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.


  1. Ellen you are a amazing woman... a inspiration to so many. I admire everything you have been through and are going through. I am sharing your story with Sandra, I have told her so much about you. Keep up the great work. And like I said when you guys came in for diner if you EVER need anything please do not hesitate to ask.

    Love and Prayers always,
    Laurie Lambert (and Sandra)

  2. That is the most amazing account of your illness. It moved me to tears. Your family is wonderful and does everything for you with love.
    You have something that most people will never know.
    May God be with you and your family. You have more faith and love of God and Family than anyone I know. Hope Christmas with your wonderful family helps.

  3. OMG ....I couldnt even finish reading this too many TEARS...I truely LOVE you with my whole HEART

  4. I wish I knew who commented these above. Thank you for your words and I am sorry I made you cry. Merry Christmas

  5. Ellen,
    you are a true inspiration. Keep your head held high and your positive attitude.

    May God be with you always during this journey...

    Merry Christmas

  6. Ellen,

    I think and pray for you often. You have such a positive and inspiring story. You have brought me to tears!! My hope for you this Christmas is that it will be the most meaningful ever for you and Your family!!!!

    Joy and Peace
    Tiffany Riggins