Confessions of a Mommy Battling Melanoma

Energy!

2012-02-28T21:44:00.000-06:00

Something I have always struggled with is my energy. I just dont have nearly enough! And I hate it. Usually by 1pm I am exhausted. Of course napping isnt usually an option. And honestly even if it was, I wouldnt be able to sleep. I still suffer from lots of leg pain. Pain meds work well, however, I wont take them during the day because I have kids to take care and places to drive. It just isnt an option. So, I started looking at other alternatives. Honestly, things like Energy drinks were out of the question for me. For one, they are expensive. For another, I drink 2 Diet Pepsis a day, I didnt really want to add to my caffeine intake. I just simply wanted more energy!

One of my friends suggested checking out the different Nutritional shakes out there. After some research, I made my choice! Body By Vi was the one for me! Body by Vi is primarily used for Weight Loss, however, I am using it as more of a balanced nutrional shake. It is packed full of vitamins and it seriously tastes delicious! There are so many recipes out there that I was a little overwhelmed to be quite honest with you! My favorite is called the "Butterfinger Shake" I love Butterfingers and this shake seriously tastes like a Butterfinger!

The best part is that it has really helped with my energy level. I just have a shake for breakfast, then I eat my normal lunch around 1230. I love that I typically have enough energy to last me until the evening! That, my friends, has been a welcome change!

Body By Vi has kits to fit every budget. I am on the least expensive kit because I am only doing one shake a day. However, my husband would like to start the shakes soon so I will probably have to go to the $99 kit soon. Oh the things I do for my husband! LOL!

And no, I am not a distributor or a saleswoman or whatever for the product. I am really just a customer who is really thrilled with the results!

If you ARE looking for a great product for weight loss, I have several friends who are using this product for weight loss. One friend has gone down 2 pants sizes in 2.5 weeks, another has lost 5 lbs in a week! This product works people! And it tastes delicious to boot!

I would love for u all to gain some energy and transform your life with Body By Vi! If you would like more info let me know! If you would like to begin your transformation, just go to my website, heathersnyder.bodybyvi.com and click "Join the Challenge"! I cant wait to hear how this product changes your life!

Transferring My Care...

2012-02-17T21:04:00.000-06:00

So the last month or wo I have been debating transferring my care a little closer to home. Quite honestly, the reason is money. It is expensive to travel to Nashville. I do not feel comfortable having my care only in Wichita. There are multiple reasons, but first and foremost is that my onocologist here does NOT specialize in Melanoma. He is forced to handle all different types of cancers. I dont want that. I want someone that knows MY type of cancer. I do NOT want to know more than my Dr. And I feel like that is how it is here in Wichita. No offense to my Dr, thats just how it is.

So after doing some research I decided to KU Cancer Center. When I first called to make my appt I was very clear about which Dr I wanted to see. Unfortunately that Dr was out of the state for the next month, so they put me with another Dr. I wasnt thrilled, but couldnt do anything about it. So appt was booked for me to check out the place and "interview" the Dr.

When I arrived at the Cancer Center, it was very nice and cozy. Everyone was very nice and I felt at ease. I met with the registration person and was told that I was in fact seeing the Dr I wanted to see originally! Say Whhhhaaaatttt?? Well come to find out, he heard about my case, read my file and actually requested me!:)

Because you see, I am a "medical rarity"! Since the drug I am on, Zelboraf, has only been FDA approved since August, he hasnt had anyone on this drug for more than a few months. And here I come, Ive been on this drug for almost 2 years, which is almost unheard of, with zero reoccurance and very few side effects! He was actually excited to meet ME! Crazy, right?!

The Dr and I bonded right away. He had already read most of my file. He knew exactly who my Drs were at Vanderbilt and at MD Anderson and he told me that I fascinated him and he would be happy to have me as his patient. He is very interested in Melanoma research and has been for years. He reads anything that comes out on Melanoma and Melanoma drugs and seemed to know exactly what he was talking.

One of my questions for him was, if my cancer happens to come back (which it wont!) what would he do? What would he recommend as my next step? And he passed with flying colors. He was able to give me percentages and drug names and everything. Made me feel very comfortable with putting my life in my hands. I also reassured him that if I didnt agree I would let him now. He didnt seem shocked by that...hmmmm....:)

The only thing I didnt like was he wants me to come back in 2 months instead of the 3 or 4 months like I wanted. He actually wanted me to come back every month, but I reassured him that that wouldnt be happening! Im switching to save money! I cant be driving up there every month for nothing. He is a little worried about my kidney and liver function because Zelboraf can affect those, however, after 2 years and both are fine, I am fairly certain I will be just fine!

So, overall, it was a great appt and I am pleased with my decision to switch. But, I am very sad to be leaving Vanderbilt. It was NOT an easy decision for me. And I guarantee u there will be tears when I go to Vanderbilt at the end of the month. I am very happy with my Dr there and in reality Vanderbilt has been amazing to me. It was not a decision I came to lightly and I pray I made the correct decision.

Well....Maybe?

2012-02-11T20:07:00.000-06:00

Recently i was asked if I would of listened to me if I was a teenager. Well, I would like to say of course! But, truth be told I simply dont know.

I tanned because I was obsessed with being tan. Look back at pictures of me in High school. I was obsessed with being tan. Being tan made me feel thinner and feel better about myself. I liked that feeling.

If I would of known then what I know now, knowing that I would in fact get Melanoma and fight for my life, then yes, of course I would of listened to myself. However, given a shot, say 50/50 of getting melanoma or not getting it, I dont know. I do know that melanoma sucks. I know that melanoma is awful. Simply awful. I know that melanoma is life threatening and with Stage IV your chance of surviving past 5 years is slim. Very few do. Now granted, I WILL be one of them, because thats just how I roll:) But, unforunately many wont.

I also know that I cant change the past. When I was first diagnosed I really dwelled on the fact that all those times I tanned I was actually causing my cancer. When i was first diagnosed I didnt understand it. I had no idea that the tanning beds and the sun had caused my cancer. It was only after I had some time to digest what was going on that I realized all that time in the tanning bed was now trying to kill me. Being tan and feeling better about myself is what is killing me now.

Clearly its not worth it. And I know that my friends that love me with all their heart and soul wouldnt even consider stepping in to a tanning bed. They have seen what I have gone thru. They have heard me vent. They have seen me suffer. They have felt my pain.

So looking back, I would like to say that yes, my past self would most definitely listen to my future self. Being tan is not worth it. My life is worth more.

A little bit of this and that...

2012-02-09T19:41:00.000-06:00

*Sorry I havent updated. All is good. I tend to update a lot on Facebook! Not so much on here! My bad!
*We are all doing great. Geebers turned 4 1 month ago yesterday. She is growing up so fast! She is a pretty amazing little girl!
*K-man is rocking it in Kindergarten! He's not a huge fan of the whole getting up early to head to school, but other than that he is having a grand ole' time!
*The husband continues to be employed so that is a bonus!
*I started working at the preschool that K-man attended last year. I am the assistant on Wednesday and Friday mornings in the 4 & 5 year old class and I love it!
*On Thursday mornings I volunteer in both of the kiddos classrooms. Its nice to get in there and see what they are learning about and how they do in the social setting.
*My kids are complete opposites! K-man is the quiet,shy one. He knows the answers but rarely volunteers them.
*Geebers is the more outgoing one. Even if she DOESNT know the answer she going to volunteer one anyway:) She is also quite helpful in the classroom. She is the little mommy. Sometimes that good. Sometimes not so much, but its who she is and I love her for it!
*I am in the process of switching my care a little closer to home. I am really sad about this, but the truth is traveling to Nashville is killing us financially. Each trip cost around $600-$700 once u figure in flight, rental car, hotel room, and food. Even going every few months is costly for us.
*I meet with KU Med Cancer Center next week. I am glad I am meeting with them before my next trip to Vanderbilt. It gives me time to weigh my options. If I dont feel comfortable transferring my care then I will stay with Vanderbilt.
*I have started cooking for my family lately a lot. Ive never been someone that enjoys cooking so this is a whole new thing for me but I am throughly enjoying it! You would think I would be gaining a ton of weight!
*K-man has been playing basketball on Saturday mornings. Daddy is his coach. Its rather entertaining to watch Kindergarteners play basketball. Not judging...just sayin...
*Last weekend after his game I fell on the cement and sprained my hand. It was awful. I was holding Geebers at the time and she went flying out of my arms and hit her head on the cement. Luckily one of my friends was near by and saw Ella crying so she came to help. Oy! What a weekend!
*For Valentine's Day I am making the kids heart shaped cinnamon rolls, heart shaped sandwiches for lunch, heart shaped pizza for dinner, and pb kisses with heart shaped chocolate in the middle. Im sort of excited :)

I Can Breathe

2012-01-06T20:08:00.000-06:00

After losing my mind with worry about not having insurance and my husband not having a job, God was just toying with us. Silly man! A few days before Christmas we heard word that the Ethanol plant my husband works at was going to keep on a skeleton crew. Their intention is to reopen the plant back up in about 5-6 months. My husband is one of the employees that they are keeping on. So, for now, he does indeed have a job and I do indeed, have insurance!

Of course, we are not viewing this as a permanent fix. In my mind, I'm not sure how it can be. Especially if Mother Nature decides to have another drought this summer. No rain? No corn. No Corn? No ethanol.

But, for the time being it is all good. Thank you all for your prayers. They truly do work!! God is pretty amazing!

Christmas Jar

2011-12-16T21:59:00.000-06:00

So, as you may know, this week was not exactly my favorite week of all time. Now, I will admit I have had worse. But not much!

Many tears were shed. Many adult words were said. Many hugs were received. But, just like I always do, I put on my big girl panties and decided to get over it. Such is life, right? Oddly enough, I dont control the world (even if I think I should....) and I certainly dont control the Ethanol world!

So, the hubs and I started brainstorming.

What Christmas presents should we take back? I do tend to go overboard on presents. Its just how I roll. Typically the hubs and I dont get presents for each other, but I am suprising him this year. And its an expensive big present. Something that we "needed" but in reality could probably live without if we had to. The kiddos each got their one big thing then a few little things, some clothes, and some pjs.

What "extras" can we cut out? (FYI- we dont have many extras-I have my DVR and the hubs got to keep his gym membership. We each got to chose one "extra" two years ago.)

What can I do to help our family? Should I go back to teaching? Subbing? Daycare? etc.

Should the hubs look into out of state jobs? If he gets a job out of state then what?

And in the midst of our questions, I sent the hubs out to get the mail. It seems nobody gets the mail when mama is gone!

I started going through the mail and noticed a package. I had ordered a few random things here and there for Christmas and figured it was one of those.

