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!

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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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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.

 

 

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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