Sunday, January 15, 2012


All over FaceBook lately is talk about a Barbie to recognize childhood cancer hair loss. I personally think it's a great idea however, I also have some personal thoughts that should be looked at. In the year 1985 at the age of 15, I was that child diagnosed with Hodgkin's Disease, a childhood cancer. I did not lose all of my hair, but I did lose some hair due to the radiation. In fact I was diagnosed with Hodgkin's when NON Hodgkin's wasn't even a name of a disease yet. The radiation I rec'd to my body during that time saved my life. BUT - The lung cancer that is inoperable and has spread through out my body now for the past 19 months is there because of that radiation. Throughout the years I have been a part of the ACS Relay for Life raising money for cancer research and speaking at different public events. At times I became complacent in my life and even forgot from time to time that cancer could return. Well It did return and with a vengeance. I never thought that when I was diagnosed that so many people I consider friends and sisters would also be diagnosed. All of us becoming BALD and dealing with our own insecurities. One thing we first nnoticed was that those who were dealing with Breast Cancer were so lucky. The research and strides made to win against Breast Cancer have been tremendous over the years. Thanks to powerful women and the Susan G Koman Foundation, Breast Cancer is beatable! Avon's upcoming Houston Walk is another example of major fundraising for breast cancer.

Childhood cancers also need that kind of support and I think it will need major celebrity backing. Disney/Mattell need to do it and make it really big. They have the money and power. I think it should be more than childhood cancers though. The Barbie should be dressed in jeans with a t-shirt. On the Tshirt is the cancer ribbon the color of the cancer you are supporting research on - binged out of course and the Barbie must come with a wig. Wigs are fun and little girls do play dress up with them. I wear mine all the time! So there you go......The back cover of the box could be the chart showing the ribbon colors for each cancer. All we ever hear about is PINK for Breast Cancer. Even the NFL celebrates it. Well Lung Cancer month is November....didn't know that did ya?  I hope something happens, any awareness is a blessing, just thought I would share my feelings and maybe something will happen.....we will see.....Ellen

Thursday, January 12, 2012

Satisfaction and Dr Settle's radiation

I am currently in Houston to receive radiation to my spine on the T10 and L4. This is the last of the radiation that my spine can handle and it has to be delivered so precise. These 10 treatments over the course of 15 days is not meant to make me walk (that would be a miracle). The radiation is being done to stop the pain (the pain was around a 6 when I started radiation in Jan 3. , with daily pain meds I can get it to about a comfy 2. ) It was also being done to try and delay (prolong)any permanant leg paralysis. When I arrived I had: 1. NO feeling in either leg 2. The numbness in my legs, feet, buttucks etc. was painful and I was in pain no matter how I sat, laid, twisted or turned. 3. I began to lose my upper body stregnth which is detremental to everything. 4. I could no longer stand cause I could not feeel the bottoms of my feet at all. 5. I couldn't be moved from wheelchair to bed, vice versa, to shower, to car or anywhere without Wayne lifting me. I am dead weight literally from the waist down. I use to be able to do lots of leg excercises and they just stopped. My legs just stopped moving and thats a terrible feeling. Well this morning before my 6th treatment I was able to see Dr Settle. He is my gentle giant. When he came in the room he asked if I felt like there was any improvement in my legs. Being the drama queen I am, (Acadamy Award's to my right plz) I threw back my blanket from my lap and began to rock my knees back and forth together. Dr Settle literally JUMPED BACK and said "WOW! I can't believe this, its incredible to see that kind of improvement in only-6 treatments!" He is so satisfied. Like he said - I may not WALK again but with the movement and feeling coming back to my left leg (yesI feel the bottom of my foot and that helps me steady my weight for wayne when he lifts me)  it will help me with a better quality if life and delay the paralysis some and as for the pain - its under control as well. If God wants me to walk again I will. If its not part of the plan we move along to what is. What else can I say. HeckI felt so good today that after radiation Wayne and I drove around looking for some good food and a Barnes and Nobles just to kick back at for a while. It felt good to be out and actually laugh a little. Of course this road is very long and very winding, but when you forget the bad stuff and enjoy the golden moments that are so satisfying the day becomes so bright and warm. I really enjoyed it. Now tomorrow is treatment 8 and its at 6:45 am and its gonna be 29 degrees without the wind chill factor. So I guess we will be coming straight back to the apt after, brrrrrr. We get a break over the holiday weekend and then Tues and Wed am we do last  ones and head home. I will do follow up MRI's to back in 4-6 weeks but will do a brain MRI at end of January in Slidell just to make sure there are no issues there. 

