Tuesday, May 31, 2011

CSCRB- To Better Explain Triple Negative Breast Cancer

I wanted to share something with everyone that was brought to my attention this past weekend by a new friend.

A friend of a friend who is a Photographer based out of Gainesville gifted our family with an amazing Photo shoot yesterday! She heard about my situation and offered her time and services to us. I gladly obliged and we were so blessed by her!

Her name is Elise Kersey and if you ever need any Pictures done, she is the best! During one of our phone calls prior to the shoot, she informed me of a fantastic group of women that she knows. They are a group of research scientists all UF Gator Alumni! They were not satisfied with the current research and treatment options available for women struck by Triple Negative Breast Cancer. So they formed a grass roots movement. And today, the organization works as a non-profit to support pioneering research initiatives that will create better treatment options for patients like me!

Its really astonishing how all of this came about! Gods hand and his fingerprints are everywhere! I urge you all to check this site out. There is a ton of info about TNBC. I get asked quite a bit what makes this type of scarcely unknown Cancer different from other Breast Cancer. Until I was diagnosed, I didn't know the difference either. I hope this helps everyone to better understand my situation!
Learn More About TNBC Here

Thank you all for your interest!

Monday, May 30, 2011

Home At Last

I never knew the true meaning of the phrase "Home Sweet Home" until recently.

Last Wednesday morning Brian and I walked into the Clinic for my appointment to receive my last infusion before returning home. During the pre visit with my Dr. I told her about a new symptom I was having, a painful sore in my mouth. After examining me, she was very concerned about going ahead with the infusion. She wanted me to see my Dentist and make sure that it wasn't my wisdom teeth coming in. Neither of us felt that was the true issue, but with the drug I would be receiving, any healing after surgery would be significantly slowed. So she suggested that I get cleared before continuing. By this time I was in tears, not to keen on the fact that things weren't going the way I had planned. She reassured me that everything would work out just fine and she was just looking out for me. She left and returned a few minutes later and informed us that she would prepare my discharge papers while we took care of last minute details. I was so surprised that I was being discharged that it overwhelmed me. I had planned on going back to the hotel that night and writing out all my questions I needed answered before heading home. Now I was at a complete loss as to what those questions were.

While the papers were being taking care of, Brian and I headed to my favorite (keep me sane) person Shirley to tie up loose ends as far as finances go. She has been the biggest blessing to us through this entire experience. When we went to settle things, we handed her the cash we had from donations and cleared out my bank account. She hesitated at first, when she saw the large stack of cash. After wiping out my account and all our cash we still owed over $2,000. She told us not to worry about it at this point. Such a huge relief! As of now I will be responsible for $4,500.00 a month for my Antineoplastons and other medications. The account is empty as of now and my parents have taken on a large amount as well. But we were able raise over $14,000 in the short month before heading out to the Clinic! God is providing and I believe that He will continue to do so. I just cannot express my appreciation enough to everyone who has helped out! We have some fundraisers in the works and will post them as they come up!

Thursday morning Brian and I checked out of the Hotel and headed back to the Clinic to hand out Thank You cards and say our goodbyes. It was very bittersweet! I was so happy to be going home to my baby, yet saddened by the fact that I was leaving these people who had made me feel so welcome and hopeful. Everyone was so wonderful to us! I became so spoiled by the one on one attention I received while there!

The drive home started out wonderful (insert sarcasm). Not even an hour into the drive we got pulled over! Not realizing that Brian had put my window down, and expecting the officer to walk up to the drivers side, I almost jumped out of my seat when he appeared out of nowhere at my window:) He was so polite and kind and only gave us a warning for following too closely. After that it was smooth sailing until Baton Rouge, which is always a madhouse! Then I had the bright idea to go home through New Orleans just to say we drove through. Well bad idea! Traffic Jam! After countless stops and traffic jams we FINALLY rolled into Duette at 2:30 AM Friday morning! Yes I said Duette. I forgot to mention half way through the trip, mom calls from our house and informs us that our AC is BROKE! SO Brian calls Air Rescue and they want $500 to fix it, after finding out what was wrong with it, he decided he could fix it himself. We spent the night at mom and dads and were there in the morning when Sam woke up! Best day ever! She was so excited to see us! She talked for 20 minutes straight! That afternoon Brian went and picked up the parts for the AC and fixed it. Yes my hubby is amazing! He can fix just about anything! That night my family had a "Welcome Home Princess Party" for mommy, as suggested by Samantha! Complete with princess cupcakes!

