The OTHER "R" Word

Well, this is the "R" word we hoped we would NEVER hear...relapse. As you know, I have had a sore throat for about a month, so my doctor sent me to have a PET scan to see if there was anything behind my tonsils that we should be concerned with. Well, as far as we can tell, the tonsils are not a big worry, but we did find a mass under my sternum bone. From what she says, this is a very common place for recurrence for lymphoma. Unfortunately, where it is, it can not be biopsied unless they split my sternum bone. The radiologist won't touch it because of the blood vessels surrounding it, the surgeon doesn't want to cut my chest wide open and split the bone, and the pulmonologist can not scope it due to its place. Therefore, we aren't 100% sure that it is lymphoma, but she's pretty sure just because it is common. Unfortunately, in Tyler, there isn't much they can do, so we will be going to the Baylor cancer institute in Dallas for more testing to see if they can figure out a way to biopsy it, if a biopsy is really even needed, idea for treatment (which she said would be more intensive than Hyper CVAD), and possibly a bone marrow transplant. If I do have to get a bone marrow transplant, I will have to be in isolation anywhere from 30-100 days. UGH!!! Please pray that they can find a way to biopsy the mass without cutting through the bone, and that it is NOT cancer. We are still very much in shock. This was not a day we really and truly thought would come. God healed me once, He can do it again! I am not giving up this fight and I have God and my prayer warriors by my side. I'll keep y'all updated!

Remember...

With God, WE WILL BEAT THIS!!!

SERIOUSLY!?!?!?!?

So, the past few days have been a little stressful. On Thursday, I went to the doctor for my monthly blood work. Everything came back in normal range. Great! Well, I've had a sore throat on top of the migraines and insomnia, so I tell the doctor and she goes to check it out. When she looks in my throat, she tells me that my tonsils are "impressive." I ask her if impressive=big? She says yes and tries to look deeper by using a tongue depressor. Well, she decided she was going to schedule a PET scan for me on Monday to see if there is anything behind my tonsils causing the inflammation or if it is strictly tonsillitis. Well, I know I am in full remission, and I know that God has healed me, but I am human and cancer does relapse, so I'm scared. Who wouldn't be?? So, I have my PET scan on Monday at 8:30am, and an appointment with the ENT on Thursday. Please pray it is only tonsillitis. So, that was Thursday.

On Friday, I get up and go to work like a normal day. The migraine starts to kick in (like a normal day), so I decide to try one of the new medications my neurologist gave me. I take it and within about 15-20 minutes, I get very hot and every muscle starts to ache. After a few minutes of this, I get online to find out if these are normal side effects and what else I can expect. Well, when I go online, I realize that this certain medication includes Naproxen which is the pain reliever found in Advil, Motrin, etc., which is also a medication that I am ALLERGIC to. I could feel my lips and fingers starting to tingle. I knew it was only a matter of time before the swelling would begin. I run in and tell my boss that I need to go get a shot or something because I was about to turn into a balloon. He says fine and I head out. Well, did you know you can't get anything done in the medical world on a Friday? Apparently, no doctor works on Friday's. So I get a hold of the nurse at the neurologists office, and she tells me to go home and take Benedryl. If it gets worse, then go to the ER. So, I go to Walgreens and get Benedryl. By the time I leave Walgreens, my eyes are starting to swell, so I have to get home quick while I can still see. My lips are large by this point. I get home, take the Benedryl, and realize that I had a missed call from my oncologists office. I call them back and my B-12 level is low. So, that means, I now get to go to their office every week for the next 2 months and get B-12 shots. Really? I can't take much more. The Benedryl knocked me out for the entire day and night. At least I got some sleep :-).

Well, on top of all this, it is the final week in my Psychology class, I'm so confused with everything and I'm behind because of everything going on health wise. I'm still not sleeping very well, even with the sleeping pills. I am still having migraines and can't take the meds to get rid of them because I am allergic. And, I am working on a huge project at work with the deadline steadily approaching. Life goes on, and I'm so glad that I'm living, but I just need a better week. We have our family vacation planned and will be going on that soon. We are going to Disney World- the trip we were supposed to take last year. I can't wait! It will be the vacation that I need from everything else right now.

Please pray for me in every way possible. I need your prayers physically, mentally, and emotionally. Please pray for my family as they get to live with me and my craziness right now. Thank you for everything and I'll keep you updated on my tests!

With God, WE WILL BEAT THIS!!!

Crop out Cancer Scrapbook Retreat

The Lymphoblasters (our team) and another team here in Tyler are hosting a scrapbook retreat August 28-30 to raise money for the Leukemia and Lymphoma Society's Light the Night walk. It is going to be a great weekend full of fun and scrapbooking! If you are an avid scrapbooker, or even a beginner, this retreat will be a great time to come and meet new people, learn new techniques, and have a weekend doing something you love! All meals and accommodations are included in your TAX DEDUCTIBLE donation of $150. Everyone that comes will get a goodie bag and t-shirt and will be entered in the drawing for 15 door prizes. We will also be having a silent auction so don't forget your checkbook! If you want more information, let me know and I will get a registration pack to you right away!

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)