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).

 

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.

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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.

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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 ❤

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“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.

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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.

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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.

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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 ❤

 

 

 

 

Chicken Broth for Breakfast

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

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

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

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

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****BREAKING NEWS****

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

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(Don’t worry, I’ll take it slow)

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

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

Cinco de ‘laudid

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

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

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

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

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

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

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

Recovering as George

First, I must thank you for the outpouring of support over the past week while I spent four nights in the hospital resolving the obstruction in my small intestine. The words of encouragement mean more than you know especially when you feel like much is out of your realm of control.

I was discharged on Wednesday and have been trying, successfully I might add, to proceed with a high level of self-care. I pretty much needed to fight all of my natural instincts. So basically I’m operating on the “Constanza Principle”…

 

  • Instinct #1: I haven’t been at work in many days and I have to go back on Thursday or the world will explode
    • Opposite action: I was strongly encouraged and well supported by my supervisors and colleagues to return on Monday when I was feeling better. I was admittedly starting to feel anxious as my inbox piled up with questions that I couldn’t necessarily answer from home so I made a compromise with myself. I slept in on Thursday and at my leisure went to my office for an hour MAX, closed my office door, knocked out enough to feel less anxious, and went home.
  • Instinct #2: I am discharged which should mean that things are improving. There is nothing to talk about.
    • Opposite action: The night I was discharged one of the first things I did was email Dana, my social worker, at the hospital and ask for an appointment this week to “debrief”.
      • I will write more about this next week but one thing I have learned time and time again and not properly addressed is that when you are hospitalized you have experienced a trauma (anyone who truly understands what it’s like to have an NG tube placed while you’re awake can give me a chorus of “amen sister!”). Trauma’s are not all blood and gore- you are in a vulnerable position, you are not in control of what is happening to you, it is a trauma, period.
      • I went into my appointment not fully knowing what I wanted to talk about. Truly, I walked in there feeling pretty stable. As I anticipated there are issues that bubbled up that started with the hospitalization and weaved into other concerns both medical and non-medical. This appointment was the best gift that I gave myself this week. To express certain concerns out loud, to validate feelings, to have a good cry in a safe space where I don’t feel inclined to edit my thoughts- it was truly healing. I’m glad I nipped this in the bud.
  • Instict #3: Resting = Sitting in pajamas and binge watching TV
    • Opposite action: 
      • Ok fine I totally binge watched The Wire and old episodes of Veep on HBO. BUT I honored myself in other ways too!
      • I invested in my body by booking a massage at the Alayne White Spa. I didn’t truly know how many knots existed in my back until I got on that table. At one point I was face down and was so relaxed that I dosed off. I woke up to my mouth gaped open like an idiot and I was totally drooling on the floor through that little face hole. I’m 99.9% sure I didn’t drool on the massage therapist’s sneakers. Fingers crossed.
        • Funny aside: As I was on my way out post-massage I ran into Heather (infusion center nurse manager) and Nancy (4th floor oncology nurse). They were there for facials that they won at a silent auction. One would think that any reminder of the hospital the day after a hospitalization would conjure up negative feelings. I was just so happy to see these lovely faces outside of a medical setting I had to fight back happy-tears.
      • In addition to the massage I also treated myself to some time in one of the more peaceful venues in Providence, The Duck and Bunny. I enjoyed a quiet snack of crusty break drizzled with olive oil with Narragansett  Creamery ricotta and a pot of chamomile tea. It was calming and so good for the soul.
  • Instinct #4: I’m out of the hospital which means I’m capable of doing things for myself
    • Opposite action: Sucking it up and letting people offer their help because it just makes life easier
      • Mom and Dad cleaned up and did my laundry so I could come home to minimal work (seriously, gems). Also after arriving home after 15 minutes of me trying to convince them that I’d “figure out” something for lunch, I gave in and let them indulge me in a sandwich from Olga’s. I would have probably made a PBJ so they called my bluff.
      • Katie “Mamamamamabear” Carlson gave me a ride to Beth and Brendan’s house to dye easter eggs with her family. Sure, I could drive myself but it was very nice to have a ride. (p.s. I’m not very good at dying easter eggs #jewishkidproblems)

 

So there we go, trying desperately to practice self-care that I speak so highly of but don’t often practice.

Off to spend the weekend with my parents and back to work on Monday, hello sh-normalcy!

 

 

 

Snow & Chemo

To all of my friends in the New England- I hope that you are surviving the insane amount of snow that has come our way. On behalf of us all, I have taken it upon myself to send Punxsutawney Phil a strongly worded letter in regard to this “6 more weeks of winter” bullshit.