SO we are home and happy and have had a few days to spend with our baby girl! I have never missed someone so much in my entire life! I pray that I never have to leave her like that again! I head to the Dentist tomorrow to make sure that I'm clear as far as wisdom teeth go. If I get the all clear, then its to my Dr. here Wed and we start back on the treatment schedule!

I have attached some pictures of the wonderful people who helped to make my stay in Houston bearable! And from my Princess Party as well!

Shirley and I

All the wonderful ladies that greeted us each morning

The truly awesome Treatment Room Nurses. Janna is on my right and Laura is on my left! Those of you who know me, will get the significance!

My sweet nurse Anna on the left, and my Amazing Dr, Dr. Larisa on the right.

Welcome Home!

Mommy and the most precious girl in the world!

Monday, May 23, 2011

Back From My Hiatus

In the last several days I have experienced highs and lows that you would not believe. Since my last post on Wed I have seen some rough moments.

Thursday morning I went in to receive my first Chemo Infusion. The most dreaded of all my treatments! I had a calm feeling and everything seemed to be going OK. My Dr. even suggested a Cold Cap to me. I had never heard of this prior. It basically works to constrict the blood vessels in the scalp to detour the chemo from destroying the hair follicle. They have had quite a bit of success with it. My infusion only lasts for 30 min (thank goodness) so I thought, what could it possibly hurt? If I lose my hair, I lose it. But it wont be for lack of trying! Positive thinking! So we placed this 22 degree (helmet) on my head and began the infusion. The nurses in the treatment room are some of the most kind and compassionate women I have ever met! They assured me that I would do just fine. Once my nurse got me all hooked up, she turns to me and says OK your going. I had a brief moment of panic! I'm sure Brian thought oh my here we go lol! My head immediately went into my hands and I could feel myself losing it. But just as quickly as it came, it was gone. Just an unbelievable peace came over me. 3o minutes was up before I knew it and I was free to go!

I felt great that night and all day Friday. Sat, however was a very tough day for me. I had read that the side effects sometimes don't creep in until day 2 or 3. Well it was day 2 and I was feeling as though I had been run over in the middle of the night! My back, hips and legs felt like I was carrying 5 ton bricks on each leg. SO painful and hard to get moving. I suddenly felt like a 90 yr old women. Had quite a bit of tummy pain. But I never did suffer any nausea! Which was honestly my biggest fear. THANK goodness for that! Saturday Brian had planned to take me to the beach. Every hour he would ask, Babe do you feel like going? We never made it. I did good to get out of bed and to the couch all day. Sunday brought a better day. Still stiff and in severe pain, I was able to walk downstairs and eat breakfast. We watched Church online and afterwards, we decided to head to the beach! It was worth it! While Galveston pales in comparison to our pristine Fl beaches, it was still the ocean, and I was sooo happy to be there! Right after we arrived, I got to witness a beautiful thing, the most precious boy with special needs about 14 arrived with his dad. He was so overwhelmed by the pure joy of the ocean! He didn't stop screaming for joy or running from the moment he arrived until they left! So amazing to see! It made my heart smile!

Today brought a whole new day as well. My tummy is feeling much better and my back and leg pain seem to be slowly subsiding. I haven't been able to walk without a limp since Sat. But I feel that by the end of the week, I should be back to myself. All in all if a couple of bad days are all I have to endure the next couple of months each treatment, I think I can handle this. I was so afraid that I would be completely useless and need someone to help me take care of Sam. I may need help for a couple of days, but for the most part, I should have no problem being her mommy and fulling my mommy duties!

