of gifts and flowers and love! My day nurse luckily only had me at the time and treated me to a gorgeous manicure.

 

 

Even the residents doing their oncology rotation remembered and put together a little hand made card.

 

My parents were here! Just when I though this day couldn’t get any better…

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Oh an Alicia jumped out of a “cake” clothed for the sake of  HR and all that fun stuff haha…

 

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I think this final picture of the gift from the 4th fool holds strongest meaning to me. If you sent me something beautiful that did not make it onto the blog this time please know that I am truly appreciative of your love and know that you are with me in spirit.

 

That’s all I have for you for now.

-NG tube is OUT WOO!

-G tube is IN

-I can now drink  clear and full liquids 🙂

Thanks again for keeping my chin and spirits up over the past weeks. I have never felt alone.

Breathe Easy Lil’ Weezy

Dear Lil’Wayne fans,

I’m sorry if I mislead you. This post is in fact, not about Lil’Wayne at all. I just needed a catchy rhyming title. In order to not totally upset anyone that clicked hoping to hear some news about Holygrove’s finest, here is a gif of Weezy dancing in front of an Audi.

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In other totally unrelated news…

Thoracentesis is the WORST, am I right?!

Otherwise known as a lung tap, a necessary evil after noticing an increase in shortness in breath over the past few months. At first I chalked it up to not being active enough but then it became more frequent and intense in situations that it should not occur at all.

I had this procedure twice before a while back. It is necessary when there is excess fluid buildup (called pleural effusion) between the lungs and the chest wall. Below is the before and after of my actual chest x-ray. Fluid exists on both sides but it is far worse where I circled it in red.

*Please note that the weird gadget you see so clearly on the left side of the image is my chest port. I can’t be totally sure, but I don’t think that having a port is quite enough to make me a cyborg*

Overall they were able to remove almost half a liter of excess fluid in hopes of taking some pressure off of the lung to breathe easier.

Now, the last time I had this procedure I described it in graphic detail and even included a diagram to illustrate. I do recall that this was poorly received by family/friends/readers so instead I will provide a less gross, creative representation of what a lung tap is kind of like.

You know, like if my body is a Capri Sun pouch, and the straw is the tube in my back, and the weird melting kids are fluid being extracted…

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Better?

I must give credit to the best crew: Evelyn, Laura, and Sheila for sticking with me, playing relaxing music, trying to make me laugh whenever possible, rubbing my arms when I was crying or the discomfort was too much, and not giving up even though my body was not totally cooperating.

If anyone was listening outside of the door of that exam room they would be met with utter confusion as the mood bounced pretty quickly back and forth from rip-roaring laughter to hysterical crying with some whale songs mixed in.

I wish I could say that I woke up the next morning feeling total relief but unfortunately I am still pretty short of breath. Not worse than before but not better. The hospital contacted me when I got to work yesterday and urged me to go back to the hospital as soon as possible for another chest x-ray as it appears there may be a “loculation” (jelly like pocket of fluid that happen from multiple lung taps) or “pneumothorax” (abnormal collection of air in the chest cavity from puncture in the lung).

Totally freaked out, I had an involuntary ugly-cry in my office and asked Doug (or front desk advising SAINT) to reschedule my last 6 appointments so I can leave by 2pm.

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Ever the voice of reason, Doug reminded me that my health is priority no matter how busy work is. He found a way to reschedule ALL of my appointments for the day so I could head to the hospital immediately. I am so grateful to my colleagues that always step up to make my life a little easier during tough times.

On my way out I ran into Laurie, a colleague that oversees many offices in my division, and despite her busy day she dropped everything and gave me a ride to Women and Infants. Normally I would drive myself but I was too emotionally drained to be stubborn when she offered. I’m so glad that I accepted the help and we ended up having a nice morning together (considering the circumstances).

I was able to have a speedy x-ray and speak with a radiologist. Luckily, it does not appear that the lung was punctured. THANK GOODNESS! It does appear that there is pocket of air outside of the lung. Because that air is there and shouldn’t be, the lung cannot fully expand which lends itself to the continued shortness of breath.

