Tuesday, June 1, 2010

Half way through radiation and feeling much better than when I was going through Chemotherapy. I put on 20lbs and feel like I am getting fat. My face looks better but my body looks big to me. I feel tired a lot I guess from radiation but I am trying to get through it day by day. I have about 20 hot flashes every day as well it really sucks thats from the hormone therapy I am on. I am starting to get anxious about the treatments ending It feels like we should keep fighting but I have to believe that its all gone never to return. Anyway the light at the end of the tunnel is getting closer which is only a good thing!

Saturday, May 8, 2010

Mothers Day

Tomorrow is Mothers Day and I am excited about it yet looming over my head is silly things like is this the last Mothers Day for me, are my kids going to go through life without a mother and hurt like hell every year on this day. It's hard to keep these thoughts away they just are relentless making every holiday and basically every day at one moment or another a nightmare. I really want to stay positive all the time I just can't seem to do it as hard as I try. My faith comes and goes and I feel sometimes like I am the only one in the world who feels this way right now even though logically I realize thats not true. Today is a why me day I guess. Maybe tomorrow will be better I hope so. I don't know which is worse the physical or mental pain of this thing I am going through. Well lets see how radiation goes. I look forward to going back to Mom's house for a little while. It will be nice to go back for 5 weeks. It will be a happy Mothers Day.

Thursday, May 6, 2010

Today was the dry run for radiation

Today I went for the dry run for my radiation and let me tell you it felt as if I was abducted by aliens and was studied and maneuvered and just felt like a guinie pig. I know I have to do this but the thought of it scares me as well because I know radiation can be damaging in and of itself. I am afraid of the side effects also but I know they will not be nearly what chemotherapy was so I keep reassuring myself on that one. I look forward to the day I am truly cancer free and also free to live my life. I wish I felt a little stronger for me and for my kids I feel like I am pushing myself to just get up and out of bed every day. I think I am depressed a little. I guess that is to be expected under the circumstances. Thank god for my husband he takes care of me and my kids from laundry to cooking to cleaning and more. All the guilt that I have cant be good for me but this is the way it is right now hopefully someday soon I will be back to myself and be able to do mor without getting wiped out. I am sitting next to my son who is singing somewhere over the rainbow and I am kvelling at the cuteness of him right now. Its funny how kids are so resilient he barely notices anything different about me or whats going on in our world.

Wednesday, May 5, 2010

Starting Radiation jitters

I was supposed to go for my first radiation treatment tomorrow but the office called to say we have to do my dry run tomorrow instead of today and start the actual treatment on Monday. I am both nervous and happy to be starting the last phase of treatment. I am hoping to be in the majority this time with little or no side effects. My family and I went to Buffalo and Niagara Falls this passed weekend and it was a great distraction for me. First was my 19 year college reunion which was so much fun but so strange at the same time. I felt like I was in a time warp where I was at my college in the college bars that we would hang out in but I felt like we were there with my parents age friends. Not that everyone looked old but we all look 40 which was the exact age of my parents when I was in college. It was a great time and I loved seeing all the people I haven't seen in 20 years. It seemed as I looked around I did feel different I felt like look at this I have cancer and life just goes on anyway I feel guilty for even saying that out loud but it is how I felt. I know logically that life does go on but I also feel like I wear a badge and that that badge is cancer which made me wear a wig which made me tired which made it impossible to drink and have the same good time as everyone else there. I did drink a little and I did have a good time I just wish I was finished with all my treatments and completely healthy. Anyway we ended up doing the tourist thing and going to Niagara Falls and doing a guided tour which was amazing. We went on this boat that goes almost all the way in to the mouth of the falls and me my husband, my niece and my kids had a blast but it was a little scary. The boat was rocking and rolling and we were getting so aked by the mist and waves made by the falls. We took a ton of pictures which I am happy about hopefully my kids can remember this trip forever. I needed to go some of the way by wheelchair though because I am still anemic and my strength is still not up to where I could do this without any help. My husband and my niece pushed me and that was nice otherwise I would have had to stay on the bus. I am so luck to have the family support that I do and I will never forget that it is what propells me through this. I am curious to see how this dry run for radiation goes tomorrow and talk to my handsome doctor about my treatment again. I am sure all my questions will be answere and It won't be as scary as it seems right now I will just keep praying for the best and hope that gods hands will guide the doctors into curing me so I can go to my 25 college reunion feeling great!

