Sunday, March 27, 2011
If you were to look up this word in the dictionary, my picture would not be there. You see, I'm the type of person that has my three year olds 4th and 5th year old birthday parties planned... and my one year olds, 2nd and 3rd. Is this sick? I don't know, it makes me feel like I am on top of things. So how did I stumble across this word today? Well, today, right now, it describes me. I am getting on a plane tomorrow afternoon to head back to OHSU for another consultation and either an injection or surgery, and do you think I am packed? If you know me, you would say I probably packed last week, or whenever I found out I had to go on this trip. Usually, you would be correct, but today, you're not. I have a possibility pile in the corner of my closet with clothes, suitcase and such things scattered, but it has not made it into the bag just yet. I have to make cupcakes for a fundraiser for an awesome charity I am involved in. I have to clean my bathroom and the half bath, so I don't scare off my mother-in-law and mother, that have so generously agreed to watch the boys while we are away for a few days. I need to vacuum and clean the kitchen, and make sure all the beds have been stripped and remade. Oh I Love Chores! Yeah right! So I am updating my blog instead of being super productive during nap time. While my boys (dad included) nap away this afternoon, I chose to clean up my hotmail account and blog. Seriously, I have a problem. I love blogging and sharing with you about how life is going, but I never thought I would use it as a distraction point away from the chores looming overhead.
I don't have much to say as I am waiting for an updated evaluation on my paralyzed vocal chord. I did get permission this week from my doctor to have my stomach tube removed. This of course causes me joy/fear at the same time. Oh well! I will press on and remind myself it is a step forward.
I am including some pictures from the brain party last month, I finally g0t them compiled. Thanks for your continued support. I will be sure to update my blog upon my return from Oregon. I have my fingers crossed for no surgery!
Rachael & I - One of my best friends since elementary school came from Chicago
FOOD - Brunch with Brain Food - Yes some resembled brains, but it was all good for your brain
Lollipops :0) Read the message
Flowers - from Darren & the boys - Man I am one lucky lady! Also had the brain cupcakes I made
Jitana, Darren & I- Jitana is my Nurse Case Mgr. who has become more like a great friend, she came all the way from Tennessee to help celebrate.
Sunday, March 20, 2011
This has been an interesting week... I believe my vocals fold injection done in December has worn out, causing lots of strain on my voice. I hoped that it wouldn't affect my swallowing and thankfully it hasn't. I have been working with Jitana this past week on scheduling a return trip to OHSU to again be evaluated. This is now scheduled and we are waiting for some last minute information before we book our tickets, car, and hotel. We are looking at another injection vs. Surgery. Ugh! If I have some movement in the vocal fold, Dr. Flint will do another injection into the side of my throat (doesn't that sound like fun?) If there is no movement, then surgery, where I am made groggy with drugs and an incision is made in my neck and a prosthesis is placed to make my vocal chord midline permanently. The Doctor wants me awake so he can test my voice before he stitches up. Ahhhhhh! This is all after being violated by the endoscopy procedure where a small camera tube is moved through my nose and into my throat. I know it sounds thrilling, so, who wants to change places with me? Again, we are leaving the boys home with my Mom and Mother-in-law. They are awesome to step up again, so that Darren can accompany me. This time though, I will be eating! Speaking of eating... Did you know I LOVE FOOD! I had my first family dinner (where I ate with everyone else), course they were through with dinner & dessert, and I was still working at my meager amount. I enjoyed the traditional ST. Patty's Day dinner of corned beef, cabbage, carrots, and potatoes. Yummy!I spoke with my speech pathologist Anne this week and she thinks that if I'm still progressing well that we may move to treatment 1x per week at the end of April. Yeah! She also mentioned the hardest foods to conquer (uncooked carrots, salad, nuts), so I told her no problem, I'd tackle them soon. So today I had two pieces of pistachio torte with large chunks of walnut in the crust. I also finally had Moose's Tooth pizza and salad. I savored each bite. This next week I visit my internist to have her approve the removal of my feeding tube. I am excited and nervous at the same time. I have read and asked how the tube is removed and although I am excited to get that out of my life, I'm nervous for the procedure and the fear I might forget how to swallow. I am trying to keep it all in Gods hands and not worry about it.