Just a side note: I have been reading the book by Joel Osteen - Everyday a Friday. I know its written by a preacher but its more than that. Every chapter feels like it was writen for me in my lifes order and as I read it daily I get a new message and its right there in my face, no denying any of it. On top of it I received several texts today about dreams people are having and some sent me some Bible verses via text that actually would be perfect captions for the dream and even for some of what I am reading. They say that God works in mysterious ways - no he doesnt. He stands right there and does what he has to until you open your eyes, your mind and heart to him and when you finally "get it" its like fireworks going off and you love every minute of it. I hate to say it Wayne, today I actually felt light as you picked me up and moved me around all day instead of the heaviness I have felt in the past. To me this is a sign that I am getting beter baby. I hope you all keep enjoying my blog. I promise to keep it up. Also, check out Eric Haas' blog here as well. he is the son of a friend's, friend in Canada. On google ericsfight (I think). You can find info and links on my facebook too. As always, God Bless everyone for my payers and love. I thank Father Seelos, Saint Pio, Sr Dulce (still recovering from surgery MOM - forgot to tell you - infection it sounds like but getting better) and of course our Lord Jesus- I am so blessed.  I will find a pic of Dr Settle when I get home......Ellen

Wednesday, December 21, 2011

Christmas to me

What is Christmas to me......

When I was a little girl growing up living over the family restauraunt, I can remember my Grandfather - Paw Paw Barney inviting so many people to have Christmas dinner with us. At one point I can remember setting tables up for more than 40 people. It was our family and then all the single, widowed shrimpers and friends/customers of my Grandfathers. My Mom and Mi MI would start cooking as eary as 4 am, 2 sometimes 3 huge turkeys, oyster dressing, baked macaroni and cheese, rice and gravy, veggies and bread and desserts. My sister and I would play waitress and serve drinks. It was so much fun. I asked my Mom one time why Paw Paw invited so many people and she told me that it was Paw Paw's way of giving back. He didn't come from money, he had worked for it. Many of the men he invited to dinner were hard workers and were like him. The difference was he had his wife and family around and was able to work with them. He was still lucky and blessed and they weren't anymore so he didn't want them alone on Christmas if they didn't have to be. Thru the years that list dwindled for one reason or another. But it was something I never forgot growing up. 

Always appreciate what you have. Always remember where you came from. And always respect where you end up.

I had cancer at 15. maybe that's why  I looked at things more maturely. But after 27 years of remission I got a slap in the face. The cancer came back and came back with a bang, spreading quickly through out my body within 18 months. Just in time for Christmas. Over the past 18 years, since having my children I think I lost sight in what Christmas was. Honestly, Christmas became commercial. I am ashamed to admit it. Since having my children all I was worried about was making sure I had enough toys for them and as they got older making sure I had the toys they asked for. It didn't matter what it took to get it or how much I spent, Chistmas meant everyone getting what they asked for and being spoiled.

This Christmas is so different. I sat the kids down and expalined that there was no extra money for spoiling anyone since I was not working. Each said they understood and I really hope they do. They are all older now and I hope after seeing me go throough this a bit more mature. Of course they will get a little something from us, but I want them to see the true gift that we are receiving this year. The gift of me being here with them and able to enjoy them 100%. I want them to see how lucky we are to have this time together as a family. And to love one another. God gave me 3 beautiful gifts. Adele, Alexis and Joe Joe. God gave them ME. I hope they learn to:

Always appreciate what you have. Always remember where you came from. And always respect where you end up.

I will not be here forever so I hope they can see that Christmas is just one day of the year to share their blessings with their friends and family. Christmas is the day we celebrate the birth of our Lord Jesus Christ. We have 364 other days in the year to share, to love and to bring  others into our world and teach them the lessons that out parents and grandparents have taught us aboout sharing blessings.......