Tuesday, April 20, 2010

Life is hard

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.

Thursday, April 15, 2010

The set up

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.

Wednesday, April 14, 2010

Getting my Mold Today

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!

Saturday, April 10, 2010

New Beginnings

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.

Wednesday, March 24, 2010

A week away

Next Tuesday is the day new boobs sound good but scares me as well. I hope they turn out well and I hope it doesn't hurt too much. I am feeling so weird about this surgery for some reason I can't figure it out. On one hand I am excited about having the permanent implants hopefully they will look and feel better than the tissue expanders but I am always nevous about going under the knife and even just being in the hospital again. Soon I will blog about what I have actually gone through the last few weeks because it was so scary that its hard right now to blog about it. I missed the entire blizzard because I was in the hospital but that was a nightmare for my family. My husband and kids stayed at a hotel for 3 nights the power was out for 4 days and my Mom was stuck snowed in with no internet or phone other than her cell phone. I have this lump on my hip that I am hoping will not cause a problem with my surgeon doing the surgery again it has become painful and hot and red it seems to get inflamed every few weeks. I just want the to get the surgery over with though so I won't mention it to the plastic surgeon and hopefully she will still do it for me. I just cant wait to be on the other side of this so I can move foreward. I feel like my life has been stuck in a holding pattern and I want to scream out of frustration. I can't start radiation therapy until I heal from this surgery so lets all just pray it goes well and we can start the next chapter. My hair is growing back and It looks so thin I hope it starts coming in thicker and faster I'm getting tired of wigs and hats but my eyebrows are almost all the way back boy I never realized how much I love my eyebrows and eyelashes it makes me look and feel more normal thank God. I will keep you all posted on my progress thanks for caring everyone.

Monday, March 15, 2010

Getting closer to my new boobs but nerves kicking in

I know its been a long while since I've  posted a new blog but I have been going through some stuff that was pretty awful and caused somewhat by stress so I did not want to bring it up I was affraid. I really never felt more like I was dying than I have the last 6 weeks but I am starting to see the light at the end of the tunnel. I had something called conversion disorder which in short is a physical manifestation of stress. My body was shaking and jerking like I had Parkinsons diseas or cerebral palsy or epilepsy or a combination of all of this. My poor mother was by my side at the worst of it and we both thought I was a goner for sure. The doctors thought maybe the cancer went to my brain but once the tests all came back negative (thank god) they thought it was a combination of a reaction to medications I was on and stress. Once they put me on the new medications and changed them all pretty much It started to get somewhat better. Thank God I am doing much better now but I have litterally been in the hospital more than out in the last six weeks and I am glad to be at Mom's again. My outlook is different now to I cannot and will not let stress get me to that place ever again. I never knew how much the mind can do to the body. I must stay strong for my family. My hair is coming back and its so soft and I feel somewhat like a living chia-pet lol but my eyebrows and head hair are starting to come back really fast I cant wait till it really comes in enough so that I dont have to wear a wig anymore. I am hopefull that I will be able to go to a camp reunion in NYC on April 10th and especially to Buffalo for another reunion for college on April 30th. I have a lot to look forward to I just have to get stron enough to go. I am also starting to maintain some weight so I am not losing anymore and even put on a few pounds I went from 99lbs at my lowest to now about 106 so lets hope I can keep it up. My surgery for the exchange of the tissue expanders to my permanent silicone implants is on March 30th I cant wait but I am anxious about going under the knife again. I totally trust my doctor and obviously Memorial Sloan Kettering is the best hospital so I am in good hands. I will keep everybody posted so I will hopefully be blogging again now that the firestorm of heath issues is over.