Sheila and Evelyn suspect that when we did the procedure and were having trouble finding the “sweet spot” where the fluid is and hitting resistance, she hit a loculation (pocket of jelly-like fluid) and that is now where the air is. This is pretty much the best case scenario because it would mean the air is not escaping from the lung and that in time it will just resolve itself. What a relief.

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So that’s that.

At the insistence of my colleagues, I’m taking a few days off to rest and let me lungs do their thing and returning to work on Monday.  I feel guilty for not being there during such a high volume time but as Doug said, it’s not the end of the world and everything will get done. I am no good to anyone else if I’m not 100%. I’m physically and mentally drained. I definitely need this time to get centered and take care of myself.

I’m always reminded of a lesson one of my graduate professors instilled in us:

There is a reason on planes that you put your oxygen mask on first before helping others. If you can’t breathe, you can’t possibly help anyone else survive.

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Also- there is a new treatment plan in the works but to be honest, this post is long enough. I’ll keep you updated soon. What I will say for now is that I will still have two more weeks of Taxol before we switch to something else.

Countdown to real hair begins!

Chemo Fail

Dear Carboplatin,

It’s not you, it’s me. Actually it’s mostly you at this point. I mean, you’re a great chemo and all- don’t get me wrong. You don’t make me that sick. You only come around every three weeks so you’re not clingy. We’ve had some really mediocre times together. But alas we need to break up. We should see other chemo. I wish you the best but…

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Love always,

Your Platinum Reactive Ex


Ok glad we got that out of the way. I hope Carbo didn’t take the breakup too hard.

Yesterday I was treated in the main hospital oncology floor with the scheduled Taxol/Carboplatin desensitization chemo. Due to the allergic reaction that I had to Carbo a few weeks ago, we had decided to try it again under careful supervision and a painfully slow drip. All in all I was there for about nine hours.

To be honest I had slight reservations about being treated on the 4th floor of the main hospital. Inpatient oncology is where I essentially lived for most of the summer and my memories are not the most pleasant. I didn’t know if it would trigger me emotionally but luckily I did just fine. I’m guessing I was okay because I have positive connections with the nurses that I would be seeing. That went a long way. I mean, if anyone from WIH is reading this and knows Alicia, say no more. You can’t possibly frown with her around. She’s a damn good nurse, keeps it 100% with everyone, has a mouth like a truck driver, and a sense of humor to match. She wasn’t assigned to me but came by throughout the day to check in which I was grateful for.

I was happy to see that Lil’ Kim was assigned to me for the day. I knew immediately that I would be in good hands.

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So this is how a de-sense works…

Based on some crazy math formula that I made Kim explain to me in detail, that I now do not remember in the least, they figure out the quantity and rate of Carbo to administer over the course of six hours. It has something to do with your weight and I think the number 140 was in there somewhere….carry the 2? I don’t know. The extent of my math at work is making sure I can add up 122 credits and calculate GPA when needed. I’ll leave this one to the experts. In any case, how the chemo is administered is incredibly strategic as to slowly introduce the drug to your body in hopes that the smaller amounts at reduced rates will prevent a reaction. They also take your vital signs every 15 minutes.

Unfortunately going into my LAST bag of Carbo I reacted. Same as last time. I felt a little warm but other than that I felt fine. I turned blotchy and red all over my face, neck, chest, back, arms and hands.

This first picture^ was when I decided to see what I actually looked like because I didn’t know last time. It’s not the clearest of pictures but I’m pretty red (except for my cheeks for some reason? Reverse blush?)

Per protocol they immediately stopped the chemo, pushed Benadryl and gave me more steroids. This reversed the reaction and eventually I was back to my normal pasty-pale self.

I am fortunate that the reaction wasn’t terribly severe. Although,when they pushed the Benadryl I had a strange tickle in the back of my throat and momentary trouble breathing. It resolved itself within a minute or so but was a bit scary at the time. I don’t think this had to do with Carbo at all because it happened almost instantly when the Benadryl was pushed it. I’m guessing it was a response to how quickly the Benadryl entered my system.

Sheila got in contact with Dr. Robison and it was begrudgingly decided that we needed to be done with Carbo. I have heard the term “platinum resistant” before so I asked Betsy if that is what I was now due to this reaction. She kindly explained the following terminology to me that cleared things up:

Platinum Resistant = When the cancer is no longer responsive to platinum based chemo (such as Carbo).