Sr Dulce of Baton Rouge

Sr Dulce of Baton Rouge

Meet her  here:

I was told about Sister by Mr Joe Delio a man we met at the Fr Seelos Shrine when we stopped to pray on our way to MDA. Mr Joe a Lung Cancer Survivor prayed with us and then told us about Sr Dulce and her heeling's. I was mesmerized and so stunned to hear about a healer that was so close and someone I may be able to see in person. As Mr Joe was calling his wife and asking for Sisters contact info, a woman walked into the Shrine and overheard him. She pulled out a card and handed it to me to copy - I mean what are the chances? This was absolutely God's Work! As we left the Shrine I felt so good and as we hit the I10 I called to get an appt to see her in person and to our surprise we got one the following week on the day we would be driving back from TX. Again God's Work!

Meeting her was incredible and I can't explain what it's like to be with her. She is just a nun in a wheelchair but when she hugs you and touches you she is illuminating. She will tell you, she does not heal, Papa does. (Papa is her nickname for God) According to her bio, she has the invisible stigmata of Christ and is able to heal. All I know is that she has laid her hands on me in person and told me exactly what I am feeling and I can physically feel the pain lift from my body. On Tuesday nights cancer and terminal patients can call her between 6-8 and thru the phone I have felt the pain leave me and she has described things over that phone that only I would know. Two special messages I carry with me, especially on my lowest of days are: "Papa says you have many more years left on this miserable earth." and "Papa says you have less cancer than you think you have". I will always be grateful to Mr Joe for sending me to Sister. His message came at a time that was so important to me. He is a sweet man and he was just rediagnosed and is fighting his cancer again. I keep him in my prayers and hope that he and his family have a good Christmas. As for Sister, please say a lil prayer for her, she had surgery the same day as me 10/10, was doing well and now has the flu. I want her well again so I can stop to see her on Jan 3rd. on the way to do my radiation. Make sure you read about her too.......

December - the month of Holiness and Faith

MDA Merry Christmas and test results

Had to go back to MDA to do MRIS and CT Scan on chest and Abdomen last week (12/15 & 12/16)  and see docs and get results. We got good news and not so good news. The good news was the tumor in my next that was treated with 10 radiation treatments had shrunk and that's why I wasn't haven't as much pain there. The even better news was that the radiation to the brain, 5 treatments, had also worked and the lesions were dead. This was music to my ears cause I was so afraid that if it didn't work I would become blind because of where the tumor was and unable to see my children and nieces and nephews continue to grow up, go to prom, or be married. I felt so blessed and that my prayers had been answered and then the bad news. I had 2 new tumors on my spine. 1 on my T10 and another 1 on my L4. The one on the T10 is in between the vertebra's that were taken out and redone in cement and rods so it cant grow up or down and is the least of our problems. The L4 is the one that is the most dangerous and will cause me to be paralyzed quite quickly. I had known for the past week and a half or so that something wasn't right. I could tell that my right leg (the bad leg) had gotten weaker and was harder to move and lift when in a standing position. BUT what really had me worried was the left leg (also known as the Good Leg) had become so much weaker. It was becoming harder to put all my weight onto it and it was harder to lift of the bed. I just knew in my gut something wasn't right and that I would find out it was another tumor and I hate that I was right. As of today (12/21) I am much weaker and can't use the walker at all cause I just can't stand. Wayne does a great job transferring me to and from the chair to the bed and the chair to the car. Thank God for him and his patience that's for sure. I spoke to Dr Rao and he felt that radiation could be done and wanted to speak to my radiation oncologist Dr Settle and see what could be done (this was on Friday). First thing Monday morning, Dr Settle called to say I was able to do 10 treatments on my spine and he felt that the risk of becoming paralyzed in the next 12 months with radiation was 10% and without is 100%, and it's already happening. So Wayne and I will be leaving for MDA again on Jan 3 to start radiation. Between chemo and radiation and travel and everything in between I feel as though I am in a dream. I can't believe how much my life has changed and how fast. It's as if God has just taken over and I have no say so anymore. I am so blessed to be here and so blessed that all my prayers have been heard. But, they are being answered in God's Time. The one thing I can tell you is that HIS TIME is  bit different that MINE lol. Hopefully I will get good results on the liver CT and chest scan. I don't know why its taking so long to see those reports, but when I get them I will post them. I can only pray now that December gets better and that everyone's Christmas is healthy, and blessed and so special. I hope my friends look at their own families and truly thank God for everything they have this Christmas, but more over that they look at their family year round and be thankful for what they have. We are so lucky for so much and that thankfulness should come year round not once a year. I am Blessed to have my parents, I don't know where we would be right now without my Mom and Pop. And I have such an awesome Husband that has chosen to stay with me through sickness and in health. He could have easily walked away or chosen to have me go live with my parents but, he didn't, instead he couldn't wait to get me home and take care of me. My kids have surprisingly been willing to learn how to help me and they make sure I take my meds and my legs get rubbed and they come and lay down by me. They have been great. My sister really surprised me by even learning how to give me a shot. This was huge I tell ya. I would have never thought she would do anything like this. She really has come through for me and I love her. my friends have made sure that my family is fed and my kids get where they need to be since I cant drive. I couldn't do it without Jina, Alicia, Gwyn, Andrea, Kelly, Danielle, Donna. You girls are my Angels and I love you so much. You all have made my December just a little bit merrier and I wont ever forget it. And last but not least my home health team, Christy, Claire and Rachel. I appreciate your patience, your kindness and hard work. You have each put up with me and I am very happy to have each of you helping me. May you all have a Blessed and Merry Christmas and a Happy New Year. I have lots more to write about under separate headings so stay tuned, the next topic will be Sr Dulce of Baton Rouge, a story for believers and non believers to be transformed to a believer.......

