Mini Update

I want to first thank you for your ongoing outreach and concern regarding the state of my health. It certainly means a lot to me.

A more typical Jess would be chronicling the hospital play by play, looking for the perfect google image to compliment. Buuuuttt let’s face sometimes you need to take a step back and process your own thoughts and feelings.

Where we left off was whether or not it was right to place a G-tube. Long story short there are a few ways a gtube could be placed, but none of the three options would be deemed safe. Ultimately no surgery was had and a few days later I was sent home. We had been NPO for a month so it was expected that I may throw up occassionally but hopefully once the new chemo kicks in my symptoms would subside.

I was home just one night before I began vomittiming more in one evening than i ever thought was humanly possible. I called my parents around 6:30am and without a second thought they jumped in the car and drove almost 2 hours on Christmas to get me only to drive another 45 mins to get me back to Women and Infants. They are truly saints.

On the back end Sheila, my doctor, caseworker, and one of my nurses were all prepped for my arrival. I have never been so happy to be in a hospital. After one night of feeling totally exhausted and defeated to finally arrive in a place that could bring me at least momentary comfort.

So where do we go from here? Im not sure. We have bumped chemo up one day to tomorrow. Aside from that I truly have no more information.

Thanks for being patient with me as I navigate this difficult time. I have been slow with returning texts and messages but please know I appreciate them from the bottom of my heart.

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Waiting, wishing, hoping

I’ve found that in the hospital world there is a lot of “hurry up, slow down.” There has been a whole lot of that since I have last written.

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Actually, my last post would have you thinking that by now I have had a g-tube placed. Well, at the time that plan was true. But per usual medical plans change and can do so with little warning.


*Before I really dive in I’m going to show you a quick difference between an ‘NG tube’ and ‘G-tube’ Without this disclaimer I fee like this entry could get a little confusing.
  • NG Tube: Naso gastric tube aka, nose hose
    • Sucks stomach juices out of body to let the bowel rest. Does not require surgery to be placed or removed.
  • G-tube: Gastronomy tube
    • small tube that sticks out of the skin on the abdomen that is connected to the stomach. You can still eat (semi) normally but it allows you to manually release the contents on your stomach should you feel obstructed and need relief. This should certainly cut down on these month long hospital stays.

 

Basically what had happened was we were planning to have the g-tube placed sometime between 1pm and 5pm last Thursday. This didn’t end up happening but it wasn’t until a few days later that I learned why. To be fair, someone could have easily explained it to me that very day but some of my meds leave me foggy and forgetful (and hilarious if you happen to catch me in person before bedtime).

A huge concern with any abdominal surgery is upsetting/disrupting the bowel. One pin hole perforation and you could be a goner. To be certain that the Rhode Island Hospital people had the space to insert the g-tube without harming the intestine they asked for another CT scan (they felt the one from a week ago was too old).

This morning during rounds the doctors explained to me that the people at RIH did not feel it would be safe to do based on how my bowel is configured at the moment. There is not enough space therefore the risk is greater than the reward. I appreciate their honesty in putting my safety first.

Right now we are waiting to hear from, our secondary plan, a gastroenterologist that has successfully placed G-tubes using a different procedure. He is supposed to consult with us today or tomorrow so let’s hope for sooner rather than later because this g-tube business is what is standing between me and home.

That’s all I know for now. The goal is to be home by Christmas so let’s hope so!

Thank you to everyone that has continually reached out, I apologize if you have not yet heard back from me as some days are foggier than others. Thanks for the gorgeous flowers, blankets, and gifts. Thanks to the nurses that show love and compassion and help me to stay upbeat. Thanks to my big brudder and his girlfriend for spending their short holiday on the east coast with me in the hospital. I may have been really out of it but your humor and love is infectious and did me a lot of good. A big thank you to my co-workers for making me the sweetest video (I won’t embarrass you by posting it).

Lastly, thanks to my parents and Cory for rearranging your lives continually to make sure I’m okay and have everything I need.

On a final note, please keep the positivity going because I need it desperately right now.

 

Giving in: G-tube tomorrow

Journal keeping is a treasure of perfectly phrased feelings that we may grasp at but never quite get back to without documentation. Today, with a heavy heart, I had to make a choice that I did not want to. I had to make a choice because if know that my body needs me to make this choice. I was faced with the same decision earlier in the year and emotionally and physically was in a different headspace:

I’m going to cut any and all suspense because I’m tired and emotionally drained.

Tomorrow I am having surgery to get gastric tube (g-tube).

But here are my thoughts on the same difficult decision in May.

“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.” May 2016

Today, one day after a second failed clamp trial (the one where we clamp off the NG tube from nose –> stomach. I felt kind of empty in that I just had nothing left to give to make my intestines work like most other people walking the earth. I was no longer afraid of the g-tube alternative because my body in a sense already gave me a little wink to tell me what it needed.

I can’t do this all by myself on prayer and bowel rest alone, and my poor little gut can’t do it on his own either so we’ve agreed to get help.

I’m not sure what time the procedure is tomorrow but please gather all of your positive energy and send a little in my direction if you can.

I’ll be sure to post more in a few days as I recover.

Thanks again for all of the love.

Day 13: I’m part robot

Hindsight is 20-20, huh? Exactly three Monday’s ago I had come home from work curled into a ball on our bed in pain and silently repeated in my head over and over “please don’t let me have a bowel obstruction.”  In my heart of hearts I knew that I did but I also knew the severity of certain symptoms to look and genuinely thought I could resolve it at home. Unfortunately this problem was and continues to be much bigger than me.

