Tuesday, April 24, 2012

Missing? Yep, that's me! I have been missing. Why, you may ask? Because I have been out ENJOYING the hell out of life:-)

Funny, when I was sick I would look at blogs for hours on end, read Facebook pancreas stuff, search my life away for information to help me get better. The truth was, I had no life. I used to, oh I used to have such a fun life! I was always out with my girlfriends, my boyfriends at the time, vacationing, studying for school, enjoying the life that was party and fun like it should be in your twenties. Then, for a while things stopped. Even though I kept going through motions, things stopped. And guess what? They are back again. Life is back again, in my house and in my heart. And it is going to be that party for the next 3.75 years left of these beautiful years called my twenties. Oh, and I can't wait!

I thought before, before when I was sick, I would be part of groups to help others. I thought I would volunteer to help pancreas patients. I thought this was my life calling. I remember a lady, Nicole, saying, in one of the blogs I read about this surgery, "it is amazing how your life fills up with other activities when you are not in pain." I remember thinking that she was not on here blogging anymore because she is raising a baby that she had after her life began again, after she recovered from her surgery. I was jealous of her. And guess what? I now know what she meant by that quote. I am 9 weeks into my recovery. Three weeks ago a funny thing happened. I felt better. Better than I had felt in three years. I felt like I used to feel every single day, amazing! And I no longer want to talk about that word "pancreas" and I want to move on with my life. I stopped looking at blogs, I stopped looking at sad stories on Facebook. I stopped all of that about a week ago, and I have experienced true happiness. True happiness away from this horrible organ that robbed me of my joy in life. And I want to keep it that way. Forever.  I want to stop blogging about it, because I am ready for the life I should have been living while I was blogging, reading blogs, searching Facebook, or at home on a Friday night. I can go out again! I can live again, and I don't fear a hospital stay within the next 15 days.

I keep waiting to turn some horrible corner, how sad. I keep thinking "this is too good to be true" and my eyes well up with the happiest tears. I am so happy I can't put into words how I feel about it. I have no pain, I have no problems, and I am OFF insulin. My islets are working, I am the 30% that this transplant works for, I am feeling better than I have ever felt. If one day "the little islet cells that could" stop working, well that is okay. Diabetes doesn't hurt, trust me, I have tried it:-) I can handle it, and I can handle it while continuing to live life. And yet, some small little part of me looks at life and knocks on wood. And does the sign of the cross. And thanks Jesus Christ, my Savior. And asks my Mom and Dad if they think this will end at some point. We all seem on egg shells. Am I lucky or what?

So cheers to life, and goodbye to pancreas blogging! This chic is moving on, moving on with my 20's. Moving on with my life. Saying goodbye to my pain. Saying goodbye to my past (but not to answering the call of those who are still suffering and may need my help). And thanking God every minute of it for allowing me to be this well. I didn't know life could be this good again. 

Super Mom

Thursday, April 19, 2012

Mother's Day is coming up, and this year I am doing something a little different. I am putting a LOT of thought into what I do for my mom on this day. I want it to be the most special Mother's Day celebration we have had as a family. Why? Because my Mom is the strongest person, not even lady, I know. I have heard so many people say this about their parents, because we all love our parents, but let me tell you why.

Many people don't know this, but my brother Tyler had ALL leukemia when we he was 6 and I was 4.  This was before the days of blogging and Facebook. Our community of Litchfield Park wrapped their loving arms around her then just like they did again when I was facing my illness. She didn't blog. She didn't write about it. She really didn't even tell people. She is so different than me in that regard, much more private. Her key phrase is "Don't put this on Facebook" when things happen around the house because she knows how much I love Facebook! What's my point? My point is that I would not look at things the way I do if I didn't have my mom.

When my mom got Tyler's cancer diagnosis she was home alone. The Doctor told her Tyler needed to get to the hospital ASAP and that it was cancer. She hung up, packed them each a bag, told Tyler the truth, told him he was going to be just fine and drove him to the hospital. She said on the way she decided Tyler would not die. After that she went out and got a job in the middle of Tyler's chemo treatments. She had to. My Dad was young in his career and it wasn't going well. We needed money to pay medical bills and she needed a job. She not only got a job, she switched career fields and she was required to go to school for licensing before hand. She found a job where she worked 6 days a week, supported our family and paid Tyler's medical bills. She was a "hospital" mom but never complained about the cards we had been dealt.  I would say she even managed to enjoy my dad, me and life at the same time. She dug deep in her faith, and she knew it would all be okay. And it was. And it is. Tyler is with us, and he is cancer free.