Tuesday, March 15, 2011
As I mentioned in my last posting, I had incredible nurses, doctors, and Therapists who cared for me through this healing process, but I would be nowhere without my family. My incredible husband who dropped everything to be by my side, fight my battles, speak for me when I was unable, and provide for me & my care at every step of the way. I will never forget asking you time and time again to wake me up from this bad dream. Thank you for the extra love, support, encouragement, patience, and understanding you had for me & the situation we found ourselves in. I have a deeper respect and love for you now than ever before. Thanks for sticking around. I fight for you and the boys. I am honored to be your wife and their mom.
To my Mom and Mother-in-law, how can I ever repay y'all for dropping everything to care for my babies? I can't even imagine walking into a full time job with newborn Kadin and wild toddler Zach. Thank you for loving us enough to do that. Also thank you for being available to help me with caring for the boys over the past year, you have both certainly carried your load. Thank you also for visiting often and bringing the boys in to see me. Although it was tough to see them because I was afraid I'd scare them or they wouldn't know I was mommy and love me, it made a difference in my healing!
Thank you to my sisters Jaime & Wendy! Volunteering to sleep over & going to bat on my behalf was a blessing. Wendy to have a doctor sister was/is a huge blessing and played a large role in my care and treatment. Thank you for stepping in and advocating on my behalf. Jaime, thank you for keeping everyone updated on my care & recovery. I am so thankful to be able to look back and have a record of it all. Thanks also for staying up with me and holding my hand especially after I ripped my feeding tube out. Thanks for the signs of encouragement in my rehab room. My sisters ROCK!
Thanks to Dad & Shari for all you've done for my recovery too. For spending the night, for painting my toenails, for accompanying me to rehab, for towel basketball, final four basketball, sleepless nights talks spent talking, multiple bathroom visits, rides to outpatient therapy and for a pedicure every two months. Dearest Jitana, what to say, my incredible nurse case manager who has been there since the beginning. Who made sure we had everything to go home, who celebrated milestones with me, but with flair. Who kept calling & writing to encourage me. Who travelled all the way from Tennessee to attend my brain party. You are such an incredible case manager and friend. I can't thank you enough! Thank you to the prayer warriors who have been ever so faithful in raising me to Christ. Many of you, I don't know, but I certainly appreciate you sacrificing your time to intercede on my behalf. God has heard each one of you and He has been faithful to your requests. Thank you!
Heavenly Father, the most important Thank You goes to you! There aren't substantial words to express my gratitude for the favor you have showered on me. I don't deserve it, but I am so very Thankful! May I continue to use this experience to bring you glory! Without you, none of this would be possible.
I am sure I have missed thanking someone, and I do apologize, for this was not my intent.
PS - as Easter nears, I am not only reminded of last year, waking up to a giant ducky in my hospital bed (thanks to nurse Cherie - who showed me time & time again God's love) and enjoying on video Zach hunting for Easter eggs around the house (sorry I missed that, it will be better this year), I am reminded of Jesus' ultimate sacrifice made for you and me. Easter was amazing, He proved that not even the grave could touch Him. He endured so much so I could live, and I plan to! May you feel His gentle grace and healing touch, as I have, this holiday season. It's not just about the ham, chocolate bunnies, and other yummy treats, it's about Him.
Saturday, March 12, 2011
Over the past few weeks I can't help but reflect on where I was a year ago. I wonder if this disappears when you are years away from a big event? A year ago from today, I was departing the ICU for PCU on my way to Rehab. I remember those last few days in ICU very well. Ripping out my nose tube during a dream, having my stomach tube placed and the pain that accompanied it, my constant hiccups, no sleep, my upside down hair wash with Joe & Shari and the Princess Leia buns that resulted. I got one of my favorite nurses on that final day, Dee. Dee is awesome and she touched my heart so deeply. She saw me in the beginning and tried to get me to swallow small drips of cranberry juice., she was there when the Picc Line insertion went haywire and stood strong on my behalf with my family to fight injustice, and she was there throughout to say HELLO and STAY STRONG. She even promised me girl scout cookies once I could eat them, who knew it would be the next season for them when I started eating :0) Dee was one of many incredible nurses I had. Joe was another one. Him and his wife Kim where in ICU and I had the privilege of his care one night in PCU. He washed my hair after surgery (few days later) and left me with my first set of Princess Leia buns. Man was I HIP - well on that wing I was. He later on my last night tipped my bed high in the air and again washed my hair with my Step mom's help. He challenged me to breath tests with my spiromometer (sp), a smoker who time and time again blew me out of the water. Ha! I learned to plug my nose with his help and there was no stopping