Saturday, December 10, 2011

August - December


Since August so much has happened so fast. Its like the speed of light. I felt as if I were in fast forward. My life went from being in pain and using a walker to suddenly having to move in with my Mom and Pop so Mom could take care of me - this would have been sometime in early Sept. - to being admitted into MD Anderson hospital because the pain was so severe I couldn't walk or speak on October 7th. On October 10th I was in surgery for almost 10 hours - my Neurosurgeon removed my T, 11 and 12 and replaced them. I will come back to this later. Between October 10th and Nov. 25th I had back surgery, rec'd radiation to the tumor in my C3 (neck) and found (accidentally) found out that I had 3 lesions on my skull as well as 1 small lesion on the brain which was also treated with radiation. During all of this I also rec'd daily rehab of exercise and walking. On Nov. 22nd I was finally transferred to Slidell Memorial Hospital. There I rec'd additional rehab and my first chemo treatment (11/30) and on Friday December 2nd I was finally driven home by Mom for the first time in over 90 days. Below are some pics that were taken over the past 90 days. Everything from radiation to wonderful surprise visits :) and then just some pics of the people I have loved for so long as well as my newer friends that I have started to love and hope to love for many years to come.......
Mom - just another day of appointments

NECK radiation

the mask is made to fit my face so i dont move

when radiation is complete you ring the bell

So the recap is in 90 days I moved in with Mom and Pop, went to MD Anderson and was admitted for back surgery, was treated for the tumor in the neck and lesions on the brain with radiation, was put in rehab to learn to walk again, sent to SMH after 48 days in Houston, rec'd my first chemo and then sent home to MS on Dec. 2nd.

  • Emotions and Fears were beyond anything explainable
I felt as though everything was a movie I guess. It was as if it weren't happening to me but I was watching it happening to me. Alot of what I write here may not even make sense to you but try and ride along, I promise it was not boring. After arriving at MD Anderson for a scheduled MRI I was in so much pain. It was a pain like you just couldn't imagine and couldn't fake. It was to the point that I was literally so worn out from the pain I was delirious. After seeing the "Pain Management" doctor, and he only wanting to change my medicine again, MOM had enough. We went to see my new Oncologist, Dr Byers. We had no appt but when the receptionist saw the amount of pain  was in and how I had been treated, and probably the agony in moms face she sent us right in. Upon seeing me she said there was no option other than admitting me to get the pain under control first and to do an MRI to see why the pain was so bad. I was admitted and the MRI showed the cancer had become very aggressive on one side. It was rather unusual cause the chemo actually worked on one side of the spine but not the other. The way it was growing it was causing excruciating pain but it had not gone into the spinal canal and this was so important. Dr Rao the neurosurgeon was called in and surgery was scheduled. To be honest I don't remember any of the preparation for the surgery. I don't even remember going in to the surgery. All I remember is waking up after surgery...................

