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
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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.

 

 

Ups & downs of an antibiotic overkill

First of all happy almost Independence Day party people. I hope there is abundant BBQ, fireworks, and minimal fits of rage over finding parking in your near future.

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Okay, now that you’re all jacked up on the thought of pasta salad and 500 pictures of barely visible fireworks on Facebook- I should probably get the meat of this update.

Spoiler alert: it’s a long one…but there’s a bunch of pictures so that’s okay, right?

After returning home from visit #2938409234 to the hospital for my last blood infection I was feeling grateful to be in my own space (and still am) but the week proved to be more difficult than I had imagined. When I left the hospital I thought “oh give myself antibiotics for eight more days? That’s nothing!”

Ehhh…it wasn’t nothing.

The process of administering these drugs into my port was easy to do, but it tacked on couple extra minutes in the morning and at night. I guess it just became a little thorn in my side because the process of setting up and unhooking TPN infusions is more involved so adding anything else is just annoying. Especially so when it is imperative that you use a new alcohol swab for 30 seconds between every step in the process. BUT avoiding infection is paramount so it helps no one to cut corners when sterilizing.

(FUN FACT: To anyone that has to do TPN or home infusions themselves, a fun trick that I was taught to know that you’ve swabbed enough is to hum the jeopardy song twice.)

Over time, not only did I feel run down but the antibiotics wrecked havoc on me. I experienced tremendous muscle aches, especially in my lower back which made it nearly impossible to get comfortable anywhere, even in bed (this is actually a listed side effect of Daptomycin).

Nausea, ooph. Despite my best efforts to control it with Zofran and Phenergan, I experienced waves of nausea and would vomit about 1-3 times a day. I need not go into more detail about what it did to my tummy so we’ll just say “not pleasant” and leave it there. Unfortunately, it virtually wiped out most of the progress I had made with eating. I still try but I often can’t get more than two bites down before they decide to come back up. My doctor’s (hopeful) goal is to get me off of TPN in the next 3 weeks or so. I feel like I’m starting at square one with eating but I am determined to be able to eat enough calories to no longer have to rely on TPN for nutrition and weight gain.

Beyond the expected side effects my abdomen has felt quite distended which is never comfortable. I’d normally jump to being nervous about another obstruction but despite being distended my belly is soft, I’m passing gas, and have “good bowel sounds” (noise in all four quadrants). So that’s promising. I can only guess that being off of chemo for two weeks has perhaps created some fluid or something pressing against my organs. I don’t know I’m not a doctor.

All I know is that I can’t escape my own body and the discomfort and fear that comes with it. Ask anyone with cancer and they will tell you that anything in the body that feels “just off” without explanation brings about a tremendous amount of stress.

Everything considered, I’ve felt pretty down this week. I have; however, done a better job of reaching out to some friends, family, and Cory to talk and let it out. I have a tendency to sit stoically alone with my thoughts until they bubble over. I found a lot of comfort this week and that has definitely helped to pick me back up and dust me off. Even Dr. Robison and I had a life talk and cried together during my last visit. (SIDENOTE FOR ANYONE LOOKING FOR THE RIGHT ONCOLOGIST: Find a human being that treats you like a human being and asks about your emotional wellbeing unprovoked. It goes a LONG way)

Bottom line, when you don’t feel well it sucks. When you don’t feel well for 3 1/2 years it sucks a lot more and eventually you feel like you’re running out of steam. I know that there were will another upswing in my future but the last few months of hit after hit have really knocked me down.

Heaven knows I need to be in a strong headspace because chemo started again yesterday. A funfilled SIX hour infusion. Normally Carboplatin and Taxol wouldn’t take that long but because I’ve had platinum based chemo in the past “your body remembers” and there is a greater likelihood of having an allergic reaction. Because of that they dripped the Carbo alone over a three hour span. Poor Cory. We ended up missing his annual work pool party because we didn’t expect the infusion to last that long. As always, he was great and stayed with me without complaint.

