Well another Easter has passed and I must admit I liked this years' better than last. This year I assembled baskets and hid eggs around the house & the backyard. I got to hear first hand, my oldest son's excitement - "I love jelly beans, they're my favorite!" I was able to enjoy Easter dinner with family and try some of everything. I had ham, scalloped potatoes, peas, fruit salad, deviled egg, red pepper & mushroom with dip, cresent rolls & lemon cake. It was all delicious and I savored every bite, especially the lemon cake. I reflected to where I was the previous Easter. I originally was suppose to be out before Easter but I got pneumonia and that pushed my release date back. Ironic that I got pneumonia this year too. I returned to the gym today and it felt good. I was a little tired and my breath was a little labored, but I gave it a shot and am looking forward to Friday when I return.
I've noticed that I became a little preoccupied with my Easter food above that I didn't even mention what an incredible gift we were all given on Easter day. I truly appreciate the gift of the cross and am completely unworthy of it, but am so THANKFUL it is there to cover my blemishes. I know myself well enough to know that I have not fully embraced the meaning of Easter. Yes, I logically understand what happened and why, but being a Mom and being so close to death, I find myself afraid to venture into the whole emotional piece it has. I know that once I am able to humbly surrender this, I can even more appreciate this remarkable day.
I started therapy this week (who really wants to admit that out loud?) too and although it will be tough, I know the journey will be worth it! I am looking forward to some of the 'projects' I will be doing, now that I've had a chance to step back and analyze them and their purpose.
Have you ever wondered what the three grey fish are on my blog? Well, let me tell you... they are grey because that is the color of brain tumors, they are alive because, well, I'm alive, and there are three to represent my husband and boys.
Sorry this post is so random... I just have a lot swirling in my head. For my brain party, I received a devotion book from a friend of mine. Over the years, I have received my share of devotion books but have never really explored them. Well, I am convinced that God orchestrated this one for me. Last week was really tough for me. I was overcome with emotions and felt defeated. One night as I sat in bed and prayed that God would help me work through all that I was going through, He reminded me of this book. I opened it and read the days thoughts. Wow, this fit my life perfectly. Needless to say, I read it first thing in the morning and sure enough as the day unfolds the devotion comes to life. Each day, I have enjoyed what was said and I am thankful for this book and the friend who was used by God to place it in my life (thanks Cathy Jo). Here's what today says:
Come to Me with empty hands and an open heart, ready to receive abundant blessings. I know the depth and breadth of your neediness. Your life-path has been difficult, draining you of strength. Come to Me for nurture. Let Me fill you up with My presence: I in you, and you in Me. My power flows most freely into weak ones aware of their need for Me. Faltering steps of dependence are not lack of faith; they are links to My Presence.
John 17:20-23; Isaiah 40:29-31
Devotional ~ Jesus Calling by: Sarah Young
Thank you again for your prayers & unwavering support. God is good! All the time!
Saturday, April 23, 2011
Good Saturday Morning. My family is asleep so I thought I would take a moment to update my blog which I had been planning all week to update, but then....life happened. Its been a tough week for me. I have to be honest cause I assume that is what people who read this are looking for, Having this new life is tough! Not just get over it, dust yourself off tough, but really tough. I am tried to remain positive through this whole experience so as to focus on the miracles, not my deficits. Unfortunately, this week, some of the deficits, perceived or real, won. I noticed myself holding onto my fears this week instead of letting them go. I have so many fears that I never imagined at 30 I would have. Fears that if I give voice, may just try to consume me. Thankfully, I serve a God who isn't in the business of letting that happen. He directs me and leads my path... and I can't imagine He would lead me to a place where I felt horrible thinking about my fear. Is it real, my fears? Yes, some of them are. But, are they likely? I don't know. No Doctor can guarantee my standard of recovery. In fact, I'm sure I've amazed quite a few with how far I really come. I need to stop myself every once in a while and look back to where I've been and realize how much God has truly blessed me. then press on toward further recovery. I notice new changes about weekly, albeit small, it is there. SO, to make a long story short, if you think of me, please pray also for my mind and how I am dealing emotionally with all that has happened. My family too! I would be amiss if I did not say that they too have been through an incredibly hard time and they too need prayers on coping with it.
So this week... what has happened... lets see....
The girl with two belly buttons - so that's me! The whole where the tube was is closing well but it is sunken, resulting in a second belly button. Oh well, I could always have it surgically corrected, Darren says I should tell people it's a bullet wound, like a feeding tube due to brain tumor, isn't bad enough?
I saw my Neurosurgeon this week and I have been reading a book by the worlds best brain surgeon, and he's got me thinking a lot about my surgery & the outcome. I can't second guess it, but I am trying to deal realistically with the deficits I have and my thoughts and feelings regarding them. Dealing with this at times is kicking my butt! Back to the world's best brain surgeon, I mentioned above... His name is Keith Black and he is a Neurosurgeon at Cedars-Sinai. His book "Brain Surgeon : A Doctor's Inspiring Encounters With Mortality And Miracles," is absolutely incredible. He does about 250 brain tumor surgeries a year. I love his outlook on the brain and how he glorifies God for its magnificence. He says something to the effect of, 'you can't understand the brain, until you understand God.' He's not saying that you fully understand God, but that you approach His creation, the brain, with reverence, humbleness, gratitude, and knowledge. I think I am going to write to him and tell him my story. Back to my Neurosurgeon, every time I go in, I try to have a brainy gift for him. Nothing extravagant, usually something I've made or cooked. This weeks, I set out on the task of making him a brain cake that is almost life size. He loved it and was pleased with new changes I had made too. After I left, he took a picture of it on his cellphone and then when he ran into my sister in the hospital the other day, he whipped out the picture and proudly said, 'look what your sister made for me.' It was basically a giant brain cake pop/ball.