I met with my Dr. today who once again shared the good news that she had spoken with my Dr. back home. She was very pleasantly surprised by her conversation with him and so happy to tell us that he would be more than happy to do whatever I needed! So I no longer have to worry about finding a Dr at home to continue my treatment. I felt all along that he would be accommodating! Such a HUGE blessing! I had some blood work done today and I am good to go for my last infusion here on Wed morning. This will just be the gene targeted therapy, not chemo. I will return Thursday morning, and if no problems, I am free to go!!!!!!!! So we are planning on driving home Thursday or Friday! I cant wait to wrap my arms around the most beautiful and precious girl in the world! I have missed her more than I ever thought possible! Sykpe has been such a blessing! But just not the same as a hug!

I hope this brings everyone up to date. I have attached some photos of the clinic and my days to give everyone a little insight to my time here in Houston!

This is as I was receiving my first infusion last Wed.

My Chemo Infusion, with my lovely helmet!

The Clinic

The beautiful garden area downstairs. Very relaxing!

The Beach at Galveston

I found my HAPPY place!

Wednesday, May 18, 2011

One Day At A Time

Hi everyone it's 11:17 here in Houston. I should be sleeping, but I'll get there! Yesterday I returned to the Clinic. Everyone was pleasantly surprised to see me! Things went smoothly. I received my first injection for the bones mets. No complications what so ever. Made a trip to good ole Walmart last night to stock the kitchen. Then headed out to a spot we found last time we were here. It's called City Centre. Right down the road from the clinic. Its the most perfect little courtyard square surrounded by shops, restaurants and such. It's my place while I am here:) I think its essential to my sanity to have found something here I enjoy. They have a beautiful fountain and 3 fire pits in the turf covered courtyard. Its so fun to watch kids play and have a great time! I know my Sam would just love it! We found the best smoothie shop. Red Mango. So yummy and so good for us!

Today we had a great breakfast here at the Hotel before heading to the clinic. Arrived at the clinic at 9. Had some delays, but finally got my infusion going around 12:30. Aside from some grogginess due to the benedryl, I have had no side effects whatsoever! Brian made us some yummy Scetti tonight as Sam calls it:)

Tomorrow has the potential to be a rough one. But I am trusting that given the smoothness of all the other events thus far during our stay, that tomorrow will be no different. I am human however, and struggling and wrestling a bit tonight with my infusion tomorrow....so many things can happen. Could have no side effects, or could have tons. I am just so uneasy right now. I have done really well thus far, and plan on continuing, but the fear of the unknown is getting to me. Please continue to pray for peace for me. I pray that God will continue to place a hedge of protection around me! I am really learning to take it one day at a time! He has new mercies for me with each morning that dawns! As a good friend said to me tonight, I have the greatest healer & miracle maker on my side....stay strong & watch God work ;) That is just what I plan on doing! I plan on taking some pics of the clinic and our favorite spot this weekend so everyone can get a glimpse of my experience! Love you all and am so grateful to have such amazing support!!! Good night friends~!

Monday, May 16, 2011

We Have Arrived

We arrived at our Hotel about an hour ago! We made really great time. Our room is absolutely FANTASTIC and has been completely taken care of for our stay!!!! We have been so blessed! A big heartfelt Thank You! It feels like home and I will be so comfortable here for the next two weeks! Please pray that our Appt. goes smoothly tomorrow. Pray that I will continue to experience the peace that I feel now. Thank you for all the prayers sent our way today! The drive was not nearly as long as I was expecting. Got to see some new parts of the country:) I will update everyone tomorrow with any new info we get! Thanks again and goodnight to all!


Sunday, May 15, 2011

Let The Healing Begin

As is obvious, I have been MIA for a few days. My mind has been overwhelmed and inundated with thoughts, fears, and what ifs, as the day we head back to TX approaches. Not to mention the ever growing list of things to get done. It took me to the later part of the week to gather myself together and focus on what lies ahead. Through much prayer and support, I am now focused and ready to get this show on the road. While still apprehensive about drug side affects and the fear of the unknown, I realize its time for healing to begin so I can get home and be the mommy my little girl deserves for yrs to come! This is only temporary. I believe God has set my foot on this path and will not lead me astray.

