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.

 

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The Waiting Game

I’ve decided that anytime a patient is admitted to the hospital for a bacterial infection, their room should be equipped with a speaker that plays the Jeopardy theme song on a loop. Why is that? Because your treatment and ability to go home is dependent on what is growing (or not growing) in the lab. Even when the bacteria presents itself in the sample, it can take a few days for it to develop into something identifiable.

As of right now we don’t know if the bacteria is the same as last time (which is probably the case) or a different type. Type dictates the kind of antibiotic and that dictates the plan for sending you home.

So for now I’m on antibiotics that have the greatest likelihood of knocking out what they suspect it is. My good friend vancomycin…ugh.

Yesterday was a rough one physically as I was a pukey miserable mess. My poor parents and I were downstairs in the lobby at Au Bon Pain (field trip!) when I knew my stomach was about to hit the reverse switch. Even with an injured rotator cuff my mom was quick to her feet and wheeled me toward the bathroom to this little alcove where I could vomit without a million eyes on me. If I actually had hair to hold back, I’m sure she would have done that too. Thanks Mom 🙂 There was a lot of that yesterday and it took a great deal of energy out of me.

Later that day…

In an effort to be proactive I was rolled over to Rhode Island Hospital and my port was removed in the operating room. Typically ports can be taken out in a doctor’s office or hospital bedside but mine has been in there so long with so much tissue grown around it, Dr. Robison didn’t want to torture me.

While I was in the OR they also ultimately decided to put in the PICC line that we had discussed. Initially I was freaked out by the idea of a central line in my arm. Now that I have it, it really doesn’t bother me. I can’t feel it and I still have full use of my arm.

What makes it different from the port that I had is that we won’t have to keep “accessing it” or putting in a needle to use it. It’s a “double lumen” meaning there are two little catheters that hang down. They can be used to draw blood, administer medication, chemo, TPN, etc.

The procedure itself wasn’t terrible. I was awake for it but they gave me drugs so I wouldn’t feel it. They also utilized a cloth near my head to shield me from seeing the procedures. The worst of it was when they injected the site in my chest to numb it. After a huge involuntary yelp they gave me stronger pain medication and the rest was smooth sailing.

So here’s the PICC-

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It’s also covered by this stretchy sock thing so:

1.) I can tuck in the little catheters when they aren’t hooked up so they don’t catch on anything

2.) No one has to see it. I bet there are some cute PICC line covers out there. Hmmm…making a mental note to look on Etsy later.

Overall the PICC line is a good alternative to the port for now. The only downside is that a PICC line’s lifespan is not as long as a port so this is a short term solution. Eventually we plan to place a new port in my chest.

In other news, I’m in slightly better spirits today. My anger has started to subside into acceptance.

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I want nothing more than to feel good and be home but I know I just need to keep my mind busy, buckle down, and move with the process.

Before I sign off here to do another rousing round of sudoku, I want to thank everyone from the bottom of my heart for continuing to make this journey with me. I have been on the receiving end of immense kindness from people that I have met in all stages of my life (and even some people I haven’t met!). Your love and encouragement helps me to lift myself up and dust myself off during each of these set backs. Thanks again ❤

 

I should just pay rent to the hospital

Tuesday was a gorgeous day. I was working from home in the backyard under the patio umbrella. As my creative juices were flowing in front of my lap top I got a chill. More than a chill really, it felt like winter inside of my body. I chalked it up to sitting in the shade and threw on a sweatshirt. Finally I couldn’t take it and moved into the warm embrace of the sun. I let it soak into the fibers of my sweatshirt like a little oven. Eventually I just went inside and piled myself under blankets. A couple hours later I felt feverish so I took my temp. YUP…104 temperature. CRAP.

I knew what my fate was. I would have no choice but to check into Hotel de Women and Infants pretty much kicking and screaming.

Cory drove and stayed with me in the emergency room. Around 11pm I was admitted and moved to a room on the oncology floor. Prior to that they did a chest x-ray and drew more blood cultures. The end result is that I have another/still have the same (?) blood infection. I am neutropenic at the moment which means that I am low on white blood cells that would normally fight against bacteria and infection. This is common in cancer patients undergoing chemo. Our immune systems are just shot.

That said, if you are sick or even suspect you have a cold- GET THE HELL AWAY FROM ME.