The next day, I made an impromptu call & visit to my internist because I had gotten a cold and didn't want it to turn into Pneumonia and end up in the hospital. She listened to my lungs, took my temperature, blood pressure & heart beat, then she dropped a bomb on me. I would have to go to the ER because of my symptoms and what my body was saying. She said, ' the worst thing is you'll have to stay a few days.' For someone who lived in the hospital for 6 weeks last year, almost died once, got a lovely DVT that could have resulted in an amputated arm, a few days doesn't sound too exciting. Plus, I had to figure out who would watch the boys, how to explain to Zach that I was going back to the hospital to only stay for a few days. UHHHHH terror ran through my head. I met Darren at home and we headed to the ER where my internist had already spoken to the Doctor on duty. I told him what was going on and that I guessed I had Pneumonia. He ordered a chest x-ray for me and discovered I had a small flare up in my lower left lobe. He said Pneumonia there is usually not caused by aspiration (I had not inhaled my food/drink into my lungs), He had the respiratory therapist come a have me do a nebulizer treatment, My blood work & flu test were fine t00. Because of my swallowing troubles, I asked that he order my prescription in a liquid. Because of this, we had to hang around the ER and do an IV of medication. I was so relieved to be going home because I had spent Easter, my favorite holiday, in Rehab last year, and I was determined not to let that happen this year. I finish the medication in a few days and I sure hope that is it for a while. I want to relax and enjoy life, not live in fear.
Happy Easter to you all! What a glorious gift we were given. I have been reflecting a lot on God allowing His child to be hung on a cross for people He didn't even know yet. What a sacrifice! I can't help but cry when I think about that. May this holiday be ever special to you!
Tuesday, April 12, 2011
You got it folks... the latest news here.... THE TUBE IS OUT! GONE! FINISHED! GOODBYE! NO LONGER NEEDED OR WANTED!
Okay...so I'm a little excited. Here's what was going on inside my head the night before & after as I typed it in my phone...
As bedtime neared in our household tonight, I couldn't help but be teary eyed. I knew I would be up & at the hospital by the time the boys woke up. You see, with this procedure, tube removal, I am weighed down with emotions. I am excited, nervous, proud, apprehensive, worried, grateful, unsure, scared, and so much more. I hugged & kissed my boys and read them their bedtime stories. I didn't want to say Goodbye, but I had too, it broke my heart. A new leaf is about to be revealed and I need a lot of God's help to get through this.
Got the tube taken out today! Wow! I sure have been waiting a long time for that. When I showed up to pre-register, they didn't have me on the schedule. Good thing I was prepared and had my paperwork from the doctors office. I got taken back to pre-op and they tried to tell me that they had paperwork to replace the tube not remove it. Ha! NO Way! We got that situation straightened out. I knew three of my nurses, does that prove I've been there too many times? According to my doctor, this should heal quickly and I should be able to play in the ocean in no time.This is a milestone for me! I'm so glad it's done with and praising God, he's healed me so far.
I am posting another milestone too... in picture above is my first meal out since all this happened. I went out to lunch with my Mom and sister and we ate at the Glacier Brewhouse, one of our favorites. I ate only a little and very slow, but there was no scene, no Heimlich, and no embarrassment for me. I am taking it step by step.
Thank you again for your many prayers! God isn't done yet!
Sunday, April 03, 2011
During this whole process we sought a second opinion at OHSU in Portland, OR for my voice and swallow and in the process gained another medical team and procedure. Well, that was about three months ago, and the procedure that had been done was starting to wear off. Needless to say I was hoarse for a few days and we began the process of securing an appointment down there. We got on a plane Monday afternoon and were there by the evening... loving direct flights. We saw Dr. Flint on Tuesday morning and decided to allow my body the full 18 months healing window before we jumped into surgery. He noticed that my throat & voice had changed and was also excited about my ability to swallow. We collectively agreed that I would again return this summer/early fall for another evaluation & potential swallow study to see if my paralyzed vocal chord is planning to return to normal function. If I do have the surgery, it requires that I am awake so that vocal pitches can be assessed. I would also have to stay over night in the hospital and near OHSU for 48 hours to ensure no complications arise. Yes, what I always wanted another scar in my neck to match my central line scars. UGH! Oh well, if that is all I have to do, I am thankful. Later that day we visited Voodoo donuts, a Portland landmark. Anyone who knows me probably thinks its weird I intentionally visited someplace with this name, but it got rave reviews and I had to try the TEXAS CHALLENGE. I will post pictures, I promise. While there we also got a voodoo doll donut filled with raspberry jelly and stuck with a pretzel and we had to try the maple bacon bar. I really enjoyed the voodoo doll and the maple bacon wasn't bad, but definitely not mine or Darren's cup of tea. Since we didn't have to stay until Friday night like we had originally planned due to potential surgery, we changed our tickets for the same flight time just on Wednesday. So to kill time, we went and saw a movie, slept in, shopped & people watched at the mall and finally headed to the airport. Boy was I glad to get home to see my boys.
The week before we left, we had our family portrait done. Hopefully I'll be able to share those without inf ridging on publishing rights.
Good/Scary news... everyone has agreed and the time has come... I am having my tube taken out on the 11th. I have to check into the hospital in the morning and be put under mild sedation so that they can pull it out. Yes, they just pull it out. From what I understand, I am left for a little while with a hole in my skin and the pathway from my stomach to my skin heals quickly. I don't know how long I will have the hole on my tummy, but it will be gone. Only now I get to pray that God continues healing me and that my swallow doesn't fail. Oh, the joys of life.
Enjoy the pictures!