me. He did the night shift so I saw a lot of him because of my inability to sleep. He explained the medication to me, shifted me in bed, ran the potty chair to me several times a night... ask my family for that story, I was notorious for many bathroom breaks during the night hour ;0) I of course missed their company and because I needed assistance in all that, I called on them often. It became a joke and a text update when I moved to Rehab, since I no longer needed nursing help. Let me tell you about embarrassing... having to have someone in the bathroom with you. Ugh! That humbled me quick. Then there was Linda, who I had early on and then at the end of my time in ICU. She saw how nervous I was about moving to PCU and she explained to me that they were only moving me because they knew I was getting better and that it was a risk to me to stay in ICU where I could come in contact with stuff I didn't want to contract. She also held my hand and stayed with me throughout a CT scan I needed to verify my Peg Tube (stomach) was functioning fine because it was so painful. She disclosed to me that ever since she had met me, she had been praying for me, so in the moments before I was wheeled down for my CT scan, she again prayed on my behalf, with me. This was a moment I will always cherish and never forget. I believe this moment is what changed it all for me, it changed who I decided to place my focus on. Then there were other ICU nurses who were younger than me, in the prime of their life, who were so full of energy, compassion, and encouragement. Thank you Krista, Jessica, and Sarah! I had awesome care while there at ICU. I would change a few moments, but what great people God surrounded me with. Thank you also to Dr. Delgado. Dr. Luna, Dr. Kralick, Dr. W & M Downs, and also Joyce, the respiratory therapist who stopped by a couples times a day with smiles, encouragement, and to find out how my babies were. I was only in PCU a few days so I didn't forge many relationships with my nurses there. but I appreciate Dr. Delgado and Dr. Counts coming to visit me too.
I moved to Rehab on the 16th of March and barely had time to settle in before I was whisked off to therapy. Talk about intense! When they came and talked to me about Rehab a few days earlier, they mention the schedule off the cuff. Monday thru Friday, I had Physical Therapy (pt), Speech Therapy (st), and Occupational Therapy (ot), twice daily for 45 minutes each. The therapists I had wasted no time, especially LeAnne. She came to ICU and started working with me. My first memory of her is calling me out. She told me I better show up ready to work, with my big girl panties on, or she wasn't gonna work with me. Well LeAnne is not the timid type, quite frankly, she intimidated me at first. Now I know different! Her pet name for me was Veruka off Charlie and the Chocolate Factory because I would often stomp my feet during therapy and say to her, I want it NOW! She got me walking with a walker, without one, jumping, biking, and falling with grace. She began a good foundation for Heather to work with at outpatient rehab. Then there was Lisa, my speech therapist, who had me spitting mints across the room and into a hospital tray to work on pressure. She continued to drill particular letters into my head, was my advocate for my initial injection to my vocal fold, and endured my first attempt at a Barium Swallow test. What a joy she is. Her smile is contagious and I appreciate so much the note she sent with my new/current speech pathologist to me during my first week home. She recommended Anne to me and began a firm foundation for Anne to work with. Then there was Terry. What a sweet and quiet soul, who always encouraged me and noticed my progress even when I wasn't aware. Terry helped me work on balance and posture as well as coordination and many other things. She always came to get me for therapy and in those beginning days, didn't push too hard. The skills she worked with me where complimented by those in PT too. When I moved to out patient care and therapy, Katy & Kristy, my new OT therapists worked on many new skills that would prepare me for life at home, driving, cooking, and caring for my children. I also had the privilege of working with their doctoral intern Stormy and we did Zumba, Wii, and many games/puzzles together. I started out patient OT with the thought of, what good will this do for me. well it was quite helpful in a variety of ways. Then there was Heather, my out patient PT therapist. I had her twice on the weekend when I was still in Rehab and I thought she was a hard but focused therapist. When I joined out patient, I hoped for her as she was familiar to me. Heather has become one of my favorite people. She didn't let me slide or slack off, she always expected work. She let me have "I hate tumor days!" She really listened to what my goals where and pushed me toward them. She noticed differences in me no matter how subtle they were. She accepted my suggestions and incorporated them into our workout. She listened to me and genuinely cared. It was hard to say "goodbye' to treatment with her, but she gave me great knowledge and taught me a lot! Then there is Anne, my dare devil speech therapist. She is amazing! She really works hard to find where you are and help you succeed at your dreams. She is creative in therapy, which is a breath of fresh air and she truly believes in your ability to better your situation. She makes no promises on what you will accomplish, but she is a giant cheerleader when you overcome a barrier.