Platinum Reactive =When the cancer IS responsive to platinum based chemo but your body rejects it. Hence, allergic reaction.

So I would fall into the latter category. It’s not that the chemo isn’t working, it’s just that my body is giving it a hard NO. We need to listen to what my body is telling me and move on to something different.

As of this moment I am not sure what the next steps are or how soon we will know what the next treatment plan will be. I’m guessing within the next 2-3 weeks we will have a better idea. I’ve been experiencing some shortness of breath lately so we have a chest x-ray planned for next week. I’m unsure if Dr. Robison will want a CT scan but again, we will know more soon.

So, despite having a long and disappointing day it ended on a side-splittingly hilarious note because Cory, Sheila, and I went to see the comedian Tig Notaro in Providence at the Columbus theatre. She had us laughing so hard the entire time- I was in tears. It was just what I needed.

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If you ever have the chance to catch her stand up, please do. Also- she’s a cancer survivor and her book is amazing so check that out as well if feel so inclined.

That’s all I have for now, but I’ll keep you posted as details about a new treatment plan unfold.

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.

All Things Hair

Hair and I have had a complicated relationship over the past few years. Or perhaps all my life. How many times have we been guilty of looking in the mirror furiously straightening/curling/blowing out and announcing to no one “I HATE my hair”? Well that was before I started systematically poisoning myself and it all fell out. Now I kinda miss the little buggers. Imperfections and all.

Before I started writing this I went back in time to 2013 and 2015, the two other years that I was treated with Taxol (the chemo that makes your hair fall out) to remember how I felt about the hair loss events.

To recap:

2013– It was an emotionally challenging process. Working out your identity as a chronically ill person is not something that comes easily or happens quickly, and it’s never really “complete”. Losing my hair made the illness visible. At that time, I needed the wigs to reclaim my femininity (which I felt robbed off sans hair and all reproductive organs). I didn’t look or feel like myself so wearing wigs was necessary for my comfort.

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2015- Let’s be honest. I was SUPER sad to lose this hair. It had grown back darker, curly, and it was adorable. That said, I didn’t have the same emotional response to losing the hair. I had my head casually shaved by my girl Emily at the salon and went on my way.

Aside from work where I would wear a hat or scarf, I generally went bald most of the time and was very comfortable with that. I got the occasional second look from time to time, mostly because you don’t often see women with cue ball heads. It didn’t bother me. I had already done a lot of “emotional work” so this wasn’t as emotionally taxing as the first time.

What is strange is that even though I was on taxol pretty much all of last year, my hair randomly started growing back in the middle of it. Bizarre.

PRESENT DAY- After a short taxol hiatus we started up again in late spring. To be expected, my hair started to thin. I didn’t bother shaving it in hopes the same “growing back miracle” would grace me again.

No such luck.

I’m not emotionally attached to having hair. I’d rock a buzz cut again no problem (do you see how round my head is! My saving grace). But hair is just fun! It’s like an accessory. So in seeking out said fun, back to wigs I go…because- why not?

The talented Ky Michaels of The Ky Michaels Salon in Providence agreed to take on the challenge of updating my wigs. Actually I asked him to do one and he’s doing all three because that’s just the kind of gem he is!

I went in to see the finished product for the two that are ready and per usual Ky did not disappoint. I know he spend a lot of time and energy, at home no less, to make sure I ended up with hair that made me feel polished and pretty.

Mission accomplished. The wig pictured directly below used to be the length of the first picture. I love it. It’s bouncy, full, and I feel great in it.

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Look #2: A little longer for variety.

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In short, I’ll be sporting some new looks and now Cory has 4 girlfriends.

 

Port on the Starboard Side

Holy insomnia. I actually did sleep for a few hours last night but it was one of those sleeps where your dreams are so intense and bizarre that you don’t feel rested. Full disclosure- I don’t fully remember all of the details but it was some combination of being part of being a newly retired olympic gymnast and Big Brother contestant. Neither of which I’d be very good at in real life (can’t do flips, bad a comps, not competitive). Although it beats my Stranger Things inspired dream from the previous night that left me a little hesitant to find my way to the bathroom in the dark (note to self: string Christmas lights and befriend Eleven for protection).