After spending as much time with my baby girl as possible, and fighting back the tears, I dropped her off at my parents tonight. She is aware that Mommy and Daddy will be gone to a place called TX for a while. And she will get to take lots of naps at Noni and Papas! All she asked was that we bring her back a surprise:) I couldn't get enough hugs and kisses tonight! I already miss her something fierce!

God has been providing in a HUGE way! We have been able to raise a large amount of funds through donations and a fundraiser! I cant thank everyone who has donated there time and gifts enough! Your generosity astounds me! Before we leave to return home in the next 2 weeks, we will responsible for a very large sum of money. There are fundraiser in the works. If anyone has any ideas as far as fundraisers go, I am open to suggestions! We are still waiting on the results of one test. It should be back tomorrow. Brian and I are driving all day tomorrow. It will take about 16 hrs. We should arrive in TX around midnight. My apt. is Tues morning at 10:30. As soon as we learn more details, I will update.

Saturday, May 7, 2011

Don't Waste Your Cancer (John Piper)

I am so astonished looking back on the timeline of my life, and realizing just how awesome our God truly is! He knows the events of our life and when they will happen before we ever see them coming. The things that we count as "happenstance" are never the case. He plants people and circumstances in our paths for a very specific reason. He prepares us.

Nearly 5 years ago Brian and I were sitting in a small Bible Study group in Ga. at the Church that we had grown to love. Our group leaders David and Brenda Martin, whom we adore, had brought in an article by John Piper for the group to read over and discuss. We had done previous studies of his. I remember thinking, how will this ever apply to me? It was called, get ready for this "Don't Waste Your Cancer" by John Piper! As it turned out, it was a very compelling story of this mans journey with Cancer, and how he chose to thank God for his Cancer and use it to glorify him.

I am so grateful that God saw fit that we enter the doors of that amazing Church and join the class that these two wonderful people were leading!I know without a doubt looking back, that I was meant to hear this mans extraordinary story. Because it in turn would change the way I look at my own Cancer. I do not look at this Cancer as a curse. Rather I see it as an opportunity to reach out to God, seek after Him like never before, and glorify Him in every part of my life! I am by no means perfect, and struggle daily to be the person that He desires of me. But I am seeking Him desperately and want nothing more than for Him to reveal Himself to me and others through this trial.

Please check out the article from John Piper below.


Tuesday, May 3, 2011

Child Like Faith

How many times have we all desired to have faith like a child?

I can remember being a child and believing anything and everything anyone told me. Never questioning, just believing it for the truth. This takes me back to a time when my sister and I were visiting our close childhood friends, two brothers our age. Our moms were the best of friends. Everyone was outside enjoying the afternoon, when us kids must have been grating on their nerves, because they informed us that if we dug deep enough we could dig to China:) So we began digging! Another time the boys dad, who was like our Uncle, threw a ton of pennies in the yard and told us that the yard was a gold mine. He said if we found all of them, we would be rich! Well you know what we spent hours doing! A few years later it finally clicked that they were obviously just trying to keep us kids busy, but how funny is that? That we would just automatically take it for the truth?

This brings me to my point. I know we all remember being that naive child falling for anything. Just believing and never questioning. So many times in my journey I have had to just allow myself to be that child again. Not questioning God, just trusting in him. That is ultilmately what he desires of us. I have come to a very real conclusion. We spend too much time trying to impress God. Trying to say the right thing, pray the right way, act the right way. Now of course God deserves the utmost praise, glory and honor. But His desire for us is to just trust Him. Let Him lead, guide and direct us. When we follow Him all the other things fall into place. Nothing pleases Him more than for us to just give into Him and believe Him for what He says He will do.

I recently finished one of the most amazing books! "Heavan Is For Real". A truly inspiring and convincing book written about a little boys journey to Heaven. A true testament to what it means to have the faith of a child. I encourage everyone to read this little boys account of what he witnessed in Heaven!


Heaven Is for Real by Todd Burpo with Lynn Vincent