Friday, February 19, 2010

9 Days of Torture

I spent the next nine days in the hospital somewhat of a guini pig being poked and prodded and just felt like a number on a chart. I can say this this hospital is as good as it gets as far as treatment of patients and their families but I still cant get over some of the crap they
 put me through. To say the least they at least didn't almost destroy the port (this is the access port to protect my veins and is very convenient to take blood or deliver medications from me withoug having to find and access a good vein) it is surgically placed and usually stays in you for a year or so to give you the ability to get some tough cancer fighting drugs but if not used properly this port can be destroyed easily if the nurse doesn't know how to use it. Now we know that my right arm is off limits for blood draws or for blood pressures and my left arm now has the port so they give me these little pink bracelets like you get at a water park saying do not us arm and I'm now going to get the port accessed. The last hospital St. Lukes hospital which I went to last week took 3 days to find someone to access the port because they never saw one put into an arm instead of in the chest area and no one would chance it being that this port is smaller than the ones put in most people also god forbid they mess it up it means another surgeryfor me. When they finally came with a nurse who is registered to access this port he had no clue how to use this one and put the needle in backwards and then spun it around and couldn't figure out how to get blood return to show it was in place in the vein. We had used all my good veins in the bottom half of my left arm which is ok as long as its below the port to use for IV'S or drugs and saline. At this point they are panicking until they finally found this guy who swore to me he new how to access this thing and proceded to mess up my only hope was that it wasn't permanent so now he tries again with a huge needle that is usually used for chest ports and gets it in only to find again that no blood return yet and now I am panicking to. I am also ready to do it myself I have seen it done before like 50 times but after a third try he finally got blood yipee.Now here at MSKCC (sloan kettering) they have seen it all and within 10 minutes I had the correct needle in the arm with no pain and voila thats how it goes when you know what your doing. MSKCC starts immeiately changing my meds which is very difficult on moods and on mental thoughts and behavior so I became a raging lunatic  when they refused to give me my IV pain meds and I went ballistic to the point that I actually walked out of my room with my skinny flabby ass hanging out of my robe with my IV pole in one hand and said I'm leaving this place. The nurse in the other room ran out into the hallway after me I thought she would kill me she was as mean and nasty as you can believe. She said "the only way you are leaving here is if you ard discharged" So I said great discharge me "she then  said "I would love nothing more right now than to discharche you but I cant so now you get to go to a room with a 24 hour a day chaparone" so now i cant even go to the bathroom myself or pick my nose if that suits me I have a strange lady watching my every move. It was so weird every tim I would even shuffle in bed  she was like where are you going what are you doing but that was my new life for the next 7 days like it or not.Oh I amost forgot I got another pretty yellow bracelet that says risk of falling down on it. Well folks dignity gone I pretty much gave in and did pretty much what I was told until one night after speaking to three doctors from the pshycology team and the chair  doctor told me he would give me back my IV benedryl becaus I had such a bad a  bad case of thrush in my mouth I Couldn't swallow my own saliva let alone the 10 pills I would sometimes get at a time so whatever they could give me IV they would until it all healed by the way the benedryl was for the itching I got due to the dam blood thinners they kept giving me it gave me hives all over and also because I am going through menepause and I sweat so much and then get cold and my body just itches from the dry sweat.Now that night time to go to bed and I ask for my benedryl "they said you have no  orders for benedryl at all" I said not even pill form she said no also I got so crazy I made them call the doctor for my case he said no benedryl and I just couln't understand why they wouldn't give me something that would help all of us it would make me sleep so as not to keep bothering them and it would help my itching which just made me want to irritate them more so I kept pressing the call button. Well as it turns out I call 911 lol Here i am at the hospital and I call 911 to tell them that they are holding me against my will and just because I was so crazed I think I called everyone in my phone to ask them to pick me up to get out of there of course it was 2 am by now and no one said yes thank god. Next an hour goes by and I called the desk and said I want my benedryl now and the said sorry and if I call the police again they will tie me to the bed like in a psych ward. Now all this for a medication I was promised by a doctor 6 hours ago which he obviously forgot to order and funny enough If I had clothes and it wasn't freezing i could just walk down the street to a pharmacy and get over the counter. WTF does this make sense at all to anyone I sure couldn't figure it out but low and behold after calling the patient advocate she suddenly they were all so nice running in with my benedryl IV bag with big smils on there faces. Now how in the hell does a hospital like MSKCC expain this behavior I am tm the reason they get a paycheck and these nurses were mean and void of compassion I had one nurs yell at me with her finger in my face and numerous ones flat out calling me a liar. At least the next day the doctor confirmed I was not lying at all and that felt good but it was all still a struggle. The lesson here is don't mess with me or I will mess with you right back cancer or no cancer you have to be your own advocate and not let them take control of you when you know you are right.

