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

blood clot

Last night Tim and i went to the ER because my picc line was causing me a lot of pain. I had no swelling or redness just pain, and could not move my arm. They did a ultrasound to rule out a blood clot, unfortunately i have a blood clot that goes from my arm into my neck. I guess they are not that worried about it moving since it is rather large. They removed the picc last night and it was extremely painful but i am so glad its out! I don't think i am going to let them put another one it, i have given them both my arms an infection a blood clot and almost all my patience. I have surgery on Thurs and next Monday and they just want to make sure i am getting good nutrition. I will have to give my self shots of blood thinner everyday in my stomach. The blood thinner won't get rid of the clot my body should break that down on its own, but it will just make sure i don't form any new clots. They had to draw so much blood yesterday and some had to be sent to harborview for some special tests, every time harborview would get my blood it was clotted and they wanted new blood. Finally around 3 am after the 5th or 6th draw it worked. Tim stayed with me all night and will be staying until we know more. All my love

Mary

This week

This weekend has been good, Tim and I went over to see Melanie, Vaughan and Fiona tonight and we had such a good time, and an AMAZING dinner! I have been able to eat more lately and am loving every bite. We are cleaning the buildings and just organizing things, perfect for a rainy weekend. We have been so lucky they company that we manage the buildings for has been so incredibly kind to us, and we are so thankful! I have an appointment on Monday for blood work and a check up. Thrus i go in for another throat procedure and the next Monday i will have my gallbladder removed. After this next throat dilation we will see if i need more and how many. I am still tired but am feeling good! I still have a picc line in and i hope to have it out by the end of the week. My hair is growing back so fast, and dark! I am feeling better and am gong to start getting more involved with the buildings and sign up for classes in March. Its good to feel like things are kind of getting back to normal...oh how i miss normal! All my love

Mary

Not as planned

When i woke up from surgery on Tues i was in so much pain, they decided it was best to admit me. I spent Tues-Fri night in the hospital. I guess the surgery did not go "as planned" i just had some bleeding and other things. I will have to have at least two more done. The day after surgery although i was in so much pain i was amazed at all that i could eat but the next day i could feel my throat closing up again and the pain was awful. I am hoping the other surgery's will go better and that this stricture in my throat stays away. I am home and resting. The GREAT news is the Fanconi Anemia test came back negative!! I feel like a huge weight has been lifted and now all i have to do is fix my throat and have my gallbladder removed and all should be great! None of this was part of the plan and i have to admit my patience is getting thin and i am starting to get frustrated. I almost feel like i am at the same place last year with a huge thing in my throat and not able to swallow and in pain. But i do not have cancer or a life threatening disease so i am so incredibly thankful for what i do have! All my love

Mary

Surgery tomorrow

Tomorrow my Dad will take me to Children's at 7:45 so i can have surgery on my throat again, to dilate it again. I don't think i will be admitted but they will decided that depending on how the surgery goes. It shouldn't be long, and i hoping the pain will be less this time as well. I am so just excited that i can actually swallow foods again! This might be #2, but they have warned me that i might need more surgery's and that it is likely it will close up again but as long as they stay on top of it eventually it should go away or something like that... no test results back yet. I still have the PICC line in and hopefully soon it will be taken out! I hope you all enjoyed the wedding photos, we had such a great time and looking at the photos it gives us so many amazing memories! All my love

Mary

Wedding photos

infection picc line and more!

On Sunday i noticed that my arm was swelling and was very painful. We went to the Er and the look the picc line out, and it was extremely painful. They wanted to put another picc line in but i refused and then they wanted me to take antibiotics and after about an hour they convinced me to take antibiotics once they told me i could two one for the infection and one to make sure that i didn't get cdif. The antibiotics made me very sick and i could not hold any food down so i have stopped taking them.
At my appointment on Tues with the ENT dr he told me how large the stricture was, and how i might need 10 surgery's to get it back to normal over time, but that i might be lucky and two might work fine, and that i was lucky it didn't close completely.
At my appointment on Monday my nurse made sure to get across that i needed a picc line just to get me though the next couple operations on my throat so that i could get nutrition. Funny they care now that the found out how narrow my throat is. So yesterday i went in to get picc line inserted this time they used ultrasound to make sure it was going into a good vein and going to the right place. Hopefully i will only need the picc line for week or so. I just starting to get stubborn i want to make my own choice when it come to my heath care. I was maintain my weight for weeks after my wedding when my throat was only 3cm large i am almost certain i can do it now! I have appoitnemnts on Friday as well, and surgery on tues and i am hoping it goes well.
No results from any tests are back yet. All my love

Mary