The next two weeks of chemo will be a breeze in comparison. Just taxol so I should be in and out of there in about 2-2 1/2 hours. Cake.

I really don’t want to end on any more Debbie Downer notes. I think it’s important to be honest when things are not okay and recently, they haven’t been great. It’s also important to highlight the moments when you’re able to get your head above water briefly and fill your heart with something that takes you outside of the looming, intrusive, thoughts of cancer.

My situation can improve and below are glimmers of proof:

 

Things that were pretty awesome this week:

1.) Last minute free tickets to see Andrew McMahon in the Wilderness

I spent that entire day in bed that day so when I received a text saying we got on the guest list for my favorite band that night it took a giant pep-talk to myself to get out of bed and do something I know would fill my heart with joy. Granted, it was general admission and I had to lug the 10lb TPN bag on my back but despite being really tired I made it through and was SO happy I went. There is something so uplifting about Andrew’s music and the fact that he crowd surfed on a giant inflatable rubber ducky.

Oh and how fitting, he played ‘Swim’ the song he wrote about his own cancer struggle that simultaneously empowers me and makes me cry every time. Hence Cory, Sheila and I huddled together in the bottom right photo.

2.) Charlie Ruth!

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Auntie Jess got a visit from Katie and my little gummy bear. Hanging out with Katie is always the best but this is now amplified with squishy, sleepy, baby snuggles.

3.) Savoy Books

On a day I was feeling somewhat  okay (not clinging to the couch or porcelain throne at least) I ventured downtown to my new favorite happy place, Savoy Books. The store is two stories, floor to ceiling, of every genre imaginable. It has a small cafe and it’s warm, cozy, and just feels so welcoming. It’s a perfect place for when you’re not feeling well- quiet, air conditioned, and calm.

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I took my time there and read about 45 pages of the book I ultimately purchased: I’m just a person by Tig Notaro. Tig is a well known comedian and really gained notoriety when she got on stage for a set and announced in her opening line that she had cancer (mere days of learning of her diagnosis). The recording of that set went on to be grammy nominated.

I feel like Tig and I are living semi parallel lives (in some respects). She was plagued by a serious bacterial infection that almost killed her, diagnosed with cancer, and faced horribly tragedy all in the same year (2012). Sometimes I read her words and think, SHIT did I write that? Get out of my head Tig!

Here is a perfect depiction of the struggle of re-training your body to eat:

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Spot on Tig, spot on.

4.) Thunderstorms

I don’t have a picture but last night after an exhausting day Cory and I set up lawn chairs in our garage and decompressed while watching the pink lightning ignite the sky and take in the sounds of the rain and booming thunder as it neared closer. There is something oddly comforting to me about a thunderstorm so it was the perfect way to end our shit-sandwich of a day.

So that’s all for now. Updates will surely come and I hope that future posts will include more “I’m feeling good”, “I’m eating”, kind of stuff. For now, this is reality.

Chin up.

Because nothing is easy

Because nothing is easy, my “wimpy” little bacterial infection actually landed me in the hospital for eight days and seven nights. My last entry was a week ago and that day I was SURE that I was going to be discharged the next day but because it’s me, I had to complicate things a bit.

A few factors that delayed discharge:

Vancomycin  (vanco) gave a mild skin reaction. Due to that the doctors had to play around with the rate in which it was administered and the dosage. With this drug you also need to draw blood just prior to the next dose to see exactly how much vanco is in you. It can’t be too much to too little. Pretty much every blood draw I had except for the last missed the mark on either end. In short there was a lot of tweaking that had to go on before they could send me home with the drug.

-Daptomycin (Dapto) is a much better antibiotic that can be used as a second line treatment if vanco is not working or an allergy exists. Switching to this drug took a few days because your blood cultures need to be sent to a lab with a sample of Dapto and they watch it to see if the bacteria is sensitive to the drug. The results took 48 hours to yield but luckily it came back in my favor and we could make the switch. With Dapto, I was required to do one infusion in the hospital to monitor me for any reaction. We did that yesterday and after that I was cleared to go home. I didn’t even think it was real that I was going home (this is how jaded I have become in regard to my own health).