Thursday, February 18, 2010

The almost impossible

I have had the almost immpossible passed 3 weeks of my life.Here I thought OMG I will be finished with chemo in just a couple of days, suddenly I felt that same old feeling after staying home with my family for the weekend Nose dripping uncontrollably throat scrathchy and horse head pressure and sensitiviy to light. Here it is the week before chemo and I am all packed to go to Atlantic City for the Winter Poker Open at the Borgata and I have a nasty sinus infection again but that was not going to stop me so I brought my whole suitcase home from Mom's house just incase. So now Thursday I get my Taxol, Friday I get my neulasta shot to boost my white blood cells in my body and Saturday morning I feel a headache like I have never felt before in my life so we called 911 a second time as you remember the first time was chrismas day. They bundled me up and took me to St. Lukes hospital in Newburgh NY. I spent five miserable days there. Firstly I was going to Atlantic City with my sister and my bff and all our kids to have a great time and now they are telling me I need to be admitted. I was steaming mad and tried everything to convince them I am O.K and can leave the hospital now.well the hospital now puts me on a prison bench for a bed (not actually) a prison bed would have been more comfortable than this one. by the way they admitted me becaus my white cell count was 32000 and normal is 6000-8000. even though I explained that this was due to the neulasta shot they still didn't want to take any chances with me having an infection in my body so they gave me dilauted for the pain and heavy doses of iv antibiotics and antivirals and for some ungodly reason they gave me blood thinners in my belly sub cutainiously (just under the skin)and gave me heavy narcotics to keep me out of pain. my head hurt more than childbirth to me. Well I fell into such a deep sleep and when i woke up in the middle of the night In so much pain not just in my head but in my hip where ever since I had my car accident I have had bump like a gumball size in my flesh of my upper thigh to my hip approximately. They then gave me more narcotics to knock me out again for about 4 more hours until about 7am. The nurses came in as the usually do took my vitals took some blood and came back in about 11am and said my Hemoglobin went down to 6.7 normal is about 11 or more so they were very concerned about my bleeding inside either my brain or my body so i went for every test under the sun all the time complaining about my hip which they said if its been 6 years its probably nothing at all.Well when all the tests came back negative my designated neurologist came back into the room and I showed him my hip he realized I was probably bleeding into my hip because it was three times the size as when i got there and red hot and horribly sensitive and sore to the touch.So now they give me a blood transfusuion for the anemia 2 units of and the ct scan for my hip. It came back showing a mass that is infiltrating the tissuea around it non suspicious looking but should be removed or biopsied since its now 3 centimeters and very painful if i lay on that side. Well i did miss my poker game and thanks to newburgh st Lukes screwing up so badly in this one I am not angry its overbut its just one more fun thing I get to miss while fighting for my life. let mr tell you those dam nurses were so glad to see me leave I think I heard them dancing in the hall from the elevator. I think I should not have been released yet because the night before I got kicked out my throat was so sore and swollen I couldn't eat or drink anythg it hurt me too much I begged the nurse to let me stay one more night because I knew I was getting another bad sinus infection and I only weigh 99lbs I was affraid my body couldn't handle another infection especially after giving me IV antibiotics called the big guns (meaning the strongest ones they have) for five days and yet still getting sick. Just unbelievable that a hosspital can discharge a patient in this condition. The very next day I went to my ear nose and throat doctor to figure out what we can do for my throat which has now blown into a horriffic sinus infection and caugh. Her and my oncologists spoke on the phone and decided not to give me the levequin again I should just wait it out and see. That night i had to call her back I was really sick and it was Tuesday and the only way to get my last chemo on Thursday is if I am on antibiotics for and on the mend so she did she put me bsck on levequin. I took it at about 8:30pm and at 11:30 i notice my right hand is shaking uncontrolably i couldnt even hold a cup of water and then when my feet started to tremble i screame Mom come help me im affraid i cant stop shakin on my right side. I think she took 2 steps and was in my room faster than i finished my sentence. For some odd reason we called my oncologist in westchester instead of 911 two geniuses she basically why the hell are you calling me call 911. Althou in a much nicer way she loves me but I annoy her horriblly because I call her for every little thing. Anyway we sat in the emergency room at Good Sam Hospital for about 11 hours. Brain scans blood draws and ct scans all done that nigh which turned into that day and that was supposed to be chemo day. I was so affraid and tired I just went home and made my appointmens for my ct scan of my brain but this time with dye and at a mmsk(memorial Sloan Kettering) affiliated hospital. As mom and I are in the waiting area at the hospital at Phelps Memorial at Sleepy Hollow I start to notice my tremmors on my hand and right leg are getting worse and now the other leg is starting to shake. Now I've noted thatthe tv was on a spanish station and wante to change the channel so i got up and the tv was mounted on the ceiling so when I looked up at it i saw a million flashes of light and hurried back to my seat. Mom noticed the look on my face was fear and now they gave me forms to fill out and I couldn't write either. I was so scared at this point I got up to take my down coat off so as not to drown people in the waiting room with the sweat from my hot flash and put in on the hanger. As I got up to put my coat on the coat rack i became completely disoriented and my legs were buckling as I walked back to my seat and I said Mom please help me something is wrong with me and then my head started to shake like a bobble head doll. My entire body was trembling, jerking and my head was constant moving like Micjael J. Fox. I have never been so affraid in my like and im prety sure Moms as well it was terrifying. The nurse in the radiology room took charge immediately and brought me into another room, took my vitals and calmed me down and they got me on a stretcher and took me to the ER. They released me after stabalizing me to go straight to the main hospital in NYC Sloan Kettering and both my parents went with me. I spent the next 9 days in the hospital and I will blog the rest of the story later so stay tuned.