  • 10-10-2011 Rotisserie and burning up
I opened my eyes and for some reason there was a film covering them. I felt as though something was covering my entire face and body and squeezing me. As I tried to peer through whatever the substance was I could see changes in the light in the room and I felt as though I were in a rotisserie, going up and down and round and round and I was on fire. Every part of me was on fire. It was so hot I start screaming for the nurses to help me. I was crying and begging fir help thinking I was on fire or had died. I wasn't sure but it was so real, I was waiting for someone to come in and tell me that I was in line for either heaven or hell. At this point a nurse started asking  me to stop screaming and calm down that I was disturbing the other patients. She kept telling me I was not on fire, surgery was over and that they were getting me to my room to please be patient and calm. Finally I felt some relief and couldn't wait to see Mom and Wayne and Pop. They must have given me some awesome pain meds cause next thing I know I was in my room, I was not afraid, I was not in pain, and my family was kissing me. I don't remember much after that, well that night anyway.
  • 10-11-2011 a miracle vs a nightmare
The day after my surgery I woke up in ICU to a miracle and a nightmare. My miracle was that I had absolutely NO PAIN. Not any. I kept waiting for my back to start hurting at some point, after all I had MAJOR back surgery replacing 3 major vertebrae. I was cut from the top of my spine to almost my waist. A special plastic surgeon was even part of the surgical team. This was because I had radiation as a teenager and then the Stereotactic Radiosurgery and they were afraid that my incisions wouldn't heal. So they wanted the plastic surgeon to make sure that everything would come together and heal properly. He sewed muscles to muscles and gave me a beautiful incision on  my back. I had a pain pump and could hit it anytime I needed something. The thing was I didn't cause I had NONE! My nightmare was that I had some damage to my nerves/muscles. I had no real feeling in my right leg. I didn't know what to  do . I noticed immediately that something was not right. My legs at first both, felt as though they had been asleep. You know that crazy, tingling feeling like pins and needles. Then I noticed my left leg had more feeling than the right, although it felt different. The right was definitely not the way it was when I went into surgery. From my waist down felt a numbness to it. On the right from my thigh to knee I have no feeling at all. From the knee to toes its that crazy tingling, numb, off and on kinda feeling. I have no control of my knee.  On the left leg I do have feeling but from the knee to toes it feels like it is asleep. At this stage the docs can't tell me if I will walk or not. My neurosurgeon can't make me any promises. He knows I am a positive person but he just can't tell me if walking is a possibility. I tell him it has to be. I am 42 with 3 beautiful kids and I didn't go through so much pain and then this surgery to not walk out of MD Anderson. I made him a promise right then and there that I would walk out of that hospital if it was the last thing I did. (I had no idea that would be 48 days later).
Physical Therapy became my way out - I wanted to walk but never thought it could happen

Melanie with me on the tilt table

John a PT Asst. and me teasing him

Me standing for he first time in over a month!

