Not Dead Yet; Or, Ode to Hospital Food
I know it’s been quiet over here from the Jazzturtle camp. It’s been a crazy couple months, and I have had quite a roller coaster ride!
On Oct 5th, early in the morning my husband took me to Duke Hospital Emergency Room, because I had extreme abdominal pain. After spending the night in the ER, and having many tests, I was admitted and taken to emergency surgery around 10am. Surgery lasted almost 4 hours. When the surgeon opened me up, they found my abdominal cavity full of septic fluid. My surgeon described it as “my organs were all glued together and my entire abdominal cavity was inflamed.” My surgeon told me she had never seen anything like what my insides looked like in her entire 18 years of doing surgery (and she’s the chief of Advanced Trauma surgery) She brought in 3 other surgeons for their opinions (a GI, OBGYN and Oncologist) and none of them had seen anything like what I was presenting with. I had no perforations in any of my organs, but I was filled with septic fluid. They couldn’t understand where all the fluid came from. I was in septic shock and almost dead (so I’ve been told) It took over 20 gallons of saline fluid to “wash” out my insides.. and even then I was left with pockets of fluid that required drains to be left coming out of my abdomen.
After surgery I was taken to the “Step Down Unit” (which is the care unit just below ICU) I spent a total of 16 days in the hospital. The first few days I was fighting the peritonitis hard.. I have been told it was touch and go.. “almost dead” were the words I’ve heard many times. I was NPO (nothing per oral=no food=NG tube up my nose/down my throat to my stomach) the first 9 days..Let me tell you that tube is my least favorite thing EVER! My mom, who is the most amazing person ever and slept for 9 nights in the barka lounger in my small hospital room because she wouldn’t leave my side, took a couple photos of my daily “walks” around the hosptial floor. I admit I wasn’t happy those first few times I was forced onto my feet.. but I know it was for the best and I always felt better after I moved around.. even though I complained in the moment.
When the tube came out, I got to experience ALL THE GLORY that is hospital food (can you feel the dripping sarcasm?) But let me tell you… after 9 days of nothing that first bite of red jello was the BEST THING EVER!!! But really.. you would think being at one of the top hospitals in the world, the food would be at least passable.. but no so much. And there’s so much sugar in everything!! But other than the subpar food, the care at Duke was amazing. My surgeon is incredible, and she and her team saved my life. 10 days after the surgery the pathology lab report came back. It said that I had a 2.7cm malignant carconoid tumor (Neuro-endocroine tumor) in my appendix that burst. It was the tumor bursting that caused the septic fluid to fill my abdomen. I was lucky that my appendix also didn’t burst, as then the cancer cells of the tumor would have spilled into my abdominal cavity- so there’s a bit of good luck. I have a great oncologist that will help me stay healthy as I move into the future. I have a more tests scheduled, and then a second surgery in March to remove a small piece of my colon along with those lymph nodes to make sure the tumor didn’t metastasize.
So, I was released after 16 days, on my way to recovery, but with a PICC line (IV line ) in my arm for my antibiotics- which I gave myself IV every night. The first week I also had a wound vac dressing. Being home was a boost to my healing though. You really get no real rest in the hospital when the morning parade beings at 4am with the am blood panel stick, then the 5am vital check, then 6am Dr rounds… A week after returning home I shocked my doctors and family by going to SAFF!!
I couldn’t miss SAFF!! I admit my doctor and my family were not quite as excited by the prospect of me going as I was insistant.. but I promised I wouldn’t “do” anything, but sit in the booth. I am blessed to have amazing friends that descended upon the booth and like fairies helped get everything set up,made sure I had a comfy chair to sit in, and were there to check on me throughout the festival as well as helped take everything down and get me out before the chaos of loadout started. I got to see my friends and hug them. This is very important when you’ve been told (many times) how almost dead you were. I got to bask in the creative energy that is SAFF. I got to enjoy the autumn in the mountains- I feel like I missed all of autumn.. this was my only taste. So I rejoiced in all of the love and good wishes, and then came home to my couch for what has been the longest 7 weeks I’ve ever experienced.