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This is currently on my hospital door with a box of super attractive bird flu masks

So I’m not going to dissect every  detail of my time here so far because it’s exhausting. Here are the cliff notes:

  • I will most definitely be here for a few days 😦
  • My port just stopped working yesterday. Can’t flush it, can’t get a blood return. Nothing. That said I’ve had to have a couple peripheral lines put it (like normal IV’s) and that sucks a lot. I’ve had more needles jammed into me in the last 48 hours than I can count.
  • Since my port was infected previously my doctors are erring on the side of caution and having it removed. It will happen sometime today but we’re at the mercy of whenever Rhode Island Hospital can do it so until then I must fast.
  • They have two interventions to give me a boost and make me a little stronger. First it an injection to bump up my white blood cells. The other I am having as we speak and that is a blood transfusion. My hemoglobin was low so that should help too.
  • Again, no port = tubes hanging from each arm uncomfortably. I’ve never missed my port more. I’m not afraid of needles but I certainly do not enjoy getting stuck with them multiple times a day.

    With all this tubing hanging from my arms I’m tempted to recreate the fake party scene from Home Alone:

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  • No chemo this week so we can deal with the infection first
  • Once the infection is gone they will be putting in a temporary PICC line (Peripherally Inserted Central Catheter).  Eventually they will come out they will place a new port like the one I have now. Anyway, the PICC looks like this (photo cred: Happy Colon):

 

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So those are the facts, here are the feels:

My initial reaction was anger. I’m actually still pretty angry which isn’t my typical response to something like this. I have just had so many hurdles thrown my way in such  a short period of time, it’s exhausting. You are just always playing catch up to feel well. When will the day come that I can do that? If the last few months is any indicator it’s going to be an even longer road than I imagined.

I explained my frustration in these terms to a social worker on the floor. Most everything I do now has an asterisk next to it-

  • I can go back to work but I can only be physically there 4 days a week
  • I can take a shower but I have to spend 10 minutes taping a plastic bag over my port needle to keep it dry. (and DEFINITELY no swimming)
  • I can go to that barbecue but I can’t eat any of the food there

You get the point, everything is conditional- at least for right now.

I get complimented often on my positive attitude which I sincerely appreciate. It’s still in there somewhere! I’m just salty at the moment. For now I need to honor and acknowledge the pain/anger/frustration because those feelings are authentic and part of the process.

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Don’t worry George, it’s not the summer of Jess either.

Maybe there will be an autumn of Jess? Hope so.

 

 

Because nothing is easy

Because nothing is easy, my “wimpy” little bacterial infection actually landed me in the hospital for eight days and seven nights. My last entry was a week ago and that day I was SURE that I was going to be discharged the next day but because it’s me, I had to complicate things a bit.

A few factors that delayed discharge:

Vancomycin  (vanco) gave a mild skin reaction. Due to that the doctors had to play around with the rate in which it was administered and the dosage. With this drug you also need to draw blood just prior to the next dose to see exactly how much vanco is in you. It can’t be too much to too little. Pretty much every blood draw I had except for the last missed the mark on either end. In short there was a lot of tweaking that had to go on before they could send me home with the drug.

-Daptomycin (Dapto) is a much better antibiotic that can be used as a second line treatment if vanco is not working or an allergy exists. Switching to this drug took a few days because your blood cultures need to be sent to a lab with a sample of Dapto and they watch it to see if the bacteria is sensitive to the drug. The results took 48 hours to yield but luckily it came back in my favor and we could make the switch. With Dapto, I was required to do one infusion in the hospital to monitor me for any reaction. We did that yesterday and after that I was cleared to go home. I didn’t even think it was real that I was going home (this is how jaded I have become in regard to my own health).

-My port appears to be the source of the infection which means that we had to be aggressive and consistent with antibiotic that would flow through the central line. The goal is to save the port. I will have blood cultures again in a week and if the sample from the port is still coming up positive for bacteria then the port may need to be removed and replaced. I am very much hoping this isn’t the case and honestly don’t think it will be.

Right now I feel okay but not as well as I felt last week before going to the hospital. A week of antibiotics, antihistamines, and other necessary medications can kind of knock you down a little. The antibiotics have torn up my stomach so I’m slowly getting my appetite back. I do have TPN at home that I have returned to so at least I’ll get the appropriate calories and nutrients while I build up my food by mouth. In short I’m just really fatigued.

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That said, I’m grateful for the care I received at WIH. From the ER to 4East I was in the hands of people who know me, provide the best care, and care greatly about the work that they do. Despite how much longer I was inpatient than anticipated, we could find comfort through frustration that everyone was working as hard as they could to find a solution to the various challenges that arose.

Thank you as always to my parents and Cory who made many a long drive to be with me in Providence and help me keep my head on straight.

So I’m home now. Again, writing this from my back yard with the chirping birds and the abundant garden.  Thank goodness.

From here on out the plan is-

1.) Administer IV antibiotics through my port at home from now until June 30th

2.) Continue TPN until further notice

3.) Start chemo again June 30th after a check up with Dr. Robison. That day I will receive Taxol and Carboplatin in the infusion center in Providence as I would normally.

and most importantly…

4.) STAY OUT OF THE DAMN HOSPITAL!

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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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