Eat, Work, Chemo

Knock on wood…

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

giphy

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

giphy1

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:

wp-1470089314967.jpg

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.

5

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.

giphy2

 

 

Advertisements

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.

emmastone1

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).

 

Go straight to ICU, do not collect $200

The past few days have been nothing short of a frightening whirlwind for both myself and my loved ones. It isn’t until now that I even feel that I’m in a place to talk about it.

My last post was pretty positive. When I last left you I was discharged from the hospital, home, and looking forward to settling into normalcy outside the sterile white walls of the fourth floor at Women and Infants. I had taken the next day off from work purposely to give myself time to regroup before heading back to the office.

It’s a good thing I stayed home because everything took a serious left turn quickly.

I woke up Monday morning with pain in my abdomen, the kind of pain that I’ve felt time and time again with a bowel obstruction. As the pain increased to maximum intensity I ended up driving to the ER and checking into triage. From triage to where we are at present is where events are a little hazy for me but my family has been kind enough to fill me in. It’s not like I was totally knocked out or anything. I just remember in segments, like a scrapbook where the pages are out of chronological order.

It turns out the the bowel obstruction wasn’t totally resolved so we had that to deal with. WIH was kind enough to send me over the Rhode Island Hospital to have an NG tube placed. The purpose of the NG tube is to suction out any stomach contents/acid so that your intestines can actually rest. This time it inserted under fluoroscopy so they could see the hose being guided down into my stomach. This was to avoid last week’s debacle where the hose coiled over my hernia and didn’t make it into the stomach. I was technically awake for this but as I’ve written before, it’s a pretty traumatic and unpleasant procedure. They loaded me up with medication to make it more tolerable. That said, I just remember going there and then waking up back at Women and Infants.

I wish I could say that my situation improved from there but this is where it got scary. In the middle of the night I went pale, spiked a fever, my heart rate sped up, and blood pressure plummeted. I was given a blood transfusion because my hemoglobin was too low. I don’t remember much about this part but I do remember my room just flooded with nurses and doctors. Although I didn’t know it at the time, I was in septic shock.

My understanding of septic shock is that it is a bacterial infection in the bloodstream. The cause of why I ended up with it is still unknown. They scanned me a few times to see if I had a bowel perforation but they were not able to detect any holes of the intestine. The doctors told me that it’s possible with all of the bowel obstructions, the walls of the intestine experience pressure and bacteria can get in. .

There were a few things that became challenging in the ICU. First there were a lot of “cooks in the kitchen”. There was hardly a moment where someone wasn’t in the room with us, examining, asking questions, administering medication, taking vitals. I didn’t sleep more than a few minutes at a time for three days. I felt delirious. We also didn’t have a source of the sepsis so periodically there would be a different doctor from a different team making a different suggestion. Everything from colonoscopies to stints to surgery. It got to the point where my family was like “you need to talk to our oncologist, period.” We weren’t about to do anything, especially invasive procedures, without Dr. Robison.

20160511_020657.jpg

So in a small nutshell that was my time in the ICU. It was scary and stressful and high pressure. My poor family. I was lucky to have my parents and Cory there right away. My brother Adam even flew out to be with us and slept in the chair next to me all night that first night in the ICU (although I use the term sleep loosely).

As of yesterday I was well enough to return to Women and Infants.Thank god. It’s so much quieter and calmer here. I have a nice room with a pretty view. A small silver lining within this big shitty mess.

I’m a lot more liberated today as I am not tethered to so much “stuff”. They took the catheter out, I’m not on oxygen anymore, and I’m no longer hooked up to the vitals monitor and blood pressure cuff. I do still have the “nose hose” and a second central line in my neck but I can move around more freely than before. I took a walk for the first time today down the hallway and was able to move about to the bathroom on my own. It was nice to have the scrap of freedom.

I have some goals for the next week:

1.) Improve/restore my lung capacity

2.) Get the nose hose out and eventually eat real food.