Tuesday, January 19, 2010

Looking forward

I am so excited about seeing my friends this weekend at the Borgata Ladies event. I am so blessed to have these distractions to get me through the misery of breast cancer treatment. My mind is such an important part of keeping me grounded and it gives me the gift of these moments where I can just be cancer free in my head for as long as god lets me play. I know it sounds funny to some people because it is gambling and it does cost money but when you are staring mortality in the face you realize that you cant take it with you so the time I spend playing poker is priceless to me as long as I am not hurting my family in the process. Some people have Golf some people have broadway and opera's some people have horseback riding I have poker and they all have a pricetag. I am not playing to get rich I am playing to enjoy the moments I can being competative and since I am quite frail right now I cant play golf or tennis to fullfill my competative nature so this is it for me.

On the health front I have some stuff going on I have my next chemo treatment on Thursday this week and I'm a little blue because this chemo really causes me some pain and I want to enjoy my trip really bad it also is making me lose my eyebrows and eyelashes and I feel like I look like a droid. My self esteem is kind of in the dumps. I look really sick right now I am 104 lbs soaking wet and I hate to look in the mirror. I am trying really hard to keep eating every few hours but my pants keep falling off of me and my face looks gaunt and my coloring is grey. I know this is temporary but aside from the physical pain it is really hard to cope with this but I just keep telling myself it is not permanent I am almost done and I can get through this and be better than before!

I have now set a date for my second surgery which will be taking out the tissue expanders in my chest and puting in the permanent silicone implants it will be on March 10 so God please let me get through this surgery with ease. I am unerved about surgery and I am not happy that they told me that I will have drains in my chest for up to a week again. Those drains were so painful the first time I almost cried when the nurse told me I would have to have them again. I knew in my heart there would come a time during this ordeal where I just feel like I cant do it anymore and I think thats where I am at I am worn down to the core I just need to get through this and then on to the next which is radiation. I will have to go for radiation starting about a month after my surgery for 6 weeks every day and I pray that God gives me the strength to get through everything and recover. To my friends and family you are my strength and thank you for your endless love and encouragement you are my gift and I treasure you. Please know I will never stop fighting but this is my mind releasing my sometimes negative thoughts onto paper and out of my head so I apologize if any of this bothers you.