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I’ve been awake from 3am-6am to embrace the weird/non sleep and get caught up on Big Brother.

Non-fans of any of these shows…just move on. Clearly the sleep deprivation is not conducive to a clear and concise actual treatment update.

Anyway, I’ll keep the rest semi-short and sweet.

Monday I had the new port placed. I was told it would likely go on the left side of my chest but they did an ultrasound beforehand and determined that despite scar tissue from the previous port they would still have no problem placing it where it was before on my right.

The port was placed under VIR (vascular and interventional radiology) at Rhode Island Hospital. It was the same place where the first port and PICC line were put in so I had an idea of what to expect. I was under conscious sedation so although I was awake sterile barriers prevented me from seeing what was happening and IV drugs prevented me from feeling it.

I will be honest, leading up to that day I wasn’t nervous or concerned but when I was in the waiting room after check in I had a mini-moment where I was feelning pretty overwhelmed. Cory was with me and talked me through it like the champ he is. I don’t even think it was the procedure itself that freaked me out, I just felt triggered by simply being there. Remember, my only experiences at RIH have involved getting ports placed or the ICU for septic shock. Not a great track record for fond memories.

The night after surgery I didn’t sleep at all. I was in a lot of pain and nothing seemed to take the edge off. I can best describe it like Conor McGregor slugging you in the collarbone as hard as he can. 513972668-conor-mcgregor-punches-nate-diaz-in-their-gettyimages

I returned to work the next day, which happened to be “moving day”. Our office was renovated over the summer so we were moving back in from our temporary space in the library. I couldn’t have been more useless on moving day. As always, I’m fortunate to have such compassionate co-workers. Shout out to Doug Hillis for moving my boxes for me. I was able to slowly but surely get unpacked and I am so thrilled with the new space. The office layout will be a little different to get acclimated to but my actual office looks phenomenal.

The pain has subsided over the past few days and luckily I can say it’s no longer sore. At chemo yesterday, Rosa removed the big bandage and revealed that it’s healing nicely. We were able to use the port with no issues for my Taxol infusion.

New Port…not Newport.

Final notes-

Thanks to Stacey for the chemo visit (I owe you a better hang out…Eskimo King stat). Double thanks to my parents for the post-chemo surprise visit yesterday!

Anyway, it’s a decent hour and I need to get ready for work.

Happy Friday!

Eat, Work, Chemo

Knock on wood…

I’ve managed to stay out of the hospital for over two weeks now.

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Let’s let that one sink in for a minute.

I’m grateful for every second that I can live my life on the outside. We take slow, incremental steps to reestablish a sense of normalcy. It’s not easy…but it’s lightyears better than where I was just weeks ago.

1.) Going back to work

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Although have been working remotely throughout medical leave on projects, reports, etc. I’ve been transitioning back to the office little by little since mid-July. Part in person/part telecommuting. The nature of summer in undergraduate advising (after orientation of course) involves some sparse phone appointments but mostly administrative work to gear up for the next academic year. Degree audits to make sure your rising seniors are on track for graduation (and to light a small forest fire under the ones that aren’t), adjusting freshmen schedules to account for their AP/transfer credits, finalizing study abroad course contracts, prerequisite reports, and general ‘i’ dotting and ‘t’ crossing. It’s pretty low-key stuff but keeps me busy and isn’t terribly draining. That said, my return is well timed.

The fall semester is full on. Two straight weeks of walk-in’s during the add/drop period, classroom presentations and workshops, probation meetings, study abroad advising, registration advising, collaboration with other departments on projects/events and “other duties as assigned”. Student contact is high and this is where more of the student development piece (my favorite piece) comes in. It can be intense, but it’s truly the part I love the most.

Part of living with chronic illness is having to make tough choices about your limitations. As someone who fiercely cares about the work I do, I don’t like “scaling back” or not taking advantage of opportunities to grow in my role. One tough choice came recently when I decided to take a step back from a teaching opportunity in the fall. To be clear, no one at work made me feel as if I had to do this. I’ve gotten nothing but support to take on this additional role. I just knew that in light of this summer from hell, I didn’t want to put my students or the rest of the staff in a tough position if these secondary health issues were to persist. It’s just not fair to anyone.

