The Pain in my Head

Well, I went to the Neurologist last Monday. I have had headaches every day for about 2 months. Nothing would make them go away! Well, I went to the Neurologist and I was "OFFICIALLY" diagnosed with Migraines (DUH!). I say that I was "officially" diagnosed because when I was in the hospital getting chemo, I had these same headaches. Well, the pain management doctor about jumped down my throat when I said I had "migraine-like" headaches. Anyways, I now have been diagnosed, so I can say that. I was very impressed with the Neurologist. She spent 1 1/2 hours with me personally. Not many doctors do that. Anyways, she explained what a migraine was and how it worked. She thinks they are being caused by my insomnia. I mean, not sleeping for a little over a year, that couldn't have any effects...could it?!?! Well, she put me back on sleeping pills. She also gave me a pill to help with the "paralyzing" of my legs in the night. She thinks I move my legs in the night and that this is a type of sleep apnea. This is part of what is causing me to not sleep. So, I'll begin those tomorrow night with the sleep pills. After a month or so, if this works, I'll start slowly weaning off the sleeping pills. She also gave me several samples of some other meds to help with the actual pain. It isn't a "pain" pill, but it's supposed to help. Anyways, I'm trying those to find which one works for me. It's trial and error. Well, needless to say, I've been sleeping some this week and actually went a couple of days without a headache. Let's hope this is the answer. She doesn't feel that I need a sleep study yet. Please pray that this solves the headaches. They are miserable!

I had to get copies of my MRI's and CT's for my appointment, so here's some pics of my head. I really do have a brain...LOL!

My skull

My brain with contrast

Happy Fourth of July!

Wow, what a difference a year makes! Last year, the fourth of July was not something to celebrate. I spent the entire time sick and sleeping until I ended up in the ER in Monroe at a not so nice hospital. Then, once I was released, I spent one night out and then traveled back home to find myself in the ER at ETMC and staying in the hospital for a week or so. This was just the beginning of my trip to ICU. Needless to say, this year, we CELEBRATED!!! We stuck with our family tradition and went back to my Aunt and Uncle's lakehouse. It had been close to two years since I have been in the water (lake or pool), so I spent about 75% of my time in the water either swimming, floating, on the jet ski or in the boat. The kids had a blast tubing and swimming and playing with all their cousins. I love the 4th of July, because not only does it signify our freedom, it is the one time of the year that my entire family gets together (my side). We absolutely love it. This year was also special because it was my uncle's 70th birthday- HAPPY BIRTHDAY UNCLE BOBBY!!!

I hope you and your families all had a great holiday and you remember just how blessed we are to live in America! Here are a few pictures of our great weekend!

On July 3rd, we went to my sister-in-laws parents house for fireworks. The girls had a blast with the sparklers. This is (L to R) Emilee, Walker (my nephew), Kay (my sis-in-law), and Natalie

More Sparkler Fun!

Fireworks on the lake! We went out in 3 boats and watched the fireworks! It was beautiful!~

Natalie- yes, she got a little sun, but I PROMISE she wore LOTS of sunscreen! :-)

Emilee- being silly and showing off her braces

My Nephew Wyatt and Sis-in-law Kay. Wyatt was calling for birdies- so cute!

Happy Birthday Uncle Bobby! (Poppa to his grandkids)- so glad I could share this birthday with him!

L to R: Wyatt, Natalie, Emilee, and Walker in their 4th of July outfits- I have to say, these are 4 of the cutest kids I've ever seen (not that I'm biased in any way!)

Such an Inspiration

In October of last year, my aunt told us about this young mother named Brandy. She worked with my cousin and was having a very rough time. We began to pray for her. I would tell you more, but I'll let you read the story. I'm sure you will be just as touched as we were. She was featured this month in Lafayette's Face Magazine. Here is her story...



Warrior
Brandy Dillon lost a part of herself. And she's finding that life Part 2 is a whole new adventure.

Story by AMANDA BEDGOODPhotos by PENNY MOORE
* * *
Brandy Dillon’s eyes have a rare quality. In them there is a sense of absolute hope. When she speaks there is an immediate sense of resolve. A kind of fight until your knuckles are bleeding determination.And perhaps even more surprising is that with that comes a kind of gentleness and peace. It’s a startling combination of qualities that you wonder whether she had before it happened. Before everything changed. Before her body was ravaged. Before her steady American-dream existence fell into tiny little pieces.But, Brandy Dillon doesn’t live in a world of befores and afters – she lives here and she lives in the future. It’s a future that carries the promise of more independence and surely great challenges. They are challenges she’s sure to face with those hopeful eyes, gentle smile and fearless determination.

