admitted

The pain in my throat has gotten so bad that i could not swallow even water. We went to the ER last night because i was extremly dehydrated and had a fever and a lot of pain. I was admitted and put on a morphine drip. Unfortunatly the morphine does not seem to ease the pain, and swallowing is still impossible. My mom will pick me up from children's tomorrow and take me to UW for radation something i am really not looking forward to! All my love

Pain

Wow in the past two days the radiation has really caught up with me. I cannot eat anything swallowing is impossible, it took me 5 hours to drink one bottle of water. I can not believe how painful my throat is. It has surpassed the pain of the tumor! I have pain meds but i am trying to avoid them as much as possible. My nurse will know when i need to be admitted by how much pain meds i am taking. I have never been a fan of them mostly because they seem to make me sick. Once i am taking oxycodone every 6 hours she will give me Oxycontin when i am taking that often i will be admitted and put on a morphine drip. I really thought radiation was going well, but i new this was going to happen just didn't think i would be in this much pain this soon! All my love

Mary

Happy Thanksgiving

Happy Thanksgiving everyone! Wow what an amazing thanksgiving since we couldn't go to Oak Harbor Tim made us Thanksgiving dinner, he made a turkey, stuffing, mashed potatoes, veggies and Deborah made a apple pie! Sad that i couldn't eat the turkey or stuffing in the last couple days my throat has gotten really really sore and swallowing is almost impossible. I am so thankful that next Thanksgiving i will be able to eat everything!! Just having the smell of it all was amazing. Tim bought the super mario bros for Wii and we have had so much fun playing it all day and watching me die every5 seconds. Dinner was amazing and i can't believe that Tim did it all!

I just wanted to thank everyone for all of the amazing support and love, i feel so truly lucky to have so many amazing family and friends to surround me this thanksgiving. Words just aren't enough but THANK YOU to all of you! I love you.
all my love

Mary
P.S. to family and friends the wedding date is July 24th 2010!

update

Today Tim's sister came to take me to radiation, afterwards i felt good so we went to the cheesecake factory and went shopping! Tim is spending the night in Kent tonight and will be taking me to Children's tomorrow for blood work, a check up, chemo and then to UW for radiation and my Dr. Day! Tomorrow is my last day for radiation this week because of thanksgiving! So far so good, my throat hurts really bad but i haven't had any awful side effects yet from radiation. The chemo part is rather easy and because they are only using one chemo drug my hair is starting to grow back. Not that i am not complaining but i am not looking forward to my eyebrows and eyelashes growing back just so they can fall out again after radiation..so i hope it stays. Tim and i are hoping to make to Oak Harbor at least one day this weekend because it would be great to see everyone! All my love

Mary

Just another Monday

My Aunt Maureen left today, and it was so sad to see her go! We had a good week and she was an amazing help!! I only have radiation Mon-Wed this week because of Thanksgiving! I am feeling good and am hoping that this week goes well! I miss my Dad he has pneumonia and hasn't been feeling well for a couple of weeks! I am not sure if i am going to Oak Harbor for Thanksgiving i really want to go but i just don't want to risk getting sick. The holidays just aren't the same without your family!! Either way i will have a great turkey day and have so much to be thankful for! All my love

Mary

Home

After a long week its so good to be home with Tim! I miss him so much, and nothing is as good as your own home! I am feeling ok, my aunt Maureen went with me today before my appointment and i finally bought a wig, its just a quick fix i guess you could say. The one i want takes a month to come in so this one will work and it is fun to have hair again..but is never as good as real hair!

Going good!

So far so good! The first week of radiation is supposed to be easy! My Aunt Maureen is amazing, she has cleaned the kent house spotless, every counter top and place with clutter is now cleaned. Its amazing! Tim came over last night, i miss him so much! He gave me a massage for an hour and got my meds ready, i feel asleep at 8 and woke up at 8:30 this morning the best sleep in a long long time! One side effect from radiation is extreme tiredness, not sure if that is why i was tired but for once i enjoyed the rest! Good news during radiation i will only be getting the vincristine for chemo, so that means no nausea just the neuropathy and other weird side effects but i will take it! We learned in my appointment at UW that the two lymph nodes that where large when i began treatment have shrunk dramatically...that is not good news it means that they where responding to chemo and are likely cancerous. They have altered radiation to get the lymph nodes as well just to make sure they get everything. I guess radiation only works well once, they can't really do it again! Learn something new every day! After tomorrow only 4 more weeks of radiation! All my love