For now I’m going to keep focusing on my advising role, partnership with the Honors Program, and advising the Colleges Against Cancer club. That keeps me plenty busy.

2.) Om nom noms (…eating)

Reteaching your body anything that is supposed to come naturally is nothing but frustrating. When you’re a baby learning how to eat solids you aren’t worried about the capacity of your stomach or if/how certain foods will digest. Babies eat, poop, occasionally throw up, and move on quickly into hysterical laughter when someone blows a raspberry on their belly.

When I say relearning how to eat, in this case, I don’t mean relearning how to chew or swallow. I’m referring to my atrophied stomach slowly growing to increase food intake and the intestines absorbing nutrients and passing the food without obstruction. It is easy to get in your own head and stress yourself out. There is a sense of urgency to gain weight because I’m super underweight but you also walk a fine line of taking in calories but not so much that you exceed the (very small) capacity of the stomach.

I have been off of TPN for just over a week now and luckily, I didn’t lose weight. I thought that my dietitian would be concerned that I didn’t gain this week because she really hammered home the importance of a 1400 calorie per day diet. Knowing that I didn’t even come remotely close to 1400 calories per day or even 1000 for that matter, I put myself in a tizzy and shed some involuntary tears when she asked how the week went. She was incredibly encouraging and reminded me that this is a process and that I have a lot to be proud of. Getting off of TPN and not losing more weight, actually digesting the food I can take in, eating at a restaurant, are all victories. I felt a huge weight lifted after that conversation.

So things I’ve mostly been taking in that have agreed with me: Stonyfield whole milk baby yogurt, blended fruit/vegetable pouches (yes also for babies), smoothies, cottage cheese, rice cereals, milk (cow or coconut), soft fruits without skin or seeds, very soft cooked vegetables without skin or seeds, bagels, grilled chicken, rice, noodle dishes (lo mein, pad thai), hummus, pita chips, soups, ice cream…

Oh and I was able to eat half of an insanely good reuben (sans saurkraut) the other day. I was in love and proud of myself for keeping it down.

I am fortunate to have a damn good cook in the house so it’s nice to enjoy Cory’s creations as tolerated in small portions. This week I actually ate a small helping of braised short ribs, crispy polenta, and mushrooms:

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Not bad for an architectural lighting salesman, eh?

I’m sure most people could house the above meal in two bites but that’s just about how much my stomach can take right now. It was perfect. I look forward to my stomach normalizing even more to take advantage of Cory’s natural culinary talents.

3.) Getting rid of the PICC

The PICC line was supposed to come out yesterday and I was supposed to have the new port placed this coming Tuesday BUT a scheduling miscommunication has pushed both back. I won’t have the port placed until August 15th which means I need the PICC for another week to receive chemo.

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I was disappointed but in the grand scheme of things, living with a PICC line for one more week is nothing in comparison to anything else I’ve had to do this summer.


So that’s it for now. I have a big weekend lined up with both Cory’s parents and my parents coming to visit. Should be a lot of fun to get everyone together 🙂 It’ll be good to see family after having a slightly emotionally challenging week.

Perhaps next week will turn around as flawlessly as Meyhem Lauren.

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Six Days Strong

Almost a week has passed since I was released from the hospital for the most recent bacterial infection. I can’t believe I even need to qualify that with “most recent” as if it is totally normal to go into septic shock then a few weeks later acquire two other infections. I don’t know if I should be terrified that this has happened on top of the other ailments or super impressed that despite it all I’m back home doing relatively well. In any case, I digress…

The point is, I’m home and all things considered I’ve had a pretty decent week. I was fortunate to not have to go home on continued antibiotics this time. I actually had a chance to slowly start to feel human at home without added intensive medications.

On Thursday it was back to chemotherapy. Prior to chemo I had a check up with Dr. Robison and it held some promise!