I am sitting at home on our 4th snow day in two weeks. I’m a bit torn as I really could use the extra rest and down time but at the same time it is hard to get back into a routine when I haven’t yet had a full week of work since before my last hospitalization. I guess I’ll just stick with not complaining since my landlord takes care of snow removal and I am left to binge watch Crimes of the Century and drink tea all day under my heated blanket. (To anyone working in Academic Affairs just accept that the add/drop period will never end. Ever, ever.)

Despite last week’s snowfall, I miraculously made it to Boston. I had every intention of writing my update last Tuesday after my appointment but in light of the MBTA basically imploding upon itself, my blog post would have been less about my health and more of a giant rant about public transit riddled with a generous amount of profanity and “f-bombs”. Seriously, anyone that tried to take a commuter rail, T, bus, or cab in the city of Boston last Tuesday must share my pain. How they managed to pull off a PARADE the next day when they couldn’t even get commuters to their jobs/lives the day before is beyond my comprehension. By the time I got to my appointments I’m almost certain my blood pressure was roughly one million over a thousand. (END MINI-RANT)

Per usual I was in Boston from morning until late afternoon playing the waiting game. In that time period I had two appointments: 1.) Ophthalmologist 2.) Medical Oncology. Stacey Applesauce Goldman was kind enough to join me in the waiting game and even sit in a dark exam room while I napped on the exam table.

Eye Doc: Good news! The last time I was there, three weeks ago, I was told that there was a trace amount of fluid starting to collect behind my retinas. This is of concern if ignored but can easily correct itself if one goes off drug. Apparently the three weeks spent on a chemocation did the trick and no fluid was detected. (I still want that seeing eye dog. Maybe I can make an argument for a therapy dog instead?)

Yes this one will do quite nicely, right Blythe family?

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  •  Oncology: This appointment was mostly just to get me back on chemo and to bring the doctors up to speed with the partial bowel obstruction experience.
    • Obstruction Recap– They determined that the bowel obstruction was unrelated to the study drug and left it at that. I tend to agree as I do have a history of sad guts prior to this trial. I mean, my intestines were cut in half and sewn back together only two years ago, that doesn’t just go back to normal overnight. My guts are cranky. So moving forward the plan for these cranky guts is to meet with the gastroenterologist again and plan for a full colonoscopy in a few weeks when she feels it is safe to push air through the intestines. We should have a little more information about what the thickening of the colon means after the colonoscopy.
    • Chemo- After much deliberation amongst the group, it was determined that I would be put back on the chemo regimen at a reduced dose of the SAR drug. I’m not sure how effective this will be in curbing my side effects as this drug could possibly be a placebo BUT it’s one less pill I need to take per day. Psychologically, it’s oddly helpful. So far this week I’ve experienced one day of visual blurring (common for first day back), fatigue (par for the course), nausea, leg swelling and stomach discomfort (details spared). So I suppose everything is back to normal then. It’s not great but it has been much worse.

I must be honest, I have thought a lot about quitting the trial over the last few months. It has been incredibly difficult and when my last CT scan came back at a plateau, it was tough to swallow. Through the last few weeks of being off of the drug I have had to physically, mentally, and emotionally rally. I think I am in a place now where I can at the very least commit to a few more months of this and see what comes of it.

As I have said before, part of the challenge is having no defined end date. It’s just this endless cyclical shitstorm. I’m going to try and reframe this in a more incremental way. My next CT scan should be in April. If I can just make it to April I’ll be okay. It doesn’t mean it’s over then, but it’s a small leg of the journey that I can compartmentalize.

So that’s all I have to say about the visit. A long day and not a lot of news.

Lastly, but most importantly I must express my gratitude…

Holy moly the response to my request for help has been unreal!!!! This past weekend alone, Cory insisted that I relax in the bathtub while he clean my apartment himself (boyfriend of the year, right?). From coast to coast and beyond the US people have been graciously helping in any way that they can. I have received delicious, healthy, home cooked meals made with love. I have received thoughtful gifts, offers to accompany me to the doctor, offers to help with laundry/cleaning/errands, generous monetary contributions to help with medical bills, and beautiful encouraging cards/texts/messages.

All of these acts of kindness add up and make my life a little bit easier, but more than anything they lift my spirits. It’s a major reminder that as fiercely independent as I would like to be, I cannot do it all myself. Your kindness is fuel to keep going and keep trying even in the midst of a difficult day.

THANK YOU for every little act of kindness!

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