What an amazing group of people and I haven't even mentioned my family or Jitana, my nurse case manager, who has become just like family. I get them in my next post.
Thank you also to all those who have and are praying for me. God is and has been listening. Thank you for being an intercessor on my behalf.
p.s. including a picture of me in ICU.. my many cords... a few days before I got outta dodge (my mom's tem) sitting on a chair, being goofy... side note: they were pumping me full of drugs... I was a little loopy
Sunday, March 06, 2011
I think my title summarizes how I feel right now. Sure, its easy to praise God when stuff is going well, but it sure takes prayer, faith, and determination to praise Him when life seems like its in the crapper. Sorry if that offends anyone (not my intent). It seems like if I look over the past year, I have had plenty to be mad, sad, angry about, but with God next to me, He has allowed me to look past the confusion to the beautiful blessings He intended for me. Many people ask me why I think this happened to me... and all I can say is, why not? God had a lesson in store for me, and it took this thick headed girl a brain tumor to figure it out. Do I have it all figured out? Not in the least, but I am able to reflect on blessings I have been part of and rejoice in the goodness provided. Am I where I want to be? No! I still have more to work on, but I am grateful for this journey and what I have learned. I appreciate life more and am thankful for everyday I get. I no longer think I am entitled to each day, but am excited I get another.
This has been a remarkable journey! I hope I can remember it all as I would love to pen a book about this experience and the grace God has given me. I want to use this experience to encourage others who are struggling, to turn it around and search for the miracle. I am so thankful that God gave me a sense of humor because that has helped me through a lot of tough times. I have probably just presented to sunshine and rosy side to you because I would rather save you from listening to the depths that recovery presented to me. Its just not part of my personality to gravel and complain about how unfortunate or not my situation has been. I would rather shout my praises and have you rejoice with me.... so here goes....
GOD IS SOOOOOOO GOOD! After a year of no-eating, but tube dependant, God has freed me from that. I will admit this has been the hardest part of this experience for me. Our society is food obsessed and it seems that we have tied food to everything possible. So...being tube fed presented a few frustrations for me: date nights, family meals, birthday parties, friends get together, travel, etc. I was always the odd ball out, not only did it make me uncomfortable, but it noticeably made others around me uncomfortable. I have been slow to share progress in this area of recovery because it is slow and because it is scary to me. I was afraid if I told people I was starting to eat that it might go away. So here's what's happened recently... On New Years Eve, I finished my first mini container of ice cream. At the end of January, I joined the gym and as my reward to myself for going to workout at 5 am, I began my addiction to McDonald's Mocha Frappe's. Yummy! Hey, the high calorie drink is allowing me to gain some weight back ;0) On February 7th, I ate 1/2 a waffle soaked in syrup (a trick to helping you swallow is soak it in syrup or wash it down with a drink.) On Valentine's day, I enjoyed a piece of toast with sun dried tomato hummus. Remember at this point I am still doing my 5 cans of Jevity a day with any food I consume as extra. Then on the 16th of February, I tackle the Cinnamon Melts from McDonald's. The days after my birthday (19-20), I enjoy two meals of Fettuccine Alfredo. Then I plunge into the world of eating, trying everything I can: cereal, pop tarts, jelly beans, burritos, pizza, ice cream pie, etc. At this point I drop my Jevity consumption to maybe a can per day. The last time I used Jevity was February 19th, the day after my birthday. I used my tube for taking my medications, which are tube related and will go away when I have the tube pulled out. My speech therapist has given me the green light to initiate this, I am just making sure I have this eating thing down before I take away my safety net. I hope to have my doctors approval by the end of this month and an appointment with my gastroenterologist to remove my tube. I am a little scared of this all, but I have had fears at each cross road in this journey and God has been faithful to get me through it. I ate my first Subway sandwich yesterday and it was heavenly. It was only 6 inches and it took me an hour to eat, but I ATE IT! Praise God! I expect that my swallow will continue to get better and I look forward to the day I can eat out with my family.
Thank you to all of you who have been praying for me. Some of you have specifically been praying for my swallow and I thank you so much f0r being faithful.
Including pictures of the waffle, my 'breakfast of champions' from McDonald's, me being a pigo, and the beautiful flowers Darren gave to me to celebrate my first year with a touching note that read "Thanks for fighting for us! Love Darren, Zach & Kadin" Side note: I am SO BLESSED!