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Time for some reflecting!

Sunday, January 13, 2013

Well, today as I was preparing and doing my platoon duties, I have also done a lot of soul searching. I'm not sure why God continues to bless me so, but I am grateful.

On last report in with my oncologist, I am proceeding as well as or better than it was anticipated that I would. I can barely wait for my next month's appointment to see how my blood work has been doing the past few weeks. I just love that I am getting to be seen here locally instead of having to make a 3-hour drive to Kansas City and back.

The goal is to get me well enough to go back to KU hospital in KC, and have the benign tumor removed from my brain stem that has been growing considerably in the last 6 years. If I don't get it removed, one of these days I may lose muscle control and not be able to take care of myself or even be able to walk. So I am making getting healthier a priority in my life right now. Hopefully, the leukemia will go into remission and then I can have the surgery (although it is a very delicate surgery).

I am also waiting to hear the results of the rest of my siblings testing to see if any of them will be a match for bone marrow transplant in the future. It seems as though the doctors are wanting me, if at all possible, to have the brain surgery completed and me back on my feet and doing well again prior to the transplant. So, yes, I have a lot on my plate right now. One brother is not a match. It is my understanding that the chemo therapy should take me into remission but the only way I can even hope of a cure is by having a bone marrow transplant. (Incidentally, the benign tumor on my brain stem has absolutely nothing to do with my leukemia except that the leukemia hinders getting the brain tumor removed even though is need to be, and the brain tumor is a concern to all the doctors including my oncologist in case I should need a spinal tap in the future--as it stands right now a spinal tap is out of the question unless it is a matter of life or death as it could cause the brain tumor to cripple me in an instant.)

However, through all of this, it is my plan to stay as positive as I can, to exercise when and as much as I can (right now am recovering from a broken toe due to fall on my icy front porch concrete steps), so it's almost going to be like starting over for me. I have tracked my food to a certain degree but not been dedicated to it since getting out of the habit while being so ill. I have done so little intentional exercise since becoming so ill as well. But too shall change.

My goals at this time for SSS are:
1. Track all I eat.
2. Try to maintain between 165 and 169 p0unds where the doctors are happy as they do not want me "dieting" right now but I do have some limitations on what I can eat--just not how much. A nuetropenic diet is a real pain but if it keeps me alive and well so be it.
3. Get busy exercising where and when I can for at least 20 minutes x 5 days per week.
4. Do my best to encourage and support my teammates for the next 12 weeks.
5. Keep my sense of humor alive and well, keep a smile on my face, and remain gratefulness in my heart.
6. Drink more water. I am pretty much limited to water or weak tea (never did like full-strenght tea). I like a little lemon juice or lime juice in my water for a change of pace, but I do love my water these days. I just need to drink at least the 8 minimum cups per day and I haven't been succeeding at that the past week or so.

Anyway, I am ready to put on my fatigues, stand up straight with shoulders squared away, and march right into this next round as any good soldier would.

Here's to us, our team, and may we do well again this round.

Last, but definitely not least, a big thank you to my team for caring and being so supportive! I love you all and I want to also say thanks to everyone who is wearing the orange bands showing their support.

And thanks to all our leaders for making this team a good one--I appreciate your hard work.

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  Member Comments About This Blog Post:

CHANGINGSEASONS 1/24/2013 10:13AM

    I'm so happy that God keeps blessing you. I will pray that one of your siblings is a match and that everything goes as it should and you are happy and healthy and whole at the end of this journey. HUGS. Incidentally one of my husband's friends was diagnosed with lukemia when he was young..like 19 or so if memory serves me. He had one sibling and that brother turned out to be a match. They did the bone marrow transplant and everything is great. He is just fine. No more lukemia. So, there def. IS hope for a great outcome for you as well. He's probably 30 now and is married and they have one child. Life is good. God is good. You hang in there. You're a very special and kind person. hugs! emoticon

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GSPEIRS 1/17/2013 2:11AM

    Juanita,
You are in my thoughts and daily prayers. I really admire your strength to carry on and do your best. Especially the way you're so positive all the time and never ever complain. My Mom has kidney cancer and an orange bracelet also symbolizes it. So instead of wearing two bracelets, I just wear one in support of you both. I hope that one of your siblings will be a donor match.

Thoughts and prayers are continuously being sent your way.
I Love You!
Hugs

Love and Big Hugs


.

