Wednesday, November 2, 2016

My 2016 stay at the Cherokee Hilton, the entire sordid tale.....

....intrigue, deception, worthy of a best seller, well, perhaps not, I might be exaggerating just a scoosch. As I said before, Saturday went pretty well, I was out and about with Bruce, Sunday morning was a harbinger of bad news, I should have been prepared of what was to come. I spent the entire day cocooned in the prayer quilt and dozing. The sh crap hit the fan on Monday morning, Bruce was gone with chores and we had an appointment at the Specialty Clinic in Cherokee for blood tests and wellness check, which I failed miserably. While waiting for Bruce to come in I was trying to eat and drink and suddenly was so light headed I couldn't control my muscles and first staggered around and fell over the lap top stand, nearly knocking it to the ground. I headed for the bathroom and never made it, the next thing I knew I was on the living room floor and it felt so good I just laid there. Bruce came in a little early and I was like the old lady on the commercial, "Bruce, I've fallen and can't get up." 

Of course he felt terrible for not coming in sooner and managed to drag me upstairs to the shower, I was so weak I could hardy wash myself but anything was better than nothing. Bruce patted me dry, dressed me and dragged me back downstairs and into the car. It was so weird, in the bathroom even my vision was wonky, it looked like the room was full of bubbles. The Specialty Clinic rallied the troops when I showed up looking like something the cat dragged in, Carey put me in a wheelchair, bypassing the scale and straight into a room. She knew I needed fluids but couldn't do anything until the blood test was in and a Dr. read it so we went home.

And waited, and waited, and waited.....

Dr. Lunning was calling the shots from Omaha to Dr. Rao's office in Sioux City, Stacy called about 1:30 to see how things were going and it was apparent things were going steadily downhill. She said to give Dr. Rao's office another hour and then call, they should have the fluids on order. When the call came, finally, it was a nurse from the office telling Bruce to take me to the emergency room and that is not what we wanted to hear. We had a similar experience in 2014 where we spent hours for things to happen in the emergency room. Dr. Harrison, my former MD, who now just fields emergency room calls, was on duty and she arrived soon after we got there but everything moved with the speed of a sloth, who was tired and had a sore foot. They didn't get an IV bag hung till 5:00, I'm so sorry, Alex, you told me that Gatorade was a cheap IV, I tried, I really tried but when nothing tastes good, it's so hard.

They kept popping in from the party that was going on at the desk, it sounded like it anyway, they were yukking it up and promising me that "they would get me upstairs and comfortable soon." At
5:30 I insisted Bruce go home, he had chores to do and it was obvious I wasn't going anywhere fast. I finally go to my room at 7:98, I know because Bruce called and I looked at the time, I was in a rather surly mood by then and none too nice to the nurse who kept asking me interminable questions, the very same questions I'd just spent answering Dr. Harrison. Thank you Obamacare, nurses can't do what they do best, they have to follow a strict guideline of Government mandates. I said to the nurse, "now I now you have that information on your computer that you accessed from my admitting  record," she said, "Yes, but I still have to ask you." Then she pulled out a scale, I said, "I was just weighed this morning at the Specialty clinic," and got the same automatic response, "Yes but they make me do it again anyway." Like I was going to gain or lose an ounce or two was the least of my problems then. One of the questions was, "Do you have an Advance Directive?"
 "Do you want to be resuscitated in case of an 'event?'  
"(DUH!) Yes, do you think I've gone this far to just throw in the towel?"
That would have kind of defeated all the crap I've been going through."
Dr. Harrison asked who I wanted to see on the floor as our PA, Brenda, doesn't do that, I chose Dr. Vandelune and that changed things for the better. Dr. Vandelune and Dr. Lunning look like they could be brothers from a different mother and he is just as caring as Dr. Lunning. I know he wears cowboy boots and heard him coming down the hall later on Monday morning before he knocked on the door wearing jeans and a shirt, come to find out it wasn't his day to work but was willing to come in to see me. He listened to our tale of woe, suitably outraged at the long wait in the ER. Dr. Vandelune found I had a U.T.I so started antibiotics along with the all bags of fluid that had been running into my port. He also wasn't very happy with the response we got from Dr. Rao's office but did say that you can't just go by lab reports, you should have a face to face visit with the patient. It made sense but I still felt let down by her office.

Carey came to see me around noon, she said she'd been calling the house since the day before, getting no answer and knew something was wrong. She ended up calling Bruce on the cell and found out I was incarcerated. Carey agreed with us, I needed a doctor right there in the hospital for something like this, she never did get a reply back from Dr. Rao's office either and she thought Dr. Vandelune would be glad to do it. The Specialty Clinic works with all the Dr's, and Dr. Lunning is running the show from Omaha. I know he wanted to keep Dr. Rao in the loop but it did me no good to have her in SC when I desperately needed a doctor here and now. 

I spent another night, trying to eat and drink, it's such a struggle, napping from the exertion, reading my tablet, watching Hallmark Christmas shows and trying to be the model patient to make up for my surly mood on Monday night, thanking them for each little kindness. I also made a shocking discovery, I spent all summer being hairless, not having to shave my legs was a bonus. After my last chemo in August, it wasn't long before the hair started to regrow, it was so light I couldn't see it but if I was out in the wind, wearing shorts, I could feel the hair rippling in the breeze. A really weird feeling. But I digress, as Jeannie would say, I was lying in bed looking at my bare legs when suddenly I thought Sasquatch was lying there, I couldn't believe it, when did THAT happen and why didn't I notice? I was appalled and disgusted but much too weary to even consider shaving the hair away. Besides, with all the stuff I've been given, it will soon fall out on it's own.