Tuesday, January 12, 2010

Family Matters

Last night my sister and her kids and my Mom and Dad had dinner together at my Mom's house. After dinner my sister said the kids had no school today so we decided to let her little one Danielle sleep over and she would hang out with me for the day. Her and Grandma had breakfast and then Grandma went to work and Don Don (Nickname for Danielle) was watching TV on the couch until I got up. Next thing I know I hear Don Don crying down the hall towards my room crying "Aunt Nicole the dog bit me in the face" My heart nearly fell out of my chest I was afraid too look. I pulled myself together and calmed her down and went to the kitchen to get some ice. The blood was dripping between her fingers as she was holding her cheek and I felt sick to my stomach. I calmly sat her at the kitchen table and got some ice and some paper towels and wrapped it up and told her to hold it to her face as hard as she could without it hurting. Now I had to call my family and I called my mother first because it is her dog and I wanted to let her know before anyone else so that I could try and keep her calm. She was very upset on the phone but just asked what hospital am I bringing her too I wasn't sure yet but I said I would call her back. Next thing I had to tell my Dad who I knew would be so angry because this was not the first time this dog bit one of our kids he attacked my daughter Jordan about 8 months ago also in the face but only cought the side of her face by her ear and it healed fine thank god. At that time my father wanted to put the dog down because he showed other signs besides this of being unstable but my Mom love's this dog and we thought we could just make sure he was kept away from the kids but you just get lax about it and then like a bad dream it happens in an instant. God I wish it were me I felt so bad for my poor little neice she was so brave and good after what she went through today I am so proud of her. She got stiched up by the plastic surgeon this afternoon and hopefully the scarring won't be that bad but we will see as it heels. This kid is unbelievable she showed me a thing or two about being calm and resilient and I hope to use her strength in my own fight. Finally my sister called me really upset which I knew was coming but I didn't want to be the one to tell her so I waited and I knew when the phone rang it was her. I almost didn't want to answer the phone because I had no idea what to say to her. I answered the phone and she just kept asking me how bad is it and I didn't want to say the truth in front of Don Don so I just said it will be fine but we just need to get her to the hospital to have the plastic surgeon evaluate it. When she asked me point blank if it thought it would need stitches I said yes and I felt her anger and fear and I felt so bad for her especially when she said why did we let this happen again now my beautiful daughter will be scarred for life on her face and for what we knew this was going to happen. She was right but as we all know hindsight is 20/20 and we never really know what will happen so lets just move forward from here and hope for the best. I trust that whatever happens God will take care of it and my neice is always going to beautiful inside and out even if she has a couple of little scars on her face. Unfortunately for the dog this is the last night he spends with our family and with his history I'm sure his fate is sealed but he had some great dog years and I pray that he finds peace either here on earth or in heaven. I feel sorry for my mother who I'm sure is feeling guilty and also will feel very sad because when you lose a pet it is difficult under any circumstances and I know she would never have wanted this for the dog or her grandaughter but sometimes things are out of our control and we just have to grieve and move on. This is a strong loving family and I am proud to be a part of it.

Saturday, January 9, 2010

Bravery in a nutshell

I know that there is a lesson in here for me I just need to realize what that lesson is. I am going through the motions but my head is spinning. I can't stop thinking about how the hell this could happen to me. I thought I was over this but it just never seems to go away. All the well wishes and caring thoughts are so helpful but then I have to go and see doctors and listen to things I just don't want to listen to. I am afraid of thinking wrong that the universe will some how punish me for thinking why me. I am afraid of the things I see and hear in the chemo room or in the doctors office. I met a young woman in the chemo room which is what it sounds like, its a room in the hospital with about 8 chairs where everyone in the room is getting there dose of poison that day. It amazes me that every time I go there it is full with a waiting room full of people waiting for their turn to get hooked up. Anyway this woman I met was sitting next to me and being there for 4 or 5 hours you eventually start talking to everyone around you or in my case within 5 minutes you know everybody in the room life story. Unfortunately for me I asked her about her cancer and I heard just the thing that I feared most. She told me she had breast cancer that started 7 years ago and that she was stage 2. Two years after her diagnosis it returned a second time and she went through chemo again and went into remission again and then it returned for a third time and it is all over her chest. I should have kept my mouth shut because I have not stopped thinking about her since. I kept asking her how the hell can you deal with this and she told me believe it or not you get used to it you just keep fighting she was the bravest person I ever met. She was maybe 40 had two young kids and her husband left her because he couldnt't deal with her illness yet she sat there smiling and being so positive in a way I envy her. She told me they have used 5 different chemotherapys on her and they still have more to use when the cancer becomes resistant to that one as it always seems to do. She kept telling me this won't happen to you that it is much more likely that I will be fine but I just can't get the thoughts out of my head. I pray for her and for her kids. This disease is a curse on mankind and it takes the lives of young people and if there is anything I can do to help find a cure not just for myself but for anyone who has been touched by cancer I will. I know life is not a promise but a gift and I want to use mine to help others and I hope I get the chance to make a difference.

