Monthly Archives: May 2016

Clamp Test

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

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

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

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

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

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

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

On a bit of a different note-

 

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

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

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

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Enough

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Before I say anything, yes, I did thankfully make it to the commencement procession this past Saturday. I was discharged from WIH on Thursday, went to commencement for about an hour or so. My body didn’t have the energy to stay for anything beyond that.

I took about as many pictures as a “proud parent” might but here are some highlights. (And yes, I’m incredibly sick here. Make up and a new dress does wonders, huh?)

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I was beaming with pride for each and every graduate that walked through the archway. So many powerful and significant bonds have been formed with these students since they entered as bright-eyed and bushy-tailed freshman. It was an honor to see them through to the very end.

It is no secret that I adore working with students which is why it truly pains me to have to be away from work for so long as I watch the clock from a hospital bed.

 

So onto the heavy news…

I’ve had enough.

I can’t believe I am saying this, again, but I am writing this from yet another hospital bed with another NG tube going from my nose into my stomach.

This is the 3rd admittance to the hospital since May 5th. I’ve only slept in my own bed three nights since then. The past few years have handed me a mess of challenges but it feels like this month has had me in a choke hold and it it isn’t letting go.

After commencement I was exhausted so I went straight to my bed. A few hours later I felt nauseated and took some Phenergan to ease the nausea. The pill didn’t stay down long enough before I threw up for the first of eight times that afternoon. Around 5pm, with Sheila’s advice, Cory nodded that it was time that we go back to the Emergency Room. The hospital was the last place on the planet that I wanted to be but the only place I needed to be.

Per usual they made me comfortable, eased the abdominal pain, and sent me for x-ray’s and CT scans. I got the usual chorus of “didn’t I just see you the other day?”. We were initially alarmed because my white blood cell count was really high but I exhibited no other symptoms of sepsis. They brought in the infectious disease doctor just in case but in the end infection was ruled out. We were back to square one, the original culprit, the bowel obstruction that just won’t resolve.

Before you jump to any conclusions about what I must have eaten to land me back there so soon, please know that I was sent home with TPN (Total Parenteral Nutrition). IV nutrition that I administer myself that ensures I have everything I need while I slowly introduce other liquids and solids into my diet. In addition to TPN over the course of two days I ingested the following: 5 conservative sips of ensure, 4 plain crackers, 4 bites of Rice Krispies with almond milk, and less than a 1/4 cup of butternut squash soup.

So clearly I’m not wolfing down a grand slam at Denny’s*.

*Even if I COULD eat, you would never find me at Denny’s

So here are the facts:

1.) I’m in the hospital NPO (no food or drink by mouth) and receiving nutrition from TPN

2.) I have an NG tube in my nose to rest intestines

3.) We suspect the tumors studding the intestines are the reason the bowel obstructions are not resolving and happening more frequently

4.) Chemo begins tomorrow right in the hospital room. We’re going back to Taxol and Carboplatin.

5.) Taxol will happen weekly and Carbo will happen every 3rd week

I joke about Denny’s and keep the blog light but the truth is, in this moment I do not feel all that strong. All of this scares me. I’ve spent a significant amount of time being consoled by my parents, Cory, doctors, nurses, social workers, CNA’s….shit, even the radiology ladies brought by presents after I simultaneously sobbed and projectile vomited while they placed my NG tube.

It’s been a rough journey wrapping my head around this seemingly never ending story.

I’m in a place where I have no choice but to wholeheartedly believe that this treatment is going to help me because I am unwilling to accept anything else.

I am putting every ounce of energy I have into the universe: this treatment will work, I will be able to eat again, and I will go on to sustain a better quality of life without crazy invasive measures.

I need to believe this to be true, and I need you to believe this to be true.

Better things are on the horizon and I’m ready to get there.

 

 

Go straight to ICU, do not collect $200

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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!”

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“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

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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

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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.