I noticed there was no return address on the package. Hmmmm. Interesting.

So I opened the package. Inside the package was a card. I opened the card.

Inside the card was a lovely note saying how they hoped the contents of their "Christmas Jar" would help me and my family this holiday season. On the other side of the card was over $300 in cash.

My hands started shaking.

Tears started streaming down my face.

I screamed for my husband to come here. I then remembered that there was also a wrapped package inside that envelope.

I opened the package and inside was a book, titled "Christmas Jar" . I had never heard of this wonderful little tradition before, but the more I researched the more I realized that this is something we should do. This is something that everyone that is able to do, should do!

At the end of each day you put all your loose change in to a jar. At this time of year, you choose a family that could really use some extra help this time of year (due to some sort of hardship, ie cancer, losing a job, fire, divorce, etc) and you donate that money to them. Anonymously. What a completely wonderful, thoughtful gift!

I'm not gonna lie. My faith was a little wobbly this week. (not that I ever doubted that God was there with me, I was just maybe a little annoyed with him!) And just like that. In a matter of a few seconds, my faith was restored. My heart was full. And suddenly I knew that everything was going to be ok. I knew that we could do this.

Now, I am going to challenge each of you to start a Christmas Jar. We all know someone, whether it is someone close to us or not, that is going thru a difficult time. Think about how amazing it would be to be able to secretly help someone out next year.

That my friends is truly what Christmas is all about. So, to my secret Angel out there, I thank you. I thank you for our special Christmas Jar gift. You will never know how much it helped or how much we appreciate you. We never, ever would of dreamed of something like that happening to us. You have honestly changed our lives. Not necessarily through money, but through our outlook on life. Someday, we plan to pay it forward.

Much Love-Heather and Family

Change of Plans

2011-12-14T16:25:00.000-06:00

Well, we had a slight change of plans. I went to my Dr appt this morning and everything looks great. I opted out of my trial. Set up my Dr appts for March and headed back to my hotel to take a nap before my CT scan (I had 3 hours in between!). During my little nap my lovely husband kept calling me. He never does that! Finally after the third time I grumpily answer the phone. Thats when he dropped a huge bomb on me...

The Ethanol plant that he works at is shutting down. In like two weeks. WHHHAAAATTTT??

Seriously? WTH! ~~Minor~~ MAJOR panic!!

First and foremost...Insurance. I MUST have insurance!!

Secondly...Income. I MUST have income.

So, many naughty words came out of my mouth, quickly and rapidly!

I called my nurse to ask her if I could be in the trial. She told me that in the discussions on Monday they had planned on closing the trial. But, she made some phone calls and turns out they will in fact keep the trial open for me for now. Whew. Minor crisis averted there. However, that does mean I MAY have to return to Nashville next month.

Here is the way this trial works...it has cycles...on the odd cycles they do the PK draws. Right now I am coming to Nashville on the even cycles. So, they want to switch that. So, I may need to return next month just to get back on even cycles. I currently have appts set up in March to return which would actually b on the odd cycle, but that may be to long in between appts. I'm waiting on the final word for that.

Right now my whole world feels a little up in the air. My stomach is in knots and I am a little stressed. I understand that it is all in God's hands, however, I have some issues giving up control. If u know me, then that is not a huge shocker! But, not knowing where your next paycheck is going to come from is a bit of a freak out! My husband is very well known out there in the Ethanol industry and has a lot of connections, so pray right now that it will all work out like it should.

Drug Update

2011-12-11T20:45:00.000-06:00

Its been awhile since I've updated! Sorry! I am doing great. We found out that that I will be able to get my chemo drugs mailed to me thru my Insurances speciality pharmacy. Since the drug I am on was FDA approved in August, I am actually able to transfer my care back to KS if I want to. I chose not to do that. I would rather keep my care at Vanderbilt for now. I really like my Dr and I feel like if the cancer decides to return, I will definitely be able to receive better care at Vanderbilt then I will be able to loccally. There are just more options available at Vanderbilt.

So, this week I am returning to Vanderbilt. I will opt out of my trial and set up a new travel schedule with my Dr. I know that he will be ok with me returning every 3 months. So for now, that is what I am shooting for. He would actually probably be ok with me coming back every 4 months, but thats a little nerve wracking for me.

Sometimes I truly cant believe how long I have been on this drug. With ZERO reoccurance! It is absolutely amazing! December 20th will be 20 MONTHS!! 20 months I have been on this amazing, life changing drug! The average is SIX months! I am truly in awe!

As we discovered this drug is NOT cheap! A three month supply, without insurance would of cost me $24,000!! Holy smokes! Luckily, we are blessed and have great insurance so I only pay a very small portion of that. I could of stayed in the trial and continued to receive my drugs for free, but since I will get to space out my trips a little more, this will actually end up saving us more money. And I am all for saving money! It will also allow me to spend more time with my beautiful family. And I am also all for that:)

Thank you all for your prayeres. My life is good. I am blessed.

Vanderbilt Update

2011-10-26T18:56:00.000-05:00

Last week I made a visit to my local oncologist. Nothing to worry about. Just my yearly appointment to keep a local Dr is I should happen to need him. I did ask him to write me a prescription for Ibuprofren thinking it would be cheaper. He freaked out a little when I told him I was taking 800 mg of Ibuprofren twice a day to keep the lumps under control. He ordered a basic panel which looks at my kidney function, among other things. Little does he know I have been taking that much Ibuprofren for the last 16 months. Well, actually he does know. I told him. But whatever.

For some reason, within a few days of switching from the store bought Ibuprofren to the prescription my inflammation lumps went CRAZY! Not.Even.Kidding! I was covered in them on my arms, waist, butt, and thighs. And they hurt. Soooo bad. Luckily they only hurt for a about 4 days then they start to go away. Obviously I switched back to the store bought ibuprofren and so far so good. So weird!

Today I had my appts at Vanderbilt. My labs looked great. For some reason my CT scans werent on the computer yet. I guess there's nothing to worry about. They gave me more pills:) Appt with the derm went great also.

I did meet with my trial coordinator and she dropped a bit of a bomb. Apparently I am the only left on this trial. Anywhere in the US. Isnt that crazy!! Since I am the only one left the trial hosts are considering closing this trial. There are some positives and some negatives with this.

The positives...It would allow me to space out my visits a little bit more and be a little more flexible. I could continue to get my drugs for free.

The negatives....I would have to pay for my drugs. Change. I hate change.

Vanderbilt and the trial host are still discussing what the plan is. I hope to know more next month, but I will definitely know more by the time I return in December.

But, over all a good appt. Meds continue and I am grateful:) Keep praying people! Its working!

I'm THAT Mom!

2011-09-10T19:43:00.000-05:00

When I was first diagnosed one of my fears was missing everything. All the firsts that my kids would get to do. First day of school was foremost on my mind. I was so, so scared that I would not get to see Kyler and Ella go to Kindergarten.

When I was originally diagnosed over 3 years ago, I remember crying a river in the shower about missing Kyler's first day of Kindergarten. It hurt so bad so think about not getting to see him off.

My Dr was so grim about my prognosis that I truly believed I would be gone in less than a year. What a scary, scary thought for a 30 year old mother of two young children. I cant lie, I am still scared. But, I know the power of prayer. I am living proof of the power of prayer!!

I think that's why, when on Friday, I was THE mom that brought in 10 extra boxes of Kleenexs for K-mans class, a couple tubs of wipes, and some snacks I smiled when another mom said, Oh yeah, you are totally THAT MOM:) Yes, yes I am. So, thank you Friend, you secretly made my day:)

What's That? I'm Normal?!!

2011-09-02T21:03:00.000-05:00

This week I made my 8 week trip to Nashville. I was able to fly out locally so that was actually really, REALLY nice. I could get used to that! I think next time I am going to put in a request to stay at Hope Lodge. Its not my favorite place to stay. But, it is free, and around that time of year we have to think cheap!!

So, I arrived to my hotel Tuesday evening. On Wednesday my first appt was scheduled at 8:40, however I knew I needed to be there earlier because my first appt was a CT. I have to drink my barium an hour before I have my CT. However, due to road construction and Vanderbilt being back in school I got lost. Totally turned around. I hate being late. Hate it hate it hate it!! And even though technically I was actually still early for my appt, in my head it felt late. Yes, I'm weird. Leave me alone!

Anyway, I usually have my labs before my CT. For some reason I didnt this time. BIG MISTAKE!! Apparently the techs in the CT area do not know how to hit a flippin vein!! O.M.G! When you are sticking a needle in me you only get one shot. That's it. Then someone else gets to try. So, the two techs couldnt get a vein so they had to bring me to a different area where there were actual nurses. Two different nurses tried to get a vein and THEY couldnt get it either. They finally had their head nurse come over, whom I told, either you get it or I am done. I dont care if they need labs and an IV for my CT I am done. Plain and simple. The nurse was not happy about being the LAST one to try and get my IV in, but she was nice and she got the IV in no problem.

At this time I was a wreck. I was trying with all my might not cry. I was sick of being poked and I just knew that when I finally met with my Dr that he was going to tell me the cancer was back.

You see, I am a big fan of following the signs, and the signs were not good at this point!

So, they had a nosey LPN, who read my file the WHOLE WAY TO THE WAITING ROOM!! Totally NOT his business! But, he brought me back and left and I started bawling. Lucky for me I had my favorite CT tech and he was able to calm me down. He walked me back to get my CT and told really stupid jokes the whole way. It was just what I needed! I love him!

After my CT I had my labs and then went and met with my Dr. My favorite nurse tech checked me in and got my vitals. He then broke the news that Dr Magoo (I really like how Chelsea makes up names for her Drs so I think I am going to do that to. It makes me smile:) was out sick. What? Hold the phone! I just traveled a bzillion miles to see him!! But I was able to see Dr Spa, who was Dr Magoos intern (or whatever they call it) so she knew me.

Now, here is where the news gets A.MAZ.ING!!!

The tumor in my hip, the one that actually got me in to this trial, is gone. Completely gone. In fact, Dr Spa thought it had been surgically removed! The tumor in my lymph node, is about .4-.5mm. So small that its hard to get a measurement on!! In fact, with that one she said if she hadnt read in my chart to look for it she wouldnt of thought anything about it. It looks like a "normal" person's lymph node!! AND, my LDH level, which is what they use to measure my cancer markers was within normal range.

