Yesterday we acquired a new symptom we’d never had to play with before – diarrhea. Further complicating the particularly unpleasant situation was MD Anderson’s processes and procedures that A) created more than a two hour delay between the onset and treatment, and B) required us to save the, uhm, “output” in a small tub for subsequent examination and testing by the nurse.
More than two hours. That’s how long it took to get treatment for the diarrhea. The culprit, according to our nurse yesterday, is MD Anderson’s process and procedures for authorizing all patient medications. Maybe it was some fancy diarrhea medicine only available at the highly-acclaimed MD Anderson facilities, proven to stop the misery faster and provide fewer side effects while contributing less to global warming than any other treatment ever known to mankind. No. It was Imodium. Over-the-counter Imodium, the kind I could buy down in the gift shop, which I would have done had I known it would take more than two hours to get it from the nurse.
Call us crazy if you want but Maggie and I firmly believe there are a few stock items that any well-managed oncology ward should have always within arm’s reach and should be handed out like candy, if needed. Note the use of the word “immediately” in the following:
1) Bags into which puke can be placed immediately upon exiting the mouth
2) Various nausea medicines that can be immediately placed in a myriad of orifices
3) Various diarrhea medicines that can be immediately placed in a myriad of orifices
Remarkably, we’ve come to learn that our thinking on this topic is, uh, progressive.
The room we are temporarily living in is definitely bigger than our room at Seton. But it’s not near, near big enough to share with a tub of liquid poo. Not for any length of time, especially not for more than an hour. Unpleasant isn’t quite the right description for the experience. Fortunately, the bathroom exhaust works otherwise I’m not sure how we would have coped. But we did. We always do. (In my mind during the siege I was picturing the little stink molecules racing outward from the tub, fighting against the negative air pressure created by the bathroom vent. Fighting and winning.)
The poo in the tub was for an excrement examination to check for blood and, unfortunately, they found some. Additionally, sometime around Sunday evening Maggie’s stomach started bloating. It doesn’t hurt but it’s causing some discomfort, both physically and emotionally. Using her own words, it looks like she’s pregnant and her belly button is about to pop out.
After calling the bloating issue to the attention of anyone within earshot, the admitting doctor that appears to be in charge of things scheduled a visit from a GI doctor. He was a funny man (“raised eye-brow” funny, not “ha-ha” funny) who never let us finish a sentence. He questioned Maggie on her original diagnosis and current issues and then signed us up for some type of examination of the exit area, the specifics of which are to be determined but may or may not include several enemas and Golytely (pronounced “go lightly”), the gastro-intestinal equivalent of Liquid Plumber (there’s nothing “light” about its effects.) As of now she’s off the solid foods in anticipation of tomorrow’s appointment. Don’t know when, though, but we are hoping for early rather than later. Before this turn of events we were cleared to head home tomorrow. Despite the disappointment, it will be good to take a peak up the poop chute to make sure everything is as it should be with no new nasties creeping about. After all, that is where this all started in the first place. Maybe if we can get this completed early and they find nothing of interest we can still be snuggling the puppies in our own bed tomorrow night.
Over the last few days we’ve been visited by no less than ten social workers, clergy, and hospital volunteers offering services and “to talk.” Apparently, some of the nursing or other staff have anonymously flagged our record as “in need of counseling.” Maggie is annoyed whereas I’m inclined to think of it as a sweet gesture of thoughtfulness. We are both, however, curious as to what behaviors we are manifesting (or maybe NOT manifesting) that others feel that we should. Regardless, we told the nice social worker today that we are, in fact, just fine despite wide-spread suspicions otherwise and that if someone in the hospital was having issues with our behavior they are welcome to come talk to us about their feelings. Maggie is a counselor by way of both her degree in social work and in law and me, well, I’m more like Lucy from Peanuts except I’ll charge more than $0.05 for advice. Either way, could they _please_ uncheck the little box that says we are in need of “services”?
So we sit. And wait.
Man Chris, a writer you are. You have a calling! As for the oncology ward, I suppose they don’t have those nice little comment cards that you can fill out. And how do you make a suggestion to have comment cards in first place if they have none to speak of? Chris I’m sure you will tell anyone who will listen, “there needs to be a place for barf bags, right here. And here. And here. While you’re at it, put some anti this and anti that next to it.”
Hope both of your afternoon is improving and it smells like roses.