Mary

Time

Home from radiation everything went well. Tomorrow i have chemo and radiation. I am so confused how people have time for cancer. While sitting in the UW waiting room i couldn't help but wonder, does everybody have Aunts that fly in from different states and Dads that come down and sister in laws and fiances that drive them to treatment everyday! How do people still work and go through treatment? How do people that don't have the awesome family and friends that i do get to the hospital everyday and then to two hospitals in one day. I do feel so lucky and at the same time so frustrated! I have to drive to a city that i live in to get treatment everyday why can't i just stay at my home, in my bed and have people take me from there. I do want to be home with Tim, but i feel so lucky to have good health insurance and this is what i need to do! Being at my Mom's is really nice and gives Tim a break, when i am at home Tim just does everything i don't have to lift a finger so probably a good time for him to just relax. But the time wasted driving to and from the hospital when i live 10 min away is driving me crazy! love

Mary

word vomit

Yesterday went well, today and every day for 5 weeks probably will be the same. Radiation is a rather fast process, i just go in every day at 1:40 they give me a pager kinda like the ones you get at restaurants that light up and vibrate when it goes off i walk to the radiation room lay on a table they put the awful mask on but it only takes 10-15 min so not so bad. My Aunt Maureen got to meet every one at UW and see my mask the room and all of the fun orientation stuff. Wednesdays will be fun days i have chemo at children's in the morning and then i go to UW for radiation and its also what they call my "Dr day" at UW so i will meet with my team of Dr's and they will assess how i am doing. I have a feeling that every Wednesday is going to be the same thing, well i feel like crap i just went from chemo to radiation and i probably won't be feeling that great. My neuropathy is getting really bad, due to one of the chemo drugs called vincristine. Mostly in my legs but is now in my hands, I have a lot of trouble walking, drop foot, loss of sensation weird tingling and now i have problems with simple things like typing or opening water bottles or anything for that matter..buttoning something forget it! Not exactly ideal but it will come back someday when chemo is done. My nurse practitioner at Children's said they let you get "really floppy" before they will stop the vincristine...whatever that means. I guess i will be walking on my knees before they will stop. I find myself laughing at all of this, it is rather humorous at times only because i seem to have a very sensitive system so far. I have a side effect that 3% of patients that get chemo have...3% and nothing according to my nurse is within normal range with me. I am nervous to see how this week goes with radiation and chemo and the weeks that follow.
The wedding is becoming more and more of a stress, not exactly how i imagined all of this going expecailly since treatment doesn't stop until June. I preferably wanted my own hair at my wedding, and eyebrows and eyelashes and my normal walk would be nice. I just have no idea, i guess if i am not in the hospital it will be a good day. I have nightmares that i show up and i look like a clown..and poor Tim he doesn't care at this point i just want to get it over with, or go to Fiji and it just be the two of us that would be nice. Its not like i don't want to have the wedding but i just don't care what my bridesmaids wear anymore or what flowers i have or where people sit or what invitations i pick out, its just not a priority. I am just tyring to keep my lunch down and get to tomorrow.

Radiation begins!

Today Tim and i picked up my Aunt Maureen from the airport and we are at my parents house in Kent! It is so great to see her! We have a busy week ahead. I have radiation starting tomorrow and will have it Mon-Fri at 1:40 at UW and chemo will be on Wed around 11:00 at children's. The hospitals are close together so it should work out well on Wed to just go from chemo to radiation. I am so looking forward to getting the first week of radiation done then only 4 more weeks to go. I should be done 2 days after Christmas if all goes well. I have been prepared for the worst (that i might be hospitalized toward the end of radiation around Christmas) but am hoping for the best! All my love

Mary

Better

Today i am feeling much better! Tim's sister Deborah went with me yesterday to look at wigs we had so much fun. I will order one soon, its so weird to have hair on my head. Today we went and bought a card for a little boy that we heard about named Noah that is 5 years old is in the last stages of neuroblastoma (2 1/2 year battle), they are celebrating Christmas next week and his wish was to get a lot of Christmas cards. We picked a singing card, it was really hard to find words to write to him and i started balling in the store i just wish there was more i could do! My only hope is that my card gives him some joy! I feel so lucky and i just wish that every child or person with cancer could have a great diagnosis like i do. The picture below is of Deborah and I! All my love

sick and tired

Sorry i haven't posted in a while! Tuesday was a long day, so far the MRI and the CT scan look good. The results from the PET scan will be back today i think. When i got home Tuesday evening i feel asleep and didn't wake up really until Thursday i was so confused. My Mom was so helpful she kept waking me up to try to get me to eat or take medicine and stayed home from work for part of the day but i honestly had no idea what was going on! I have been very nauseous but it is getting better. My Dad got sick on Monday but he still went to the hospital with me all day on Tuesday and wore a mask! Love him and hope he gets better soon! Radiation starts next week...yay