Can you believe that?? I am an actual "normal" human being!! I have no signs of melanoma. Now, does that mean I can stop my chemo? Well, no. Its not as simple as that. I am NED BECAUSE of the medicine. If I stop the chemo, the cancer could, and probably would come back. And we certainly dont want that to happen now do we! So, I will continue to take my medicine. And I will continue to travel to Nashville every 8 weeks. And I will continue to remain cancer free. Because that's how I roll:)

A few weeks ago I found a lump in the lymph node behind my left ear. I spazzed out, because well that's what I do when I find an odd lump. I had already gone to my derm and my family physician about the lump. They both told me it was due to allergies, but after 4 days on a Zpac and the lump was still there I was really scared. So, I showed it to Dr Spa and she also agreed it was due to my sinus issues, but I still needed some convincing. I was already there. I wasn't coming back for 8 weeks. So I requested a fine needle biopsy. HOLY CRAP!! It hurt like hell, but all that came out of it was blood and "gunk"! In other words, it IS indeed a sinus infection! Dr Spa prescribed a stronger antibiotic for me and I am hoping it does the trick!

After that I drove to another medical building to meet with Dr Single, my derm, who was running an hour behind. He is never, ever behind. But that's ok, they have TVs in their patient rooms so I just watched a little Days of Our Lives and waited. When he finally joined me, he looked me over, agreed my skin looked great, and I left.

I then had to return to the Cancer Center to pick up my meds, because apparently they make the tiny little miracle pills right there on the spot. So, I went back and got my drugs and then I was FINALLY able to go to my hotel and rest.

And then my day got really good! HAPPY HOUR!! So, I enjoyed a few glasses of few wine to celebrate the good and bad parts of my day:)

Thank you all so much for your prayers! Keep praying! They are working!!

Leaving on a Jet Plane

2011-08-26T22:33:00.000-05:00

Next week I head to Nashville. This time I am actually flying out of our local airport rather than driving a total of 6.5 hours to KC where the flights are cheaper. From the beginning I said if flying out of KC doesnt save me at least $100, then I'm not doing it! This time it didnt, which I have mixed feelings about. Saving money is good. Driving 6 hours sucks though!

I have been way more anxious about this Dr's visit. Honestly I dont stress out anymore about CT scans. I know this medicine was MADE for me. I knew that at the beginning of this trial. When things kept falling in to place, I just felt it in my gut that this was going to work. And u know how I am about the whole "follow your gut" thing:)

However, last Friday I discovered a lump in the lymph node behind my ear. MAJOR PANIC MODE!! However, I called my derm and the squeezed me in (he loves me:) and he really felt that it was just sinus drainage. And honestly, he's never been wrong when it comes to me. But, as the week went on and the lump didnt go away I got more nervous, so I made an appt with my family physican. Now, I dont put as much stock in him, but he gets me in right away, he's close, and he gives me meds, so I went. He also felt like it was a sinus issue so he put me on an antibiotic. So far, the lump hasnt shrunk much, but I have lots of fluid draining out of my ears. Its fabulous! Right now I am just praying that it really is a sinus issue.

Right now I am covered in my fabulous lympoma lumps, which would certainly indicate that my immune system is working in overdrive. Or isnt working. It will be interesting to see what my white count is.

So, not only am I dealing with the stress of, well cancer, I am also stressing out about my little man. He is doing fabulous at school. I truly could not be happier. He has been blessed with an amazing teacher who I feel truly loves and cares about him (and probably all the other students!). But, next week since I will be in Nashville Grandpa will have to take him to school and pick him up. I dont WANT to miss out on pick ups:( I want to see him as soon as he gets out of school. I love to see his face when he walks out of the building. So, that has been rather difficult on me. I also have lots of anxiety about how he will do while I am gone. His teacher knows that I will be gone so she is prepared for that. I also let the secretary and his speech path know. Hopefully that means that his speech path will be a little more considerate when it comes to how hard she is pushing him. We shall see.

I just hate that I have to leave right now. I know Geebers will do fine. She's pretty adaptable. K-man? Ummm, not so much. But, such is life.

It could always be worse. Right now I am grateful for people that love us and are willing to change plans to help out our family. I am grateful for a wonderful teacher who gets that Kman may be a little emotional next week. And I am grateful for wonderful cancer drugs who have given me so much!

Kindergarten!!

2011-08-18T18:46:00.000-05:00

Today was the day! I sent my little man off to the big ole Grade School building. Honestly the morning was a bit of a blur. Geebers has to be dropped off by 8 and K Man has to be dropped off by 805. It is physically impossible (unless I orbe!) to get from one school to the otherr in 5 minutes. But, a friend gave me some different route ideas so I am going to give those a shot tomorrow!

Honestly, both kids have done great with dropping off. They are so excited to be at school that they barely notice when I leave. Sigh.... But, I am happy for them. Possibly a bit sad for me, but whatev!

I do believe the absolute best part of my day is when I pick them up. I get the BIGGEST smiles and the BIGGEST hugs of all time!! Its like I've been gone forever! Its fabulous! Geebers cant wait to tell me what she did and how she helped the little girl with the "broken leg" (she has a girl in the class with leg braces, and if you know Geebers, I can guarantee you she is the first one to help the little girl with EVERYTHING!) That's just who she is. She has one of the kindest little hearts. Man, I love her!

Today was K-mans first day so I couldnt get to much out of him. But I had to go inside the building (you are supposed to wait outside for them) to talk to another teacher and when I slipped out of the room and his class was coming down the hall. He happened to see me and he was sooooo excited that he ran down the hall and LEAPED in to my arms. I looked at the teacher to tell her sorry, but I could tell she understood. And there was no way I putting that little guy down!! I needed his hug just as bad as he needed mine!!

Even though today was rough and I missed my babies terribly, it is truly a great feeling to be able to witness this. Two years ago none of us thought this day would happen. During biochemo none of us thought I would pull through. My mom just confessed this weekend that they truly thought they were going to lose me during biochemo. This chemo has brought me back. It has saved my life. Noone knows how long this medicine will continue to work. But, I am truly thankful for every.single.day.

And I am especially thankful for this week. Because I got to see my 3 year old Princess attend preschool for the very first time and I got to see my super hero loving little big man attend Kindergarten for the first time. In a few years, I will forget about the rushing around and the waking up early. I will forever remember walking both my children in to their classrooms for the very first time. And I will always remember the hugs and kisses that I got when I picked them up.

That is what I will savor.

That is what I will remember.

The dropping off and the picking up.

Growing Up So Fast!

2011-08-17T20:43:00.000-05:00

Today my beautiful 3 year old Princess started Preschool. She is one of the role model students at one of the Elementary schools in our town. She will attend preschool in the mornings Tuesday thru Friday. I know it is a fabulous program and I know she will be great, but I'll be honest, I teared up all morning long! She is growing up so fast! She is such an amazing little person. I truly feel blessed to be her mommy.

As you know, I was diagnosed the day she turned 6 months old. At that time I truly thought I wouldnt get to see my baby girl go to school. I remember crying and crying every time I took a shower because I truly thought I would be gone by now.

My little big man starts Kindergarten tomorrow. Its a big day. He is so ready. I, however, have teared up every time I think about him being away from me all day long. The last two nights we have The Kissing Hand and every time I have cried. Geez! I cant do that! When I cry my kids get scared. We've been thru so much that to them tears mean bad news. Therefore, I rarely cry in front of them. I save that for the shower!

I still remember the day I was diagnosed. I still remember the day I met with my oncologist. I remember him telling me I need to get my things in order because my life expectancy is about 6 months-1 year. Clearly he didnt know me! Because 6 months didnt exactly fit in to my schedule! But, as a new "diagnosee" I listened to my Dr. I truly thought my time was going to be that short. I was so scared I wouldnt get to see K go to school. I was so scared I would never get to see my Princess grow up. But, you know what, I am getting to see those things! I am getting to be a mom! Yes, I have bad days, who doesn't? But, I dont take any of my days with my kids for granted. I love being with them. I love loving them. I love holding them. I love being their mommy!

So, wish me luck tomorrow as I send my baby boy off to his first day of Kindergarten and my baby girl off to her second day of Preschool.

What? You Have Cancer? Really?

2011-07-23T19:27:00.000-05:00

Don't get me wrong, I dont ever mind hearing how fabulous I look, but I dont think that people, who dont have Melanoma, really get how dangerous it is. Because they look at me, I look fine, and they figure that is how it will work out for them.

Let me just be the first to say, that the last three years have sucked major monkey balls! I have fought my ass off (literally!! have you seen how thin I am?!) to get this far. I have researched. I have found the best doctors. And I know exactly what I will or wont try as far as chemo goes. I know alot about almost every melanoma chemo drug out there. That's just how I roll. I am a research junkie. That wont ever change. My husband, who is certainly more laid back I am (that's why we work so well together, I stress out, he stays extremely calm-it works for us:) has already been told, when I get to sick to fight that he will just have to fight for me! (PS My MIL and mother have also been told the same thing:) I have lots of fighters on my team!!

But, I do know that if you happen to see me walking down the street, here is what you will see:
a mommy, with a Princess holding one hand (probably in a swimsuit!) and a superhero holding the other hand. Both probably fighting over which hand to hold!
A mommy carrying a big bag filled with 100 SPF sunscreen, water, and snacks.
A mommy who loves her 2 children more than life itself.
Two beautiful children who love their mommy to the sun and back.
A mommy who will fight forever to be around for her children.

What you wont see is a mommy who worries every.single.day about Melanoma returning.
A mommy who is scared to death to cry in front of her kids.
A mommy who is in pain almost every night because of the damage that biochemotherapy did to my legs.
A mommy who wishes that cancer was all just a bad dream.
A mommy who will never ever stop fighting, researching, educating, and praying.
A mommy who truly believes that God has a plan for everyone. This is mine. There is definitely a reason I am still around.

And even though this mama is looking fabulous and kicking some cancer ass, please remember to wear your sunscreen and protect skin. Its the only skin you have! Protect it people!

CT Results

2011-07-12T22:34:00.001-05:00

Last week I made the trek to Vanderbilt for my bimonthly appts. I started with labs, CT scan, Dr appt, then I headed across town for my derm appt, then went back to Vandy for my repeat labs and to pick up my meds.

Originally we were going to make this a family trip, however, my husband couldnt get off work, and I sort of decided I needed a little mommy time ;) Sometimes its nice just to have a few nights without bedtime battles and tears!

My labs looked great so no worries there. My CT scans took a little longer, but I did get the results yesterday. I currently have a new nurse. My old nurse would just email me and tell me that the scans looked great and no need to worry. This nurse emailed me and asked if anyone had called me with my CT scan results. Major freak out!! I called her immediately.

But, she quickly informed me my CT scan looked PERFECT and I had nothing to worry about:) So, at this time I have been on this drug for 15 months with absolutely zero reoccurance! How simply amazing is that! I am the poster child for this drug! Its like this fabulous drug was made just for me! And that, my friends, is a true miracle!