Wednesday, January 6, 2010

The day before blues

Today is the day before chemo and I seem to get anxious the day before treatment every time so far. I expect that that is normal considering I feel so good right now and I am about to go through hell all over again starting tomorrow. The Taxol which is the easier of the two chemo treatments has been pretty hard for me at least harder than I expected. I seem to have side affects such as night sweats and bone pain which is very painful for me and I stopped menstruating so I am having all those great menepause moments. I don't know how to dress its so funny I have to dress in layers so I can peel them off one by one as I have a hot flash but then as soon as the hot flash is over I am freezing my ass off. I even have sweat dripping off my bald head I didn't even know it was possible to sweat on your head but at least I have a lot of new clothes thanks to my neice who gave me all her clothes that she has grown out of. Its strange when you get hand me downs from you 16 year old 5 foot 8 neice. So now I am bald and Hip. I need to have a lot of clothes because all I seem to do is sweat so its good to have back up. Anyway I know the chemo is almost done I just have to keep my eye on the prize and keep moving forward. I have to make sure that my attitude stays positive which for some reason is a lot more difficult now than it was at the beginning of this ordeal. I know I am getting closer to the end but that has a whole new set of fears for me. I feel like "
then what?" Do I just wait or what happens then. I feel like at least in treatment we are actively doing something what do we do when I'm finished. What kind of testing will I go through and will the anxiety over these tests ever get easier. Do I want to know or don't I. I am not sure. I think ignorance is bliss but on the other hand the more I know the more I can fight. I am so confused and scared I dont know if this is normal but I am trying a new medication for depression and anxiety and I hope it works. My mind is like a big circle I have other thoughts but somehow someway it always end up thinking about cancer and death I just have to break the cycle and start learning to train my mind to live and relax. I want to gain control back and stop letting cancer dictate my life and my thoughts. I need to learn yoga or something. Poker helps me so much its like my time to be cancer free and just enjoy every moment but my financial problems have made it impossible for me to play right now so I need to find something else that works so far not to successful and shopping is out so any ideas let me know. LOL. I hope everybody has a great new year and I plan to have a healthy and hopefully happy 2010.

Sunday, January 3, 2010


Well kids go back to school tomorrow and I go back to Mom's house reality sucks a little right now. Good news is I only have 3 more chemotherapy sessions left and then hopefully I get to come home for good. My life is pretty boring right now so not to much to blog about but thats a good thing considering. I know life will never be totally normal again but I can see how it's going to be better as time goes by. It is getting easier and thank god I am feeling better. I do have a weird fear though of the swine flu which I'm sure a lot of people have but the more I get back to life the more chance I have of being exposed. I hope this vaccine is not just fooling me into being more reckless with exposure and that it really works. Staying at Moms house is getting old not that I don't love being there with her I actually love the time I am spending with her but I really miss being with my family in my own house with my own pets and not her really cute but insane dog Casey. I love Mom more now than I ever have I am grateful for her help I can never repay her for what she is doing for me on an every day basis. Everyone says thats what Mom's are for but not everyone is a lucky as I am to have her do what she has done. Her life has been everyday Doctors appointments and hospitals and sickness and I appreciate that more than she knows. Everybody elses lives are normal with a moment or two of helping me through but her life is like mine completely consumed with Cancer and all the fun stuff that goes along with it. I still have a long road ahead of me but it hopefully will get easier now that the first chemo is done and the one I am on now is more liveable. I am eager to get back to living my normal life. One thing really bothering me now is that I think the Taxol the chemo I am on now for the next 6 weeks is making me lose my eyebrows and eyelashes which makes me sad. You really don't realize how different you look without eyebrows they are so expressive and really make you look like you. I haven't lost them completely yet but they are really thinning and the lashes are almost gone on the bottom lid and thinning on the top. It seems more upsetting to me than losing my hair because it changes my face and that is me my face is me. I hope it comes back fast. I also cant wait till I can have sushi again I miss my raw fish I can eat the cooked stuff but can't have any raw stuff I get so jealous when we go to eat japanese food but I still like the eel so its not so bad. Anyway just counting the moments and hopefully my mind will stay strong with the help of my friends and family. The support is endless and it still amazes me how lucky I am.