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.

 

 

Ups & downs of an antibiotic overkill

First of all happy almost Independence Day party people. I hope there is abundant BBQ, fireworks, and minimal fits of rage over finding parking in your near future.

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Okay, now that you’re all jacked up on the thought of pasta salad and 500 pictures of barely visible fireworks on Facebook- I should probably get the meat of this update.

Spoiler alert: it’s a long one…but there’s a bunch of pictures so that’s okay, right?

After returning home from visit #2938409234 to the hospital for my last blood infection I was feeling grateful to be in my own space (and still am) but the week proved to be more difficult than I had imagined. When I left the hospital I thought “oh give myself antibiotics for eight more days? That’s nothing!”

Ehhh…it wasn’t nothing.

The process of administering these drugs into my port was easy to do, but it tacked on couple extra minutes in the morning and at night. I guess it just became a little thorn in my side because the process of setting up and unhooking TPN infusions is more involved so adding anything else is just annoying. Especially so when it is imperative that you use a new alcohol swab for 30 seconds between every step in the process. BUT avoiding infection is paramount so it helps no one to cut corners when sterilizing.

(FUN FACT: To anyone that has to do TPN or home infusions themselves, a fun trick that I was taught to know that you’ve swabbed enough is to hum the jeopardy song twice.)

Over time, not only did I feel run down but the antibiotics wrecked havoc on me. I experienced tremendous muscle aches, especially in my lower back which made it nearly impossible to get comfortable anywhere, even in bed (this is actually a listed side effect of Daptomycin).

Nausea, ooph. Despite my best efforts to control it with Zofran and Phenergan, I experienced waves of nausea and would vomit about 1-3 times a day. I need not go into more detail about what it did to my tummy so we’ll just say “not pleasant” and leave it there. Unfortunately, it virtually wiped out most of the progress I had made with eating. I still try but I often can’t get more than two bites down before they decide to come back up. My doctor’s (hopeful) goal is to get me off of TPN in the next 3 weeks or so. I feel like I’m starting at square one with eating but I am determined to be able to eat enough calories to no longer have to rely on TPN for nutrition and weight gain.

Beyond the expected side effects my abdomen has felt quite distended which is never comfortable. I’d normally jump to being nervous about another obstruction but despite being distended my belly is soft, I’m passing gas, and have “good bowel sounds” (noise in all four quadrants). So that’s promising. I can only guess that being off of chemo for two weeks has perhaps created some fluid or something pressing against my organs. I don’t know I’m not a doctor.

All I know is that I can’t escape my own body and the discomfort and fear that comes with it. Ask anyone with cancer and they will tell you that anything in the body that feels “just off” without explanation brings about a tremendous amount of stress.

Everything considered, I’ve felt pretty down this week. I have; however, done a better job of reaching out to some friends, family, and Cory to talk and let it out. I have a tendency to sit stoically alone with my thoughts until they bubble over. I found a lot of comfort this week and that has definitely helped to pick me back up and dust me off. Even Dr. Robison and I had a life talk and cried together during my last visit. (SIDENOTE FOR ANYONE LOOKING FOR THE RIGHT ONCOLOGIST: Find a human being that treats you like a human being and asks about your emotional wellbeing unprovoked. It goes a LONG way)

Bottom line, when you don’t feel well it sucks. When you don’t feel well for 3 1/2 years it sucks a lot more and eventually you feel like you’re running out of steam. I know that there were will another upswing in my future but the last few months of hit after hit have really knocked me down.

Heaven knows I need to be in a strong headspace because chemo started again yesterday. A funfilled SIX hour infusion. Normally Carboplatin and Taxol wouldn’t take that long but because I’ve had platinum based chemo in the past “your body remembers” and there is a greater likelihood of having an allergic reaction. Because of that they dripped the Carbo alone over a three hour span. Poor Cory. We ended up missing his annual work pool party because we didn’t expect the infusion to last that long. As always, he was great and stayed with me without complaint.

The next two weeks of chemo will be a breeze in comparison. Just taxol so I should be in and out of there in about 2-2 1/2 hours. Cake.

I really don’t want to end on any more Debbie Downer notes. I think it’s important to be honest when things are not okay and recently, they haven’t been great. It’s also important to highlight the moments when you’re able to get your head above water briefly and fill your heart with something that takes you outside of the looming, intrusive, thoughts of cancer.

My situation can improve and below are glimmers of proof:

 

Things that were pretty awesome this week:

1.) Last minute free tickets to see Andrew McMahon in the Wilderness

I spent that entire day in bed that day so when I received a text saying we got on the guest list for my favorite band that night it took a giant pep-talk to myself to get out of bed and do something I know would fill my heart with joy. Granted, it was general admission and I had to lug the 10lb TPN bag on my back but despite being really tired I made it through and was SO happy I went. There is something so uplifting about Andrew’s music and the fact that he crowd surfed on a giant inflatable rubber ducky.

Oh and how fitting, he played ‘Swim’ the song he wrote about his own cancer struggle that simultaneously empowers me and makes me cry every time. Hence Cory, Sheila and I huddled together in the bottom right photo.

2.) Charlie Ruth!

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Auntie Jess got a visit from Katie and my little gummy bear. Hanging out with Katie is always the best but this is now amplified with squishy, sleepy, baby snuggles.

3.) Savoy Books

On a day I was feeling somewhat  okay (not clinging to the couch or porcelain throne at least) I ventured downtown to my new favorite happy place, Savoy Books. The store is two stories, floor to ceiling, of every genre imaginable. It has a small cafe and it’s warm, cozy, and just feels so welcoming. It’s a perfect place for when you’re not feeling well- quiet, air conditioned, and calm.

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I took my time there and read about 45 pages of the book I ultimately purchased: I’m just a person by Tig Notaro. Tig is a well known comedian and really gained notoriety when she got on stage for a set and announced in her opening line that she had cancer (mere days of learning of her diagnosis). The recording of that set went on to be grammy nominated.

I feel like Tig and I are living semi parallel lives (in some respects). She was plagued by a serious bacterial infection that almost killed her, diagnosed with cancer, and faced horribly tragedy all in the same year (2012). Sometimes I read her words and think, SHIT did I write that? Get out of my head Tig!

Here is a perfect depiction of the struggle of re-training your body to eat:

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Spot on Tig, spot on.

4.) Thunderstorms

I don’t have a picture but last night after an exhausting day Cory and I set up lawn chairs in our garage and decompressed while watching the pink lightning ignite the sky and take in the sounds of the rain and booming thunder as it neared closer. There is something oddly comforting to me about a thunderstorm so it was the perfect way to end our shit-sandwich of a day.

So that’s all for now. Updates will surely come and I hope that future posts will include more “I’m feeling good”, “I’m eating”, kind of stuff. For now, this is reality.

Chin up.