Happy Halloween!

Happy Halloween! I didn't even realize that it was Halloween until the little boy on the 2nd floor rang my door bell with a bag of goodies for me, it was adorable he was dressed as a knight it was so cute and sweet of them! I went to the hospital today for blood work and my platelets recovered on their own so i didn't need a blood transfusion and my ANC went up from 20 to 600 so not great but a lot better than 20 considering its normally 7,000. Or used to be. I am feeling ok not great i have couple appointments next week! all my love

Mary

ok

i am doing ok, the c diff infection is still not gone and i am not sure if its the antibiotic but i am getting very sick, i can't be on my feeds and am getting really dehydrated even though i am tyring to hydrate as much as i can. i am getting a little upset because i want to feel better and the medication does not seem to be helping if not making things worse. i have no energy and am just getting really frustrated. i go into children's tomorrow for blood work, and i hope to talk to someone then. all my love

Mary

good day

Today i am feeling much stronger and almost myself again! Tomorrow i have blood work and check up appointment at children's it should be a short visit and i am hoping that my blood work is good! Tim's sister in law Amber and their adorable baby Aidan came to visit me today and it was so nice to see them! I am so excited that i don't have chemo this week or next week its nice to know that i am just going to feel better and hopefully get stronger before radiation! All my love!

Mary

GREAT news!

Today went really well, i am totally overloaded on information and it was a long day! They did a scope and it appears the tumor is totally gone!! That is great news and really good to hear. However it does not alter my treatment, i will still have 5 weeks of radiation in combo with chemo, and the chemo until about June next year. So good news but i still have a lot to go through until we are done! Rhabdo is very malignant and they don't want to miss anything, you know tiny microscopic cells and things they can't see. Today they gave us all the info on radiation and it was quite overwhelming. I don't know if anyone has seen the man in the iron mask, but that is kinda what i went through today. They put a hot mask over my whole face and throat area and did ct scans to make sure that they have the radiation in exactly the right place. They mold the mask to your face and for half an hour they took scans they are very accurate but i was about to freak out. It was so uncomfortable i am not the claustrophobic kind but WOW they should use that for a form a torture or something because after a while i really wanted to just rip it off my face and the iv out of my arm and run out of the room screaming! It was a long day and information overload but we got through it. I feel very fortunate to know that the tumor is basically gone and everything that we are doing now is just to make sure its gone and never returns!! long road ahead but great news! all my love
Oh and Dad i love you! Thank you for sticking with me through and very long hard day!!
Mary

uncomfortable

I am doing well, i went into children's for some hydration and my blood pressure is normal and that eases my mind a lot. I am just still uncomfortable and having cramps. Tomorrow my Dad will take me to my appointment at UW, we should be there the majority of the day, i will meet everyone in radiation and they will do a ct scan and some other scans. I am very interested to see how the tumor has responded to treatment. Every scan is always scary i have nightmares that they come back and say its actually grown or now its multiplied and made baby tumors or something crazy, but i know that is very unlikely. Its just once you have someone tell you that you have one, you always fear that there is another one i don't think that fear will ever go away, but i do have comfort in knowing that it would be really rare! Somehow it doesn't reassure me, when my hair starting falling out i thought every weird bump on my head was a tumor my Dr reassured me that they did a bone scan and a PET scan of my whole body and i only had one tumor. Every scan will be scary but tomorrows should be good news! I am just hoping this c diff goes away so i can enjoy my 2 weeks off chemo!!

Aches and pains

I honestly have no idea what is wrong with me anymore. The line between feeling bad and feeling REALLY bad is so blurred i cant actually tell anymore if something is really wrong. My stomach is literally crippling me in pain, and for some reason i have had this sudden onset of soreness in my arms and chest area. Every time i have gone to the ER its strep or c diff infection or something else that puts me in the hospital like a temperature. I am normally really good at telling how i feel but i have no idea anymore if its the chemo the c diff or something more. I called tonight and the on call oncologist just humored my awful aching pain in my upper body, although i don't blame him i don't know what i would tell myself. I have been laying in the hospital for the past 4 days that prob was enough to give anyone soreness but is it normal?? I just took an oxycodne and hope it goes away along with the awful nausea and terrible pain in my intestines. Of course i googled swine flu and i have every symptom on the list besides a temp, but of course those symptoms would fit another list of infections or pains. My throat is always in pain my nose is always running because i have a tube in it i am having awful unexplained pains and nausea is a given. All i know is i never want to be in the ICU again Who knows i am just hoping it goes away!

Tired

Today i went into children's to get hydration and i feel a little better. I am just really tired! I hope i wake up feeling even better! Love you all very much! I am just so glad to be out of the hospital!

All my love

Mary