Comment edited on: 1/17/2013 2:13:47 AM

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DRADDIE 1/16/2013 1:03AM

    Juanita- what an open and transparent set of words from the heart! Thank you so much for sharing that with us! You know your Sapphire sisters are soldiers ready to fight with you!! You are in my prayers and thoughts constantly! I'm so glad you're with us again and am so glad to hear these updates!

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TACONES 1/14/2013 10:54AM

    emoticon

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LILLYPILLY24 1/14/2013 10:37AM

    And I'm squaring my shoulders to stand with you. I don't know you, have never come across you on sp before, but reading this blog I am so humbled by how you are facing your health challenges. I've just prayed for healing for you - for good results re. bloodwork, and the way forward for your needed surgery.

Blessings on you today, Sapphire Soldier!
Lisa

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-SEVEN- 1/14/2013 1:54AM

    Hey beautiful!
My best bud, NIMAWEYGH, who just joined the Soldiers this Round, let me know of you. I battled Leukemia in 2011- an unwelcome "Happy New Year" present on 1/6/11, found by a routine blood test. I had no symptoms, and never ended up having any before treatment. I couldn't believe I actually signed up on that freight train to you-know-where, without feeling physically ill. But the tests and biopsies showed almost 50% bad cells. I was stunned, stressed out, scared is too mild a word, and felt pushed into treatment by family members.

It was AML, and I was in the the hospital for a total of 4 months that year. (1st round of chemo failed completely, so I spent 55 days straight in the hospital without going home for the 1st 2 rounds of chemo.) I went home April 16th and didn't know how to be home anymore. I cried often. I had a wool blanket that had "pilled up" over the years, and I spent day after day pulling the pills off, and sitting on the couch. Ugh! I was crushed inside and out.

I went back each month for the follow up weeks of chemo, and then 1 more time where I had 1 week of a bad fever that was an out of control virus or infection. All I remember was curling up in pain and moaning for 2 days until I started to get better, being pumped full of antibiotics. The things our bodies are subjected to with this "cure"!!

My only brother wasn't a match for a bone marrow transplant. He was afraid to tell me. I was relieved he wasn't. I didn't want him to go through the "needles" for me, (He fainted during the blood test, for the love of God!), emoticon and I didn't want him to feel responsible if I didn't make it. I gave his 3rd daughter her big 16th birthday present I had been planning for 2 years early, on her 15th birthday, cause I wasn't sure... She sobbed in my arms. Our family was hurt. Cancer hits hard. emoticon

But sweetheart- there was a match for me. A 23 year old woman in Germany was my match. You see, over there, they all get tested for the bone marrow registry, as part of their regular physicals (I think when they're 18), and they can choose to donate or not, if they come up as a match. Wouldn't it be wonderful if we did that here? She was a 10 point match for me- and even had the same blood type as me already! (and did I mention I am of German descent too?) emoticon

I went in for my transplant in July... and oh my Lord... had the worst round of chemo yet. My fledgling hair that had regrown over the months to about a 1/2 inch, was again wiped out in mere days! It was that strong and awful. (Brace yourself.) They flew the white cells in from Germany in a... you guessed it! A cooler! And pushed them in through the port. (Also a nauseating experience.) Ask for the drugs to knock you out if you need it! Don't suffer, don't delay!

So about a month later, right before my 43rd birthday, I went home. It hasn't been cake, and after a year and a 1/2, I still get tired easily, I'm a little PTSD from the whole experience yet (I found a good therapist in Jan 2012), but I have had no GVHD, and I'M STILL HERE!!

And I'm praying for you. You have another friend today. I hope and pray you can get that tumor taken care of and find your match, whether it be one of your siblings or someone from the Registry. I'm also familiar with having several major medical disasters at once, as I also had/have MS prior to the leukemia! (When it rains, it pours, you know?) emoticon

Don't give up hope for this all to turn out well. You can get through this and start a new chapter in your life. It is a long road, but one you don't travel alone! I was lucky to have my Mom, husband, and even my little boy (who was 5 at the time), lift me up, as well as many friends- some right here from SP. Please come talk to me if you want to. Share your story with me... if you are up to it. I would love to help any way I can, even if I can just be someone for you to ask questions. Everyone that goes through this recovers at a different rate... so don't let me scare you further, if my "little tale" sounds like a horror story. I won't lie, it hasn't been easy, but by now you know that too.
I am thinking of you. emoticon

Yours in BLC friendship,
~Ursula emoticon

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PINKHOPE 1/14/2013 1:20AM

    Juanita - We are standing with you through this. I do hope one of your siblings is a match for the bone marrow. Anything you do in a positive way for your health (mental, physical, spiritual) is a benefit and progress on the journey. Your perseverance through these trials is a motivation to many. Keep it up!