* * *
October 20, 2008, Brandy Dillon gave birth to her second child, son Isaiah. Isaiah came four days after his due date and after a natural birth Brandy was discharged within two days with a fever and heavy bleeding.“That was a terrible restless night,” Brandy says shaking her head. “I had numbness in my fingers and toes.”Brandy slipped into a hot bath to relieve her troubled body.“My whole right hip went numb,” she remembers. “I said take me to the ER. Something is not right.”Her stomach was in excruciating pain and her fingers and feet were blue. Her sister picked her up and they headed to the hospital.“The last thing I remember they called my OB and would be doing exploratory surgery,” Brandy says.She awoke a week and a half later on a ventilator. Those days she doesn’t remember were agony for her family members who were told if she made it the first 24 hours it would be a miracle. When Brandy awoke she was told things didn’t look good.“The nurse kept saying you are very sick. They said you’re very sick, the baby is fine,” Brandy says and smiles remembering how thrilled she was to hear her new son was still healthy.Brandy’s extremities were wrapped for the most part, but she could see a black shriveled finger extending from her hand.A strep infection led to Toxic Shock Syndrome during that week and a half leading to gangrene while Brandy’s organs began to shut down. To date, no one knows the hows or whys of Brandy contracting the infection.“They had to stop the infection from spreading,” she says. “Without amputation it could continue spreading.”Doctors asked her husband to sign the papers to remove Brandy’s fingers on her right hand, her entire left hand and both legs below the knee.“He thought I’d be mad he signed the papers,” Brandy says.Only later did her husband learn doctors had actually spoken to Brandy as well about the amputation. She calmly explains that she prayed about the amputations and a verse came to mind.“He will cut off anything that does not bear fruit,” Brandy says as though it’s a simple explanation. “There was no feeling or very very faint. We agreed to amputation.”There were moments after the amputation that Brandy had to ask why. Up to this point life had been good.

At the young age of 29 Brandy was married to her college sweetheart, had two children, a job she loved, a house and it seemed she had it all together. Brandy and Donnie met at Southern University in the psychology department and together were raising his son Deonte, 12, and their 6-year-old daughter Kara-Lynn.Donnie was a counselor for adolescent sex offenders. Brandy was a counselor at Stuller Place for victims of sexual abuse for several years and while pregnant moved to Hospice and counseled people with little time left to live and their families. It’s a career Brandy is passionate about and she knows prepared her for what she’s facing now.“I wanted to help people,” Brandy says. “I want them to be the best they can. No matter their situation it can be better. If you deserve more – you can have more.”Brandy’s first taste of success in helping people make those changes was her very first case and she still remembers it fondly. A 16-year-old girl who was a cutter.“Her father was the perpetrator. I didn’t know what to do with her. To help someone really make changes – how do you do that?”Brandy prayed for her, she discovered the girl was a great journalist, wrote poems. Brandy used her love of art and self-expression to help the girl flourish over time.“She no longer cuts and now she’s married, she had a baby,” Brandy says proudly.The girl and her mother gave Brandy a wind chime that reads, “Every day is a new beginning.” And it feels truer now more than ever.“No matter what you’ve faced, with each day is a new positive beginning,” Brandy says.