Three years ago she repeated the above story, but this time it wasn't cancer, it was something we did not have a clear understanding of, it was hereditary pancreatitis. She did not panic. Maybe God prepared her somehow with the above experience.  She sat with me in the hospital all 35 times I was admitted. Two months ago she went through a battle with me and continues to today. She rubbed my back when I threw up, held a washcloth on my head as I cried in the bathroom about all the digestive issues. She rushed to Safeway for purple Gatorade and to Walgreens for prescriptions at all hours of the night. She held my hand as I endured countless needles, sticks, and procedures. She placed a cross in my hands right when I woke up from my surgery. She spent the night with me as I cried out in pain. She never lost hope, she always encouraged me to find the bright side in every situation.

My mom does not dwell. She does not seek attention from her trials she is given. She does not envy others, and she does not feel sorrow for her own challenges. She faces them with a smile. Even these trials. Now do you see what I mean? She is like me, always right, which can be an issue for the two of us strong ladies sometimes, but I love her and this is why I want to give her a special Mother's Day, one full of ways to show her how much we love her. She deserves it.

Spin That Wheel

Wednesday, April 18, 2012

Just gearing up for a successful Vegas trip, complete with several rounds of "Wheel of Fortune" and maybe even a little Blackjack. I have been to Vegas a few times but this time it is so much different. We are going, my Mom, Dad and I (and an old friend). This Vegas trip is different than the one our family took for my 21st birthday.   It is much, much different.

I look back on events and I think what I would have done differently had I known "this was coming down the pipe". I say silly things like I would have partied more in college, or drank a few more dirty martinis! But truthfully, I think I would have let go more and let loose. I am uptight sometimes, and I don't RELAX nearly enough. My oldest friend Katie, has known me obviously my whole life and she always tells me to  relax! I try to tell her to get organized and start worrying, (kidding) but life is all about balance. She has the opposite personality as far as stress goes, and I admire that about her. This weekend I am going to strive to let go and relax! I can't wait. I think I will be really good at it-)

This weekend is all about the celebration of a successful surgery. I am spending it with my Mom and Dad, who worried and prayed their daughter would be okay every day and continue to do so. They worry, wake me up to check blood sugar, ask how I am feeling more than a few times a day, help me with all of my doctors appointments and medications, and are always with me if I get sick. This weekend we celebrate the gift of life, the fact that I am still here and the success of the surgery. We are so pleased with how it has progressed and we are so thankful that the transplant is working. Of course nothing is perfect, but it is a new perfect for me. I am relaxing, letting go, and enjoying the gift I have been given by Dr. Rilo, Dr. Gruessner and God. I am not sure how I can ever thank them enough.

p.s. I am praying that this weekend I am blessed with good health, the ability to eat delicious meals, and just plain FUN! Lots 'o it! Oh and a huge win! A girl can dream!


Sunday, April 15, 2012

Jessica Marie and I enjoying some Mexican food, per usual.

Something nerdy: I just stepped foot in the house from a night out with my girls. What's nerdy about that? It was so normal, so amazing, so unusual for me that I wanted to remember everything and blog about it right away. I wanted to remember how HAPPY I felt, right now, so I needed to write this before I lay down my head to sleep tonight.

Euphoric.  It's feels like doing something you have wanted to do, but never thought you would get the opportunity. Maybe it's a trip you have always wanted to go on overseas or some far off land you have seen pictures of, or a degree you always thought about going back to get or a dream job if you had all the money in the world and working was "just for fun". Have I lost my mind? My 3 girlfriends just dropped me off, probably not thinking twice about our night out, or maybe even thinking it wasn't as great as their last weekend. But to me it was a real milestone in my recovery. A HUGE milestone in my recovery. To me it marked something so much bigger than just a night out. It marked doing something that I was not sure I would be able to do, even 3 weeks ago.

Tonight: What does 8 Weeks and 2 Days Post-Op look like? (and one day I won't count anymore either)
I ate a delicious Mexican feast at yep you guessed it, Old P!
I drank a glass of WINE! Real wine, I nursed it all night, but who cares, I still got to have one.
I laughed, and laughed and gabbed with girlfriends.
I enjoyed chocolate cake (with a side of insulin, so good though).
I enjoyed company of great friends.
Tonight before bed I will be praying God continues to bless me on my journey back to health.
I felt normal for the first time in a long time!
Gina and I! Sad I didn't get a picture with my roommate and soon to
be b-day girl Jackie, but hey I am sure there will be plenty more nights for that!

