Saturday, January 6, 2007

Sago mine memorial

January 2nd marked the 1 year anniversary of the terrible accident that killed 12 people. one miner, Randall McCloy, who was with the 12 is the sole survivor . It was a terrible fie days for our community. i cant imagine what the families must have went through. especially give the miscomunication that happened.

Friday, January 5, 2007

Happy Birthday Cassie


Today is my granddaughter, Cassie`s, 15th birthday. It seems like only yesterday that she was a baby. I still remember the first time she touched me. When she was born they lived about 3 hours away and i didn't get to see them that often and as a result Cass didn't really get to know me until she was a few months old. She was a little afraid so i couldn't really hold her and love on her like i wanted to. we were visiting them and she was just learning to walk. she would hold on to the furniture and walk along. i was sitting on the couch and she was holding on to the couch beside me and she reached and put her little hand on my knee. That was the first time she had really reached out to me on her own. i will never forget that. i felt like we really came to know each other that very moment. she has always been so special to me. i don't know what it is about grand kids but they are just very special. i worry my but off about them. Cass and Miah both. but anyway Angie took Cass and a few friends skating tonight. i hope they have lots of fun. Happy birthday baby girl and remember you will always be my baby girl. love, nanny
She is Hot Stuff in her Redwings!!!!!!!!!!!!!!!

Thursday, January 4, 2007

New Pics

I just put some new pics on my blog. KOKO is my buddy when i was on chemo and didn't feel well as was the case a lot i would lie in bed sometimes and cry and if she heard me crying she would come to me and nuzzle me as if to say its ok mommy. she was always by my side. and these two wonderful grand kids. what can i say. they are so special to me. Cass is an insulin dependent diabetic. has been for a few years now will be for the rest of her life unfortunately. she has an insulin pump. she handles it all very well. Miah is very smart as is cass. miah is all boy loves monster trucks and wrestling. Today in my little world it is january 4th and the sun is shining brightly it is 55 degrees and i love it. i hate cold weather. though the local ski resorts are not very happy. oh and you are probably wandering what is up with PADIDDLE!
Well you see there is this little game we play around here at night. when we are traveling if we see a car with one headlight out we call it a padiddle. i don't know why or where it came from but anyway. i jokingly tell everyone that i am a padiddle because i only have one nipple. Well i had thought about having one tattooed on but considering what i have ended up with there is just no point in having it done so i will be a padiddle. So long for now.
padiddle