In fact, the head of the Melanoma dept at Vandy has used my pathology when giving lectures on the effectiveness of this drug! Cool, right?! My melanoma is famous!

I have certainly had many bumps in the road the last 3 years, and it definitely has not been easy, but I am more definitely one lucky mama! I am truly blessed!

3 Years? Really?

2011-07-08T21:16:00.000-05:00

3 years ago today my life changed forever. Nothing has been the same since my dermatologist told me, "You have Melanoma." At that time I had no idea what that really meant or the seriousness of it. I knew he wasnt kidding, and I knew from the look on his face that it was serious, but I truly had no idea how different my life was going to be. And I guarantee my husband didnt! Considering his response on the phone was, well ok then. Gee, thanks dear!

The last three years have been rough. Really rough. My body has been through more than most 33 years olds will go through in their lifetime. I have been on 7 different chemo drugs, and honestly only one (the one I am currently on) has truly worked. And it has worked wonders!!

Studies have shown that eventually my melanoma will find a new pathway around the Braf gene. Currently, what the drug I am on has done, is turn off that Braf gene, therefore in a sense, the Melanoma cant spread because it figure a way around the gene. Lucky for me, I have really stupid cancer:) It cant figure out how to get around it, I like stupid cancer. No, scratch that, I LOVE that I have stupid cancer:)

One thing I do know, is that my time is probably running out (on this drug that is!). Soon my melanoma will get around it. We knew when I started this trial that this wasnt a permanent fix. Just temporary. Well my temporary has turned in to 15 MONTHS!! Awesome right?! But, this does beg the question, what will we do next. Where will we go from here. And, I'll be honest, I dont really know. Dont get me wrong, there are lots of trials and lots of new drugs to try. But, I think a part of me will be extremely upset and hurt when this medicine stops working. This medicine and I have a bond! It hasnt ever failed me, I would really rather it didnt start now!!

The good news is, as far as I know (I dont have my recent scan results yet), this medicine continues to work, and I continue to kick cancer's ass!! If you know me, then you know very well, that I will NEVER, EVER stop fighting. I have way to much to live for. I really, truly do, and that is why God is watching over me. That is why He continues to help me win this battle!

That Gut Feeling

2011-06-26T21:07:00.000-05:00

Do you ever have a gut feeling? You know, that gut feeling that tells you something is right...or that something is wrong? Ever since being diagnosed I have been a big "gut follower." I have grown quite found of my lovely gut. Usually it is right on. Sometimes it gets a little overly cautious, but I'm ok with that. I would rather have it be overly cautious than under cautious. Know what I mean?!

When I started this trial back in APRIL 2010!!! I just had a feeling that this was the trial for me. I dont know why. I had been thru sooooo many different chemo drugs and really nothing had worked. At least not for long. I just FELT like this was the medicine for me. The average time on this medicine is 6 months! The pure fact that I have made it for 14 months with zero recurrance is an absolute miracle. It really and truly is.

Sometimes I get so annoyed and frustrated that I have to travel for my medical treatments. But, the fact of the matter is, no matter what, with Melanoma, I will always have to travel. Kansas jut doesnt have the best cancer care. At least not for Melanoma. KS offers the standard medical care, but trials for Melanoma are rare, and not all that great. So, having to travel will always be on our "must do" list. Boo!:(

But, I guess if I have to travel I am grateful that I have to travel to Nashville, TN, because let me tell ya, Nashville is BEAUTIFUL!!

Goodbye

2011-06-14T20:53:00.001-05:00

Yesterday, June 13, 2011, my Great Aunt Lotta passed away after a long, long battle with Melanoma. A few weeks ago I decided to load up the kiddos and head back to see her. That was a decision I will never regret and will always, always remember.

I didnt think it would be the best idea to bring the kiddos with me, in case you didnt know they are a bit wild and I just wanted to be able to focus on chatting with my Aunt, not telling them to sit down and get off of things the whole time! So, I called my Grandma and asked her to head to my Aunts house with me. My whole family lives very close to one another, its kind of nice actually. So, Grandma and I went up to her house and we were able to chat for about 45 minutes.

I held it together quite well while we were there, but once we left, and I dropped my Grandma off, I lost it. I just bawled. There is something about seeing someone you love, someone that you know is going to pass away soon, in a hospital bed. It was just a bit to much for this girl.

Since I didnt want to be left with that vision, I made the decision to go back to see her the next day. I am so, so glad that I did. She looked so much better. She was sitting up in the chair and joined our conversation. That is the day I will always choose to remember. I am so glad something told me to go back.

Before cancer my Aunt and I werent all that close. But there is something about having cancer. The exact same type of cancer, that brings people together. Because of my Melanoma I have truly made some great friends. Friends that I have never ever met, but truly adore. That is how I feel about my Aunt, of course I loved her, we were family. But I truly admired her. I looked up to her. She fought Melanoma for THIRTEEN YEARS!! She beat Melanoma for thirteen years! That is truly amazing. If you have listened to me preach then you know that only about 10% of people with Stage IV melanoma live more than 5 years. Luckily, with all the new research being devoted to Melanoma, that percentage is raising. I can only hope and pray that I will be able to beat Melanoma for that long (however, longer would be fabulous!)

Rest In Peace Aunt Lotta. Your battle and your fight were inspiring and will never be forgotten.

Much Love-Your Great Niece

Therapy?

2011-06-06T20:33:00.000-05:00

When I first started to blog, way, way back when, I used my blog as a journal. I chronicled our life. Everything. I did not have cancer at that time, so it was all about the fun stuff. Which was actually pretty nice. A journal is a good thing to have. I just need to remember to write in it! A few things have happened since I last posted. I did finally get the results from my last scan. They were fine. What really worries me is being able to tell the difference before the fatty lumps and new cancer. So far I havent noticed anything other than the fatty lumps, which is good:) I have felt pretty good. Tired, but that's pretty normal anymore!

This sun has been fierce here in KS. We just skipped right over Spring and now its in the 100s and the sun is a killer! Even with 110 SPF on I can feel the sun just burning the heck out of me! Grrrr! But, the meds are working, so I will deal with it. My husband got me some awesome spf shirts to wear and I absolutely love them! I only have two though, so I need to get some more! They have been lifesavers! While the kids are outside in the pool wear one of those to protect my shoulders, a big ole hat, sunglasses, and lots of sunscreen. So far I have only burned a few times. Its really a matter of trial and error, how often do I need to reapply. For normal people every hour or two is adequate, for me, its more like every 30 minutes!! Ugh!

But, oh well!

I hope everyone is practicing sun safety and wearing that sunscreen!!

Bracelet Fundraiser

2011-05-25T23:02:00.000-05:00

In case you didnt know, I truly have some amazing friends. Really, I do! One of my good friends volunteered to host a fundraiser for us to help with medical expenses.] You have no idea how much it costs to travel back and forth to Nashville every month. I am so glad that I only have to go every other month from here on out. At least until the cancer returns (which better be a long, long time from now!)

So, in order to help out, we are selling black silicone cancer bracelets. The bracelets will say "Keep Fighting Heather" followed by a cancer ribbon. The bracelets will be $5 a piece, plus shipping (not sure what that will be!). If you would like to show your support by ordering one (or more!) you can either leave me a comment or email me at dolfinlvr101 (@) yahoo (.) com.

We will also be having a fundraiser the evening of Tuesday, June 21st, at Cherry Berry here in our town. They are donating 10% of their proceeds earned that evening from 4pm to close, so if you are local, mark your calendar and come on down!! We will also have the bracelets there to purchase and a few of the pink cancer shirts from last year.

If you would like to purchase the bracelets (or shirts) you can pay via paypal using the link on the right hand side or you can mail me a check. However, I dont feel comfortable putting my address for the world to see, so you will have to send me an email and I will send you an address to mail the check to.

Thank you all for your support the last few years!!

2 in School!

2011-05-06T22:06:00.000-05:00

For the last few weeks I have been on the fence as to whether or not to enroll E in a Mother's Day Out program. The program is not at our church, but at a Methodist church in a neighboring town. It has received great reviews and they incorporate lots of educational activities into their program, which I loved, of course!

And after talking with several parents whose kids attend the program I was sold. I knew we needed to do it. Of course, I was still worried about leaving her for a whole day, but I also knew it would be good for both of us. E and I are rarely apart. Like ever! But, I did it. I went ahead and got a tour of the classrooms and enrolled her in the program for next year.

After that we went to the Mother's Day Tea at K's preschool and decided to have a picnic lunch at the park and play for a bit.

After an hour or so we came home for Learning Time and had a message on the machine.

A few months ago I enrolled E in the Role Model program through our local school district. The role model program is a prek program that is offered in our school district for kiddos that are 3-5. The class is made up of a few kids that are considered the role models and other kids who have some sort of disability (speech, learning, physical, etc). When E was evaluated all the examiners agreed that she would be a FABULOUS role model. If you know E then you would certainly agree. She is seriously one of the sweetest little girls you will ever meet. She has the kindest heart and she is super smart to boot!

However, getting in to the role model is not easy. It's honestly all about who you know. We dont know enough people to get her in to the program :( So I didnt think it would happen. But, guess what! It DID! She got in! On the exact same day that I enrolled her in the Mom's Day Out program. Sigh...Luckily I did not pay anything for the MDO program so we arent out any money or anything. I just feel bad that I am going to have to call and "unenroll" her from the program now!

The dilema for next year will be that E will be at one Elementary school and K will be at another. With start times 5 minutes apart. That could be an issue! However, K's Elemetnary School does have the Early Childhood program so with a little luck and a little prayer an opening will come up at K's school before next year and E can go there. That would be PERFECT!! Both kiddos would be at the same school. K would attend Kindergarten all day and E would go for a little less than half day 4 days a week.

Honestly, the program is wonderful. I really wish K would of qualifed. He would of really benefitted from the academic side of the program. But, here are my concerns, first and foremost, is the fact that E will be away from me for 4 days a week. I dont like that. I want her with me always! But, I do realize that this will be good for her and for other kids, because let's face it, she's a pretty awesome little girl:) Second, how in the world will I get one kid to school by 8 and the other by 8:05?? That one will require a plan! Third, there goes my dream of homeschooling E for prek. I am really, really sad about this. I was really looking forward to this. She has such a strong desire to learn that I know homeschooling will be so much fun with her! However, once you get accepted in to this program you dont turn it down. Many people would love to have this opportunity, so of course we are going for it. I will suck it up and get over my fear of leaving her and some how we will figure out the drop off times. Where there is a will there's a way, right?!

