Ng tube...

Today i went into the clinic because in the past couple days i haven't been able to swallow very much. I lost the 4 pounds that i had gained from my last dilation. I choked on a taco last night, i had a piece of ground beef stuck in my throat..it felt like forever before it came up and i realized that it was so much worse than i thought. The surgeon who does my throat dilation is on vacation so i had to get a NG tube until Monday when i will have my 4th dilation done and hopefully be able to eat again! Its not awful having the Ng tube so much as how awful it was to have it put down. Since my esophagus is so narrow its really hard to get it to go down...so something that used to take 2 minutes took over 10 and it was awful. I am home and at least the stress of eating is less. I just hope that next week Monday i get more answers and not just a dilation of my throat, because it seems to work for a couple weeks and then i am back to nothing. Its almost a tease..what do they think i am not hungry. A little preview, oh you can eat enjoy it for a week and then its gone. I am hungry and i do want to eat, hopefully Monday i will be able to....again!

Recent pics

waiting for surgery


waking up


swollen


tired


External pneumatic compression for prevention of DVT

goodbye gallbaldder!

Wed i had my gallbladder removed! I stayed in the hospital for two nights afterwards. I am healing ok just in pain, and am worried that i might have an infection. The plan was to put in NG tube while i was a sleep so the pain wouldn't be so bad, but they couldn't get it to go down, when i woke up i my throat hurt so bad and coughed up blood for a couple days but the pain in my stomach is far worse. I can finally sit up. Eating is going great though, i have been able to eat a lot more food than i thought i would and so far everything looks good. Tim and i really wish we could have attended Brian and Jenny's wedding this weekend, i hope it was amazing and we miss all of you! All my love and goodbye gallbladder!

Mary

Brick wall

I am home and resting. The throat dilation went ok, i am of course in pain and my throat is very swollen and irritated. I have an appointment tomorrow with my nutritionist, the surgeons and my nurse practitioner. Its the same thing every week, gain weight, if you don't you will need a feeding tube. blah blah. I feel that i have been very patient and am tired of hearing what they want me to do, they tend to back me into a corner its an NG tube another picc line or some other form of extra nutrition. The truth is i am just tired of it. I normally am willing to do anything to get nutrition and get though this, the problem is...its just not ending. If Maybe they did the the swallow study back in December when radiation ended when i started to not be able to swallow, or anytime in between December and July most of what is happening now could have been easily avoided. All i had to do was swallow some die and in 2 minutes they figured out what was wrong. It is so frustrating looking back. Instead for 9 months i sat in that office once a week saying the same thing, i can't swallow i cant eat anything unless its water, juice or jello. They came up with the same answers they are giving me now a tube down my nose, a tube up my arm and into my neck or eat. Eating is a much easier option now i must say, but still they need to back off! I am beginning to feel like i am just running my into a brick wall over and over again, and trust me its not fun. I wish it would end. My frustration seems to come in waves, like every time i see Tim eat a burger from our favorite place, or step on the scale, or even look at someone enjoying a nice dinner. Someday this will pass but right now it just never ends! Oh and i ate a piece of pizza for the first time since Nov of last year, it was so much better than i remembered, a little joy in every bite and a reminder that things might just be getting better one bite at a time! All my love

Mary

home never felt soooo good!

I am home! It feels so great to be home. I just can't wait to go in tomorrow for my throat dilation, then i have an appointment Friday, next Monday and surgery for my gallbladder has been moved to Wed. I spent some of the day riding a tricycle around the cancer floor with some of the other kids, kinda fun actually, we did a race...and well lets just say i didn't win. It was cute to see the parents pushing the IV poles and the little kids laughing. Whenever i think i am having a bad day i just look at them, and realize that i am so lucky. I am just looking forward to one week without going to children's. My Mom came to Children's just as i was getting discharged and we went out to eat, it was good and so great to see my Mom. Glad to be home and ready to get tomorrow over with and see whats going on with my throat! All my love

Mary

EAT!

I am hopefully going home today! I have lost 4 pounds since being admitted and having my picc line removed. 4 pounds that i did not have to loose! I have broken my record and am at an all time low, it scares me because i am eating more than ever i just don't understand why i am loosing weight! I am starting to get scared for my health, before i just thought it was because i couldn't swallow or i was going through treatment. I don't really have a good reason and i just want to be healthy. I will do whatever my Dr's recommend even if it means another picc line or ng tube because all i do is EAT, and loose weight. Since last year i have lost over 25 pounds. I thought i could do this on my own, but since Sunday i have been eating non stop and its just not working. After my gallbladder is removed it isn't supposed to get easier so for the time i will just have to do what i can, get help and EAT! All my love

Mary

ready to go home..to come back tomorrow!

I am still in the hospital. Tim practiced giving me my shot that i have to have twice a day, i have to admit its worse when someone you know is doing it. Tim was so gentle i though it was like he was trying to put an iv in my stomach and the nurse just kept saying, just stick it in fast and Tim would just look at me to see if it was hurting. He did a great job. I was hoping to go home today but that is not going to happen, and i have surgery on Thurs and Monday so i am assuming they are going to keep me for a while. If they let me go home tomorrow i will just have to come back on Thurs although the endless questions would end..what have you ate? what have you drank? what are you doing? how are you feeling? does your chest hurt? whats wrong with your throat? Seriously driving me crazy! I have a roommate this time, she is the sweetest 13 year old girl i have ever met, and she has a very rare form of leukemia. Her trials make mine seem so much smaller! She never complains, and what she is going through just reminds me of last year. I have talked with her and her Mom quite a lot, what strength they have its amazing. They were asking me about mouth sores, and chemo and its so hard its like living it over again but worse. Her port got severely infected and they had to remove it, she is having temperatures, and blood transfusions, low blood counts. When her Mom started crying i almost lost it. Its hard having no privacy but almost good in a way, it reminds me of what is important and how lucky i am! All my love

Mary