Whether I chose to go to the hospital five days sooner it wouldn’t have changed anything. The fact of the matter is that the time we wasted not being able to use Carbo gave time for disease to grow and put strain on my intestines. Imagine a little piece of straw covered in bubbles. The straw being intestine and the bubbles begin little tiny tumors. As the bubbles grow the create tighter and tighter regions in the intestines. This will not resolve until we find the rigth chemo to help attack it.

We truly hope that Doxil is that answer we’re looking for.

SO I know you’re just dying to know about my bowels…because? who doesn’t?

giphyI was going to make a cheeky joke about the hot sauce joke from Dumb and Dumber when it dawned on me that this gif is the actual personification of my small intestine gearing up to ruin my life.

Bowel Obstruction:

far as the obstruction goes, right now I still have the NG tube in my nose. The last day I wrote I was excited about the prospect of trying out clear liquids. Although I did a great job with the tube being clamped off, it was just too soon. I tested out a few sips of broth, tea, and Ensure Clear. Ultimately I became nauseous and couldn’t keep it down.

I was pretty disappointed and down over not overcoming this obstacle but  I had to just be at peace with the fact that my body isn’t ready. I’ll get all the nutrition I need from TPN and as much as it pains me to have to say this, I have plenty of time because I will have to go home on TPN until I can take in enough nutrition by mouth. I hope relearning to eat is a quicker process than it was over this past summer otherwise I can guarantee you that will be sobbing over every tray of christmas cookies you offer. Feel free awkwardly console my overreaction to your snicker-doodle.

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And yes, the tube will stay in my nose until discharge. 😦

 

Breathing: 

Again, wish I had better news but things haven’t gone as straight here as I had though. The other day I was scheduled for another lung tap because my best is basically more liquid than actual lung leading to compressed lungs and shortness of breath. I’ve been finding that I’ve needed to wear the oxygen mask overnight each night now.

I sat through another lung tap that was not as successful as we had hoped. It released a little fluid but due to pneumothorax (air where there shouldn’t be) we had to stop. The next day Dr. Robson told us it was time Denver Drain:

 

Not to  be confused from that Goddamn John Denver.

SO what’s a Denver Dam?

There is a small catheter that is surgically placed on my right side rib-cage that can be attached to a collapsable bottle or bag. When I feel as if the fluid in my chest is accumulating too much and I become short of breath (as I had a few weeks ago). I can bypass the lung taps and drain the fluid myself. It’s not cute but it’s healing well and they’re managing the pain. One upside to the Denver Drain is that it’s reversible so maybe, just, maybe this doesn’t have to be forever. There are some downsides so I’m not

Since the surgery they have moved my room to an AMS room to monitor my heart rate and vitals at all. Ao should you feel like visiting over the next few days just ask the front desk for the room number. I am still very tired throught the day so  I do still ask that you check with myself, Cory or my Family if you want to come by,

Lastly,

I’ve been so touched by kindness that I need to especially recognize today Sheila Enderby who went out and got a secret friendship tattoo. This week alone I’ve been down, cranky, unpleasant, uncertain, needly, afraid. I just think that despite all she just let me be human and that was all  Ineeded then,

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Hospital Update: Day 9

We are making some progress with the bowel obstruction, but I feel that there will be a few more days that I will need to stay here. It appears that with each new admittance to the hospital, the longer they seem to keep me. I mean, it makes sense. We’ve experienced on multiple occasions the false security of showing improvement only to be readmitted just 24 hours later. Slow and steady has been the approach with this stay in order to best avoid the hospitalization revolving door.

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(Clearly not a true representation of said revolving door)^

The time I have spent here this visit has been a bit more daunting than I anticipated. It’s not as if I thought it would be a cake walk but there were a few things that had to be tended to that I wasn’t expecting.

A quick recap of events:

  • NG tube placed (nose hose)
    • Throat is beyond raw, often hard to speak
    • Cepacol cough drops have been mega helpful
  • TPN
    • Back on IV liquid nutrition since I can’t eat or drink by mouth (yes I am torturing myself with pictures of pizza and junk on Instagram)
  • Thoracentesis
    • Drained one full liter of fluid from my right side that was compressing my lungs  (3rd lung lap in 3 weeks).
    • My blood oxygen is still on the lower end so I have opted to sleep with oxygen the past few nights (as if I don’t have enough crap shoved up my nose right now).
  • Blood transfusion
    • Hemoglobin was low yesterday so they gave me two units of blood through a peripheral line
    • My veins are the worst and the peripheral line was very difficult to place. Through lots of patience, tears, and one determined AMS nurse we got there.
  • New chemo began
    • Doxil infusion lasted 2 1/2 hours
    • No adverse reaction
    • Thumbs up so far

I’m honestly too exhausted to really go into detail with everything that has transpired this week. All I can say is that I’ve had excellent care, great support from loved ones, and am optimistic that the next few days will show a bit more promise. There is a little light starting to shine toward the end of the tunnel. A doctor, just minutes ago, told me that we were in a good place to do a clamp trial and take the NG tube off of suction. So basically the tube is still in but it’s not doing anything. If I can go 24 hours without nausea, vomiting, issues, we may get closer to getting the tube out and perhaps even going home.

On that joyous note…

Thanks to those that have reached out and visited. You know how much it means to me.

Even with this exciting news I am asking for no visitors except for immediate family and Cory at this time. As mentioned before it is very hard on my throat to talk extensively so texts and messages are welcome instead (at least for now) 🙂

Let’s think positive thoughts for the next 24 hours!