The Traveling "Lymphoma" Toes

Hey everyone! Well, those of you who have been following the blog since the beginning, know about my lymphoma toes. For those of you who haven't, here's a quick rundown. The week I was diagnosed, I got a pedicure and had my toenails painted lime green- lymphoma awareness color. Well, I kept my toes lime green until I was declared in full remission. They may have changed in shades or sometimes they had nail tattoos on them, like daisies or hearts, but they were always lime green. It was just a thing that helped me through the day. Every time a nurse or doctor checked my feet for swelling, they would see them, and usually comment. It was fun. Well, I painted them lime green again when I went in for my PET scan. Well, I got this idea when watching the cell phone commercial with the traveling stuffed monkey. It's a little silly, but I feel that it shows that even though we've had a setback, I'm still LIVING!!! We went on our family vacation this past week to Disney World. We were supposed to go last year, but had to postpone the trip due to my chemo treatments. Well, here's our trip through my toes...

Driving to DFW so we can head to Florida. Not sure why my toes look all wrinkly, but they are on their way to DISNEY!!!



Flying high in the sky! I'm sure all the people around us were thinking I was a little crazy for taking pictures of my feet, but I had fun doing it!


In the pool. It was so nice to just relax in the swimming pool and forget about everything going on. It was a wonderful time as a family!

DISNEY WORLD!!! I know you can't really see it, but the gate to Disney World is between my feet. This was my only chance to take a picture of them at the actual parks because we were constantly going and walking. I wore tennis shoes the whole time, and I wasn't about to take off my socks and take a picture!

Our last day there, we went to the beach. The nail polish is all chipping off...a sign of a good time! The waves were so much fun because of the approaching hurricane. We had fun body surfing and just relaxing on the beach. Unfortunately, this was the last picture my camera took. It stopped working right after this. We still haven't figured out what happened other than the fact that I wore it out. I took over 600 pictures on our vacation!

Well, we had a blast, and today, it was back to reality. I went to the doctor this morning and all my bloodwork is still in normal range. This is a good thing! Also, I have an appointment on Wednesday back at Baylor for a bone marrow aspiration....so excited about that one! I guess it means things are rolling. Other than that, I don't have any other updates. Hope you enjoyed joining us on our vacation through the "eyes" of my toes. I'll share more pics later...

With God, WE WILL BEAT THIS!!!

Bone Marrow Transplant

So, I finally had my appointment in Dallas at the Baylor Cancer Institute. On the plus side, I LOVED everyone there! We had such a bad experience at MD Anderson, that I was expecting something similar. I am so glad that it was different and I am not just a number at Baylor.

Rob had to work due to the fact that we are going on vacation this week, so my sweet friend Tracy went with me. Tracy is my very organized (retired military), straight forward, let's get some answers friend. It was great having her there. I was free to talk and ask questions and not have to worry about remembering everything. She just sat back and took notes for me. It was great. Not to mention, it was fun having a "girls" day.

Well, I went straight to the transplant department, which confused me a bit since there hasn't been a biopsy performed yet, but my doctor would also be the one to do the biopsy. Well, it seems that this doctor feels I should have had a bone marrow transplant when I finished treatment and was in full remission. T-ALL is a very aggressive lymphoma and while I am/was in full remission, I had a very high chance of relapse. He said the transplant would decrease that chance drastically. So, I will be having a transplant in the near future. The first step will be to biopsy the mass under my sternum. He said it was a very easy biopsy, not the major procedure we were first informed of. He will be doing a CT guided needle biopsy. He will also biopsy the growth on my voice box at the same time. Once we have figured out what these masses are, then treatment will be discussed. If the mass under my sternum is lymphoma, we will have to do treatment to get me back into remission. He said it could be chemo, a different type, or even localized radiation to melt it away. Once I am in remission, we will then begin the transplant portion. They have sent my brother his kit to be tested for marrow matching. A sibling is the best possible match usually, so they start there. Even though he is the best possibility, there is only a 25% chance that he will match me. If he isn't a match, they will go into the national registry.

We are encouraging all of our friends that are able to get put on the national registry. If you aren't a match for me, you might match someone. This could save someones life. It is very simple. Go to your local blood center and tell them you want to be put on the national bone marrow registry. They will have you fill out paperwork and then it is just a cheek-swab test. You send it off to the registry and you will be put in. I spoke to our blood center here in Tyler and they told me that they currently have funding available, but they request you pay the $52 that it costs for the test to be run on your saliva. If you can't pay the full amount, pay what you can. If you can pay more, then please do so, so that others can be tested. You will stay on the registry until you turn 61 or your health prevents you from giving.