We love you!

HUGS emoticon

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Oh My Goodness, I've been so Blessed

Sunday, November 18, 2012

Halloween has long since come and gone. Dracula partied on my blood samples (just kidding of course), and Thanksgiving is just around the bend, in a matter of days. I have so much to be thankful for this year. Since Oct 15, I have been diagnosed with the rarest of rare forms of leukemia and transferred to KU Hospital Cancer unit, then to the cardiac unit and back home to the cancer unit. I have been so ill I could barely hold my head up and I have been so exhausted I couldn't get on my computer to tell any of my family or friends how I am doing. But through all of this I am grateful that I remain loved by so many and God has given me day after day of continued life. Your prayers are working. My blood counts are continuously rising which the doctors say are a marvelous thing. God is working overtime to take care of my blood replacement and who would not rejoice in this. I started a list of blessings yesterday and believe me, my Sparkling Sapphires are on that list. Your cards, goodies, and emails as well as comments on my page have not gone unnoticed nor unappreciated. What a loving team. Thank you for your continued prayers on my behalf. I am so richly blessed. HUGS to my team; I love you all right back.

  
  Member Comments About This Blog Post:

KJHOUSTON 11/19/2012 9:23AM

    emoticon emoticon emoticon

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WALKINGGRANDMA 11/18/2012 4:10PM

    Youhave such a positive attitude. You were my first contact on the team and I've always looked up to you.

Youare a blessing in my life. My prayers continue on your behalf.

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DRADDIE 11/18/2012 3:04PM

    *hugs and love* Juanita, we're praying and pulling with you!! So glad to hear the numbers are going in the right direction!!

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PJ2222 11/18/2012 12:43PM

    Prayers and emoticon emoticon

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Happy Halloween

Wednesday, October 31, 2012

I know it is Halloween. I just got a glimpse of a witch in my bathroom mirror. Oh how I long to look at the lovely lady I have gotten so used to gazing at lately and dreaming of her at the 165-pound goal. My face, arms, especially my hands and my feet and legs are so huge with water weight. It is almost overwhelming so I don't concentrate on it too long at a time. I just have to remember underneath this frightful exterior there is a loving, caring, special person who is currently in survival mode. That is the top priority at this time. Cancer treatment is on schedule and looks promising at this time. one moment at a time is my motto right now.
emoticon I've contributed so much to Dracula; I know he is gonna party hearty tonight!!! LOL

  
  Member Comments About This Blog Post:

WARRIORGIRL9 11/1/2012 6:10PM

    I totally agree with BeccaBoo127. You are a beautiful lady with a beautiful spirit. Your smile is like sunshine and your laughter infectious. I love you Aunt J.

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35ANGELS 11/1/2012 12:36AM

    You are a strong courageous person. Focus on being healthy and beating this. emoticon

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WALKINGGRANDMA 10/31/2012 9:13PM

    I know it is hard to not look like yourself. Steroids and fluids change your appearance. I hope you are not feeling too many ill effects from the treatments. The other will go away when treatments are finished.

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BECCABOO127 10/31/2012 7:17PM

    You are a beautiful person! Don't let anyone tell you differently, including yourself.

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JILLITA55 10/31/2012 6:55PM

    Tell Dracula to move on

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HOLLYM48 10/31/2012 6:50PM

    Sending feel better wishes your way! Keep on focusing on being healthy and focus on who you are and what your goal is! emoticon

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Especially for my BLC20 team and to Pat for all the love

Friday, October 26, 2012

WHAT HAPPENS IN HEAVEN WHEN WE PRAY?


This is one of the nicest e-mails I have read in a while. so I wanted to share it here, Juanita

I dreamed that I went to Heaven and an angel was showing me around. We walked side-by-side inside a large workroom filled with angels. My angel guide stopped in front of the first section and said, "This is the Receiving Section. Here, all petitions to God said in prayer are received."