Tears of joy


2 peas in a pod - happy Halloween LOL

Me in my wheelchair giving thumbs up

The PT Crew

Me on the Bike

When I met my Physical Therapist the first thought I had was wow she is so young. It was that same moment that I realized, damn I am just old lol. 42 isn't really old but I still felt like it, and I knew I had to let her know from the start that I was there to learn to WALK and I meant it. My Physical Therapist, Melanie knew I meant it. Mel and I are very good friends now and I feel blessed to have her in my life. She has a strange way of getting you to do things you know you would never do and makes it such a special thing. I just adore being with her. I also had an Occupational Therapist named Shelby who also knows what she is doing. She is very good with making you feel comfortable and positive. Her smile could light up NYC in a blackout. These girls along with some others took very good care of me. Remember for almost 3 weeks all I could do was roll side to side like a heart patient. I couldn't use my arms. These girls got me up on a tilt table and then on the side the bed. From there we learned how to transfer from the bed to a wheelchair, brush my teeth, put on makeup, change my clothes and put on my shoes. Once I learned and mastered transferring myself to the chair  it became time to try and walk with a walker. I will tell you I was so nervous. I had no idea how I would do it but for some reason between my Mom encouraging me and Mel assuring me she wouldn't let me fall I just said lets go for it. (I kinda wish someone was in my other ear to remind me that I hadn't been on my feet in quite some time and that I now had some serious hardware in my back) Everyday these girls came in and they never let up. They knew exactly what I had to do to get better and they were determined to help me reach my goal. After all I shared my plans with them about renewing our vows next June for our 20th anniversary. I didn't want to wear a decorated walker, I want to just walk up the aisle with my son. After about 10 days I believe I walked my record of 125 feet =5 times on the parallel bars and then the rest with the walker right behind that, I was so excited and happy you just don't get it unless you are in my shoes.

I have always loved surprises, I guess cause I don't get many of them. Well when I was in Houston I got quite a few. My husband was able to come in and spend a few days here and there and when he did he slept at the hospital with me cause he missed me so much. Then Pop was able to come and this was awesome, I love my Pop dearly, if it wasn't for his generous heart I don't know what we would do. I am so blessed that you are in my life Pop. Al was in town for an appt. so he was able to surprise me and we were able to catch up. Tammy!!!!! To see my sister Tammy come through the door was just the best feeling. Tam and I have truly gotten so much closer over the past 3 years. I love her and seeing her made me feel a little bit closer to home.  Danny Craigie came to see me. We met when we were 5 years old in kindergarten at SJM. How do I remember that? Well he was a tall and lanky and talked alot. I had a little crush but over the years we became true friends. Midway thru grammar school we lost touch. Around 8th grade we were hanging in the same social circle once again and he had a crush on one of my girlfriends. If I am correct they began dating dating through High School and Danny and I remained friends thru graduation and their breakup. Danny was there for me when I was a Sophomore and was diagnosed with Hodgkin's Disease. He would come to the hospital and visit and make me laugh Danny is now married to a wonderful woman named Susan whom I just adore. It was strange cause we met and its like we knew each other our whole lives. I am so lucky and once again Blessed to be able to continue a friendship like ours. And even more Blessed to get to know her and develop a new relationship with her. Susan is probably someone I would nominate for woman of the year. We met this year, her father was diagnosed with cancer but is now fine. I was able to introduce him  Ft Seelos' Shrine and refer him to Dr McKelveen. She is beautiful and I adore her. They got married and instead of going straight on their honeymoon they drove to Houston to surprise me. They stayed with us for 2 days. When Danny walked in I just busted out crying. I was so happy and surprised. What kind of woman gives up 2 days of her honeymoon to go see her husbands "pookie" in Houston cause she has Cancer? A  DAMN GOOD WOMAN THATS WHO!

me and MOM the best nurse ever

I was shocked when I saw Danny come thry the door!

