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!

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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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Notorious O.V.A.R.Y. in Action

September has great energy. A new academic year begins, the seasons start to change, and one of my favorite annual events takes place- the Silent No More 5k to benefit the Rhode Island Ovarian Cancer Alliance.

I am pleased to share that with the support of family, friends, and friends of friends, team Notorious O.V.A.R.Y. raised $2890 (exceeding my goal of $2000). As a whole, this event raised over $32,000 with donations still rolling in!

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I’ll chat more about the walk in a minute. For as many times as I’ve had to write about being in the hospital, needles, pills, NG tubes, and general unpleasantness, it’s important to highlight when life is just normal. That includes visits with friends, good meals, professional growth…pretty much any moment that is not spent clinging to life on my couch. So weekend recap- commence!

The weekend began with a visit from two of my childhood best friends, Stacey and Michelle. Our time together was filled with good food, a carnival on the beach, hot tubbing in the back yard, and several moments where I laughed so hard that I almost cried.

At the carnival we may or may not have shamelessly ridden a kiddie coaster and the “bear affair”. I’m guessing three 28 year olds are not the target demographic for these rides but hey, if we fits, we sits.

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Living in three different states and starting the majority of my weekends with chemo makes it difficult for the three of us to be together at the same time very often. That said, my heart was very full this weekend with these goons.

In the midst of their visit I did have to work on Saturday to facilitate a training for the MyPath mentors. The mentors are (mostly) juniors and seniors that serve as resources for students that are exploratory. Exploratory meaning, undecided about a major/career path, questioning their path, etc. It’s a fantastic program made better by these incredibly motivated student leaders. Despite falling on an already busy weekend and me running it for the first time I was very pleased. The mentors blew me away with their insight, discussion, and willingness to share their personal experiences. I’m looking forward to the upcoming year with this program.

My ability to be at this training without stressing over leaving my transportation-less guests home was made possible by Cory continuing to be the best human. He cleaned, made sure Michelle was caffeinated (super important), and picked up Stacey at the train station without complaint. What a gem, right?

Our weekend wrapped up with the Silent No More 5k to benefit Rhode Island women touched by ovarian cancer. To give you a little background on the name of the walk, one of the most grim nicknames of this disease is “the silent killer” because it’s symptoms (bloating, feeling full quickly, GI issues) can mirror a massive number of other, more minor, ailments. That said, many women are not diagnosed until later stages when the disease has spread from the ovary to other parts of the body. Being “silent no more” flips the script on that ugly nickname because as a small cancer community we are educating women on how to listen to their bodies and spreading the word. The more preventative we can be, the more women will thrive in the face of this disease.

Speaking of thriving, there were FORTY survivors at the walk this year. That is incredible. That means forty women that are either still kicking some OC keister or in remission. That is forty more women that are defying the odds, blowing up the statistics, and truly thriving.

It was nice to see familiar faces from previous years and exchange big hugs. The Rhode Island OC community is truly full of kind and remarkable people. I wouldn’t wish this disease on anyone, but I’m glad that it brought us together. (Shout out fellow cancer crusher, Dorinda for my new favorite bracelet!)

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I was lucky to round up a great team to come together as Notorious O.V.A.R.Y. (team name credit to Sarah Breen). Thank you Mom, Dad (Peepaw), Cory, Stacey, Michelle, Sarah, Zack, Kerri, Monica, Robin, Becca, Maddie, Joseph, Austen, and Ginger for waking up early, going full on teal, and braving the humidity for this cause. It meant the world to have you there.

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Congrats to Donna Ricci (President), John Morris (Vice President), and the rest of the RIOCA board members on another successful year. So many bear hugs, so little time! Jessie was most definitely proudly smiling down on you today through the sunshine.

Before I wrap up, I have a minor health update but it’s nothing exciting. One of the small incisions from the port placement wasn’t healing quite right and became infected so I completed one course of antibiotics. Unfortunately it still isn’t better so they have extended antibiotics for another two full weeks. So far they aren’t wreaking havoc on my life like the mega-antibiotics I had to take over the summer. On Friday, they drew blood cultures from my port just to rule out another infection in the port but they’re pretty sure that the infection is superficial.

CA-125 will be drawn this week, I see Dr. Robison for a check up on Thursday, “big” chemo on Friday. I’m not banking on a great CA-125 considering this infection business but here’s to hopin’.

Now that I have survived and chronicled such an eventful weekend, I’m going to plop down on the sofa, watch the Packers (hopefully) crush the Vikings (sorry Larz Barz), and restore my energy for work tomorrow.

 

 

 

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!

The gift of momentary inner peace

Yesterday after chemo, I officially had no use for the PICC line and it was pulled from my arm. It didn’t hurt, actually, it felt like a long piece of wet spaghetti slide out from under my skin. Within seconds I was free. Free from the tubes, the daily saline and heparin flushes, the sickening smell of alcohol wipes. My arm could just be my arm and a shower no longer had to involve a sandwich bag and medical tape.