* * *

There’s no doubt Brandy’s youth and attitude are helping her recovery. Following the amputation Brandy decided prosthetics were the best option. She did not want to be in a wheelchair. But, it would take time for her to live with prosthetics.While Brandy waited for prosthetics she headed home for a month in a wheelchair. It was then that Brandy saw the kind of man she married. Donnie had to care for her every need. He bathed her, paid all the bills, made every decision for the household. Brushed Kara-Lynn’s hair.“I would just cry when he bathed me because I didn’t like my body or want him to have to do that,” she recalls.It was a feeling of helplessness that is hard to understand. And the dynamic between Brandy and Donnie began to mimic the relationships she had seen while working with Hospice where often spouses find themselves in a caregiver role.“He’s done so many things that any man would choose not to do if they had the choice,” Brandy says.“You say those vows – ‘for better or worse, in sickness and in health.’ But when it hits – it can be draining.”Brandy says she is mindful that what happened didn’t happen to her.“It happened to us,” she says firmly.After a month at home Brandy was ready to be fitted for her prosthetics and go to rehabilitation. She moved to Lafayette Physical Rehab full time for several months.Family stayed with her almost every night while she was there. But, for the first time her family felt comfortable leaving her alone at least part of the time. “Donnie wrote ‘Take care of my wife’ on the wipey board in my room,” Brandy remembers with a smile.By January 20 Brandy was back home with her new legs and prosthetic hand and a resolve to get back her life, hold her child, pick up a telephone and feed herself. Her goal was to walk by June.“I’ve exceeded that,” she says with a grin. “The doctors say how fast I’m healing and I’m going and it’s God – He knows I have things to do.”Brandy says she thanks God for all He has left her with – a healthy child despite the likelihood she had the infection during her pregnancy, her family and her right mind.“What happened happened and I can go on and do what I need to do,” she says. But, Brandy is only human. There are hard days. Days when the grief of her loss must show on her face. It is on these days Kara-Lynn sees the emotional struggle.“She says ‘You’re sad. It’s because you want your legs back?’” Tears fill Brandy’s eyes. “She is very resilient and helps a lot.”She longs for the times she could hop in the car with her kids and head to the park. But, Brandy is confident those days are not far away. She’s already come so far.The two partial fingers on her right hand are proving more useful than she could ever have imagined. After the amputation she wondered why the doctors would leave such a small portion of finger. After all, she couldn’t use them because she couldn’t move them. Thanks to her rehab, which she continues now and will for months, she has a tremendous amount of movement in them allowing her to pick up a phone, do the things that we all take for granted and most importantly to hold her son. She could barely put him down once she was able to hold him in her arms.“When you think your situation is bad – I look at others who have it worse. Some people go through this alone. They don’t have a spouse,” she says.And Brandy points heavenward for her greatest support.“My biggest thing is that I have God in my life. I would’ve lost my mind without that. I would’ve lost my mind. He’d send someone to help when I need it, to make me smile, to pray with me.”For Brandy, motivation is not an option; it’s a way of life. It’s a process to learn to trust her prosthetic legs and difficult still to do a lot of mundane things. Once she takes off the prosthetics to sleep she is virtually helpless again.“I have to get up and put on my legs just to go warm a bottle.”But, Brandy preservers. “If I start to lose hope it’ll be bad. I will not get back in that wheelchair.”Spend much time with Brandy and you see a lot of smiling and you see that light in her eyes. It doesn’t go unnoticed Brandy says. When hospital staff head into her room for the first time only having read her chart they’re often shocked to find smiling Brandy. “They read my chart and see that I’m so young and don’t know what to expect.”What they find is no anger or bitterness. But, a woman who feels blessed to wake each day with a family who is healthy and loves her and a perspective that’s rarely found in someone facing half her struggles.“As long as I can wake up to see this new day I think God’s mercies are new. It helps me be a better person. Helps me help the next person.”
* * *

Wow, what an inspiration!

Update...

Well, it's been almost a month since I wrote something, so I thought I would put out a quick update. I am back at work full-time now and it's going pretty well. My back pain has eased up tremendously, so it's not so painful being there. Unfortunately, the headaches have not gone away. I will be going to a headache specialist next month, just to make sure there is nothing else going on besides just the chemo still being in my system. My bloodwork is still in normal range on everything...yea! I am also doing good in school. This past week was my final week in a class and we had a research paper, power point presentation, research project, discussion, and the normal weekly stuff due. I hated it because everything that was due THIS WEEK, calculated up to 53% of my final grade, so it all came down to this week. I still don't have my grade in the class, so I'm still hoping to keep my 4.0 intact.

We are getting really busy with the Leukemia and Lymphoma society's Light the Night walk. This year's walk will be October 17th, and I can't wait. We are on the East TX committee this year and we have been having great meetings and have been getting things going. We have several events in the process, and I will let you know as they get set in stone. If you would like to join our team, please visit the Lymphoblaster home page and sign up. If you can't walk, please make a donation. This is going towards research to find a cure for blood cancer. Please help, every donation helps, and nobody should have to go through what I did. Let's find a cure!!! And, just to set your mind at ease, minimum 75% of every donation goes towards research unlike some other organizations that use about 75% and only 25% goes to research. To make a donation, go to the Lymphoblaster home page and then you can click on any team member's name (click here for my page) and make a donation through their page. If you want to just make a donation to the team, you can do that on the home page.