Tomorrow

Everything is going good, my Dad is here and he will take me to Children's tomorrow. I have a ct scan, pet scan, MRI and chemo tomorrow! We will be there from 9 until 4:30. On the plus side i will never have the 8 hour chemo again, they have cut out one of the chemo drugs and every week will be rather short but the side effects prob won't change all that much but hopefully the nausea will be less. I have started a little cold and cough and am hoping it disappears a cough would be awful during radiation! I am missing my friends and reality starts again tomorrow just hoping everything goes well. My Aunt Maureen will be coming out from Chicago on Sunday and will take me to radiation every day next week and chemo, i am very excited to see her and so thankful that she is coming out! All my love

Mary

The best time

My friends just left and i miss them so much! The left love notes all over our fridge its so cute! We had so much fun just hanging out and watching movies it was like middle school again but better! I don't think i have laughed so hard in weeks! Thanks Alysha and Kaitlin for visiting and Deborah for always being here, Mallory Hagel it was great to see you! Just what i needed my friends! All my love!

Friends

My best friends Alysha and Kaitlin are here! Alysha has come from Oregon and today we went bridesmaid dress shopping with Kaitlin and Tim's sister Deborah!We have had so much fun! The photos expalin a lot! All my love!

The simple things!

Today i have realized how good it is to just enjoy the simple things. It’s the simple things that mean the most, being able to sit down and relax, enjoy a nice breeze to it’s fullest and being able to fully appreciate what’s around you sometimes is just the best! I am feeling so much better, it must be time for chemo ironically it starts on Tues. I realize how lucky i am that i have the rest of my life, and this is just a small period of time in comparison to the rest of my life that i get to live! That's what i keep reminding myself anyway. There is so much i want to do, like become a morning person, finish school, get married, live in a different country, learn a new language, grocery shop more efficiently, save more money, take a hip hop dance class, go camping more, travel to Paris, have a family, a house, dink 8 glasses of water each day, learn how to parallel park a huge buss i have no idea but i am just glad that i will get to try! I just want a simple life nothing huge or fancy just a great life and i realized that i already have one! All my love!

Thankful

Last night i didn't feel very good and i had a lot of abdominal cramping, today my Mom took me to children's and they tested me for c diff again as i was symptomatic again but great news it came back negative! I have never been more relieved am glad to know that whatever is going on is not serious. I am so thankful for every day that i feel good or somewhat good! I have so much to be thankful for and so grateful that the c diff is gone! I am so excited to see my friends Alysha and Kaitlin and enjoy my weekend off chemo c diff and all things medical!

good day

Today Tim's sister Deborah took me to my appointment and i am sure she is learning more about me and cancer and chemo and radiation than she ever thought she would! Actually have good news my ANC rose to 4000 and its great to know that i have some immune system and allowed again to go some places. They did a x-ray since i am still have so much trouble holding down my feeds they wondered if the tube had moved position but NO everything is fine with the placement and that kinda makes me more frustrated as to why i am having so much trouble. Weight is a very big issue and i am not gaining weight and and 6 pounds below their line. If i continue to not be able to hold down the formula they will do something called TPN it is really a last resort, but they have to give me nutrients through my port in my chest, i would have to be in the hospital and its a high risk for infection as its not natural path for food and nutrients. I REALLY don't want that but its not like can really help throwing up...otherwise i would never do it its not like i enjoy it! I am just really trying to keep the formula down and eat all the time, its just a little frustrating and a huge stress. My mom made dinner tonight and Tim and Deborah came over..Other than that i feel good and am excited to try and get a few things done this week! All my love

lazy

The past couple days i have been really lazy but feeling better. I am able to eat more and hold down my feeds. I start chemo again next week on Tues and am not looking forward to it, i also have a ct scan and a MRI that day. It will be a long day. This week i am excited i would like to try to go wig shopping and i have a appointment with my wedding planner on Friday and i am really excited!! My good friends Alysha and Kaitlin might come see me this weekend and i think we are going to try and go look at bridesmaid dresses!! Its going to be nice to get a couple things taken care of that i normally don't really care about when i am going through chemo especially with the radiation combo its so hard to care about the wedding and make it exciting. I am so excited to see my friends and that i am feeling better!