Wednesday, January 3, 2007

life after reconstruction

Well i don't quite know where to start. i came home expecting a long recovery after all i had been cut from hip to hip in my stomach. my right breast was reduced and lifted my left one, the new one, was struggling to stay alive.i had seepage from my new belly button, a little from my big tummy incision, a little from my right breast all of which i had to keep gauze on. then of course there was the dying tissue on the reconstructed breast that had to be covered with 4x4`s all the time. they all had to be changed 2 or 3 times a day. i went back to the doctor in about a week and that is when the fun began so to speak. his nurse that assisted with the surgery spent a lot of time with me cleaning all the different wounds and such and the doctor came in and saw that the dying tissue was getting worse. they told me i had fat necrosis. and as a result it just kept breaking down and it was so Gross. at this point i was a nervous wreck because things weren't going as expected. not even close. well i could not hardly look at it. it grossed me out really made me sick to look at it so when the nurse asked the doctor what do you want to do about this tunneling and he said pack it. well i just started balling again. so i had a hole that went towards my breast bone and it had to have what they called a wet to dry dressing put in it. and it had to be changed 2 times a day. thank god again for Angie. i asked her if she could do it and she said yes. so she had to come morning and night to pull out the old dressing and put in new. i just thank god it didn't hurt. i have been numb on that side ever since my mastectomy. oh sometimes i would feel some sensation there or it might burn a little because we had to use sterile water. but for the most part no pain. well for a few weeks Angie did this. every week we would go back to Morgantown for a recheck . eventually that first tunnel closed itself off or healed. then i got one going straight up towards my neck. it just never seemed to end. so my doctor arranged to have home health come to my home twice a week to teach me how to deal with it and to change the dressing my self. so Angie got a break. and this is where my next new normal comes in. it took a lot of time but eventually i had been doing it my self some times. once i adjusted to it and got used to it. it was my new normal. this went on for 3 months. and it also had bacteria in it. the smell was very bad. it was a lot to deal with believe me. i would beg the doctor to fix it to do something to close it up i was ready to just take the whole thing off. i was done with the whole thing. but he would talk to me and convince me that my life was not in danger and i could do anything i wanted as long as nothing hurt and it didn't hurt even at its worst. home health measured the hole and it was 4 inches deep at its deepest and about 3 inches from the bottom towards my neck. and all the time the thing that i had hoped to call a breast was getting smaller. they called it my flap. but i wanted it to be my breast. so anyway finally in September the doctor said it was time to fix it. and it was a same day surgery he went in and basically closed up the hole and in the process moved around a little fat on the lest side to make it more proportioned. Well wouldn't you know by the time i went back to him for my follow up after that surgery it had started again. fat necrosis all over again. but this time it was 2 small holes one on the bottom and one on the left hand side. and yes i had to pack them both. the bottom one healed up first. in a few weeks it was to small to pack so i just kept gauze on it to catch the drainage till it just healed itself shut. the other hole however got bigger. home health gave me some new packing material called caltostat. it was made from seaweed. and it worked well. it was about a foot long and an inch wide i could get the whole thing in the hole . of course i lift about an inch hang out to pull it out when i changed it. this time the hole was running across the top of my breast towards my breast bone and it went back in a good ways to get all that seaweed in it. so anyway a few more weeks of that and the hole was getting smaller and smaller all the time till it got so small i couldn't get anything in it. so i put gauze on it to catch the drainage. so no i have what looks like about half a tennis ball for a breast on that side. needless to say not what i wanted to end up with. so when i go out i wear a sports bra with a little extra packing in that side to make me look even. and i have come to accept that that is what i am now. i go back to the doctor in February when he says we will talk about how to fix it. but at this point i don't want to have to go through any more major surgeries. so i think this is what i am going to be. i have been through so much and for nothing it seems sometimes. except for the fact that i have a lot of family who loves me and a wonderful husband and daughter. this is my life now and we have all excepted it. disappointing as it may be. there are worse thing in life like
CANCER!!!!!!!!!!! so i consider myself very luck to be alive and well. if any one who reads this would like to post feel free i know there will be some who may be upset understandably. and i didn't do this to scare any one. it is just a large part of how my life has been and it has helped me to write it down . though it has been hard a lot of this i had forgotten about.
cancer is very scary and sometimes has a terrible result. who is to say whether or not i might ever have it again. only god knows. so for now i will go and wish health and love to everyone who reads this. for now..
padiddle