I looked around in this area, and it was terribly busy with so many angels sorting out petitions written on voluminous paper sheets and scraps from people all over the world.

Then we moved on down a long corridor until we reached the second section.

The angel then said to me, "This is the Packaging and Delivery Section. Here, the graces and blessings the people asked for are processed and delivered to the living persons who asked for them."

I noticed again how busy it was there. There were many angels working hard at that station, since so many blessings had been requested and were being packaged for delivery to Earth.

Finally at the farthest end of the long corridor we stopped at the door of a very small station. To my great surprise, only one angel was seated there, idly doing nothing. "This is the Acknowledgment Section," my angel friend quietly admitted to me. He seemed embarrassed.

"How is it that there is no work going on here?" I asked.

"So sad," the angel sighed. "After people receive the blessings that they asked for, very few send back acknowledgments."

"How does one acknowledge God's blessings?" I asked.

"Simple," the angel answered. Just say, "Thank you, Lord."

"What blessings should they acknowledge?" I asked.

"If you have food in the refrigerator, clothes on your back, a roof overhead and a place to sleep you are richer than 75% of this world. If you have money in the bank, in your wallet, and spare change in a dish, you are among the top 8% of the world's wealthy."

"And if you get this on your own computer, you are part of the 1% in the world who has that opportunity."

"If you woke up this morning with more health than illness, you are more blessed than the many who will not even survive this day."

"If you have never experienced the fear in battle, the loneliness of imprisonment, the agony of torture, or the pangs of starvation, you are ahead of 700 million people in the world."

"If you can attend a church/synagogue without the fear of harassment, arrest, torture, or death, you are envied by and more blessed than three billion people in the world."
"If you can hold your head up and smile, you are not the norm. You're unique to all those in doubt and despair."

"Okay. What now? How can I start?'

If you can read this message, you just received a double blessing in that someone was thinking of you as very special, and you are more blessed than over two billion people in the world who cannot read at all.

Have a good day. Count your blessings. And if you care to, pass this along to remind everyone else how blessed we all are.
ATTN: Acknowledge Dept."Thank you Lord for giving me the ability to share this message and for giving me so many wonderful people with whom to share it."
If you have read this far, and are thankful for all that you have been blessed with, how can you not send it on? I thank God for everything, especially all my Spark people family and friends.

  
  Member Comments About This Blog Post:

HOLLYM48 10/31/2012 6:52PM

    emoticon

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JUANITAGUERNSEY 10/26/2012 2:22PM

    I am so thankful that this email was shared with today and that God has used it to bless others as well. Thank you God for helping us all when we need it. emoticon

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HAMMLIN 10/26/2012 2:07PM

    Thats so beautiful- thanks for sharing.

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35ANGELS 10/26/2012 12:27PM

    What a beautiful blog. Thanks for the reminder to give thanks for all that I have.

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GODSCHILD2_2011 10/26/2012 12:25PM

    I soooooooooooooo love this. I believe that if more of us would just be thankful for what we have, it would be a much better world. I really appreciate you for sharing this because I was feeling a little down today but thank God he knows what we need when we need it.

Thank you for allowing God to work through you by posting this. Have a wonderful weekend.

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5KGRANNY 10/26/2012 12:02PM

    What a lovely reminder of what we should be thankful. Thank You for the reminder and Thank you Lord for my great fortune.

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You wake up, go to the mirror and a different face stares back at you.

Tuesday, October 23, 2012

Day 5 @ KU
Assignment for writing class in Salina
You wake up, go to the mirror and a different face stares back at you.  Now, you know this cannot possibly be, so your eyes are already blinking as you are moving to and fro, closer and then further away from the mirror staring at the new image.  It's obvious that no amount of eye adjusting is going to make any significant difference.  So you finally ask yourself why is this happening to me? 

Well, life sometimes does this to you. You go to bed one night confident in who you are or at least oblivious to any change ever to subtle.  What happens next is so completely unexpected it scares you.  But, facts are facts.  So you start a trip down memory lane about where you have been, what you have done, who you loved, who you have lost, who your support system is, and you realize you cannot change a thing.  The past is just that--the past no matter what.