I had expressed that I was very ready to be finished with TPN. Due to the fats/lipids/dextrose in TPN, it isn’t hard to unknowingly create a little petrie dish in your port/PICC that bacteria thrives on. It just worries me to continue putting myself at risk for infection if we continue. I understand that TPN was necessary, especially given the issues I had with intestinal obstruction, but I’m at a point where my guts are improving and I’m ready to try to nourish myself the good old fashioned way…

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Now-

I was expecting my request to be met with some resistance since:

1.) I have easily lost 10 lbs since all of this nonsense began in May (at a point where I was already under weight)

2.) TPN provides nutrients that I cannot fully get by mouth while I work on slowly increasing calorie intake

Dr. Robison was in agreement that if I felt ready, tapering off of TPN would be our next move. That said, TPN has been reduced by 50% this week which means that I only need to infuse TPN every other day.

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I’m certainly not able to house over 1000 calories at this point (or anywhere close to that) but a small victory is that I have had a few small meals each day and without nausea or vomiting. This is a massive deal. In fact, I haven’t even needed to take nausea medication since Thursday when I had chemo. WIN.

Assuming the remainder of the week is equally successful, no TPN would mean no further need for the PICC line. That could potentially come out in the next week or two. That also means that a new port would be placed in my chest in the next 2-3 weeks.

Again, all of this is dependent on continued progress of eating by mouth and keeping it down. Let’s hope this vessel is up for the challenge.


On a final and unrelated note, many have asked me how I’m settling into my new home. It has been great! That is, when I’m actually home and not living at the hospital…

It’s a comfortable, cozy place to melt into when I’m feeling my worst and a cute beach community when I’m feeling human enough to venture out. One of those rare “feeling human” nights happened last night so we decided to capitalize on it with a beach picnic just minutes from our house.

 

Cheers to many more beach picnics, feeling like summer is actually happening, and for the love of all that is holy- STAYING OUT OF THE HOSPITAL.

 

The Waiting Game

I’ve decided that anytime a patient is admitted to the hospital for a bacterial infection, their room should be equipped with a speaker that plays the Jeopardy theme song on a loop. Why is that? Because your treatment and ability to go home is dependent on what is growing (or not growing) in the lab. Even when the bacteria presents itself in the sample, it can take a few days for it to develop into something identifiable.

As of right now we don’t know if the bacteria is the same as last time (which is probably the case) or a different type. Type dictates the kind of antibiotic and that dictates the plan for sending you home.

So for now I’m on antibiotics that have the greatest likelihood of knocking out what they suspect it is. My good friend vancomycin…ugh.

Yesterday was a rough one physically as I was a pukey miserable mess. My poor parents and I were downstairs in the lobby at Au Bon Pain (field trip!) when I knew my stomach was about to hit the reverse switch. Even with an injured rotator cuff my mom was quick to her feet and wheeled me toward the bathroom to this little alcove where I could vomit without a million eyes on me. If I actually had hair to hold back, I’m sure she would have done that too. Thanks Mom 🙂 There was a lot of that yesterday and it took a great deal of energy out of me.

Later that day…

In an effort to be proactive I was rolled over to Rhode Island Hospital and my port was removed in the operating room. Typically ports can be taken out in a doctor’s office or hospital bedside but mine has been in there so long with so much tissue grown around it, Dr. Robison didn’t want to torture me.

While I was in the OR they also ultimately decided to put in the PICC line that we had discussed. Initially I was freaked out by the idea of a central line in my arm. Now that I have it, it really doesn’t bother me. I can’t feel it and I still have full use of my arm.

What makes it different from the port that I had is that we won’t have to keep “accessing it” or putting in a needle to use it. It’s a “double lumen” meaning there are two little catheters that hang down. They can be used to draw blood, administer medication, chemo, TPN, etc.

The procedure itself wasn’t terrible. I was awake for it but they gave me drugs so I wouldn’t feel it. They also utilized a cloth near my head to shield me from seeing the procedures. The worst of it was when they injected the site in my chest to numb it. After a huge involuntary yelp they gave me stronger pain medication and the rest was smooth sailing.

So here’s the PICC-

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It’s also covered by this stretchy sock thing so:

1.) I can tuck in the little catheters when they aren’t hooked up so they don’t catch on anything

2.) No one has to see it. I bet there are some cute PICC line covers out there. Hmmm…making a mental note to look on Etsy later.

Overall the PICC line is a good alternative to the port for now. The only downside is that a PICC line’s lifespan is not as long as a port so this is a short term solution. Eventually we plan to place a new port in my chest.