After work today I was fortunate to have one of those crystal moments of clarity where nothing serious mattered. There was no fear, no countdowns until something unpleasant ends, and thankfully no overwhelming nausea or exhaustion. I mean, all of those things exist steadily in my life, sure, but they were out of my head at least momentarily because yesterday’s PICC pull was symbolic. It was freedom.

With my new found “freedom”, I stopped home briefly, threw on a bathing suit and charged to the beach. The 80 plus degree weather at 6pm was certainly a gift as I was determined to get in the water. The waves were huge and crashed around me. The water was chilly but not biting, typical Atlantic in August. I eventually just sat down where the waves calmed and met the sand and let the water wash over me. I soaked in the smell of the ocean, let drifting seaweed cover my lap, and watched the searats sea gulls scavenge.

To put it not-so eloquently- I was happier than a pig in shit.

(This also resulted in about 3 lbs of sand in my bathing suit bottom when I got home soooo, souvenier?)

Now you may be asking yourselves, Jessica- why are you going to such great lengths to describe an incredibly average evening at the beach? Well friends, because I was denied a true summer. The powers that be filled this summer with hospitals and limitations. In short, more days than not were a total suckfest. I say this not necessarily to dwell on the nightmare that was but to highlight a single evening that brought pure, natural joy.

Tomorrow or the next day I’ll worry again. I’ll drag my feet to the hospital on Monday to add to the collection of scars for another port placement. I’ll begrudgingly sit through another chemo infusion on Thursday. I’ll take things for granted. I’ll continue to yell expletives through closed windows on the highway at oblivious fellow motorists… We’re only human right?

But for tonight tonight, I was cut a break. Nothing in the world stopped me digging my swollen ass feet into the sand, cracking the binding of a new book, and drowning out the world as the waves collided.

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Thank you universe for this taste of summer and utter peace.

 


I dig my toes into the sand. The ocean looks like a thousand diamonds strewn across a blue blanket. I lean against the wind, pretend that I am weightless and in this moment I am happy
-Incubus

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.

 

There’s no place like home (even if you’ve only seen it once before)

We are approaching one week since I have been discharged from the hospital. This is (sadly) shattering my record from the past month of yo-yo hospitalizations.

Initially, I thought it would be uncomfortable leaving the hospital and moving into the new place. I didn’t even say goodbye to my old apartment. Like magic, with the help of a lot of friend/elves, I was just moved. Luckily the new house is a great place to recover and slowly but surely Cory and I are making it into a home.

What a stress-free environment. It is this little house with a perfect back yard and a garden. There are constant sightings of vibrant cardinals, bees, and hummingbirds. This morning I took my yoga mat into the grass and did some makeshift gentle yoga/stretching to get my body moving (after a month of being nearly sedentary). A bright red cardinal was perched on the tree above me the entire time. I couldn’t possibly be more “one with nature” in this moment unless I transformed into Bear Grylls and was dumped out of a plane into the Amazon.

Overall, my experience home has been the right prescription emotionally. I love our little town, the house we’re renting is comfortable and coming together, and my roommate is pretty easy on the eyes ;).

Since I didn’t actually write about getting discharged, I’ll keep it brief and stick to the important bits. They took incredibly good care of me there and kept the NG tube in up until about 30 mins before I left to be as precautionary as possible. But at some point your guts are going to do what they’re going to do and Dr. Robison felt it was best to get one more round of chemo in the hospital then go home and be normal*.

*”Normal”- not to be confused with ACTUAL normal living, but operating in a way that makes you feel somewhat free and human. Let’s call it normal light.

Going home was the best gift and the correct decision at that point. Dr. Robison also knows me all too well and probably anticipated that I would try to go back to work too soon. Just like a surgery, the body needs time to heal and repair itself especially after the added trauma of septic shock. That said, until I’m medically cleared I will be home for a little while and fondly thinking of my friends at Bryant from afar.

Unlike other discharges from bowel obstructions I’ve had, this time I was sent home having not even advanced to clear liquids. The only thing by mouth that I had in the hospital were Dum Dum lollipops (thanks to Sheila and Shakay for supplying). No, this time we were going to to sllllooooowwwwwwwwww as molasses to prevent ending right back up in the ER yet again. For now I’m still on Total Parenteral Nutrition (TPN) where I receive all of the calories and nutrients I need for the day over a 12 hour period right into the blood stream through my port. I’ve been supplementing this with tiny amounts (2-4 oz.) of watermelon Italian ice to reintroduce something into my system by mouth but that’s it.

Starting tomorrow, with the blessings of Sheila/my case manager/dietician, I am going to try small amounts of blended soups (like butternut squash) and pureed foods. Stocking up on baby food basically. I was advised to listen to my body and slowly reintroduce foods into my diet working up to solids (low in insoluble fiber). I miss real food but we are getting there slowly.

You can imagine how brutal it is when Cory (a very talented cook) is making dinner for himself. I awkwardly ask him to let me smell it and pretty regularly shove my nose in the direction of his food to at least pretend like I know what it tastes like.