Another observation I made was, when did I inherit my brother, Tom's toes? Tom has the longest toes I've ever seen and that was what was looking back at me from the foot of the bed. Or maybe it was the drugs.

This morning Dr. Vandelune was the yuppie doctor in a suit, he asked if I was ready to go home and I was so ordered another IV antibiotic and some pills to take at home to rid myself of the UTI. I asked him if he would be willing to be my go-to MD here and he was happy to do it. He'd been to the Specialty Clinic and got the entire story and felt I was making a wise decision and we shook on it, I refrained from spitting on my hand as that might have grossed him out. Carey stopped in and told me to  call Dr. Rao's office and Stacy in Omaha and inform them of my decision and it is my decision. I don't want to, no I won't go through this again.

The discharge papers we printed in record time and the line pulled from my port, I was dressed and ready to go when Bruce got there. We picked up my script from Main Street Pharmacy and got home about 11, Bruce decided to eat then and go back to the field. Poor guy has to scrounge, I have a good supply of Rosanne's chicken and noodles that keep me going, and a fridge full of Gatorade, I'm really trying, Alex! I decided while he was eating his hotdogs, and he informed me he only ate 2, not 3 as I'd reported in an email, to make my calls. I couldn't get through to Dr. Rao's office, what a surprise and left a rather emphatic message to please call me back ASAP. I was looking for Stacy's number when the phone rang and it was a nurse from June Nylen where Dr. Rao has her office. I explained everything to her from the start and learned that they never did get hold of Dr. Rao on Monday, she was in one of the hosptials and unable to contact her. So they had another Dr. in the practice, whom I've never met, made the decisions that Dr. Rao should have been on top of. 

When I was going to Storm Lake, I never knew who I would see in their practice but I was also doing all my chemo down there. It's totally different now. Dr. Lunning is making decisions and expecting Dr. Rao to follow through from here and it didn't happen. If I could have had a Dr. in Cherokee, I would have been seen right there at the Specialty Clinic and got the fluids started, I don't think I would have spent 3 days there. Even if Bruce had to take me back on Tuesday, I would have been better off. There are just too many cooks in the kitchen, so to speak and that was ending. I told the nurse I didn't want to burn my bridges with Dr. Rao, who knows if I need her in the future but right now she is not meeting my needs.

And it's ALL about me and I'll be the first to say it.

I have a great doctor 11 miles away and I feel good about it. My second call was to Stacy, got her on the second ring and explained it to her and she will relay it all to Dr. Lunning. I can't imagine he will disagree with me but this might be our first argument, after all, in another two weeks I'll be back down in Omaha for a marathon chemo session and I want to be more prepared for the after effects.

I called Carey and thanked her over and over for her compassion and professionalism, she is an outstanding example of a nurse putting her patients first. I thanked her parents, (Delmer and Cindy), they brought their kids up to be such great adults. I've always loved Monica who works there, the two of them make a formidable tag team and I know I'm in great hands. After all that, I had a small helping of chicken and noodles, took my water and a bottle of Gatorade, my book and Zoe to the gazebo and sank gratefully onto my nest out there. After several days of damp, foggy weather, the sun came out and we spent all afternoon there with time out for a nap.

I'm feeling 100% better than I did on Monday and even cleaned off the table and counter, put things away that Bruce didn't know where they went, filled and ran the dishwasher and paid a bill. I'm looking forward to things getting back to normal, we have another appointment tomorrow for a blood test and I have no doubt the results will be good. 

And just to keep life interesting, Zoe ran through the living room with a mouse clamped in her jaws, heading for the upstairs bathroom! Bruce looked at me and I looked back at him, hey, mouse dispatching is the man's domain. He reluctantly left the World Series, after putting the DVR on hold, grabbed a boot and headed up. The mouse will not make it home to his family tonight. I'm extra grateful I did.


  1. Poor Julie, what a disaster! I feel I should have somehow known about your troubles; not that I could have done much except I sure could have sat in your room and ran interference for you. I think that it is terrible they made you wait that long in the ER, well really, the whole ordeal was ridiculous! I do not understand why they could not get hold of Rao; even in a different hospital, she should have been able to be contacted. Hopefully, this will not happen again! I am sure Vandelune will be there for you in the future. I know he is not an oncologist, but he can get instructions from Dr. Lunning, and at least you can get hold of him! Hope things improve for you from here on out! Hang in there, honey! Love, Janet

  2. Well, Julie, that sounds horrible! They never got hold of Rao??? Totally unacceptable! You definitely made the right decision, Dr. Vandelune sounds caring and ACCESSIBLE, that is huge.So sorry to hear how awful things went for you. So glad they're better now!

  3. I am so sorry you had to have this experience! The blessing that came from it is now you know you have someone easily accessible to you and so close to home to follow through on Lunnings orders! There is nothing like being close to home for these things that pop up, and it sounds as if there is a great staff there perfectly capable to follow the orders from a doctor who is ACCESSIBLE to YOU. Good girl. It IS about you.... you are more than a number! Cheers to you!

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