In other news, I’m in slightly better spirits today. My anger has started to subside into acceptance.

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I want nothing more than to feel good and be home but I know I just need to keep my mind busy, buckle down, and move with the process.

Before I sign off here to do another rousing round of sudoku, I want to thank everyone from the bottom of my heart for continuing to make this journey with me. I have been on the receiving end of immense kindness from people that I have met in all stages of my life (and even some people I haven’t met!). Your love and encouragement helps me to lift myself up and dust myself off during each of these set backs. Thanks again ❤

 

I should just pay rent to the hospital

Tuesday was a gorgeous day. I was working from home in the backyard under the patio umbrella. As my creative juices were flowing in front of my lap top I got a chill. More than a chill really, it felt like winter inside of my body. I chalked it up to sitting in the shade and threw on a sweatshirt. Finally I couldn’t take it and moved into the warm embrace of the sun. I let it soak into the fibers of my sweatshirt like a little oven. Eventually I just went inside and piled myself under blankets. A couple hours later I felt feverish so I took my temp. YUP…104 temperature. CRAP.

I knew what my fate was. I would have no choice but to check into Hotel de Women and Infants pretty much kicking and screaming.

Cory drove and stayed with me in the emergency room. Around 11pm I was admitted and moved to a room on the oncology floor. Prior to that they did a chest x-ray and drew more blood cultures. The end result is that I have another/still have the same (?) blood infection. I am neutropenic at the moment which means that I am low on white blood cells that would normally fight against bacteria and infection. This is common in cancer patients undergoing chemo. Our immune systems are just shot.

That said, if you are sick or even suspect you have a cold- GET THE HELL AWAY FROM ME.

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This is currently on my hospital door with a box of super attractive bird flu masks

So I’m not going to dissect every  detail of my time here so far because it’s exhausting. Here are the cliff notes:

  • I will most definitely be here for a few days 😦
  • My port just stopped working yesterday. Can’t flush it, can’t get a blood return. Nothing. That said I’ve had to have a couple peripheral lines put it (like normal IV’s) and that sucks a lot. I’ve had more needles jammed into me in the last 48 hours than I can count.
  • Since my port was infected previously my doctors are erring on the side of caution and having it removed. It will happen sometime today but we’re at the mercy of whenever Rhode Island Hospital can do it so until then I must fast.
  • They have two interventions to give me a boost and make me a little stronger. First it an injection to bump up my white blood cells. The other I am having as we speak and that is a blood transfusion. My hemoglobin was low so that should help too.
  • Again, no port = tubes hanging from each arm uncomfortably. I’ve never missed my port more. I’m not afraid of needles but I certainly do not enjoy getting stuck with them multiple times a day.

    With all this tubing hanging from my arms I’m tempted to recreate the fake party scene from Home Alone:

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  • No chemo this week so we can deal with the infection first
  • Once the infection is gone they will be putting in a temporary PICC line (Peripherally Inserted Central Catheter).  Eventually they will come out they will place a new port like the one I have now. Anyway, the PICC looks like this (photo cred: Happy Colon):

 

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So those are the facts, here are the feels:

My initial reaction was anger. I’m actually still pretty angry which isn’t my typical response to something like this. I have just had so many hurdles thrown my way in such  a short period of time, it’s exhausting. You are just always playing catch up to feel well. When will the day come that I can do that? If the last few months is any indicator it’s going to be an even longer road than I imagined.

I explained my frustration in these terms to a social worker on the floor. Most everything I do now has an asterisk next to it-

  • I can go back to work but I can only be physically there 4 days a week
  • I can take a shower but I have to spend 10 minutes taping a plastic bag over my port needle to keep it dry. (and DEFINITELY no swimming)
  • I can go to that barbecue but I can’t eat any of the food there

You get the point, everything is conditional- at least for right now.

I get complimented often on my positive attitude which I sincerely appreciate. It’s still in there somewhere! I’m just salty at the moment. For now I need to honor and acknowledge the pain/anger/frustration because those feelings are authentic and part of the process.

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Don’t worry George, it’s not the summer of Jess either.

Maybe there will be an autumn of Jess? Hope so.