I have been pretty busy in and out of the hospital, in cleveland and at home :(
I was admitted to cleveland clinic on August 7th and discharged on August 25th.  I went to my appt with Dr. Kroh and then they sent me to see the nutritionist the next day and as soon as she saw me, and how much weight I had lost she said I needed to start J-tube feedings and it had to be in the hospital because it is dangerous to start j-tube feedings if your nutrition is compromised that badly, and she said it would only be a couple of days to get me stabilized, so my daughter and I had a hotel room, but there was no way I was sending a 16 year old to stay in a hotel room by herself and my hubby couldn't come up for a couple of days due to work, so they let her stay with me in my hospital room.  I had to go through the ER to be admitted, but I had the most fabulous nurse named Becky, I will never forget her, she was the best.  The nightmare started after that.  I can only guess that the tube feedings went so badly because my small intestine is not absorbing, but in a week they tried about 5 different formulas with disastrous results...uncontrollable vomiting, pain, and diarrhea...after that week I begged them to stop doing anymore tube feedings and try TPN, so on August 20th they placed a Hickman catheter (IV in the chest) and started TPN (IV nutrition/vitamins)...I spent 3 weeks in the hospital, got out on August 25th...it was way too long...more to come, laptop battery croaking...to be continued

 I pray that my strength in my body can hold out long enough to get on our train from Chicago to Cleveland. It leaves at 7pm and arrives about 2am Ohio time. My appt is not until 3pm so Toni and I will be hanging the do not disturb sign at hotel so we can get some sleep. I'm not yelling at anyone, but if the doctor left this j tube behind to use in emergencies and has passed up the biggest emergency by not using it, then I want it out!! These feelings are so terrible, you feel like you're starving to death; I feel spacey, lightheaded, sweaty, shaking, and all the low blood sugar crabbyness that you can imagine. I'm really nice to be around. We went to a wedding last night (scheduled before the surgery for some good friends), and I couldn't eat anything the first 2 courses, but the entree came and mine was a beef filet in gravy, mashed potatoes, and asparagus. It looked and smelled so good. I ate 4-5 bites of mashed dunked in gravy, my hubby tried the filet and said it was amazing, so I tried a microscopic piece that I chew thoroughly (it was amazing), but I skipped the asparagus.  It went down ok, but by the end of night I was so full of painful gas that it was scary. I'm scared about traveling today, but my daughter is with me and I know she's got my back and luggage! I'm going to take advantage of Amtrak's red cap/golf cart service to get us and our luggage to the train (it's a long walk down a narrow walkway).  There will be some heavy discussion at doc's office to get this right. I'll keep you guys posted. Adios for now. All aboard and choo choo! 

 Well, a week after the ER visit I'm still in the same shape, it's very frustrating. I have gotten a phone call almost everyday from the PA at Dr. Kroh's office telling me how he keeps leaving msgs for the nutritionist that Dr. Fenske's office referred me to but not getting a return call, I told him "welcome to the club". My real question to him is why do we need the nutritionist? Why hasn't he just ordered the tube feedings? Are they waiting to see me in person on Monday to see how bad I look?! Toni & I are getting on the train Sunday for Cleveland and I'm sitting here shaking and weak after helping Toni give the cats a bath (which contrary to what would be the norm, cat bathing in our house is pretty low impact, some unhappy yowls, but no real physical challenge). It makes me pretty nervous to get on a train and travel, I'll try not to think about it. 

 I had the complete gastrectomy with Roux limb reconstruction and J-tube placement on July 6th at Cleveland Clinic with Dr. Kroh.  It was a butt-kicker, but I knew it would be.  The surgery went fine, and I'm sure Dr. Kroh has seen a lot of weird stomachs, but he said mine was very bizarre...spongy and lumpy, kind of like a muscle that has atrophied from lack of use.  I spent 12 days in the hospital.  I needed 2 units of blood after surgery, by blood count had dropped below 8.  I was also experiencing tachycardia (high heart rate), at rest my rate was about 125, and if I got up at all it would jump to the 150's.  I think in the end they chalked it up to surgery stress, loss of blood, and pain.  Pain, that's one I could do without...it's been 3 weeks and I'm still in so much pain.  I also had some atelactesis while in the hospital (collapsing of the alveoli in the lungs due to not being able to take a deep breath).  I have a huge incision from right under the breast line that goes beyond the belly button.  I still have my staples, getting them out on Monday.  I had 2 drains which they removed right before I left the hospital, there was one that was super long because it went all the way around and behind the liver, and I believed it when they took it out, yowsa!! I was on full J-tube feedings when I was in the hospital, but it's better to eat through your mouth than a tube so they sent me home without them to see how I could do on my own.  I haven't done too well, I can only eat or drink so much, it's very tight in there with esophagus straight to small intestine, no real pouch.  I went to my local ER for dehydration on Thursday, got 3 bags of fluid (needed 2 before I could even pee), also had ketones and protein in the urine (a sign that your body is using its own reserves to live).  They only let me go home because they had gotten a hold of a resident at Cleveland clinic that agreed they would talk to Dr. Kroh the next morning and get the home health tube feedings reinstated, unfortunately that never happened.  Dr. Kroh was in surgery all day, I'm still trying to sip what I can and take small bites of pudding/yogurt/anything that will stay down, but I feel like I'm back in the dehydrated gutter I was in on thursday, muscles don't work and twitch, and very little sleep.  I'm trying not to look at now, I am looking to the future and having faith that this will help.  I saw a chef on TV the other day and he had his whole stomach and 95% of esophagus removed due to cancer about 5 years ago and other than being a little thin, he was eating and really doing well.  It gave me hope to see that, a lot really.  It's hard to come across people like us, and that's why I feel like this blog and website are important...I don't want anyone to feel alone, we never are, there's always someone out there that can empathize and you just never know who you may help.  Again, I have to thank all my family and friends who keep pushing me to the next step.  This is a really difficult hurdle for me, and that's why it has been a bit since I updated.  I hope this finds you all feeling better and at least on the right path to wellness.  Hugs, Jules

  I'm in Cleveland, we are trying to get in as much family time as possible while we are here, keeps some of the kids' anxiety down, but I can tell they are anxious and nervous. I hate that they are feeling this, it sucks. I want to take it all away from my family & friends and keep it to myself. I'm sure you all feel that way sometimes. I'll keep you posted as I am able to after surgery, it's a big surgery so I don't know how long the surgery will be. Thanks for your support & prayers Hugs