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.

 

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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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).