Eat, Drink and be MERRY!

Friday, April 13, 2012

A friend asked what I was up to tonight and my response was "eating, drinking, and being MERRY!" It feels so great, I forgot what it was like to eat, drink and just have a smile on my face!

I went to my docs appointment today (just a check up) and was told I am doing amazing and shouldn't change a thing.

"Just keep doing whatever you are doing." -Doctor

I have never been on any long acting insulin because I never needed it. I had heard from most people who did the surgery that they were on a long acting type of insulin, so I asked why I wasn't today. I always worry that I am missing something. The answer- If they would have given it to me, I would have dipped really low in blood sugar because for whatever reason my islet cells have been working like normal since day one. My docs wanted to keep me on insulin when I ate, because they wanted the cells to "take a break". The great news is I take 2-4 units a day, and that is IT! That is really nothing. I can't take more than 1 unit no matter what I eat, so I no longer count any carbs because I would drop too low if I ever attempted to take 2 units with a meal. The docs today said just keep taking one for a bit and we will get you off all insulin shortly! WOO HOO. I am that 30% for now that won't require insulin. I remember thinking 70% was so much bigger than 30% when I was playing my odds out in my head. Anyways, not much else to write, because I want to get back to life:-) Enjoying life, a beautiful thing! Thanks for reading and praying, it has changed the outcome of this surgery and my outcome has been watched over by the one and only: GOD!

And...You all know I was so worried about the "frozen pea" and my doctor says... dun dun dun... don't worry about it! He says to let nature run its course and they will heal. If it doesn't, he says its just tissue, and my body will literally PUSH the tissue out to the top of the skin if it doesn't want it in there! PHEW. I can handle letting nature take its course! I can handle a little scar tissue, I may have gone a little overboard worrying, because I had heard of people needing surgery for hernias. The doc laughed when  I told him my fears, which made me feel much better!

The Greatest JOY

Sunday, April 8, 2012

"In the dust of sadness comes the greatest joy" resonated repeatedly in my head today. It was made in reference to a young boy who went off to war and came home to America a happier, changed man. He had looked death up and down, and had almost been taken away by it.  People whispered about him, they thought he would be angry, or disturbed, as young men who have seen horrible things are expected to be. As I stood united with my family, the four of us, I kept playing a reel over again and again in my head. My eyes welled up with tears, and I didn't need to speak to my family to know we were all on the same wave length. I kept thinking of everything we have been through together in the past 7 weeks and even 3 years before that.

Getting to the JOY is part of the journey. It takes working your way through the darkness, the sadness, the rough stuff, to find all the joy placed in your life. The solider was facing death and saw things that no one should see. He faced death and then he had JOY when he arrived home. He was a changed man, a happy man.  Jesus faced pain and suffering for us on the cross so we could have a life full of JOY. Even I faced sorrow and pain in my life for a great deal of time, and now I appreciate the days I experience JOY with my family and friends.

I originally wrote a long winded approach to this simple message above and I deleted it. When I arrived at church today Tyler, my brother, reached over to me and whispered "I read your blog this morning." I smiled, and moments later my dad said "You should write an Easter post." I felt encouraged by the men in my family and it brought me joy. I was never alone in my journey, and never will be, because for whatever reason, I was chosen to have parents who taught me how to love people and forgive. I don't know why I was given to them, but I am thankful for that today. I am thankful Jesus chose to die for us and give us JOY. I am thankful to have experienced pain and sorrow so that my joy can be even greater than before. I guess you could say my whole family has "changed" and I am pretty sure it's in a good way, a joyous way. HOSANNA!

A Frozen Pea

I have a prayer request for, well, myself. Is it okay for me to do that? I hope so! The other day I discovered my incision has a little "frozen pea" feeling bump on it. It is right on the incision, and doesn't go anywhere when I touch it. It is not visible from the eye, only from touch. It makes me nervous, and I called my docs (again, on the cell phone, see how nice that is?) and they said they would take a look at my appointment on the 10th (2 days) but I am still so nervous! I would like to pray that it is just scar tissue that doesn't need to be removed or touched and that it will just go away. I would be pretty sad if it had to come out, and I really pray for no more surgeries, ever, unless it involved getting a screaming infant in the end. Get it? Okay, phew. So if you could please pray that the bump on my scar is nothing important and that my body will heal it on its own I would be so thankful. I believe I can make that bump go away by praying and I hope others will join in with me! GO AWAY FROZEN PEA! Amen:-)

Look at all I have been up to...yes lots involves food. See why I can't have any set backs? I have come so FAR!
Being goofy after I learned to curl my hair like this!
Had lots of practice time:-) Thanks Tracey for the lessons!