Me and Al

Danny and Susan brought me a tiara and I wore it all over the hospital

Slidell Memorial here I come

After 48 days in MDA (OZ) it was finally time to go to Slidell Memorial Hospital (the wicked forest). I would spend 10 days there doing rehab as well as getting my first chemo treatment of Taxotere. It was a bittersweet moment when they started getting me ready to go. All of my nurses and caregivers and therapsist at MDA became family to me. I hate to start naming names cause my memory is so bad I may forget someone, so MOM please add names in your comments if you think of anyone. BINU (both of them), Fatima, Ms B and her husband, David, Andrew, Melanie, Shelby,John. All of my doctors as well esp. Doctor Roa. I felt like VIP while I was there and couldnt ask for better care. I made great friendships and wont ever forget that. When the ambulance guys pulled the stretcher into my room I waned to cry. It was so small and if Shelby hadnt brought the egg crate that morning at 7 am for us I dont know what I would have done. It helped somewhat to ease the pain in my back, after all  did have major back surgery! I will not lie, the ride home in that ambulance on that skinny stretcher was the worse ride in my life, I was in so much pain when I got there but when they flung open the back doors of the ambulance I was full of joy seeing my family and especially my kids standing there!!!!!!! It's probably one of the most emotional nights in my life, I had just missed them so much. Wayne, my mother in law, my nephews and shane and tammy and i dont know who lol, it was so much love and laughter and tears lol. Then I had to get settled in...... My 10 days in Slidell actually went quite fast. It included some good PT/OT with Patti and Fran (both really sweet and kind) Chemo treatment 1 was done and the next day I was kinda fatigued and the day after that a bit nauseated. Thanksgiving day my mother in law cooked us dinner and the kids brought it up to Wayne and I. The nurses were nice enough to let us use their lounge so we could eat together at a table. It was so good and we enjoyed it. I had special visitors while there, Shane and his girlfriend, my nephews Austin and Andre', Butsie, Linz (and TY for the yummy stuff and bath stuff) Karen. Ashley, David and Victoria, Wade and Michelle, Grandma Glo, MY ANGLES:Alicia, Kelly,Gwyn,Danielle this visit was one that filled my heart with so much love. Ms Mel and Ms Cheryl came and the next morning Ms Cheryl came back to give me a "flat painted ceramic body" of Fr Seelos. She got it years ago when her Mom, Ms Pat was sick and she is giving it now to me. I told her I would give it to back when I was well or done, and she says for me to pass it on. This is a precious gift. The other special visit I had was Mr Joe Delio. I met him at the Seelos Shrine where he prayed with us before the Oct. visit. He has become a great friend and mentor and I am so Blessed that God/Fr Seelos chose to lead me to him. I won't write about his medical condition or personal life because of privacy but I will tell you he is just a kind man who loves God and Fr Seelos as much as I do. He is amazing. As much as I loved the visits it was time to go home and when that moring came I was sooooo ready. It was now time and I dont know who was more ready, me, Mom, Wayne or the kids lol. The ride home was fine, but I admit that the first few days at home were not so easy. In fact I will write about them in a seperate story up next.

There's no place like home, theres no place like home, there no place like MDA!

As much as I was ready to get home to my house when I arrived it was just overwhelming. I was so thankful to my sister and friends that went in and built a ramp for my wheelchair and powerwashed and decorated for Christmas. I was shocked to see how beautiful everything looked. BUT then I had to go up the ramp and into the front door and that was quite scary just not knowing if I could fit with the chair. I barely do by the way. In fact the whole homecoming situation became quite gloomy to me. I dont want to sound ungrateful cause I am so blessed to be able to be home, but the fact of the matter is that my house is just not handicap acesible at all. The doorways are barely wide enough and I have the bruises on my hands to prove it. My hospital bed is in the back room off of the kitchen and my room. I have had to sleep in the seperate room cause the bed helps me to sit up by pressing a button. In fact last night (12/20) was the first night I got to sleep in my own bed with Wayne and I cant decide what bed is more comfy. I need help sitting up in my bed where as the hospital bed all it takes is a button. The shower is a whole nother story that I dont even want to discuss right now. I was so sad at first just to watch my Mom and Sister and Kids cook in my kitchen and wash dishes and clean up. They were doing all the things that I used to do and that I shoudl be able to do now. I never thought in a million years that I would be dpressed coming home, but I was. I could finally see that my life had really changed and I was not the same person I was when I went to surgery on 10/10. I went to bed those first few nights wishing I ws back at MDA. I just wanted to focus on walking and getting back to my "normal" self. I didnt want to be reminded what I couldnt do every day. I missed MDA, the nurses, my Melanie and Shelby, my doctors. I just wanted to be up in the walker and in the gym. Instead I had to look at my small space and every time my foot gets stuck on the floor just cry cause it wont move the way I am telling it to. I say my floors are uneven and I dont have the space to walk and at MDA there are none of these problems. I guess I have to suck it up and just deal with what I have in front of me.