Tuesday, January 2, 2007

my new normal

well here i am again. i have been busy on ebay today. when i was a little girl my mom made quilts. i remember one that was a most beautiful star. i haven't seen it in years but i know a family member has what is left of it. so anyway i decided i wanted one to remind me of her. so i hit ebay. now i have 3. though they will never replace the one she made i love them just the same. i would like to make my own star quilt one day. well back to my situation. the reason i title this my new normal is because every step of the way with cancer i looked at it as my new normal. just like when 9-11-01 happened and the world had to learn a new normal. every step with cancer is a period of adjustment i called my new normal.
You see starting in 2005 i had 2 different doctors tell me that my tumor was dense breast tissue, even though it was quite large and getting bigger all the time. you can imagine my surprise when i had it biopsied, at the insistence of my family doctor, to be told that it was indeed cancer. i went for the results to the surgeons office alone fully expecting to hear a positive report. as soon as the doctor walked in to the room i could see by the look on her face what i had. and i said to her "i do not like that look on your face" and she said to me are you here by your self and i said yes.
she said i am sorry to tell you that you have cancer. Well like the big baby i am i busted out bawling. and of course we both knew and she told me that as large as it was the whole breast would have to come off . I understood i had no other option . it was either loose my breast or loose my life. it was just that simple. Thus my new normal #1. learning to except that I had cancer and at the same time a week later i was going to loose my left breast. that was my normal #2. well then of course there is the problem of telling family. not to mention that i actually thought i was going to die. i had a sister inlaw that had died of the very same thing only a few years before. though she refused to have it treated till it was to late. And being a survivor unlike her i feel guilty knowing she didnt make it. anyway it had to be done. everyone knew i was getting the results and were waiting to hear. i have 5 sisters i brother my husband of course my daughter. well it was going to be very difficult. so the first person i told was my sister bonnie. she was at work i went there told her then i had to walk across the street to tell my daughter, Angie, who was at work also. You know i actually thought about just walking out in front of a car and getting it over with because i knew how bad chemo would be. and i didn't think i could beat it anyway. well i didn't though. so i told Angie and she stayed very calm and said "we`ll deal with it" . at the time i thought how? Later i learned, with prayer. so on it went telling every one and getting company from neighbors and friends and family. and that was wonderful. i had a lot of support. so any way i had the mastectomy it went well. not much pain went home the next day. however when the Dr came to take off the bandages i was again by myself so i told the dr i wasn't ready to look at it. she said that's fine don't until you are ready.
as soon as she went out the door i snuck a peek. and again like the baby i am busted out bawling. i never ever thought i would see such a terrible deformity on my own body . not that i was better than that. just that it was hard. to look at my own chest and see one breast size c though hanging it was at least there. and beside it nothing. how in the world i wondered was i ever going to live like this. what was my husband going to think. would he leave? Ben and i have been married 24 years at this point. and we had our ups and downs but all in all we were solid. but this was something neither one of us anticipated. so anyway my daughter was going to come and take me home if Ben didn't but i called Angie balling and said "i looked at it and it is so ugly can you come. of course she did right away. she was so wonderful i don't know what i would have done with out her. and she looked at it and said "well it`s not pretty but it`s healthy" well i hadn't thought of it that way and that really did help but i just kept on bawling. so then Ben came and we went home. I never let Ben look at it until it came chemo time. i really didn't expect him to go with me. when he said he was i kinda panicked. i said well if you are going you will probably going to see this and i don't want the first time to be there so if you want to see lets do it now. that was one of the hardest things i have ever done in my life because i didn't know what his reaction would be. and i am crying now remembering this. he looked at it, he touched it ever so gently, gave me a hug and told me he loved me and he wasn't going any where. i was really bawling then and i said how did i get so lucky he said he was the lucky one. so away we went. i had my own entourage every time i had chemo. Ben went all but the last one i think. Angie was there for most and at least 2 sisters sometimes there were 4 or 5 people and of course i don't think i got through a one with out crying. well you see i didn't have a port and the chemo was very hard on my veins and most times i had to have the iv moved and all that sticking and burning of the veins it was very hard. the only good thing was i never got throwing up sick. but as soon as that poison entered my veins i felt an immediate effect from it. usually just weird sometimes a hot flushing of my body. it just was strange. it was weird to walk into the hospital for chemo feeling reasonably good and walk out feeling crappy. every time. my new normal #3 was learning to except these poisons into my body and how they affected me. and after each and every chemo treatment i threatened to quit but with so many supporters there was no way. thank god. My new normal #4 was learning to be bald. of all these new normals i don't honestly know which one was hardest but this one has to be close. about a week after my first chemo, well i would go to the mirror every day and grab a hand full of hair to check to see is it was time. well one time it was time. i grabbed a handful and the inevitable happened. i pulled out a hand full. so again i started bawling. i would like to have been one of the ones that just left it alone and maybe covered it with a scarf and let it happen at will but no i didn't want it all over the place so i stood there and i pulled and pulled and bawled. i didn't pull hard i would just run my fingers through it and it would just come right out. oh i had some here and there for a few more weeks but eventually it was all gone. so we knew it would happen sooner or later so my wonderful daughter bought me a wig for mothers day that year. and it looked very nice. but it bugged me to wear it. but i did wear it. i don't know what i would have done without it. thank you Angie so much. so anyway my summer of 05 was spent suffering through chemo. i was glad it was summer i spent a lot of time on my back porch in my swing. i don't enjoy cold weather at all so i am glad it was summer. 24 hours after chemo i would return to the hospital for my neulasta shot which kept my immune system up so i didn't get sick. at least until my last chemo i thought at long last finally the last chemo unless of course i still had cancer, because i still worried that it wouldn't work given how large my tumor was and the fact that it had metastasized to 2 of the 16 lymph nodes they took out. and the tumor was 13x7.5x5 cm. so anyway after the last chemo the doctor didn't order my neulasta shot he wanted to see if my immune system would rebound on its own. well wouldn't you know i ended up in the hospital with neutropenia because my immune system bottomed out on me. and again i had to have iv antibiotics in an arm that had already bad veins. they had to change the iv every few hours sometimes my veins would just collapse and they would move higher up my arm. well anyway i finally got better after about 4 days and went home under house arrest for about another week to make sure my system built itself back up. so i finally started feeling better. then i had the radiation 25 treatments 5 days a week. Piece of cake. i took the last treatment the week before thanksgiving. so that was it. go to the doctor every 3 months for blood work to make sure every thing is good and a cat scan of my lungs about every 6 months. the first ct showed something that appears to not be cancer. and they are keeping an eye on it . so i am in remission. THANK YOU JESUS!!!!!!!!!! well it is late once again and i have to go . i will pick up with the reconstruction story next time.