The donation process is actually quite simple once they have found a match. Once a match is found, they will contact them to see if they are willing to donate. Then some blood tests will be run just to guarantee the match. The donor will go in on the day of the procedure, they will go under general anesthesia and will be able to go home that day. They extract the bone marrow through needle aspirations. I have had 5 of these done while fully awake, just on "happy juice" as they call it. Your hip is sore for a day or two and that is it. The marrow is then tested, treated, and I will receive it through an IV just like a blood transfusion. I will have to stay in isolation for around 100 days. The first 3 weeks of this will be inpatient just for infection purposes, then I will be able to go home, I just can't go anywhere. Can we say...BORING??? I'm going to go CRAZY!!!

But, my doctor feels this is the best way to get me CURED! So, we are moving forward.

One thing that is very cool is that my blood will completely take the DNA of my donor. He said if I were to commit a crime and leave a blood trail, and then they tested my DNA by a skin sample or hair sample, they wouldn't match. HAHAHA! We thought this was hilarious! He told us that he said that to another patient one time who was a federal agent and his brother who was in law enforcement. He said they just sat there straight faced and didn't find it funny at all. I thought it was cool and would make me a little more unique.

Well, this led me to ask the question, "who's DNA would my baby get- mine or my donor's when we had a baby?" Those close to us know that Rob and I have wanted to have a baby for quite a while now. Rob is really wanting another boy in the house (even all our animals are female). The chemo pushed all of that and now it has been pushed further. The doctor told me that it would pretty much be impossible for me to conceive. This was not what I wanted to hear. That was probably the lowest I've been even since the first day I was told I had cancer. I started crying immediately. We went through several options of freezing embryos and back on the lupron shot, but the doctor said that the freezing of the embryos would really delay things, and I am not real big on that idea anyways. If we don't use all the embryos, they destroy them, and well, I believe life begins at conception, so I just can't do it. He doesn't want to do the lupron shot because he needs to attack the ovary tissue too in case it contains cancerous cells. After calming down, I remembered that we serve an awesome God. And, I know that through Him, NOTHING is impossible.

We are trusting that God will give us the babies we are wanting, one way or another. I know several people who have been told they would never have children, and they now have 2 or 3. We have given this to Him and I know He will work it out. From day one that Rob and I knew each other, we both said we had a desire to adopt. Even if God chooses to give us more children through adoption, we will be truly blessed. Of course, as a woman, I want the pregnancy, but I want the child more. My mom told me the other day that God knows when our baby will be born and in whose belly he will grow. I know this is true and we are trusting Him to bring us our baby when it is His will. Of course, our girls are pushing for it now. They want a baby brother so bad. If God has chosen that we are to only have our two beautiful daughters, we are already truly blessed! Children are miracles and blessings from above!

Thanks for keeping us in your prayers! We will keep you posted as we find out more!

With God, WE WILL BEAT THIS!!!

Meet the Family

In writing my last post, I realized that there are many of you who don't know someone in my family, or even me. I'm so glad many of you have come to know us through friends of friends of friends or just by coming across my blog. I'm so glad to count many of you as prayer warriors and as brothers and sisters in Christ. We are, after all, one big family. Well, here's my family...

Me and Rob swimming with the dolphins in Nassau, Bahamas. We love to travel and spend a lot of our time planning where we will go next. This is something we hope to pass on to our kids.

Us out to eat for my 29th birthday with friends. We love our friends and love spending time with them! I'm so glad that through this experience, I have new friends that I will cherish forever.

At a football game at our local high school. We love football, Nascar, LSU, and just having fun. Our youngest, Natalie, was a guest cheerleader at this game, so we had so much fun watching her cheer!

Our oldest, Emilee, when she got her braces. She is our "quiet" child, if there is such a thing. She is pre-teen and likes to spend her time with her friends and messing with her sister. She has a crazy love for animals, just like me. She is so smart and we are so proud of her. She is in the band at school and is very involved in the youth group at church.

Emilee- more of our "skater-punk" style child. She loves her skinny jeans and converse shoes. We definitely have a different taste in clothes, but that is who she is and we love her so much! She was so much of a tomboy growing up, but she has blossomed so much in the past couple of years. She still loves to spend time outside fishing and playing with her cousins finding bugs and stuff though.

Natalie, sitting in our friends' smart car. She is our "prissy" child. She told me last night that if she could have anything, she would have every shoe in the world- total girl right?!?! Natalie is for sure our loud child. She likes to be seen and heard. She is also our cuddler. She always wants to be with us even if it is just going grocery shopping.

