We are approaching one week since I have been discharged from the hospital. This is (sadly) shattering my record from the past month of yo-yo hospitalizations.
Initially, I thought it would be uncomfortable leaving the hospital and moving into the new place. I didn’t even say goodbye to my old apartment. Like magic, with the help of a lot of friend/elves, I was just moved. Luckily the new house is a great place to recover and slowly but surely Cory and I are making it into a home.
What a stress-free environment. It is this little house with a perfect back yard and a garden. There are constant sightings of vibrant cardinals, bees, and hummingbirds. This morning I took my yoga mat into the grass and did some makeshift gentle yoga/stretching to get my body moving (after a month of being nearly sedentary). A bright red cardinal was perched on the tree above me the entire time. I couldn’t possibly be more “one with nature” in this moment unless I transformed into Bear Grylls and was dumped out of a plane into the Amazon.
Overall, my experience home has been the right prescription emotionally. I love our little town, the house we’re renting is comfortable and coming together, and my roommate is pretty easy on the eyes ;).
Since I didn’t actually write about getting discharged, I’ll keep it brief and stick to the important bits. They took incredibly good care of me there and kept the NG tube in up until about 30 mins before I left to be as precautionary as possible. But at some point your guts are going to do what they’re going to do and Dr. Robison felt it was best to get one more round of chemo in the hospital then go home and be normal*.
*”Normal”- not to be confused with ACTUAL normal living, but operating in a way that makes you feel somewhat free and human. Let’s call it normal light.
Going home was the best gift and the correct decision at that point. Dr. Robison also knows me all too well and probably anticipated that I would try to go back to work too soon. Just like a surgery, the body needs time to heal and repair itself especially after the added trauma of septic shock. That said, until I’m medically cleared I will be home for a little while and fondly thinking of my friends at Bryant from afar.
Unlike other discharges from bowel obstructions I’ve had, this time I was sent home having not even advanced to clear liquids. The only thing by mouth that I had in the hospital were Dum Dum lollipops (thanks to Sheila and Shakay for supplying). No, this time we were going to to sllllooooowwwwwwwwww as molasses to prevent ending right back up in the ER yet again. For now I’m still on Total Parenteral Nutrition (TPN) where I receive all of the calories and nutrients I need for the day over a 12 hour period right into the blood stream through my port. I’ve been supplementing this with tiny amounts (2-4 oz.) of watermelon Italian ice to reintroduce something into my system by mouth but that’s it.
Starting tomorrow, with the blessings of Sheila/my case manager/dietician, I am going to try small amounts of blended soups (like butternut squash) and pureed foods. Stocking up on baby food basically. I was advised to listen to my body and slowly reintroduce foods into my diet working up to solids (low in insoluble fiber). I miss real food but we are getting there slowly.
You can imagine how brutal it is when Cory (a very talented cook) is making dinner for himself. I awkwardly ask him to let me smell it and pretty regularly shove my nose in the direction of his food to at least pretend like I know what it tastes like.
But Cory isn’t the only wizard in the kitchen. Watch the TPN master prep tonight’s dinner (with the help of some “muscle” to spike the bag). I made this video to take some of the mystery out of what is actually sustaining me and how I manage it (and cranked up the speed 15x as to not kill you with boredom).
What you’re watching:
- Sterilizing pretty much everything with alcohol wipes
- Injecting the TPN bag with additional vitamins and Zantac
- Having Cory spike the bag because it’s not easy. You really need to jam it in there.
- Hooking up the tubing to the bag and pump and priming the tubing to push out any air in the line.
- Sterilizing the end of my already accessed port (the little tube hanging from my chest) and flushing it with saline.
- Connecting the primed line to the port tubing and starting the pump. It’s all pre-programed so all I need to do is sit back and let dinner run through my bloodstream for the next 12 hours.
What you don’t see:
- The big white bag stays refrigerated but needs to be left out for about 2 hours prior to use.
- I washed my hands thoroughly before starting the process, promise.
So what’s next?
Chemotherapy continues on Thursday bright and early in Providence. This is a Taxol only week so it shouldn’t be too bad. Oh by the way we are back on the weekly chemo regimen- every Thursday now. No breaks, no week off, no chemocation. We can’t afford to not be aggressive after all of this hospital business.
Put on your game faces folks.
As always I will keep you posted with a progress report. Thanks for continuing to send warm thoughts and wishes for improved health 🙂
I hope everyone is enjoying this gorgeous June weather and since I cannot- please eat double at barbecues and have some sort of boozy frozen drink on my behalf. (nom nom nom, in spirit).
This reminds me of when I was on a Bivad for the heart and had to wipe everything down and clean the tubes coming out of my stomach. I thought 22 months was an eternity! Now here you are, so hard at work keeping life as normal as you can!!! You need remission! Healing time must come! A Mass General cardiologist told me I had to put it out in the universe, I thought that sounded very new age, but asked The Universe for a new heart, and got one a day later!!! So Jessie, ask for what you want and believe it can happen! We all send you our Love❤️ and support!!!!
Jess, keep your positive attitude. We are pulling for you.
Once you are able to eat , we would love to have you, Cory, Mom and Dad for a barbecue.
Your new house sounds great. Enjoy it with your best friend.
You are always in my thoughts and prayers Jessy! Your new home sounds perfect! All my best to you and Cory!!
You enter all of your fears authentically!! I recently read that friction that comes from living with the brakes on becomes the means for forward momentum ~ for transformation! You show us how to feel more awake, aware, inspired, and deeply grateful to be alive! Blessing to you going forward and thank you for sharing as you continue to inspire me to be my authentic self. Namaste!!
Warm thoughts, spring flower fields and cardinal vitality for your continued healing and good health Jessie…
and for Cory and your mom and dad and brother…and all who care for you and that you care for.
with love, Deborah
Hooray for new home and new beginnings as a couple! You continue to inspire me with your sense of adventure and live of life.
Hi Jessy! Always thinking of you, and hoping you are feeling better every day! Congratulations on your new digs, it sounds magical~
You continue to be an inspiration to all of us, your strength and endurance are amazing. Cannot wait to see you at a barbecue sometime this summer! Take good care, and enjoy your new place. Love Peggy, your Cape Cod neighbor