So here I am. 8 weeks into my recovery. I’ve gained 15 lbs and I’m back to a “normal” weight. I’m getting off the painkillers as much as I can. They finally took me off the narcotic, and I’m trying to manage the pain with something that’s considered non narcotic.. but I hope to get on just ibuprofen soon. Recovery is happening, though it’s slow. My incision is almost healed. I have a couple of fissures that are draining the fluid that’s still leaking from my colon.. so in reality that kinda sucks. I still have one JP drain coming from my abdomen also draining. The Dr’s took me off antibiotics and I got my PICC line out last Monday.
I had to go to the ER on Friday because the deep pain had returned and I was afraid the infection had returned. So my infectious disease Dr. wanted me to get evaluated. The blood work showed my white cell count going up, but then the next day it went back down… the CT scan shows the pocket of fluid slightly smaller than it was 2 weeks previously.. so that’s good news too. All of my tests show me getting better, even though the pain that returned. They decided the pain that returned was because of increased bowl function and the risk to getting me back on an antibiotic (and getting resistant) was more serious than the “possibility” of infection. So they released me with the instructions to see my surgeon and infectious disease Dr’s in 2 weeks for another check up. I’ll start meeting with the oncologist soon to plan the next rounds of tests, and ultimately the next surgery.
SO.. I’m still teaching next year. I just won’t be doing anything in the Spring. I’m still writing, and I’m planning workshops for the rest of 2017. I will be heading to Iceland mid Feb (before the second surgery) to teach art yarn spinning to an amazing group, and then I’ll be back teaching in the Summer and Fall!! I also have some very exciting news to share about my weaving studio.. but that will come in another post. I can say there will be a lot of weaving in my future.
The reality of it is I went to the closest hospital, which was one that was out of my network. I am now caught in a web of in network/out of network/balanced billing. My current out of pocket is approaching $35,000 and that’s before the second surgery. I can only laugh now as the bills come in. I am blessed I have someone who is helping me with appeals, but I will be paying at least 10-15 grand. My husband’s amazing craft beer shop did a silent auction and fundraiser, Abby Franquemont and Chad Tudor- the couple behind the new Espinner from Questionable Origin auctioned off one of their espinners and gave me the proceeds, and the fiber community hosted an auction fundraiser for me as well. I am very thankful to all who donated and bid. My friend Ashley, from howtospinyarn.com, also set up a very kind youcaring fundraiser page for me, where people can donate, that will stay active through the second surgery. I have no words for all the amazing messages of support and healing that people have left for me. I can’t express my thanks enough to everyone who’s already donated. I somehow even “won” a $500 donation from YouCaring itself!! Every penny helps and I can’t express enough how not worrying how I’m going to pay the mortgage has helped me recover. I hope to be able to start back doing massage soon.. but not earning any income for the last 3 months has been very difficult to keep everything together. My husband has 2 jobs and is amazing. He’s been doing everything from scooping the cat litter to emptying the dishwasher and doting on all my needs.. on top of paying as many bills as he can. Everyone who has sent me supportive and encouraging emails, facebook messages, cards and texts.. I can’t tell you how much it all means to me.. how it keeps my spirits up even on my darkest days (and let me tell you, there have been more than a few!!)
SO.. that’s the entire story. And I tell it because I learned something very important throughout this experience. I know it’s “cliche” to say treasure every day and kiss the people you love and tell them that you love them… because you never know when it’s the last day.. but when you get taken to the hospital because you think you have really bad gas or maybe a burst appendix, and you wake up from emergency surgery 6 hours later after being almost dead… it really becomes clear that even though cliche, it’s true. SO use the good china, and wear that amazing dress you got, and SPIN THAT FIBER you’re hoarding– because you might not be able to tomorrow.
I love you all. And I can’t wait to hug you at the next festival, workshop or event!!