Hi Chris and Maggie,
You don’t know me, but I’ve been following your blog for a long time. I found it accidentally while going through a very painful colon cancer experience with a loved one. First let me say that I quietly say prayers each day for both of you, as well as sending positive energy to you and your doggies. Having said this, I must add that I am horrified by your appaling experience at this hospital – from the procedure (not knowing which lobe??), to the current diarrhea problem. Thank God that you both know how to be assertive. Regarding Maggie’s bloated abdomen, has anyone mentioned ascites to you? Hopefully you will get someone to address why her stomach is swollen and find a way to make her more comfortable. I hope it helps to know that there is someone out there who cares. Blessings.
I wonder how quickly that “tub of liquid poo” would have disappeared if you had set it outside the door of your room in the hall. I’m certain that someone would have been awfully unhappy with you, but who cares so long as it’s not in your room!! Honestly! I’m truly disappointed, but I dare not say too much because I’m so glad Maggie is in the clinical trial.
I sure hope you get to go home tomorrow!
Much love and continuous prayers ….
I meant to say “I’m truly disappointed with MD Anderson’s brand of compassion, but …… “
Chris and Maggie,
Alberto and I have you in our thoughts and prayers and we both think of your guys often. Please let us know if we can help in any way — we can bring air fresheners or whatever, no request is too small…
A Hospital stay is going to have those twilight zone moments. What for the staff is a typical day is for the patient a cumulative stress test. Keep your humor and just help them to better help you as best you can.
After my bowel resection a strange woman engaged me in a conversation that I was just too medicated to have. What I thought she said was that I was going home to an empty and unsafe house. My family returned, answered the not too bright social worker’s standard questions. Then tried reassuring me that our home was still safe fully furnished and that I could in fact recuperate at the Hospital.
Hold Fast, have a smooth and soon ride home.
Don MacLeod
I too can not believe the experience you have had @ MD Anderson!These ‘larger hospitals’ that offer the amazing opportunities of clinical trials, sadly seem to lack compassion for patients and tend to treat them as numbers instead of people. It is a disgrace that your ‘sweetie’ (as you affectionately refer to her throughout most of your blogs) had to correct surgeons as to which lobe should be targeted! Thank God she was able to muster the strength to speak on her own behalf. I guess it goes to show that we always have to be our own advocate and speak up whenever and wherever we can!
God bless you both! I will say prayers tonight that you are both home tomorrow night snuggling your puppies and each other!
Moira
Good ol’ poo tubs! I remember those from when I had inpatient treatment at MD Anderson this summer. After my husband stuck that out with me I knew he wasn’t going anywhere!
I am a cancer survivor about Maggie’s age and have been following your journey since I saw your page on planet cancer. Maggie, I think about you often. Just know you are in the thoughts and prayers of more people you could know. Chris, keep up the good work! I am so happy that Maggie has a spouse as like you….
I hope you are home in plenty of time tomorrow night to snuggle your puppies (and out of MD Anderson in time to miss VRE day- if you don’t know, just ask your nurse:).
Take care,
Jana
Oh lord, Golytely is not so “go lightly”….at least in my case. I started drinking it at 4 pm, I think, then didn’t start poo-ing until 8am the next morning when I had to have the colonoscopy!! But the discomfort of having all that liquid in me for so long was just disturbing. Every time I turned over in bed, I sloshed! Not pleasant!
I agree with Mom, put the dang pot-o-poo out the door! That’ll make ’em come running…course, then they’ll start talking about C.diff (that’s a whole ‘nother story). Anyway, so for your next trip to the hospital (let’s hope it’s WAY far off)…pack the Febreze, too.
Wishing you safely home in time to cuddle in this cold weather with your Niko and Kali tomorrow night, much love and kisses…Belle sends her love too.
can’t wait to have you guys back in austin, soon!!! have a safe trip.
Thinking of you today, and hope you will be on your way home soon.Love xoxoxoxoxox
I sure agree with Maggie with the 3 things all hospitals should have stocked!!! That is so frustrating! I can also relate about the annoyed by the social workers and that sort… I have had the same problem myself… maybe cause we can still smile through all of this? 🙂 Thinking of you guys!
Maggie, just click your heels and repeat after me, “There’s no place like home, there’s no place like home, there’s no place like home”
Prayers are surrounding you both.
I liked Nickie’s suggestion about what to do with that poo tub!
I also like the poo in the hall suggestion. I find it quite curious that so many social workers came by to see you. It almost sounds like a form of voyeurism (as in: How can two people be so positive and full of hope in the middle of a catastrophic illness? They must be maladjusted somehow.) I say…ignore them all, discourage their nosiness, and keep to the plan to come home soon. We all love you!
Much Love,
Apparently at MD Anderson it is easier to get a social worker than Imodium.
Hope you get out today!