Tuesday, April 20, 2010
I realize that life is not easy and that trials that are given make us stronger but I am starting to feel really anxious and afraid now. My husband lost his job and Disability is dragging their feet on gettin out my retro check back to Dec 30th we have 8 dollars in the bank and an empty refrigerator. I can't sleep I am really scared but on the flip side I know eventually I will get my disability check and things will be a little easier but I don't know how we will get by until then I also have this pending great opportunity with pokerstars and their new tv show The Big Game which tapes in Vegas which is on my bucket list so I am really hoping they pick me to be on this new show. I know in my head the most important thing is my health but I cant stop worrying. My kids are asleep and in bed and hopefully oblivious to our stress and I hope it stays that way I cannot take one more day of red tape with government programs designed to help people like us who are struggling. Sloan Kettering chose to not release my information even though I filled out the forms for release to disability I left out one line apparantly and that was enough to delay the release of information needed to deliver a decision on my case now tomorrow I have to fill out this form again and hope they send the proper documentation to disability so they can then make a decision on my case. Sometimes I wish it was 1970 and you got to speak to people and no privacy garbage to deal with. It is a full time job to get the benefits I have paid for religiously out of my paycheck every week I have worked for 5 years. This is my money and they are holding on to it as long as they can it is unfair at the least. I am sorry for belly aching but I have been waiting and waiting for this check and every time I think its coming they tell me I left out a t or didn't dot an i. I am so sick of all of this. It is a full time job to try to get help. Well I better get some sleep so I can get on the phone again tomorrow for more paperwork and try to go to social security office tomorrow. Just pray for us that we get through this and hopefully for Tommy to find a job really soon. Fear doesn't rule my life I have to much to be thankfull for but it sure does suck.
Posted by Nicole Rowe at 11:40 PM
Thursday, April 15, 2010
Today I went to get my mold for my radiation. I got there and was whisked of to a giant room and about six people mulling about a cat scan machine setting things up. The room was intimidating but the people are just amazingly sincere and sweet. They explain everything to you step by step and it was somewhat overwhelming. They laid me down on this cat scan machine bed and lined me up with lasers it was amazing how much work actually goes into the preperation for Radiation therapy. After they lined me up they took the plastic that was underneath me and made a mixture of chemicals to put inside the garbage bag type thing that I was laying on. Then they put it under me and it began to get warm and expanded around me to make a mold of my upper body. I had to lay still as possible for about an hour with my arm ovee my head which was no fun but the process amazed me. This stuff turned into an actual mold of my body that they will use every day to line me up in the machine with pinpoint accuracy. After the cat scan part the doctor comes in and explains that he will be lining things up and trying to avoid as much lung and heart and other organs which was so different than I pictured how this would be done. At the end after the mold and the drs calculations they will come up with a plan of attack and we will start radiation shortly after every day for six weeks. First they actually do a dry run without the radiation to see if everything is lined up right and to help with this they gave me eight little dot tatoos on my body so the could line me up in the same position every time I found this amazing. The technology today tells me how lucky I am to be living with this disease in this era. I know I am having the best possible care so I am sure to have the best possible outcome. All and all still scary but I am confident we are doing the right thing and I am in the right hands so here we go off to my upcoming cure and completion of all treatment forever! Amen to that.
Posted by Nicole Rowe at 12:36 AM
Wednesday, April 14, 2010
Today I am going to get a mold of my back done to so that every time I go for radiation I am in the exact same position. Its weird I'm not affraid or anyting like that its just still surreal. I feel like this is someone elses life and I am just playing a part like an actor on t.v. Yesterday I went to see my breast surgeon and everything went great looks good no problems at all thank God but as I was sitting in the waiting room I started to talk to a woman who was just diagnosed very recently and was there to meet my breast surgeon for the first consultation. As I sit there speaking to her I am reflecting back to that day of my own and realized how far I have come. I saw the fear in her heart and wanted so bad to give her a hug and tell her it would be ok. I gave her my blog address and I hope she reads it because this blog is a window to my soul and it shows everything I was feeling along the way and I think it will help anyone who is on the same or similar journeys of their own. I hope somehow that this chronicle is of use to anyone in many situations as I said before its the only way I can make sense of why this has happened to me. I am so glad to be passed that and as far along as I am and still here to blog about it. Definitely what doesn't kill us makes us stronger and I am 100% stronger now than I was on Sept 3rd 2009. Thank you God for the gifts in my life I see them now!