Natalie wants to do everything. She wants to be a cheerleader, softball player, dancer, gymnast, swimmer, etc... the list goes on and on. She also thought I was the coolest mom ever when I was bald. She took care of me when I was sick. And, as of right now, she wants to be a Hematology Oncologist when she grows up so she can help others fight blood cancers. I am so proud of her!

We love both of our girls so much! They are both "A" students and are so sweet. We could not be prouder! We were definitely blessed by God with these two!

Princess- our daschund-healer mix. Princess was rescued from the Animal Rescue Fund and became part of the family immediately. She is the most lovable dog in the world. When we first got her, she was only 6 weeks old, so when she started growing, she just kept getting longer and longer. She never really got much taller. She is one of a kind for sure, but she is a huge part of our family. She is our "watch dog" because she has a big bark, but when you walk in, she will just roll over so you can rub her belly.

Daisy May- Daisy was my engagement present from Rob. We just went riding around and ended up at the Humane Society. Rob should know better than to take me there. If I could, I would adopt every animal out there. Well, I had been wanting a chihuahua for so long, and all the chihuahua's were grown and were kind of aggressive, so we asked if they had anything else. They had Daisy in the back. She had just been surrendered that morning. It was love at first sight. She was so cute and small! She is a chihuahua-schnauzer mix. She has this crazy hair that sticks up everywhere, so in the summer, we have to get her hair cut. We named her Daisy May because we got married in May and we used Gerber daisies in the wedding.

Cricket- an unplanned addition to our family. We went to Lowe's one day after church, which happens to be next to PetSmart. Well, it was adoption day, and there she sat. Rob saw her first and we went round and round about getting her. Of course, I was all for it, but I left the decision up to Rob. Well, as you can tell, he gave in and we came home with her. She is supposedly a full-blood chihuahua, but her ears don't stand up. She is definitely a "momma's girl." She never left my side when I was sick last year except she had to go outside or eat. She is always sitting next to me or in my lap.

And the newest unplanned addition- Cleopatra (Cleo)- Rob found her at a gas station one day while he was working. Of course, I would have cried all day thinking she would have been run over, so he brought her home so we could find a new home for her. Well, nobody wanted her and the girls fell in love with her. She is so little, but she accepted her new puppy sisters immediately. Princess chases her around the house, and then Cleo will get on top of the couch and jump on top of Princess. Cricket is scared of her, which cracks us up because Cricket is twice the size of her. Daisy could really care less about her.

Snuggles- Snuggles is a hamster. Summer 2007, my friend's son had a hamster who had babies, so we let the girls get a hamster each. We got two boy hamsters, Snuggles and Cruiser. Well, the day that Snuggles had babies, we realized that we didn't have two boy hamsters! So, we separated them and FINALLY got rid of all six babies. Cruiser just recently went on to "hamster heaven", so we only have Snuggles left.

My Sore Throat

So this whole sha-bang started with my sore throat. On Thursday, I went to the ENT. I described to him where my throat hurt and how it felt. He told me he had talked to my oncologist and had seen my PET scan. Great! So, he says we are going to scope my throat. Ok, do what you've got to do... So, they put the numbing stuff in my nose to swallow to the back of my throat, then after a few minutes, they stick the loooooong camera thing in my nose and down my throat. Well, that was a new experience! I'm checking off new experiences left and right! Anyways, they found a small growth on the right side of my voice box. He said normally, he wouldn't be too concerned because it is so small, but considering my history, he wanted to biopsy it. This would mean being knocked out for a surgery. So, he stepped out to call Dr. Lee so they could discuss what they wanted to do. I called Rob at this point just to let him know what was going on. His response was... "so, you probably won't be able to talk for a few days? Finally, some peace and quiet around the house." HAHAHA! For those of you who don't know Rob, I wouldn't have expected any other response!

So the ENT comes back in and says that since there is already a possibility of surgery when I go to Dallas, they are going to wait and let them do the biopsy so I will only have to undergo anesthesia once instead of twice. If Dallas chooses to not do surgery, then he will do the biopsy when I get back. In the meantime, I am to pay attention to the soreness and if it gets any worse and it gets harder to breathe, then I will call him. So, that's it in a nutshell. We are keeping our attitudes positive, our hopes high, and our hearts lifted to Heaven.

Our specific prayer right now- that they will do the tests, there will be nothing there, the doctor's will be confused, and I can tell them how we serve a healing God and I have no confusion as to what happened! Please pray this with us, and remember...

With God, WE WILL BEAT THIS!!!

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!