Now, for a prayer request, about 3 weeks ago, I received a call from Dr. Lee (my oncologist). It scared me, because when does the doctor call?!?! Well, she had a new patient that was just diagnosed with Lymphoma. I'm not quite sure on the type, I think it was Burkitt's Lymphoma. She is in stage 2a, so not as far advanced as I was, but she is going to have to go through the same chemo that I went to. She was scared and so Dr. Lee asked me to call and talk to her about it. We spoke for about an hour and a half that night. The following week, she was in the hospital receiving her first round. I went to visit her and was able to meet her and her husband. They are such great people and I'm glad that I know have a new friend. Please pray for her journey to be easier than mine and that God will heal her quickly. Her name is Julie and her husband is Rodney. I will try and keep you updated as time goes on. She should be going in for her second treatment in another week.

Update on Stuart- he has finished his last round and is home, hopefully for good. His counts are not coming up, so please pray they will go up and he will stay clear of infection. Please also pray for his strength and his wife Candace. He is such an inspiration- even to me!

Thank you for all your prayers and your continued support for me and my family! Y'all are the best!

With God, WE WILL BEAT THIS!!!

(for those still fighting)

Relay for Life

On May 1st, we were honored to be a part of the Lindale Relay for Life. It is sponsored by the American Cancer Society and helps raise money to find a cure for cancer. As you can probably guess, finding a cure for cancer is really important to us. The relay goes all night to show each stage of fighting through cancer. It is a really cool process, but I can't seem to locate the actual story, so as soon as I find it, I will post it for you. Here are some pics to show the great time we had fighting for others who are fighting, will fight, and have lost the fight. By the way, I did 4 miles, which is a lot for me!

All the survivors that participated

The survivors do the first lap of the night

Me- walking my survivor lap (I'm wearing the bandana for my team, not b/c I still don't have hair- I have crazy hair!)

We let balloons go when we started our lap

Our luminaries that we purchased to remember some of our friends that have gone through the fight, some that are fighting, and some that have lost the fight. If you can't read them, they are:

In memory of: Ethan Powell and Sully Farrar

In memory of: SuSu and Eve

In honor of: Claudia and Aunt Flora

In honor of: Stuart Smartt and PappaDuck

and the last one is in honor of me.

We love each one of you!

The fire department gave stretcher rides around the track for $2 for their on-site fundraiser. It was a big hit!! Natalie had a blast on her ride!

Natalie and Rob getting ready for the crazy hat lap

Our happy family!

Me and Rob


I gave up around 3 am and slept for a few hours...

while I was sleeping, the Relay went on....

Natalie doing the hula-hoop

We loved being a part of the relay and will be doing it again next year! This really just geared us up for the Light the Night walk coming up in October. We are hoping this year will be even better than last (and this year I won't be in the hospital)! We would love to have you join our team! http://pages.lightthenight.org/ntx/EastTX09/Lymphoblasters If you can't join in, please donate and help us find a cure for blood cancers. One day, people won't have to endure all the horrible toxins they have to fill our bodies with. Don't you want to say you were a part of that?!?! Our team's goal this year is $15,000, so please help!

On a health note: I had my monthly blood work last week and everything was in NORMAL range!!! WOOHOO!!! God is still hearing your prayers! Thank you so much!

With God, WE BEAT IT!!!

One Year Ago...

One year ago, I was diagnosed with T-ALL. Wow, what a ride! A part of me thinks, wow, I can't believe it's been a year, and part of me says, wow, it's only been a year? I went to the doctor a couple of weeks ago for my check-up and all of my blood work came back in normal range...YEAH!!! While I was there, I told my doctor that I was back in school, trying to get back to working full-time (I'm almost there...just 1 more hour a day), and trying to regain my strength and my "normal" life. She told me that she hadn't heard that chemo caused insanity! LOL!!! I'm beginning to think that myself. I am in my 7th week of my 8 week class and I am ready for it to be over to have a couple of weeks break before my next class starts. As of right now, I have a 4.0...(I'm only taking one class...haha!!). I just have to get through my final and I will be able to keep my A. I love my class, but it is a LOT of work!