Posted by Nicole Rowe at 9:39 AM
Saturday, April 10, 2010
I am starting to see the light at the end of the tunnel and I feel really good right now. All I have left is six weeks of radiation and healing my mind and body of this nightmarish six months. I have not blogged for a while because it was too painful to go over the things that I have gone through the last two months but now I am starting to feel stronger both pyhsically and mentally so I will be frank and open as I can about the trials of my life. It all started with me having something rare called conversion disorder where my whole body was shaking and moving uncontrolably which scared me to the core . The doctors had no idea what was causing this but I was sure I was dying in my mind the cancer was in my brain. Anyway thank god the cancer was not in my brain or anywhere else thank god and I know this because they did a PET scan which came back 100% clean in the brain and the body so I am officially cancer free! Now for the not so fun stuff like spending 3 or 4 weeks in and out of three hospitals going out of my mind. Even the best hospitals can make mistakes and my last trip to Sloan Kettering for my exchange surgery which is when they take out my tissue expanders and put in my permanent implants was a nightmare. The surgery went fine and my new boobies are da bomb they look fantastic but somehow the doctors forgot to give me enough pain medication for 2 days I never suffered so much pain in my life. I don't know how or why but I somehow slipped through the cracks but I think they flagged me as a drug abuser and treated me as if I was an addict. Finally after two days of torture the pain management team realized their mistake and appologized and gave me the medication I needed to be comfortable thank god. My mind is recovering as well the bad thoughts are coming less and less and I really feel like good things are in my near future. I have a 20 year camp reunion tonight and a 20 year reunion for college on the 30th in Buffalo I am so excited I think I want to die my hair hot pink now that its coming back I want to have fun with it. I feel like a new person I want to look like one. I am really proud of what I have come through and I am definitely a stronger person than I ever thought was possible. I have to thank my mom most of all she is my hero. I have never known how lucky I was until now and I will never take advantage of the way my family just picked me up and held my hand through the worst 6 months of my life. Mom you are my rock I could not ever have come through this without you I know how affraid you were and yet you never showed me you just stood by me and was my advocate when these hospitals fucked me up royally I new I could count on you and I will never be able to repay you for that just know that I know you walked next to me and shared my every trial and took care of me like a tiger protecting her cub. THANK YOU! and I love you more today than I ever knew I could. Now Dad I know I would be out on the street if it werent for your generosity and constant protection you make me think clearly when my mind takes me to that place that is so not healthy for me. Your hand on my face is enough to calm me right out of a complete panic attack or my symptoms of conversion disorder. You make me feel safe and sound in a storm of sorts and I also can never thank you enough I love you more than you know! My sweet sister Liz you have been my best friend it sucks that we don't live closer becaus this experience fixed 40 years of a troubled relationship and you have become my best friend. I feel I can tell you anything and I do now and it feels so good. We are soul sisters and I appreciate you too. Now to my husband and love of my life I dont always say it but you are the best man I have ever known you take such good care of me and the kids I never saw anything like it you just stepped in and took over everything and allowed me to just concentrate on healing myself and never!! worry about my kids I knew they were in exceptional care at all times. You also make me feel like the prettiest woman alive hair or no hair fat or skinny it amazes me how much you love me unconditionally. I know we said vows when we got married but a lot of guys would have jumped ship after all I have been through and you are still there stronger than ever. I know I dont say it enough but thank you too. I love you forever. All my life I just put one foot in front of the other never stopping to look around me the world is a beautiful place and I want to live my life to make a difference starting with appreciation of my gifts from god an then hopefully helping others on their path to recovery. Stop and smell the roses is my new motto I will smile and have fun at least one hour of every day so as not to let a day go by without thanking god for something.
Posted by Nicole Rowe at 12:13 PM