-My port appears to be the source of the infection which means that we had to be aggressive and consistent with antibiotic that would flow through the central line. The goal is to save the port. I will have blood cultures again in a week and if the sample from the port is still coming up positive for bacteria then the port may need to be removed and replaced. I am very much hoping this isn’t the case and honestly don’t think it will be.

Right now I feel okay but not as well as I felt last week before going to the hospital. A week of antibiotics, antihistamines, and other necessary medications can kind of knock you down a little. The antibiotics have torn up my stomach so I’m slowly getting my appetite back. I do have TPN at home that I have returned to so at least I’ll get the appropriate calories and nutrients while I build up my food by mouth. In short I’m just really fatigued.

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That said, I’m grateful for the care I received at WIH. From the ER to 4East I was in the hands of people who know me, provide the best care, and care greatly about the work that they do. Despite how much longer I was inpatient than anticipated, we could find comfort through frustration that everyone was working as hard as they could to find a solution to the various challenges that arose.

Thank you as always to my parents and Cory who made many a long drive to be with me in Providence and help me keep my head on straight.

So I’m home now. Again, writing this from my back yard with the chirping birds and the abundant garden.  Thank goodness.

From here on out the plan is-

1.) Administer IV antibiotics through my port at home from now until June 30th

2.) Continue TPN until further notice

3.) Start chemo again June 30th after a check up with Dr. Robison. That day I will receive Taxol and Carboplatin in the infusion center in Providence as I would normally.

and most importantly…

4.) STAY OUT OF THE DAMN HOSPITAL!

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Another speed bump

“You look SO much better than the last time I saw you!” is something that is encouraging to hear after a string of hospitalizations.

Except, I think you lose points when someone says it…in the emergency room…as you’re admitted for yet another medical issue.

On Monday I had chills and a mild fever (101.6) so I went to the ER at Westerly Hospital. In active treatment you are advised to come in if you experience a fever over 100.4.

Now I must pause the story to say that after being so used to a women’s hospital full of oncology patients and expectant mothers, it was especially jarring to overhear an intake person say: “Sir! SIR! ARE YOUR FINGERS STILL ATTACHED?”

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Anyway…

They did some blood tests and took a chest xray. They chalked it up to a virus and were able to send me home a few hours later.

Tuesday I woke up with a fever of 100.4 but I felt fine otherwise. Tylenol brought the temperature back down to normal and I carried on with my day. It was a great day, really. The visiting nurse took my vitals and blood pressure was great, no fever. Sheila also came over and I made scrambled eggs. That’s right MY FIRST SOLID FOOD IN WEEKS.

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Yep, that’s the face of a happy girl eating real food. It’s also the face of someone that was not expecting a phone call hours later from Westerly Hospital notifying me that they found bacteria in my blood and I needed to come back to the emergency room.

The bacteria was identified in the blood cultures. Labs watch blood cultures over 5 days to see if bacteria grows. In my case it had in 4/4 viles which made it evident that it was a real infection and not just a contaminant.

It was made clear to me that I should expect to stay overnight. Knowing that I ultimately decided to make the slightly longer trip to Women and Infants and be treated there. Cory drove up with me and stayed with me in the ER until almost midnight when they confirmed I’d be admitted. He also drove about 200 miles that day for work so he’s a real trooper.

So since Tuesday night, I’ve been here receiving IV antibiotic. By Wednesday the type of bacteria was identified and apparently its a common bacteria found on everyone’s skin. They are guessing it got in through my accessed port. Luckily it was described to me as “wimpy” by the infectious disease doctor.

Once identified I was switched to an antibiotic called vancomycin. I’m tolerating it pretty well but I did have a pseudo-reaction during the last two infusions where my face and chest became red and warm.

