Eat , Shit and Pray- Ana Stenzel 9/8/11
So our much anticipated Bay Area film gala is in tomorrow, and I decided I look like Olive Oil. You remember, from the Popeye cartoon? That damsel in distress whose clothes were always oversized? That’s me. I’m 20 pounds lighter than I was in June, pale from being indoors, and my tits and ass are gone; not that I really ever had any. My bra has become a personal floatation device in the event of a water emergency and I’ve discovered that multiple bones actually make up the tail bone. I’m sorry, Hollywood, but too thin is NOT attractive.
Since my last blog post entitled “Woman versus Golytely” I escaped from Stanford hospital in time for our Los Angeles premiere of the Power of Two in the Docuweeks film showcase on Aug. 19. I left the hospital after six gallons of golytely and five roter rooter procedures up the you-know-what, still in pain and feeling distended yet determined to be a part of one of the most exciting events of my life- the world premiere of our film in LA. I left with a hopeless attitude of pending gut-doom yet I had the need to leave the hospital so I could get some calories and resume my meds, which were oddly given very sporadically to me in the hospital. The doctors at Stanford also agreed there was little else they could offer without surgery.
I survived the first 2 days in LA drinking milkshakes and soups, then tried my luck on a small amount of rice, tofu and shrimp. Within hours I was doubled over in pain, thinking “oh no, here it comes again” and once I could not walk or stand anymore, I held that famous white flag of surrender that CFers hold out on till the end, and headed to the LA County / USC Hospital emergency room, which was a cultural experience of its own.
Now growing up in LA, as a child of a UCLA professor, we had always poked fun of USC as the University of Spoiled Children, or better yet, the University of Soiled Condoms. These stereotypes were completely overturned by the exceptional care I received there and I have now named USC the Univ of Super Care. My meds were all delivered on time and in the right doses, the infection risk protocols for transplant/CF patients were phenomenal, the phlebotomists actually found veins, and the staff was kind, professional and attentive. I even had my bed linens changed almost every day. At Stanford, I’d be lucky if I was offered a bed change once a week. Sad, but my personal experience. The best part of USC was that for compliant, stable CF patients, our enzymes AND insulin pens are left at the bedside for self administration so my sugars were so well controlled, unlike at Stanford. They were so on top of checking the sugars. Best of all, they offered me IV nutrition and surgery when the pain and starvation misery became unbearable. It had been almost 2 weeks since I had eaten much, and I was withering away. I felt so weak and can’t recall a more miserable period in my life. Even transplant was easier, since we had the euphoria of prednisone and the elation of being of being able to breathe to ease all discomforts.
So I had emergent bowel surgery on 8/24/11. I had to sign my life away with the consent, but at the rate I was going, I felt like I was going to die anyway. It was like being in labor for two weeks straight, with strong contractions every 3 minutes or so, but in my case, the contraction would be followed by a LOUD gut noise of squeeking, churning, fizzing, popping. Geezus…. can’t anyone see this is NOT normal? WTF….
So into the operating room I went, with the beauty of anesthesia and pain meds. After 2 hours I awoke in the ICU where I stayed for four days. My husband, Trent, was amazing. Truly living up to the vows of “in sickness and in health” he slept in a chair /cot for 9 days at my side and was my voice and gopher for all my needs. He was meticulous of keeping records of the doctor’s names, updates and advocated for my nutrition. Poor guy had to see me barf and use the commode on more than one occasion. Now that’s love.
So according to the surgeon, there was a baseball like mass removed from my small bowel. So after two weeks of labor, a cesarean section from hell, all I get is mass? No Baby??
The surgeon thought the mass had been there a while. That explains a lot- the chronic blockages and abdominal pain, and the lack of responsiveness to conventional CF gut therapies. My first thought was “ I KNEW IT!!”Always trust your gut, no pun intended. None of this showed up on any CT scans, barium swallows, colonoscopies, endoscopies, x-rays that I had at Stanford or USC. Imaging studies are limited, and when all else fails, cut me open. I was told imagining the small bowel is like looking at a bowl of spaghetti- if there is a meatball hiding in that bowl, there is no guarantee that it will be found.