Katie has the one with me biting into it. She said she hadn't seen me eat a burger in at least a year and a half! Stupid pancreas! Not anymore:-) And I didn't get sick at all. Must have been what the doctor ordered. 

Yum Mexican, I have been to Old Pueblo so many times so I switched it up this day, but usually I am eating Old Pueblo. 

Sweet Coco's (Cole) and Evan! Evan loves sweets so much he helped NeeNee and Mommy eat their frozen yogurt! Mostly spend my days with my mom and these two and their mom! Pretty fun being a stay at home mom with Katie during recovery (even though she works too)! LOL We are loving it. 

My Child is the Best

Gruessner (left) and Rilo (right)
They saved my life, cheeseball? Maybe, true? 100%!
Whitney, you don't have a child. The children? Arizona, Minnesota, Baylor, Cincinnati, South Carolina. These Universities perform the total pancreatectomy with auto-islet cell transplant. Anyone who has had this surgery, and had a positive experience, suffers from “my child is the best syndrome,” (the term was coined by Heather S., but I loved it) which is similar to that of a parent in a competitive setting. Except this isn’t a competition and lives are at stake, so the people are passionate. I am one of those people. My surgeons at the University Medical Center-Arizona are certainly the best.
A lady once told me to expect to be half the person I was before surgery.   My immediate thought was, “What a jerk” but now I pray she now feels much better than 1/2 the person she was and I forget about it. I only talked to the positive people before surgery and by mistake this lady! I wouldn’t allow someone to tell me how I was going to be after my surgery. The truth is I am doing well, but I still have the good and bad days, and some days I feel better than before my surgery.  My pancreas was a diseased and sick organ. It needed to go, and when it did my whole body felt better. God, prayers, luck, my body and its reaction to the surgery, and the biggest factor, my doctors have all played a role in my recovery.
I appreciate some of the varied approaches my doctors in Arizona took and I think some of them really played a key role in my smooth recovery. I do believe that not having any feeding tube, G or J, helped me a great deal. I was able to eat solid food day 5, and had my stomach gunk suctioned out through the hole already in my nose! No matter what way you look at this surgery, you will have some cramping and nausea with eating (my post operative pain in the butt!), but the longer you tube feed, the worse those cramps can be because your tummy is out of order longer. I am at week 7, having very little nausea and eating burritos and egg sandwiches (or whatever I want). I have gained 11 pounds so don't worry, weight comes back fast, and probably never stops  (yea I know, wow didn't know that till tonight). I also appreciate that my scar is only about 5 inches and is a thin line that had no stitches nor staples. That has nothing to do with my health and everything to do with my vanity, but I am very thankful the docs did that for me. If glue and strips are available, then why not right? Now instead of having two huge tube scars and a giant incision with staples, I have this very small scar which made my healing less painful too. One more thing that is the most important part of this post is feeling two things at your doctors: connected and comfortable. I had every surgeons cell phone number. Do you know how weird that is?  If you can’t say you do too where you are going, please ask me about Arizona! PLEASE. I called about pain meds, I called when I had blood in my stool at 3 am, I called about a doctor I did not care for, I called all the time. And they answered, and they fixed problems, and they helped. Number 2, comfort. I felt great in Arizona because I lived here. I lived 2 hours away. There is no greater feeling than being close to home. Even if its an hour flight, how much greater than a cross country trip!? If you don’t feel 100% comfortable with the center close to you, its probably worth it to travel, I would have too if I felt that way! Hope this “advice” column helps people as I know many struggle, like I did, about where to do this surgery. I wish I had something to read like this so that is why I wrote it. 
Like I said, all the centers do amazing work and all of them have one goal in mind, helping the CP patients! That is the real goal, and I wish this disease was not so unheard of and that every state offered it. But, it is getting more and more popular and more states are offering it. Do what your heart and gut tell you to do and you will be in good hands where ever you choose! But most of all call me and I will be your cheerleader! Anywhere you are, I will! 