Fun fact- the medical name for that kind of reaction is ‘Red Man Syndrome’. Here’s to hoping that ‘Method Man Syndrome’ is a real thing too.

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Hopefully, I can go home tomorrow. My fingers are crossed. Since I’ve been here I haven’t had a fever or anything. That said as a precaution no chemo this week.

All in all in good spirits but definitely want to get home and get better. I’m confident that I’ll bounce back soon.

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).

 

Clamp Test

As my dear friend Lisa reminded me, we can now add Memorial Day to the running list of holidays spent in the hospital. I’d make some sort of joke listing the remaining holidays and getting BINGO but it is not necessary to further jinx myself. (Hands off my Arbor day cancer!)

On a more honest note, the general positive disposition I’ve had toward the medical hurdles over the years has been seriously challenged. I’ve spent twenty-one nights since the beginning of May in a hospital bed, missing home, feeling as if any semblance of ‘normal’ has slipped through my fingers. The days are long and every second that ticks by in this hospital breeds ruminating, fearful, unecessary thoughts. Thoughts that make me sometimes doubt that I’ll ever get back to the happy, eating, working, socializing person I once was. Over the last eight days especially, I’ve felt pretty raw.

It’s not that I think that cancer is getting out of control. I’m back on chemo and I really believe that it will help the situation with my intestines. The fear (granted possibly irrational) is that despite our best efforts, my intestines just won’t work properly. Further measures if this NG tube/bowel rest effort didn’t work would potentially mean a g-tube in my stomach or colostomy bag. Though I’m sure many people live great lives with a g-tube or colostomy, I just can’t come to terms with that as my reality. We definitely are not there yet, but it has been mentioned as a worst case scenario and that frightens me.

It has taken daily pep talks and encouragement from a wide variety of people to push through to that next day and maintain a shred of optimism that this is still just a giant speed bump and not a dead end.

I did have a win today though! So the NG tube has been in for just over a week now. Today was the day that we would test the waters and see how my intestines do without the tube clamped. This is called a clamp trial because the “hose” stays in me but it’s disconnected from the vacuum type unit that sucks out the liquid. The first test was going from 10am-2pm without nausea, which I was able to do. At 2pm they reconnected me to the “vacuum” and measured the output. The output ended up being about 50 ml which is great (they are looking for < 100 ml). As I write this I am on clamp trial #2 where I need to go 6pm under the same conditions.

Generally the goal is for my intestines to act independently and eventually be able to handle solid food. It is going to be a long road but I am praying with every fiber of my being that they get back to where they need to be. Hopefully I make it through the night clamped without any issues.

So physically, emotionally, that’s where I am.

On a bit of a different note-

 

I need to take a moment to thank everyone involved in making sure my move from Providence to Pawcatuck, CT went off without a hitch. While I sat in my hospital bed, my parents, Cory, and countless friends tirelessly packed my entire apartment and moved it to our house (that I cannot wait to start living in with Cory as soon as I’m out of here!). Mom, Dad, Cory, Rob, Phyllis, Sheila, Katie, Bobby, Sarah, Beth, Brendan, Emily, Jo, Kyle, Andy, Ashley, Erin…jeez I hope I didn’t miss anyone… you have no idea how how much your thoughtfulness on a humid Saturday lifted a giant weight off of my shoulders. THANK YOU. I cannot wait to welcome you back when I am well and can truly call this house my home.

Thank you to all that have sent flowers, gifts, texts, cards, encouraging facebook posts, silly memes. Thanks to those that have visited and especially to those that have caught me “in a moment” and snuggled me in my hospital bed. Please know that it has really helped to get me through the day.

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Finally, to the dedicated nurses, docs, case managers, social workers, CNA’s, etc. at Women and Infant’s Hospital. There is special karmic goodness coming your way for all of the kindness and comfort you bring on a daily basis. Thank you.