Next, you take a look at the present and assess just exactly what this entails.  It can be exasperating at times, a great opportunity for expanding yourself if you are willing to do so, and of course a whole different journey than you ever imagined you would be traveling.  How you choose to react to the formidable circumstances may vary from one moment to one moment, one day to the next day, and even one month to the next.  However, the secret to survival is going to be entirely up to you. God provides a way but the choice is still yours to make.

You have a few choices available.  1.)  Ignore it and hope it will go away; instead it will, in fact, fester until it boils over making you really ill.  2.) Deny it with much the same results as number one.  3.) Accept it and open yourself to learning enough about it to understand it to the best of your abilities.  4.) Keep a positive attitude/outlook.  5.) Pace yourself:  Take one day at a time or even one moment at a time to help you get through the toughest times.  6.)  Pray to your God, as you recognize Him, for strength and endurance.  7.)  If you have a sense of humor, utilize it regularly because laughter truly is the best medication. 

This is what you do to keep yourself as healthy as you can when that new image in the mirror stares back at you. 

At least this is what I, Juanita, would do.


YOU WON'T GET THE BETTER OF ME

Cancer, cancer, image new
Go away you make me blue
No wait, it's okay
I won't ignore you today
You're ugly, that I can't deny
And it's ghastly how rapidly you multiply.

I'm going to accept that you currently have the leading role
But my team of doctors and my Jesus are the ones in control.
I've been reading all I can about you
My body has a lamina which is the glue
That holds my body together.  It is much like the shape of a cross
Where my Jesus took his loss

When he died for me
In order to set me, a mere sinner, free
Whenever I get weary, I will picture this
In my head and feel the bliss
That God planted this cross in me
I saw a picture of this molecule and I believe.

I'll make a list each day to help me achieve
Reflect on it each and every eve'
So what if all I did not do
I did what I could to get me through
I'll pray when need be and twixt and between
My God has a good ear and he knows what I need and what I mean

Even if words escape me and instead I smile
For he has given me another day, another mile
I even thank Him for sharing a laugh or joke
That maybe helped some other folk
I may be ill but hope to never be curt 
But my appreciation show with a kind word

I am adopting the entire staff at KU
They are the kindest bunch no matter what the crew
I'll arrive back home with memories of my stay
Secure that the best kept the worst at bay.
So, my rare cancer mirror image staring back at me
One of these days I will view a new face--one of glee.

  
  Member Comments About This Blog Post:

WALKINGGRANDMA 10/24/2012 10:17PM

    Attitude is an important part of winning. You have a great team of doctors and nurses. Did you know that your doctors even talk to other doctors in other cities and learn from them?

This gives you a huge network of medical people working for you. You have your faith working for you and the huge prayer chain that will continue to work for you.

None of this is fun or fair. You are doing exactly what you need to do to win.

Remember that many here are praying for you.

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CLAIREANNE23 10/24/2012 8:42PM

    Juanita, this is such a beautiful blog. You have such a positive attitude and spirit. This is inspiring. Keep being strong Juanita. We love you! emoticon

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FITLIKENIC 10/24/2012 5:51PM

    emoticon
Sounds like you are facing your Health scare head on... With GOD in control!

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HAPPYSOUL91 10/24/2012 11:28AM

    Very insightful and you will stay on top of this medical scare

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KJHOUSTON 10/24/2012 8:52AM

    You are amazing! I love your positive attitude - you are truly an inspiration!

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AMARILYNH 10/24/2012 8:29AM

    Reading this blog, I have a feeling the new you you see in the mirror is going to be a whole NEW you, better and stronger than ever before! I've participated in Relay for Life for the last two years and am amazed at all the survivors and how POSITIVE and STRONG they are!! Prayers coming your way!!

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SUZIEW27 10/24/2012 8:12AM

    Beautiful Juanita!!! Your go-get 'em, positive attitude is inspiring!!! You are being covered in prayers!!! emoticon emoticon

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HOLLYL7 10/24/2012 8:04AM

    emoticon Wonderful blog, Juanita. You have an amazing, positive attitude, and I know that will serve you well as you face this next challenge in your life emoticon

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ANNEBOO 10/24/2012 6:59AM

    Wonderful Blog!
And I love the Poem.

When My best friend was diagnosed with Cancer she found a Book Called
"There's No Place Like HOPE" by Vickie Girard.
It helped her so much she gave all her close friends and family a copy to help understand. It is a wonderful book.
Hang in there and keepup your wonderful Spirit! emoticon

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