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.

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!

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.

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:

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.

“You look SO much better than the last time I saw you!” is something that is encouraging to hear after a string of hospitalizations.

Except, I think you lose points when someone says it…in the emergency room…as you’re admitted for yet another medical issue.

On Monday I had chills and a mild fever (101.6) so I went to the ER at Westerly Hospital. In active treatment you are advised to come in if you experience a fever over 100.4.

Now I must pause the story to say that after being so used to a women’s hospital full of oncology patients and expectant mothers, it was especially jarring to overhear an intake person say: “Sir! SIR! ARE YOUR FINGERS STILL ATTACHED?”

Anyway…

They did some blood tests and took a chest xray. They chalked it up to a virus and were able to send me home a few hours later.

Tuesday I woke up with a fever of 100.4 but I felt fine otherwise. Tylenol brought the temperature back down to normal and I carried on with my day. It was a great day, really. The visiting nurse took my vitals and blood pressure was great, no fever. Sheila also came over and I made scrambled eggs. That’s right MY FIRST SOLID FOOD IN WEEKS.

Yep, that’s the face of a happy girl eating real food. It’s also the face of someone that was not expecting a phone call hours later from Westerly Hospital notifying me that they found bacteria in my blood and I needed to come back to the emergency room.

The bacteria was identified in the blood cultures. Labs watch blood cultures over 5 days to see if bacteria grows. In my case it had in 4/4 viles which made it evident that it was a real infection and not just a contaminant.

It was made clear to me that I should expect to stay overnight. Knowing that I ultimately decided to make the slightly longer trip to Women and Infants and be treated there. Cory drove up with me and stayed with me in the ER until almost midnight when they confirmed I’d be admitted. He also drove about 200 miles that day for work so he’s a real trooper.

So since Tuesday night, I’ve been here receiving IV antibiotic. By Wednesday the type of bacteria was identified and apparently its a common bacteria found on everyone’s skin. They are guessing it got in through my accessed port. Luckily it was described to me as “wimpy” by the infectious disease doctor.

Once identified I was switched to an antibiotic called vancomycin. I’m tolerating it pretty well but I did have a pseudo-reaction during the last two infusions where my face and chest became red and warm.

Fun fact- the medical name for that kind of reaction is ‘Red Man Syndrome’. Here’s to hoping that ‘Method Man Syndrome’ is a real thing too.

Hopefully, I can go home tomorrow. My fingers are crossed. Since I’ve been here I haven’t had a fever or anything. That said as a precaution no chemo this week.

All in all in good spirits but definitely want to get home and get better. I’m confident that I’ll bounce back soon.

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.

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.