Moral of the story is...my babies are growing up and I am so sad!!

Happy Yet Sad

2011-04-27T20:56:00.000-05:00

Lately it seems like all my friends are pregnant. Every where I look someone else is announcing that they are expecting. Don't get me wrong, obviously I am truly happy for all of them. Every last one of them. I think they are all amazing women and will make amazing mothers (again:) However, part of me hurts. Hurts for the 3rd child that I will never, ever have. I'm not even sure I would want a 3rd child. Its just the pure fact that I CAN'T that really bothers me!

However, when I was pregnant with E, my husband and I both decided that if it was a boy we would try one more time, if it was a girl, we were done. God obviously knew what He was doing when He gave me a girl. He knew that my heart and life would not be complete without a little Princess in my life. And believe me, E is a true little Princess! Oh my goodness is she! That little lady is ALL girl and ALL Princess! And apparently He knew that is what I would need.

I can't say that I'm not sad about never getting to experience the thrill of being pregnant or the bond of a nursing newborn. Luckily, I have many wonderful friends who are expecting and are more than happy to share their experience with me.

So, a big shout out to all my pregnant friends. And please remember me when that baby needs some loving (but do NOT remember be in the middle of the night please, oh heck, I'm probably up anyway, feel free to call:)

Homeschooling

2011-04-15T06:30:00.001-05:00

Last month we had K's preschool Parent/Teacher conference. I was worried about his behavior issues, however that wasnt even an issue! His teacher (whom I felt really should of focused more on the positive, but that's just the teacher in me speaking...) really seemed to focus more on his academic issues and things that he needs to know for Kindergarten.
I'll be honest, I really was under the impression that preschool was teaching him these things. And of course we read every night, but it's more for enjoyment, not learning. So, my thinking has changed. Since the conference I have really started researching homeschooling and finding all sorts of fun activities to do at home.

At first, K was NOT thrilled with this! At all! And it was a major battle every day. However, I have sort of got it figured out a little more and so has he and he LOVES it! And guess what! His behavior has totally changed for the better too! Yay!! I am thrilled! Who would of thought?!

So, here is our schedule....every day (mainly during the week, but sometimes on the weekends we will all sit down as a family and play Alphabet Bingo or a number game, etc) E has her rest time from around 1-3, so from 1-2PM K and I will work on number and letter activities. I am currently working on the same letter that they are working on at Prek and then we do something with numbers also. I have found all sorts of homeschooling lessons to use at home. The one that really set the tone for making it fun for him was this Batman Lesson! Jackpot! We dont use the letter lessons anymore, but we can still use the number matching portion of it over and over. The numbers only go to 10, so I need to figure out a way to make it to 20. I'll work on that::) I know some of you have asked what websites I really like, so I will post the links below. Hopefully they will help you out also!

My husband and I have made the decision that next year, Ella will not attend prechool. I really feel like the 3 year old year of preschool is more for socialization. K needed that. Without a doubt. However, if you have ever met E, then you know what a social butterfly she is:) So, instead of sending E to prek next year, while K is at Kindergarten E and I will be able to do some preschool homeschooling activities. I am super excited for it! She is DYING to do the learning time with K, but I really think it needs to be more about him. I think that is what has made it so successful. It is just his time with mommy. E will get that next year. A LOT!!

So, here are some of the websites/blogs that I love....
1plus1plus1plus1equals1
Confessions of a Homeschooler
Making Learning Fun

**For the record, I have no intention of homeschooling K next year. He will attend public school. This is simply to prepare him for Kindergarten.

Vandy

2011-04-13T18:15:00.000-05:00

Today I had an appt with my Oncologist and Dermatologist in Nashville. My appts both went very well. I have actually missed seeing my oncologist. I havent seen him in like 4 months! So, it was nice to finally touch base with him. He also agreed that me coming to Nashville every month and only seeing him every other month was just plain silly. So, with any luck and many prayers, those folks in charge of the trial will actually listen to my Oncologist and agree to me only coming every other month and just getting everything done at once. As my Dr pointed out, I really am the star of this trial, at some point they should cater just a bit to what is convenient and affordable for me! I'll keep you updated!

I also had my 3 month appt with my Dermatolgoist. Unforunately my derm is not in the office on Wednesdays so I met with another derm, whom I really liked I might add:) Everything looked great. I do have an odd rash on my upper arms and back. He said that it was a form of ezcema and nothing to really worry about.

He also noted a small bump in my right lymph node and some fluid uptake in my left lymph node. Neither are anything to worry about at this time.

I was able to discuss some other options for being safe in the sun and apparently I am doing everything that I can do! Other than wearing a huge "Kentucky Derby Sized Hat" which I will be purchasing when I return home, by the way!

This medicine makes me extremely sun senstive. The other day my friend and I were outside, in the shade, watching the kid play, with sunscreen on, and I FRIED!!! My nose and arm burnt so badly that I blistered. *sigh* It sucks. So I am just going to have to be diligent about reapplying sunscreen. Awwww, hello summer! But, I am a mom of two very active children, so NOT playing outside is not an option! So, I will just have to start buying stock in sunscreen:)

My derm did mention that there is not a difference between sunblock and sunscreen. For me he recommended 100 SPF, however for an "average" person he said that 50 SPF applied every 2 hours is adequate. His recommendation for sunscreen was Neutrogena, he did not have a preferance for the spray or rub on, but he did recommend the rub on for me, at least for the initial application.

So, with summer coming, please PLEASE make sure your skin is protected and that your childrens skin is protected! Even one bad sunburn increases your chance for Melanoma by 50%!! Yikes! Be careful out there!

I'm A Little Bit Stronger...

2011-04-10T16:16:00.000-05:00

Have you ever heard that country song that says something about getting stronger everyday. I dont know who sings it and I know it's actually about a relationship and how even though he left her she continues to get stronger every day. Obviously, I dont have that situation to deal with, but I do feel like I get stronger every day.

Every day my determinaton to beat this awful disease is tested.

Every day I wish I could just be "normal". I wish I could live like my friends. They dont travel every month to cancer appts. They dont have to pay for the travel expenses and the medical bills that we do. They dont have to worry about frying so bad out in the sun that they blister-even when using sunscren. They dont have to worry every day about their cancer returning.

They are free to live their lives how they want to live. To an extent, I can, but my cancer has also really limited me in other senses. And that sucks. Every single day I worry that this may be the day my cancer returns. I know, that in theory I cant live my life like that. But, it doesnt matter. I still worry.

I am so scared that I wont get to see my kids grow up. That has to be my number one concern or fear. That my children will grow up without me. Have you MET my children? They are totally mama's babies. No doubt about it. They adore their mama and I adore them right back. I have a special bond with them. We are about as close as a mama can be with her children. And that scares me. If this cancer eventually wins how will THEY handle it? I know they will have to deal with it, but I dont want them to HAVE to deal with it. I want this cancer to just go away. I want it to leave me and my family alone.

For now, it is and for that I am grateful. I truly believe God knows how much I need my children and how much they need ME. He knows that this medicine needs to continue to work.

April 20th is my 1 year anniversary of being on this medicine. I have been on it for one year with NO RECURRANCE!!! That, my bloggy friends, is truly a miracle. God knows. He just does. Keep praying. It's working.

CT scan

2011-03-18T20:36:00.001-05:00

This week has been a crazy, busy week! More busy than usual! Dont get me wrong, I actually LOVE the fact that I am able to be a busy mom. Something that I couldnt do a few years ago (due to being sick with the biochemo).

This week I had a trip to Vanderbilt for a follow up CT scan. So, on Tuesday I loaded the kiddos up and we headed towards KC. We met my mom on the turnpike and switched cars. She took the kiddos in my car and I ended up with their lovely ~~piece of shit~~ car. Who knew once you hit 100 that their car would almost fall apart. Ha! I kid Dad. I kid. Anywoo, after I dropped the kids off and headed to Kansas City to fly to Nashville. I stayed the night in Nashville Tuesday night and the next morning I had my scan.

After several flight delays I finally arrived back in KC Wednesday night and made it back to my folks house with my monkeys late that evening. Normally I would head home the next morning, but a dear friend lost her father unexpectedly and his visitation was Thursday evening. So, instead of heading home, the kiddos and I hung out for awhile with my folks and then we were able to take a different route home so we could stop by the visitation. I am so glad that we were able to do this.

And today has been spent having an upset tummy and getting ready for the coupon class that I am teaching with a good friend tomorrow morning.

What? You didnt know that I am a Crazy Coupon Lady? Then you must not be on Facebook:) Coupons have saved us a bundle! I no longer pay for certain items, instead I hold on to coupons and wait for a sale and match up those coupons. I have been able to cut our grocery bill down to around $50-60 a week and I have created a stockpile that I am super proud of:) Maybe I'll show of pics someday. Only if you promise not to think I am insane!! Because of coupons we have been able to pay cash for my last few trips to Nashville. Which to me is simply amazing! I am really hoping to start a separate bank account where I can start putting a few dollars here and there each week and we can take the kids to Disney World. With CASH!! How amazing would that be?! Can't wait:)

PS No, I do not know the results of my CT scan. Hopefully I will know something next week.

I'm Still Alive!

2011-03-09T19:27:00.000-06:00

Sorry folks! I really am still here. I promise! I just haven't really been in much of a writing mood I guess!
I am doing really well. Tired, but the joint pain seems to be less and less. Or at least it seems to last for a shorter period of time, which is a bonus!

I did just have a bout of the flu and that majorly sucked! One thing I have noticed is that when I am ill the inflammation lumps really start popping up. Last time I was sick they popped up like crazy. I seriously had about 40 of these inflammation lumps all over my body. And they hurt. Really hurt. At first anyway. After a few days they start to feel better, but I can always tell when one is getting ready to pop up because I hurt. Bad. This time I only had about 20 pop up, but they hurt. I hate that! Still, a small price to pay for all that I am getting out of this medicine! Plus, I've had biochemo, nothing is worse than biochemo!

Recently I was told of a friend of a friend who is also battling Melanoma. Our stories are so similiar it's scary. He has completed 4 rounds of biochemo. He returnd this week to MD Anderson and was informed that he has a new spot on his brain. So, in otherwords, the bio isnt working. At least not as well as you want it to. So, as for now, biochemo has been stopped and he is looking into Braf trials. You can visit his blog here. Click on the link that says "Brian's Fight" on the rigt hand side.Please say an extra prayer for this amazing guy!

Next Tuesday I head back to Nashville for CT scans. That's all. Just a quick scan, then I turn around and head back home. Seems kind of silly, right? But all scans have to be done at the same facility, so that is the reason I pay to fly to TN to have a scan.