padiddle

Monday, January 1, 2007

Happy New Year

For me i hope it is a happy new hair year!!!!!! I had such beautiful long thick hair before chemo now it is so very thin especially on top. I have to get my drivers license picture taken next month i hope it improves a little by then. And of course that is when i turn 50. It just doesnt seem posible to be that old. When you are young and healthy and good looking you cant imagine yourself at such an age. I am not one of those that will age gracefully. i am going to fight it all the way. As long as the cancer stays at bay. I honestly thought nothing could be worse than chemo but going through breast reconstruction was something else alltogether. I just happen to be one of the few that had major complications.

After chemo i had 25 radiation treatments that were a piece of cake comparatively speaking. By thanksgiving of 05 it was over and i thought now i can start thinking about putting my body back together. So in June of 06 I went to a wonderful Doctor in Morgantown we both agreed the time was right. Some doctors think you should wait a year after radiation before you have reconstruction. because the skin needs time to recover. Well maybe if i had things would have turned out differently but who knows. Hind site is 20/20. So anyway away we went with it. in the middle of june i had a what they called a "tram delay surgery" same day thing wanst bad at all . this was a vascular surgery to make sure the tissue had a good blood supply to it. Then 2 weeks later the big one. I went in the 29th for the reconstruction. They had to build me a left breast out of the fat of my stomach, and i certainly had enough to do that. as a result i basically got a tummy tuck. which is probably the best thing that came out fo this. Then they had to reduce the right one. i was a large C cup before all this started. no i was down to one C cup on the right and flat on the left . I felt horibly deformed. Though i eventually got a prosthetic silicone breast to wear in my bra that made me look normal when i was dressed. But without it i was just disgusting . even with clothes on there was a quite noticable deformity. I always tried to wear a lot of bulky clothes so that it would not be as obvious. You might be suprised at the people told me that i should n`t have the surgery. they would say that it wasnt even noticable when i had my prosthetic one on. but they didnt have to wear it and they didnt have to see themselves in the mirror or take a shower and feel the empty hole where i used to have a breast. and that was mostly family . i never talked to any one except them and a preacher across the street that prayed with me and for me all the time. And even he said at my age it wouldnt be worth it. but then they hadnt been through such devistation.
So i went for it. I was in surgery for 8 hours. In a climate controlled room for 2 days. The pain and heat lamps were absalutely unbearable. If i had any idea i would never have done it. Not to mention right off the bat i had dying tissue. That wasnot at all good. then the pain medicine gave me night mares and halucenations. Then i got a migrain headache on top of that. Threw up with that. Finally got the percocet changed to tylenol with codene. Then migrain medication. Finally started to breathe. I was so miserable the first couple days i told my daughter and husband not to come see me. It would only have upset them and i was so out of it i just didnt care. at one point i asked to see the hospital chaplain. i just need to be prayed for . and i really thought i was going to die. That is how bad it was for me . Of course i have always been a big baby. but it really was terrible. Now i dont want to scare anyone who might be in the position to have to have this done. Not every one has the same problems i had. So dont let this scare you out. who knows i cant honestly say that if i had know how bad it could have been i might still have had it done. There is such a big empty place that is missing from your body that you feel a certain compulsion to fill it again. and that is the way it was with me.
So after about 7 or 8 days i was finally comfortable enough to go home. Well i really have to start supper my kids are going to be here soon so i will finish this later promise.