Last week Iearned that the mass is a adenocarcinoma – AKA small bowel cancer. WTF. Trent and I had a good cry, but then I put my big girl panties on and got over it. Cancer is not unexpected. After 11 years of taking immunosuppression medications, I am, like many long term transplant survivors, a medical disaster waiting to happen. I’d take cancer over rejection any day since at least there are treatment options. Transplant is the gift that keeps on giving in more than one way; so as long as I can breathe I am not worried. My mom had the same cancer in her colon in 1997 and is fine, so there is a hereditary component. In addition, there is plenty of literature showing an increased risk of bowel cancer in people with CF and carriers of the CF gene. I just wished my doctors had paid more attention. I had all the classic symptoms- weight loss, fatigue, low hematocrit (anemia), change of bowel habits and chronic obstructions, unresponsive to traditional CF enzymes and laxatives. I just hope anyone with CF reading this can learn from this and really advocate for your needs if this happens to you, which I hope it doesn’t. Ironically the risk factors for the general population for bowel cancer include: obesity, smoking, lack of exercise, alcohol use, age over 50… all of which don’t apply for me. So this is fucking crazy.
So in a few weeks I will start chemo and my health insurance company will hate me even more. This will be yet another “control-alt-delete” into my lifestyle, where I will become a full time patient and enter new territory- the C word that has so much fear and stigma in society. I really hope that people don’t freak out to much reading this and I certainly do NOT want pity; I think people’s reactions are often merely a reflection of society’s views of cancer, and truthfully after 2 lung transplants, diabetes, CF, … I think I can handle it, Godwilling.
So I decided to name my scars. The first one, a 1972 Kaiser hack job to fix my bowel blockage at birth, is named WHAT. My second beautiful transplant scar, which saved my life in 2000 and 2007, gets the name THE. This last scar, about 7 inches long, crosses my first scar vertically, through my now non-existent bellybutton down to the edge of my pubic bone, is called FUCK. Meet my scars, everyone: WHAT, THE and FUCK. That’s all I have to say.
I’ve taken medical leave from work yet again, thanks to many supportive co-workers, and I do three things at home: eat, shit and pray. I eat because I have to gain 20 pounds or risk get a feeding tube; I shit because that’s what happens with gut surgery and getting things going again. And of course I pray, because with God, all things are possible. I sincerely believe that. Eat, Shit and Pray. Sounds like the name of my next book? Got you beat, EIizabeth Gilbert.
I want to thank so many of you for your wonderful support and care during the last few weeks. Through it all, I felt the LOVE from all of you and that kept me going. After all, isn’t that what it is all about? I truly appreciate the calls, emails, food deliveries of so many. I am so blessed to have such goodness in my life.
I look forward to the Bay Area premiere of the Power of Two tomorrow and hope that some of you can join! I am finally feeling strong enough to attend so I will be there! For those from DC/ Richmond, please join us next week!
Lastly, I’d like to leave with a personal version of the old traditional German children’s folk song “There’s a Hole in the Bucket” which I heard twice in the last month- at CF Retreat, and during a movie of Harry Belafonte’s life.
Ana’s Version of “There’s a Hole in the Bucket”-
There’s a hole in my belly, dear Isa, dear Isa,
There’s a hole in my belly, dear Isa, dear Isa.
Then fix it, dear Ana, dear Ana, dear Ana,
Then fix it, dear Ana, dear Ana, fix it.
With what shall I fix it, dear Isa, dear Isa?
With what shall I fix it, dear Isa, with what?
With Miralax, dear Ana, dear Ana, dear Ana,
With Miralax, dear Ana, dear Ana, with Miralax.
The Miralax is too weak, dear Isa, dear Isa,
The Miralax is too weak, dear Isa, too weak,
Then use Golytely, dear Ana, dear Ana, dear Ana,
Then use Golytely, dear Ana, dear Ana, use it.
The Golytely doesn’t work, dear Isa, dear Isa,
The Golytely doesn’t work, dear Isa, it doesn’t work!
Then use the other end, dear Ana, dear Ana, dear Ana,
Then use the other end, dear Ana, dear Ana, use it.
My belly’s killing me, dear Isa, dear Isa,
My belly killing me, dear Isa, its killing me!
Well open it up, dear Ana, dear Ana, dear Ana,
Well open it up, dear Ana, dear Ana, open it up!
With what shall I open it, dear Isa, dear Isa?
With what shall I open it, dear Isa, with what?
With surgery, dear Ana, dear Ana, dear Ana,
With surgery, dear Ana, dear Ana, surgery.
There’s a baseball in my belly, dear Isa, dear Isa,
There’a a baseball in my belly, dear isa, a baseball.
Then remove it, dear Ana, dear Ana, dear Ana,
Then remove it, dear Ana, dear Ana, remove it!
There’s a hole in my belly, dear Isa, dear Isa,
There’s a hole in my belly, dear Isa, a hole.
But the pain is gone, dear Isa, dear Isa,
The pain is gone, thank God it’s gone!
Thanks for reading my blog. May you eat, shit and pray well.