April 20 is the big day for me. April 20 marks the 1 year mark for this trial. This drug works an average of 6 months, for me it has been twice that. In one sense, I am so very happy and so very grateful! On the other hand, I am a nervous wreck! I feel like it's just a waiting game. I'm just waiting for it to stop working. Just waiting. And that's an awful feeling. I know that's why I have been on edge lately. The uncertainty is rough. I know that it is all in God's hands, but sometimes relinquishing that control is difficult. Especially for someone like me! A control freak! For now, I need to trust that the Drs are reading my scans correctly and that God knows what he is doing. Thank you for all your prayers! Keep 'em coming!

Zero Motivation!

2011-02-13T22:16:00.000-06:00

Lately I have had NO motivation to do ANYTHING! Not sure what the deal is. I am tired all.the.time. I dont want to sew. I dont want to cook. I dont even want to leave the house. I just want to lay in bed and watch TV or sleep all day long. Obviously, I cant do that. I have two children to take care of. But, it is taking every ounce of my being to get out of bed some mornings. Ugh! I hate it! I hate that I feel like this.

I hope that it is just the weather. We have had oodles and oodles of snow here in the Midwest and the kids and I have actually been trapped in the house. As in, we couldnt leave even if we wanted to! Sigh. We had lots of fun coloring, painting, playing with play doh, playing the wii, the DS, Leapster, and watching lots and lots of movies! Usually my kids are pretty darn good. However, lately all they have done is fight. Over really stupid shit. It is driving me insane! I have never heard two children fight over such stupid stuff. Sigh. I think they need to get out of the house also!

But, Tuesday I leave for Nashville so, no trips to anywhere fun with Mommy will be happening this week. However, I know they will have a wonderful time with their grandpa. He always manages to keep them entertained! And since the weather is supposed to be awesome this week hopefully they can get outside and burn some of that energy!

I hope everyone has a wonderful Valentine's Day. Since we are trying to live a little more frugally each kiddo got a little something and Cody and I decided to forgo gifts this year. But that's ok. Because I am ROCKING at this frugal living/couponing thing! It's like a game. But, more on that later:)

Vanderbilt visit

2011-01-24T21:33:00.000-06:00

Last week I had my appt at Vanderbilt. This one was for a CT scan and derm visit. Seems kind of silly to have to fly there for just a CT scan and derm visit, but this is a trial, therefore all CTs have to be done in the same location due to reliability. So, that's why I had the priviledge of traveling to Nashville last week.

I don't necessarily mind going. I like Nashville, I like Vanderbilt. But, I could do without the costs. That gets a little old month after month.

But, I had a reality check last week. I will ALWAYS have to travel for medical care. Always. Kansas sucks for cancer care for Melanoma. That's just a fact. So, if I am going to have to travel, it might as well be to Nashville, for the awesome meds that we know are working so very well on me. I mean, really, why not, right?!

So, are you ready for the final report on the CT scan? Yeah, I thought so:) The tumor in my hip is STILL not showing up on CT scans, so the rumor is is it totally! So the tumor that actually got me into the trial has actually disappeared BECAUSE of the trial. Awesome, right?!

The tumor in my lymph node that showed up right before the trial and measured something like 3 or 4 cm (I don't really remember and am to lazy to go back and look right now), measured 8.5mm 2 months ago, and measured 8.2mm this appt. So, according to my oncologist the tumor actually shrank. However, it is quite difficult to get an accurate measurement because the tumor is SOOOOO SMALL!! Awesome, right?!

So, the meds are STILL working on me. I will continue to head to Nashville once a month. And I will continue to Praise God and urge you all to continue praying for us.

I will not ever beat Melanoma. That is just the way Melanoma works. Like it or not, such is life. But, just because I can't beat it, and I can't make it stop coming back, that doesn't mean that I can't fight it. Here is my hope, I can fight it off long enough, that they will eventually come up with a treatment that will kill Melanoma for good. I have already beat the odds. This treatment ususally only works for about 6 months, I have been on it for almost a year!! Woo Hoo!! Awesomeness!! I am already defying the odds. Why stoip now?:)

Superhero Capes

2011-01-09T19:15:00.000-06:00

About a month after I was diagnosed I decided to make a "Bucket List." Some of things I have accomplished, some of the things I am working on accomplishing, and some of the things I may never accomplish! But, because of my latest project I am getting closer, however, I will need your help!

At the end of this week, I, along with the youth group at our church and several other adults who enjoy sewing will begin cutting out and sewing super hero capes.

For who you ask? For children battling cancer of course!

This is something that is very near and dear to my heart. I have wanted to do this for awhile, but time is an issue! Now that things have slowed down a bit I really want to do this.

However, I will need help! We are needing donations of yards of fabric. Any and all colors are welcome, but they need to be at least a yard. We are also asking for monetary donations. We will use the money to go and purchase the supplies for the capes.

This is simply just a little something that I (and you!) can do to put a smile on the face of a child battling such an awful disease.

If you would like to donate to this fabulous cause please click on the paypal link and in the comment section put what the donation is for.

Easy peasy!

Thank you so much for your support!!

Photo courtesy of: http://www.sewplainjane.com/

Painful

2011-01-07T21:58:00.000-06:00

For the last few months my side effects from the chemo has been pretty minimal. However, as of the last 2 days the side effects are kicking my butt!! All those weird inflammation lumps have come back with a vengence! A major vengence! For the last 4 months or so I have only had around 5 lumps at the same time. No big deal. But now? Now I have like 30 lumps! On my legs, arms, butt, and waist. And they freaking hurt! Oh they hurt so bad. Now, I know they will die down in a few days, but I would love to know what is causing them to pop up like this. It is so odd.

And, now, on top of the lumps, I also am having some major joint pain. My shoulder is killing me. Usually it's just my fingers and it dies down as the day goes on. But this shoulder pain doesn't seem to go away. Now, I know that it will also go away, but my baby girl turns THREE tomorrow! I MUST be in tip top shape! I have some major partying to do!

So for tonight, this mama is taking lots of pain meds and going to bed. Tomorrow is a new day and it will be great!

Random (possibly stupid) Facts About Me....

2011-01-06T22:22:00.000-06:00

1. I have major difficulties sleeping (hence the reason for this post!)
2. I look forward to watching Day of Our Lives.
3. I hate leaving my children.
4. Even if it's just for a few hours.
5. I cry every time I think about my baby girl turning 3.
6. I am so sad that my kids are growing up so quickly!
7. If I was healthy, I totally would of had more children.
8. I am so sick of writing checks to Vanderbilt!
9. The way that Vanderbilt does their billing is STUPID!
10. Because of beforementioned medical bills, I have been put on a budget.
11. I am going to try really hard to do the Dave Ramsey plan.
12. I don't know if I can do it!
13. I love to spend money on things for my children.
14. I am anxious to do our taxes.
15. I love cheese.
16. Especially Vel.vetta.
17. I wish I still had a cleaning lady:(
18. My favorite color is pink.
19. I hate to take baths.
20. I thought Se.x and the City 2 was really stupid.
21. I used to love getting my picture taken.
22. But now I have a lazy eye because of this medicine.
23. So I don't ever want my picture taken again!
24. I enjoy having my kids sleep with me.
25. I do not enjoy getting kicked in the back!
26. I love Diet Pep.si. Love it!
27. Blow pops rock. Espcially the sour apple ones.
28. Ree.se's are my chocolate of choice.
29. I can't sing to save my soul.
30. My kids don't seem to care:)

2010 In Review

2011-01-02T18:22:00.000-06:00

January 2010...
Started the year cancer free. I just "knew" 2010 would be a great year.

E turned 2 and started potty training!

February 2010
Returned to Houston for scans and discovered that the melanoma had returned to a small spot in my left hip. Cried the whole way home...

March 2010
Cruise to the Bahamas with my husband, bestie and her husband. During cruise discovered a mass in my left lymph node. Found out during cruise that I was accepted into the trial at Vanderbilt, pending the other tests.

E completed potty training!

April 2010
Began trial at Vanderbilt. Within 2 days of beginning the meds the tumor in groin had shrank to half the size!

May 2010
Returned to Vanderbilt, with the kids for second part of the trial. Began developing some nasty side effects from chemo. Nashville FLOODED and we lost EVERYTHING, except our car (thank goodness!) Was taken off the chemo for a couple of weeks to get my body back to "normal."

Restarted the chemo.

Turned 32.

Celebrated our 7th wedding anniversary.

June 2010
Friends held benefit for me and my family. Discovered the masses forming under my skin and started freaking out. Found out the masses were NOT cancer. Stopped freaking out.

July 2010
Returned to Nashville
2 year anniversary of kicking cancer's ass!

August 2010
Returned to Nashville with the kids. No flooding! Woo Hoo! Enjoyed some family time in the midst of Dr appts.

September 2010
K started Preschool!
Nashville trip

October 2010
Nashville trip
Took the kids to Disneyworld!

November 2010
K turned 5!
Returned to Nashville.
Celebrated Thanksgiving with my amazing family!

December 2010
Nashville trip
Celebrated Christmas with my amazing family!

Who Am I?

2010-12-30T16:30:00.000-06:00

What defines you? When people look at you, what do they think? Do you ever get those pitying looks? Ugh! I HATE those looks. I am NOT defined by my cancer. I don't want to be.

I want to be a mommy.
A wife.
A daughter.
A daughter in law.
A granddaughter.
A sister.
A cousin.
A niece.
A friend.
A BEST friend.
A Christian.
A teacher.
A survivor.

But please do not define me as someone with cancer. I am not. I am simply someone who is battling cancer. I was dealt a really shitty hand.

So, the next time you run across someone with cancer, don't say you are sorry, because my response will be, it's not your fault. Don't say, keep fighting, because why would I stop? Just give them a hug and say, awww man, that really sucks! What can I do for you? Chances are, they won't take you up on it, so do it anyway! The best surprise for a cancer patient? Food for their family. Gift cards. Money.

My point is, don't look at me and feel sorry for me. This is what it is. It blows. But oh well. Such is life.

Papilloma

2010-12-23T22:44:00.000-06:00

Since the pain in my breast has been slightly annoying, my oncologist at Vanderbilt wanted me to see my family physican. I was not happy, but knew that I needed to get an antibiotic so I really didn't have a choice. So today, amid the billion other things that I needed to get done, I also went to my Dr. Which actually turned out to be a good thing.

What we thought was an infection, actually turns out to be what is called a Benign Intraductal Papilloma. It's just a tiny growth that occurs in the milk duct. How and why this happened noone really knows. Chances are it has been there, growing, for a long time and just now became large enough to feel. I only have one, so it's nothing to worry about, but it will have to be surgically removed. The Dr put me on an antibiotic which will shrink it for the time being.