Anyways, I know I haven't updated in a long time, but I've been really busy with all my insanity. Here's a run-down on what has been going on:

At the end of February, Rob and I took a trip to Vegas to celebrate me being done with chemo and in remission. It was so much fun! Walking the strip totally wore me out, but Rob was so great. He didn't complain when I needed to sit for awhile and he let me take a nap everyday! We ate at In and Out Burger- yum! We stayed at the Luxor hotel and were upgraded to one of the VIP suites...gold faucets, phone by the toilet suites...LOL. Our window looked straight at the Excalibur and was absolutely beautiful!

At the Steakhouse at the Venetian

Me and Green at the M&M's store

We ate lunch at Dick's last resort where the waiters are rude to you...it was hilarious!

We went to the Blue Man Group one night and then to Cirque du Soleil the next. The shows were incredible and Rob got to see his name in lights at the Blue Man Group!



On the Gondola ride at the Venetian

In March, we went to New Orleans with some friends of ours for a wedding. It was beautiful and so much fun!

Heather and Brandon saying their vows

Me & Rob at the reception

The Boys: Rob, Jimmy & David

The Girls: Me, Pam & Tracy

New Orleans Tradition- the umbrella dance

And, I also turned 30...ugh!!! We celebrated with a murder mystery dinner party- a Honky Tonk Homicide! Everyone had to dress up in character and we had such a blast!

I had everything decked out in Western stuff!

My Birthday Cake

Me and the Boys

The Girls

And last, but not least, I have to update you on my crazy hair! I still can't tell if it is going to be straight or curly, but it is a lot lighter than it was. It is at that strange stage of growing in all different directions and sticking straight up and out and anywhere but where I want it to go, so I just have to let it be. Don't hate me because I'm beautiful, my hair has a mind of it's own...LOL!!! This picture was from last weekend so it is the most recent one I have!

Well, that's about it for what I've been up to except work, school, cleaning and kids. Thank you for supporting and praying for my family for the past year. Everyone means so much to me!

Life without the Scarf

On April 17, 2008, my life changed drastically. I went from being a healthy happy 29 year old to a 29 year old with Stage 4 Lymphoma. When my "lymphoma life" started, it was very different. Over 9 months time, I spent more time in the hospital than I did at my own home. I took more medication in one day than I had probably the year before. From spending hours washing, drying and straightening my massive amounts of hair to lotioning my bald head. These things soon became not my "lymphoma life", but my life. My life was being in the hospital, taking medication, being weak, having my mom and mother-in-law cooking, cleaning and taking care of my children (which I appreciate so much!), and wearing a scarf when I went out in public. I never really cared that I was bald, but I could tell that other people were uncomfortable in public when I didn't have my scarf on. Well, my hair is now growing back and as of last week, I started going without a scarf. When I was first diagnosed, I knew my life was going to change drastically, but it never occurred to me that when I was done with treatment, it would change drastically again. Yesterday, in my process to clean (which I'm having to learn how to do again), I started putting all of my bandanas and scarves in a plastic box to put away. For those of you who saw me out know that I have a ton of bandanas. I have one in every color. They were my accessory. Anyway, it was very emotional. I realized that my life was changing...AGAIN. I was packing up that part of me. I don't miss being at the hospital...but I do miss my nurses. They became my friends. I saw them more than I saw my family and friends. I was forced into this life and then after 9 months, it was gone. As I thought about this concept, I thought back to when my nephew Walker was born. After sitting in the waiting room all day with my family and my sister-in-law's family, working on a crossword puzzle (it was a group effort), he was finally here. We were all very excited. He was precious and we were so glad that he had come to join our family and brighten our lives. When talking to Kay (my sister-in-law) after he was born, she told me that it was so weird because she couldn't feel him moving inside her anymore. Of course she didn't, he was there in my arms, not her belly anymore. But, for 9 months, he was growing inside of her. He moved, he kicked, and she felt it. Then he was born, and she no longer felt it. Her life was different. The same was for me. Please don't get me wrong, I'm not trying to compare child birth with cancer, but for 9 months, my life was one way, and then all of a sudden, it's different...I no longer felt it (in a manner of speaking). As I continued to pack away the scarves, and contemplate this revelation of life changes, I thanked God that He healed me and allowed me to have this change.

Here are a few pics of me with hair from last weekend's Mardi Gras parade in Shreveport...

Me & my friend Tracy. Yes, my hair is purplish-red. They spray painted it while waiting for the parade!

Me and Rob- he's wearing my silly hat so I could show off my hair!