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But Cory isn’t the only wizard in the kitchen. Watch the TPN master prep tonight’s dinner (with the help of some “muscle” to spike the bag). I made this video to take some of the mystery out of what is actually sustaining me and how I manage it (and cranked up the speed 15x as to not kill you with boredom).

What you’re watching:

  • Sterilizing pretty much everything with alcohol wipes
  • Injecting the TPN bag with additional vitamins and Zantac
  • Having Cory spike the bag because it’s not easy. You really need to jam it in there.
  • Hooking up the tubing to the bag and pump and priming the tubing to push out any air in the line.
  • Sterilizing the end of my already accessed port (the little tube hanging from my chest) and flushing it with saline.
  • Connecting the primed line to the port tubing and starting the pump. It’s all pre-programed so all I need to do is sit back and let dinner run through my bloodstream for the next 12 hours.

What you don’t see: 

  • The big white bag stays refrigerated but needs to be left out for about 2 hours prior to use.
  • I washed my hands thoroughly before starting the process, promise.

 

So what’s next?

Chemotherapy continues on Thursday bright and early in Providence. This is a Taxol only week so it shouldn’t be too bad. Oh by the way we are back on the weekly chemo regimen- every Thursday now. No breaks, no week off, no chemocation. We can’t afford to not be aggressive after all of this hospital business.

Put on your game faces folks.

As always I will keep you posted with a progress report. Thanks for continuing to send warm thoughts and wishes for improved health 🙂

I hope everyone is enjoying this gorgeous June weather and since I cannot- please eat double at barbecues and have some sort of boozy frozen drink on my behalf. (nom nom nom, in spirit).

 

Chicken Broth for Breakfast

It’s about 8:30am and the doctors haven’t rounded yet. I feel like rounding usually takes place a lot earlier but maybe on Saturdays they get a later start? I don’t know, I’m usually pretty foggy in the hospital so I haven’t kept tabs on average rounding time in the past.

I’m especially anxious to see the doctors because they are the ones to decide whether or not I can graduate to a clear liquid diet. I didn’t have any pain since yesterday morning and my guts had “good bowel sounds” which is promising. If all goes well, clear breakfast would consist of some tea, juice, jello, and chicken broth. It’s the breakfast of champions and, in my head, a Michelin Star meal after not eating anything since Wednesday morning. My limited “breakfast” Wednesday didn’t even stay with me if you catch my drift so really I haven’t had a meal since Tuesday evening. Ooph.

It’s like food and I are playing this cat and mouse game. When I’m able to eat, I have no appetite. When my guts are on the fritz and I’m not allowed to eat I can think of anything more desirable. I tortured myself all day yesterday watching hours of the Food Network and scrolling through Instagram accounts of gooey grilled cheeses and waffles and the like.

This is pretty much the inner workings of my brain right now:

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****BREAKING NEWS****

Because this is being written in real time and I’m not going back to re-write the first half of this entry. Doctor’s have rounded and I’ve been cleared for clears! There were even talks of “something more substantial” and unhooking me from my IV later in the day if breakfast goes well.

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(Don’t worry, I’ll take it slow)

Hurray for progress. Pretty much as long as I continue not to throw up and my guts behave, I may forsee going home soon (not today), but soon 🙂

Thank you for the continued encouragement through this silly and frustrating hiccup ❤

Cinco de ‘laudid

It is nearly 3am and 4 East is quiet. My IV is slowly bringing me back to life as it compensates for the hydration I have lost over the past day and a half. My guts are finally at peace for now. The last push of Dialaudid has slowly helped them to settle and unclench.

No, this is not a flowery description of a recent memory. I’m in the hospital, AGAIN for the same issue- bowel obstruction. This means my small intestine is all kinked up and unhappy. To resolve, no food or drink by mouth (NPO), IV, and painkillers as needed to ease the pain and discomfort. Yet again we play the waiting game.

All I can say is that this is nothing short of frustrating having happened so recently. Especially because everything else has been going so well! I’ll admit when I saw my oncologist today I couldn’t hold back those tears of frustration. She gave me a reassuring hug and reminded me that I don’t need to feel strong and upbeat all the time. Sometimes our circumstances just plain suck. But just like the others, it is temporary and life will go on.

When I told Cory what was happening he didn’t even think twice. Hopped in his car from New Haven and drove straight here. As I write this he is curled up asleep next to me in a hospital room recliner that can’t possibly be comfortable. He’s been a trooper through beeping IV pumps and nurses and CNA’s in and out through the night to take vitals and administer meds. Boyfriend of the century award goes to Cory Tysoe for infinite patience, selflessness, support, humor, and good looks 😊

I’ll also look forward to seeing my parents tomorrow. I’ve been dealing with this particular obstruction since Wednesday afternoon so they have been wonderful coaches/cheerleaders over the phone.

Thanks to friends and family that have gone out of their way to lend support already. For what I lack in intestinal function, I make up for in incredible friendships.

That’s it for now, I’ll keep you posted as we make progress toward drinking/eating/returning home.