At this time I am not even going to think about having surgery. It's a pretty minor surgery, at least in comparsion to what I have been through, but chances are I would have to stop taking the chemo. At least for a few days and that is not something I am willing to do. The more you stop and start the chemo, the better chances you have of building of a resistance to them. So, for now, I am going to take the antibiotic, which will hopefully shrink it down a bit, at least enough so that I am not in constant pain and just suck it up. I have (or will have!) an appt with my OB/GYN in January and since she is absolutely fabulous, I will discuss it with her, get her opinion, and discuss my options.

But, if they are going to make me stop chemo, then in my mind, the only option is to suck it up and wait. We know this chemo won't work forever. No matter how much my mommy wants it to, it just won't. Boo, right?! But, it is what it is. So, for now, we wait and pray the antibiotic will shrink down the growth enough to ease the pain and we thank God that it's not cancer!

Love This!

2010-12-22T20:02:00.000-06:00

Cancer, I did not give you the right, To invade my body and take a bite.

This is my body and with all my might, I will prevail with one hell of a fight.

To the cancer inside, I will battle and kill.

For that is my body's God given will.

To my cancer, these words I do send. Your life is short and near the end.

Christmas Card

2010-12-20T19:49:00.000-06:00

Trying to get a good picture of my kids for the Christmas card this year was darn near impossible! I did manage to get one, but this one was so darn funny I simply had to share it:)

Happy Holidays from our house to ours!

Sense of Humor

2010-12-19T21:09:00.000-06:00

I have proof that God has a sense of humor. And that he is a male. For sure a male. A funny, funny male at that.

Let me back up just a bit. I kept the details of some of my cancer a secret. For selfish reasons. For embarrassing reasons really. But the purpose of this blog is to raise awareness about Melanoma. To raise awareness about the dangers of TANNING BEDS and the sun. What better way to convince teenagers NOT to tan, then to tell the intimate details, right?

So here goes....way back in April 2009, goodness doesn't that seem like forever ago? To a person that was given 6 months to live it's pretty amazing that I am still here kicking ass:) Anywoo, way back then when we found out the cancer had come back and we were heading to MD Anderson the CT/PET scan showed that I had 4 tumors. One in my breast, and 3 in my ASS!! Seriously, you ask? Yes, seriously people.

After a couple rounds of biochemo 2 of the tumors disappeared, 2 in my tush remained. After 6 rounds they had certainly shrank but they were still there. They had to be surgically removed. Nice.

Proof that God is a funny, funny man.

One tumor was removed in Sept. The second in Dec. I had hella problems with the second tumor. I have never, ever showed my ass to so many people.

Proof, that God is a funny, funny man.

Now, fast forward to this most recent appt at Vanderbilt. No worries, my ass is fine:) However, the night before my appt I found a lump in my breast. Fabulous. I wasn't going to tell the Dr. Why? Because I like my Dr. I really didn't want to have to show him my boob! But, the morning of my appt I made the decision to tell him about it. I figured there was a reason I found it the night before.

So, I went to my appt and told my Dr. Then I showed him my boob.

Again, proof that God is a funny, funny man.

My Dr was worried. We had two options. One was a mammagram, but he didn't think it would really show us anything (and to be honest, he wasn't sure it would even work on me, I, ahem, wasn't really blessed in the clevage area....)the other option was a fine needle biopsy. I choose that one.

Holy hell did that hurt! A tiny little needle was inserted into my nipple and moved in and out a whole bunch of times. Repeat that times 3!! Holy shit! After everything I have been through I am a pretty tough cookie. I have to be. But oh dear me, that hurt that a son of a bitch!

The preliminary results were back in about 30 minutes (yay for cancer centers that have all the equipment and facilities right there!) and turns out I have an infection in a mammary gland. Odd? yes. But am I complaining? Heck no! It's NOT CANCER! Just a silly little infection in my boob.

So, there you have it folks. I officially have proof that God is indeed a male with a very funny sense of humor.

True Friendship

2010-12-11T19:14:00.000-06:00

Throughout the last 2 and half years I have been through a lot. Obviously! But not just my battle with Stage IV Melanoma, but just in my life in general. Which, to be perfectly honest, everything that I have dealt with lately relates back to cancer in one way or another.

I think people have a difficult time remembering that not only am I dealing with cancer, my children also have to deal with this. No, they don't have to actually fight the battle (thank God!) but they are still dealing it. Every day they deal with it. There are reminders of what mama is going through everywhere.

Yes, lately life is better. Much better. Especially compared to biochemo. It seriously does not get much worse (chemo wise) than that. But Interferon wasn't a real walk in the park either. The chemo I am on now, RO5, is a piece of cake compared to everything else! But, I still have to be gone every month (yes every month-not every other like I was originally told!-I will post about that later-grrrr!) and that affects little kids. Both of my kids are definitely mama's babies. That's just how it is. I hope it never changes.

Both of my kids deal with their feelings differently. E was only 6 months old when I was diagnosed. This is the only thing she has ever known. She deals with it a lot better than K. E is a super happy, easy going, eager to please little Princess. She is friendly, helpful and loving. Everyone that she meets instantly falls in love with her. That is just who she is. Yes, she can be a little stinker, of course, what child can't, but relatively speaking, E is a pretty easy kid. Unless, of course, you take her mama away from her. Then she screams like a wild woman! She does not like being away from me. At all. But, such is life.

K, on the other hand, deals with his emotions a little differently. His involves screaming and crying. He is over the hitting phase (thank goodness!) he rarely hits, but he has resorted to screaming. I think a lot of it stems from the fact that he doesn't know how to express what he is angry about. We have really been working on this at home and I have definitely seen an improvement. He really is a kind and caring kid. I think he just struggles with his feelings. What guy doesn't?! Right?! It doesn't help that people give up on him. We have belonged to a certain program for years. K messed up a few times and he was out. I was not happy. My feelings were hurt and I was beyond pissed. Especially since I was told that day that he had a good day (from the teacher!), only to be called in to a meeting (after we were loaded in the car ready to go!) and be told that K was not welcome back. E could attend the program, but not K. Ummm, yeah right?!

But, given what we went through my eyes have been opened. I have realized that we need to work with K on expressing his feelings appropriately and I have also realized who my true friends are. Your true friends stand by you and support you and your family no matter what. They will express their feelings, they will hold your hand, and they will love you no matter what.

I recently attended the funeral of a friend who passed away due to cancer. Of course the funeral was difficult, but what really shook me up is the thought that it could (and will) be my funeral some day. Hopefully a long, long time from now, but someday that will be mine. I kept thinking about what my kids would be doing. What pictures would they show on the slideshow. What would I wear (PS already picked out). What casket would my husband pick out (PS my besties already know this!) What songs would they play (PS already picked out also) Who would come. Who would speak. Where will I be buried (this one is really tough on me) etc...... My friend had a group of girls whom she was very close to. They had reserved seating and were all brought in right after the family. I really like this idea, however, there are very few that I would include in this special group. Maybe 5, 6 girls that I consider really, truly great friends. I think I am going to have to write down all these directions for my husband. Anyone surprised that I would actually do that? Didn't think so....

Slacker!

2010-11-30T11:00:00.000-06:00

I'm sorry, I'm such a bloggy slacker, aren't I!

Here is an update from my last visit.
MRI of the brain looked great. No worries. We are contributing the headaches to allergies, back/neck problems, and to much Scentsy in my house!

CT looked great. The original tumor is GONE! Totally and completely gone!! Woo Hoo! The tumor that was in my left groin/lymph node is still slightly visible but to small to get an accurate measurement on. We know its NOT growing, but its to small to tell if it is still shrinking. Either way, I am good wtith it!

I also found out that after Decemeber I will only have to return to Vanderbilt every other month. This is a little nerve racking for several reasons. One, I am the ONLY one, out of the 5 of us that started the trial, that is still on the medication. One had to end it really early because it was damaging her kidneys, the other 3 showed progression on the drug (their cancer grew). I am the only one who it is still working for. I am thrilled, of course, but nervous also. If it quit for them, why wouldn't it quit for me? We already know that it will eventually, we just don't know when exactly. So, the thought of only returning every other month is a little nerve racking. However, going every month was stupid. All I did was have labs, see the Dr, and get my meds, so really it was kind of pointless. At least now when I go I will have a CT scan every time, so that will help ease the mind a bit.

Overall, I am doing well. Joint pain and fatigue, but nothing abnormal. For me, anyway!

Appointment

2010-11-21T20:06:00.000-06:00

Tomorrow I have my appts at Vanderbilt. I have MRI, labs, CT, EKG, and appt with Dr. (so I had Good times written right after Dr. but then it looked like I had an appt with Dr. Good times. Hahaha-totally made me laugh out loud!)

Good times.

The flight getting here was a stinking nightmare. Delay, after delay, but I got here, safe and sound so I am grateful.

As I lay here in my hotel room I cant stop thinking of all the things I really, really need to be doing at home! I have so many embroidery orders my head is spinning! But, in a good way of course!

I miss my monkeys. I have sucked in the mommy/wife department lately. And I hate that. I have just been so stinking busy! I hope that my hubbie and kids understand!

Stressed?

2010-11-12T21:04:00.000-06:00

Lately I have been one stressed out mama. For numerous reasons. You know how I roll. When it rains it pours!

I have been getting some pretty bad headaches lately. Which is odd for me. I dont really get headaches. Some of the pain has been sinus pain. I really should be used to that! But I have also had some pain behind my right ear. It's an odd pain. It hurts when I push on my head so in all likely hood it is probably a bruise. But, when you have cancer you tend to freak over everything. So, I have asked them to schedule a MRI appt along with my other appts.

I leave for Nashville next Sunday (Nov 21) and all of my appts are scheduled for Monday. I should be home Tuesday as long as everything goes like it should.

Here's the thing with the drug I am on. It does NOT cross the blood/brain pathogen. Therefore, if, for some odd reason the melanoma has spread to my brain the Braf drug that I am on would not do anything to fight that off. It would still work on the rest of my body though. Odd, right? I am not quite sure what we would do if that happened to be the situation. But, since that WON'T be the situation I am not going to dwell on it.

One thing I have learned from all of this is that stress + cancer= NOT GOOD!! Soooo, I either take up drinking or learn to deal with my stress! While the drinking actually sounds like a grand ole time, it's probably not the best option for my family:) Plus, I'm really not a huge drinker, although I did attend a Wine Party the other night and found a new wine, ChocoWine (I think) and fell.in.love!! Chocolate + wine all in one? Yum-O people!! How was that for rambling?!