Friday, August 5, 2011

Back to the drawing board

Well the Stereotactic radiosurgery did not do what we wanted it to do . I am so grateful that I had the chance to try it and yes I am disappointed by it. So its back to the drawing board and it looks like surgery is the best treatment for me. On this last visit to MDA I had the worse time. I am not complaining, but I want those reading this blog to understand that even though I try and remain positive I do have bad days and sometimes those days really run me down. I returned to MDA early (6 weeks post stereotactic) because I was having severe pain in my back, worse than before and I was having some trouble walking. After doing tests and seeing that it didn't work I was told that surgery would be the next step. So with surgery comes lots of tests. In two days I had a ct of chest, an xray of chest, blood work, an mri of the brain, a bone scan and a regular mri. since I was in so much pain and having trouble walking I spent the majority of my time in a wheelchair with Mom pushing me from one end of the hospital to another. Because I had so much back pain I am not able to sit up by myself. I kinda have to get on my side and roll and pull myself up. This is like someone cutting into my back above my hips and tearing me in two. It is so painful I cry. I would never wish my pain on anyone and asked God to take it as a penance for others pain. Anyone who has experienced constant pain knows that this can lead to depression as well. A part of me felt like I was going down that path but I refused to let myself do it. I can't get depressed because that just means I give up. Like my Mom said they could have sent me home saying there is nothing left to do. I am one of the lucky ones. So, now I have to wait for the neurosurgeon to call and schedule the surgery. The first time we met he mentioned taking the tumor out and then removing 2 of my vertebrae to rebuild them and put them back. He said the surgery is pretty intense. Well that's when we decided to try the non invasive stereotactic procedure first. Since then the MRI shows that the tumor did get just a little bit bigger, not much. But I now also have a compressed vertebrae that will need to be fixed. The blessing is that all the tests I had done show no cancer anywhere else, not even any suspicious areas. AND the tumor in the lung has shrunk even more since May. They don't even think I will need any further chemo after surgery unless something pops up or the lung gives me any trouble. Father Seelos, Saint Pio and Jesus and his Mother Mary are hearing our prayers and even though I couldn't see it, I was being healed. So I am home now and waiting for that call. Should be next week I guess. Am I scared - of course I am. It's natural to be scared of surgery. I am even more scared of the recovery because I know it will involve pain and discomfort. The past week has been really tough. Even though they doubled up on my pain patch I am now having muscle spasms in my back which make it difficult to walk. I had to borrow a wheelchair and Wayne had to buy me one of the walkers with a seat and wheels just so I can get around the house. When the spasm hits me it is so painful like a massive charllie horse and I draw up my right hip causing me to almost fall if I am standing. Its not only painful it is scary. I have been so patient and know everything is in God's time. whatever I am experiencing is for a reason I just don't know what reason. I am ready to get on with it and feel better. My doctor said that once the surgery is over I should be great. I wish it were tomorrow.

I want to thank all of you who have not stopped praying for me and for my family. My poor Mom had to take care of me in Houston and push that wheelchair around. I know she didn't care, she loves taking care of me, but at the same time I know it broke her heart to see me in so much pain and so helpless. I try to explain how I feel physically and can't so I get frustrated. I can't hide it from her, she knows when I am having a bad day. I love her and don't know what I would do without her. And my poor husband. He is trying to be here for me, work, take care of the kids (I can't do anything for them) and run this campaign. He was going to give up the campaign and I wont let him. There is no way I could let him give up his dream because of me. I would never forgive myself if he did that. I am so proud of him. I know he and I have not had a perfect marriage, no one does. But , I have never been more proud of him than I am now. He puts me first and I know it kills him to see me cry or ask for help. He knows how I am the one who takes care of everyone else. It's funny, just laying close to him as I fall asleep helps me feel better. Knowing he is there for me. I am so blessed. I am praying that this surgery is  success, that recovery goes fast, and that I am able to stand with him in November when he is elected Coroner. Nothing would make me happier. The rest of my family has been affected too. My kids, my Pop and my dad and my sister and brother, even my ex brother in law and nephews, my in laws. To be surrounded by so many people who love me and want me well. It means so much. I feel for people who have no one in their lives to turn to. I feel for those who don't know what love is. If you love someone and care for them please make sure they know it. Make sure you show them and tell them. It can make the difference in the way they heal. Love makes you want to fight and to live. Without love you don't have anything. And I am blessed to have so much love in my life, and that's what makes me fight everyday.