20160514_214009.jpg

TPN: Current breakfast, lunch, & dinner

3.) Take no less than 3 walks a day around the unit

4.) Hope to God I get discharged by Friday so that I can attend Saturday’s 2016 commencement at Bryant.This is the first class that I’ve advised all four years and many of these kids mean the absolute world to me. It would break my heart if I missed this day.

I’ll keep everyone posted as we continue to make progress. Thanks for sticking with me everyone ❤

20160514_215515.jpg

 

 

“You’re up for parole!”

“You’re up for parole!” my nurse exclaimed as she waived my discharge paperwork in the air. I was ready to twirl and prance out of that hospital room this afternoon when I found out that I could go home.

6oygadk

Yesterday wasn’t too bad, just long and monotonous. I was thrilled when I got my first tray of clears after just being on an IV for a few days. The honeymoon period was quickly over after the 4th tray of the same chicken broth, juice, tea, and jello/”orange ice” arrived this morning.

wp-1462726828370.jpg

One of the doctors on rounds pointed to the tray of clears that had arrived for breakfast and said “you don’t want that, do you?” I gave an enthusiastic heck no and she gave me the green light for solid food. After a successful breakfast and lunch with no snags. I was able to go home.

As I’ve said before, bowel obstructions are not at all uncommon for people like myself that have had invasive abdominal surgeries, especially when the intestine has been resected. To date, I’ve had four obstructions since 2013 that have resulted in a hospitalization of no less than five days. It makes you wonder to what extent you can be preventative and how much you can really control.

So why is this continually happening? Well, we can’t be certain but we have some guesses. Two major reasons that bowel obstructions could occur (and no one reason is not that I’m just “full of shit” as my lovely nurse Sheila likes to say):

  • Tumor pressing on the intestine
  • Adhesions formed that cause the intestine to kink up

The most likely cause of obstruction for me is probably the adhesions because I have had two major, invasive, abdominal surgeries. Naturally there is going to be a ton of scarring. Unfortunately they cannot be seen on a CT scan so it’s hard to tell for sure. If we really got to a point where I was in the hospital every few weeks for obstructions, they could do surgery to remove the adhesions. That; however, would also lead to new adhesions that would form later on so it’s not the best solution unless totally necessary.

So that part is really out of my hands. What I do have control over is what I put in my body and the best course of action is a low residue diet. This means limiting the amount of insoluble fiber I’m eating and making food choices that will digest well and quickly.

Unfortunately this means no raw fruits or veggies, beans, seeds, nuts, hard cheeses, and whole grains. Even soft cooked cruciferous veggies like broccoli are really not good for my guts right now. In order to make sure that I am getting the nutrients I need to stay well and fight this disease it will be on me to find other ways to pack in those nutrients.

That means: Drinking my veggies through blended soups and green smoothies, packing in protein, and supplementing my diet with Ensure*.

*Sidenote- thanks to my loving parents that go above and beyond the call of duty always, I now have about a month’s supply of Ensure in every flavor.

20160508_220426.jpg

To all the employees that work for the company that makes Ensure, consider this job security.

Anyway, I really hope to stay out of the hospital. There are so many incredible things on the horizon in the next few months and I want to be out enjoying all of them fully.

I would be remiss if I didn’t speak to the high touch, loving, level of care that I received on 4 East at Women and Infants Hospital. With the exception of one nurse and one CNA, I had been taken care of at least once before by every other nurse and CNA assigned to me. They all remembered me and very specific details of my life. These people just have so much heart, I am lucky to be cared for by them. It matters so much when you are feeling pain/scared/frustrated/sick/vulnerable/all of the above.

Finally, I need to give a special thanks to Cory and my parents for making so many sacrifices this weekend to make sure I was not alone and in a good position to transition back to “normal life”. No mother should have to visit their daughter in the hospital on mother’s day. I love you guys more than I can even say.

Thank you to everyone else that called, texted, commented and left warm words of encouragement. I can imagine after over 3 years of this “I’m in the hospital again” bullcrap some would think “Ugh, again? Get it together Sultaire”. Every well wish and display of kindness means so much and has kept me going all these years. Thank you all ❤

 

 

 

 

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.