Tuesday, April 3, 2012

Today was a beautifying day for me! It began by me throwing up my smoothie that I made, and having stomach cramps, but I rallied and moved on! THANK GOODNESS.  I had a hair appointment (by my amazing friend Tracey) and a spray tan. This girl was WHITE before, and something about being tan just makes me HAPPY! I can't get in the tanning beds or lay out because well it's bad for you and causes cancer, but that's not really why. I would in a heartbeat but I am still wearing a pain medicine patch and it prohibits both of those lovely things. So I sprayed my way to darkness. Then, I went and got these two products below and a new curling iron to try and replicate my look below. Tracey is a pro, although she did give me some lessons and tips, I am sure it won't look like it does now tomorrow. I hope so though. Do you think if I pray to God for that I will confuse him? I have been pretty deep lately, tonight I am feeling LIGHT. Amen to that. Light is good!
Enjoy the new topic. Fresh. Upbeat. Having fun. Finally.

Night cream and Eye cream. I really need BOTOX,
but am settling for these two remedies. I think I may have frowned too much during
all my pancreatitis attacks! 

My hair that I shall recreate in the morning and (as I practice positivity) it will look just like this:-) 


Monday, April 2, 2012

I am blessed.
I am powerful.
I am feeling better.
I am happy.
I am eating again.
I am choosing positivity.
I am loving God.
I am loved.
I am bragging.

Six Weeks and 3 Days

Sunday, April 1, 2012

Today marks six weeks and three days since I had my pancreas removed (and part of my stomach as well as part of my small intestines), my spleen rewired to use a new blood source, my abdomen cut open, and my bowels completely resected! It also marks 6 weeks and 3 days since I had my islet cell transplant. Click on "my surgery" to learn more if you are just reading! Going into it I didn't know what six weeks would look like, but I tried hard to imagine it. All bodies recover differently, but here is my experience below. Enjoy.

What does 6 weeks and 3 days look like during this recovery?
1.) You will not have any pain, pancreas or incision. I am weaning off of all medications now. Recently, I overcame a huge hurdle and was able to stop taking a powerful medication without a single issue! The docs were amazed and happy.
2.) You will email your doc asking: "Do you think I will be able to have a glass of wine again?" Response: "An occasional glass of wine or cocktail won't damage your liver, moderation, and when you feel up to it,  it would be okay. I think you must be feeling better." Umm....I am STILL SMILING! Not like I want to chug bottles here, just enjoy the taste of a good glass of Chardonnay. Of course I will wait until I am off all the medications before trying this. I am a worrier and hello, I want it to be a fun experiment, not a paranoid one.
3.) You will feel up to cooking a new dinner wearing your mothers cherry apron, from the Barefoot Contessa, which one of my Theta Sisters sent my way to "fatten me up". Hello Fillet Mignon roast, rare done.
4.) You will feel so great that you will be able to work a little and show some houses, with the help of your mother's driving. That feels so great even if its just a little work! So great!
4.) You will not get sick eating if you remember the cardinal rule, eat only what will fill a salad/small plate, nothing larger or you will see it again in the toilet. Small is best. Eat little bits all day long, graze you cow, graze!
5.) Your new anti-nausea, motility increasing medication, reglan, is working and you have not thrown up since you started it. Also, you have not had any "involuntary muscle movements" yet so phew. On a role.
6.) You will rip your pain patch off after dinner and dip into the hot tub with your Mama for a nice soak. Any cramps you may have gotten will not happen, because you are relaxed.
7.) You will lay in bed thinking, wow, I didn't throw up today or yesterday and I only took 1 unit of insulin ALL DAY because your blood sugar is so well regulated that you didn't need it. Hmm. Amazing.
8.) You will pray and pray that tomorrow will be as great as today, and that each day eating will get easier, because it was horrible not too long ago. As we all know when we do this surgery there are good days and bad days...blah blah blah doctors.
9.) You will be thankful for your family. They are your best friends during recovery and sickness. BEST FRIENDS. Without them I would not be positive, I would not be happy, I would just be so lost. The end!
10.) You will love life again and you will know that the end is in sight. The light is waiting at the end of the tunnel, its waiting for you to jump out into it. You can do anything you want now. Travel, laugh, dine, wait, work, plan, love. Anything you want, hello oyster! You are MINE!
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