Anywoo...I am working hard on dealing with my stress, without alcohol:) The End.

Absent

2010-11-02T23:16:00.001-05:00

I must apologize for being absent lately. Life has been a bit crazy over here! A good crazy, but crazy nonetheless!

As you know, I started selling Scentsy a few months ago, and I must say it is going quite well! I have been quite pleased with it. Thank you to all of you who have hosted basket parties or ordered off the website! You guys are the reason my business has been successful!

I have also been participating in a couple of craft shows, selling my homemade sewing items and embroidered items. The craft shows are quite enjoyable, but boy is the prep a lot of work!

Here are few examples of the fun crafty items I have been making...

These are just a few of the items I have been busy sewing up! As most of you know, sewing is something that I throughly enjoy. It makes me happy. It makes me smile. And it USUALLY relaxes me:)

The tutu bags has been a WONDERFUL seller with my friends and family so I am hopeful that they will be big sellers at the craft fairs also:) Keep your fingers crossed for me! I have been lucky enough to make a new friend who makes some wonderful, beautiful hair bows and we have been sharing a craft booth. She makes her bows and I do the sewing projects. It has been nice to have a friend there with me. If you are interested in any new hair bows, be sure to check out Allie Foo Foos Tutus and Bows on Facebook.

We also decided to take a little family vacation last week. As you may know, ever since I was diagnosed I have said that I want to take my kids to Disneyworld. Being diagnosed with cancer is a major slap in the face. It makes you wake up and realize that your life may be cut short. My husband and I talked and talked and dreamed and dreamed about taking the kids, but, darn Disneyworld is EXPENSIVE!! However, because of my persistance and constant website checking I was able to find an AWESOME deal! So we booked it. And guess what, I don’t regret going one little bit! It was worth every penny. Every blister. Every sunburn. Everything. It was amazing! Every day since being home we have said how much we wish we were back there! That is how amazing it was for us!

My son LOVED the Buzz Lightyear ride. He constantly asked to ride it over and over again. And my daughter, well, let’s just say that that girl has never meet a Princess that she didn’t like:)

At the Princess Breakfast at Epcot

E attempting to ride Bullseye! Goofy girl!

Cinderella’s Castle *sigh*

My little Princess!

Watching It’s A Bug’s Life in 3D

**As you may have noticed, I am trying to protect my kids by not placing pics of their faces on here. If you are a friend on FB then you have already seen our Disneyworld pics. If you would like to become my friend on FB, (which I update more regularly than my blog:( leave me a message with your name and I will look you up and add you:)

You can’t tell by these photos really, but a WONDERFUL, FABULOUS time was had by all! It was so nice to take a family vacation and not have to worry about Dr appts and entertaining kids in Drs offices. Pure bliss I tell ya!

Let’s see, we are also gearing up for a certain big boys 5th Birthday! That’s right. My baby boy will turn FIVE on Saturday. I am really having a rough time with this. Five just seems so old! But, he is ready, he is soooo ready for his birthday. In fact, that crazy kid has been talking about his birthday for months! He has been going through the Toys R Us toy catalog and been cutting out pics for the last few weeks. He is going to be a bit disappointed when he doesn’t get every little thing he has picked out! But, dang, that kid has some expensive taste:)

Ok, so now you know why the blog has slacked. How was that for a major hodge podge of updates!

stupid

2010-10-17T19:26:00.002-05:00

CANCER IS STUPID!

the end

Definition

2010-10-07T11:47:00.000-05:00

Sometimes I get so mad that cancer has changed me. It has not only changed me in the inside but also on the outside. It has changed how I feel, it has changed what I do, and it has changed how I think. It has also changed the way OTHER people look at me. But, I have decided that I am ok with that.

I don't think people look at me and say, oh you poor dear, you have cancer. I think they look at me and say, seriously? You have cancer?

And I am ok with that. Because even though cancer has changed me. It has changed me for the better. Odd, I know, but I am ok with that too.

Because, you see, because of cancer, I am a better mom, sister, daughter, wife, and friend. I realize the importance of family and friendship now more than ever. I realize how important it is to be there for the ones you love and to make sure that they know how much they mean to you.

I also believe that cancer has made me stronger. Fairly certain that 2 and half years ago most of you would not have considered me to be brave, or strong, or a fighter, however, I have NO doubt in my mind that those are words that you would use to describe me now. Because I am. I AM brave, I AM strong, and I most certainly AM a fighter.

So, yes cancer does suck, MAJORLY, but because of it I have become a better person. I no longer take for granted those special (and some not so special!) moments with my adorable little babes. And I no longer care about stupid petty things. Things are in perspective. So, thank you cancer for giving me that.

Now, if you don't I feel as if I must kick your ass... (I'm talking to cancer there, not you readers:)

Vandy Update

2010-09-27T19:09:00.000-05:00

Today I had my appt at Vanderbilt. The appt consisted of labs, CT scan of chest, abdomen, pelvis and lower extremities, EKG and an appt with the Dr.

Labs went fine.

The CT was awful though!

First, they didn't have my orders for the lower extremties. For some reason this is ALWAYS a problem. I called my nurse and she faxed the order over.

I waited in the waiting room.

I drank my lovely Barium drink. (Blech!)

And I waited some more.

Finally, after 2 hours I heard my name.

The tech asked me if I had my paperwork.

What? Seriously? Why would I have that?

They lost it. It was nowhere to be found.

After some searching it was discovered. Finally!

Then it was lost AGAIN! Get it together people!

Then it was found. The CT was started.

CT without contrast was done. The tech came over to put the contrast in my IV.

Iodine and blood starts going EVERYWHERE! Not good!

The IV was pulled out and the tech attempted to start a new one.

First try he stuck the needle in, wiggled it around and got nothing.

Second try, same freaking thing!!

Third try, I told him if he couldn't get it he was done. He tried the other arm and after some wiggling he was able to get it. Lucky for him! Pretty sure I would have punched him in the hand if he didn't get it!

CT was completed. Finally!!

EKG was fine and appt with the Dr went quite well. I like my Dr here. We may not always see eye to eye, but if I can see him and talk to him he always listens to me. Which is a nice feeling! After all of this I have become quite knowledgable, not only about Melanoma, but about my own body.

So, appt today went quite well (report wise anyway!). The original tumors are to small to even measure! No new tumors and the plan is to continue on the meds like I am.

Prayers are working! Keep on praying friends!

Stand Up To Cancer

2010-09-10T21:44:00.000-05:00

Tonight I watched Stand Up To Cancer. Did you? I'll be honest, I couldn't watch it all. After the first 5 minutes I was bawling. I mean really bawling. I don't know why. It just hit me really hard. I realized that this chemo won't work forever. Soon I will be back where I was a year ago and will have to start all over.

As I was watching the show I would see people say things like I am here for my mother. That was hard to handle also. Some day my kids may be saying that. Some day my children may have to tell people about me. Instead of getting to meet their friends in person, my kids will have to show them my picture and talk about me. I hope they talk about how much of a fighter I am. How I fought my ass off up until the end. How I did it all for them.

My kids know I love them. My kids know I have cancer. My kids know that at times mama is sicky because of the cancer. My kids know that we hate cancer (or that it sucks monkey balls!). But, my kids don't know that some day this cancer may take their mama away from them. How do you even tell a 2 year old and a 4 year old about that? Well, if you're me, you don't. You just keep fighting with every ounce of your being.

Right now I am one of the lucky ones. Every now and then I will hear some show or read some news story that is talking about Stage IV Melanoma. Every.Single.Time they say that a Stage IV diagnosis means a survival time of 6-12 months. Really? That's it? Well that doesn't seem very fair now does it. I was diagnosed with Stage III or Stage IV (totally depends on the Dr you talk to!) on July 8, 2008. Now, over 2 years later I am winning my battle. I am in remission, with the assistance of chemo of course, but right now I am actually in remission. How fabulous is that? Not many people with Advanced Metastatic Melanoma get the honor or priviledge of saying that. But, I can!

My Newest Endeavor

2010-09-08T22:54:00.001-05:00

I know I have sort of been MIA lately. Sorry about that. The latest Dr appts went ok, I think. I never really hear anything back at these appts, since I didn't have a CT scan or anything. Labs apparently looked ok, they gave me my meds without any issues, so that is always a bonus!

The reason I have been absent is I decided to add something else to my plate! You know, because I don't have enough going on in my life! My most recent adventure is Scentsy! If you haven't heard of it, smelled it, or given it a shot, you simply must! Scentsy uses a low watt candle and wax and give your house a wonderful smell. No soot, no smoke, just yummy smells!

Now, since I am just starting out, I could use your help! If anyone would be able and/or willing to host a party for me, I would be very appreciative. It could be an actual at home show, or simply a catalog party where people place orders by viewing a catalog. I have (or will have!) a basket of some of the different scents available that you would be able to set out to show your friends and coworkers. Or, for those of you far away, simply ordering from my website is very helpful. You can check it out at here.

Thank you all for your support!

Nashville with the family

2010-08-28T23:05:00.000-05:00

In late August we decided to take a family trip to Nashville. We figured it would be the last time we could all go as a family until next summer. We left Friday night right after Cody get off work and drove almost to St Louis. We stayed the night in a hotel and the next morning drove the rest of the way to Nashville. On our way we decided to stop in St Louis and visit the Arch. The kids thought it was pretty cool to be able to go that high and look out the little windows. Mama, on the other hand, would have preferred staying on the ground!

Kyler and Mama outside the Arch.

Ella and Mama on the way up the Arch

Ella looks like she is getting ready to jump out of the Arch!

Posing for Mama to take some pictures!

Family Trip

2010-08-25T21:29:00.000-05:00

http://www.tnaqua.org/Home.aspxOn Friday we are leaving for Nashville. We are going to take the kiddos this time and drive. K starts Preschool after Labor Day and they will both be attending Mom's Day Out at our church, so this is the last time that we can go as a family without them missing school. The hard part is my husband missing work. With his previous job, they were actually wonderful about my Drs appts, his new job has not been as great. But, he was approved for this little trip so we'll see how this goes.

I have appts on Monday morning, but should be done by 1pm so after that we are going to head down to Chattanooga so that we can go to the Aquarium the next day. Yes, the same Aquarium we went to last time. Yes, it's that awesome!! Here is the website, but it doesn't do it justice! I even enjoyed it, so you know the kiddos did!

I don't really expect anything to change at the appts. I don't even see the Dr, I see a Nurse Practitioner. I am basically driving 12 hours to get more meds. A little annoying, but whatever. I guess you do what you have to do for the good stuff:)

Pathology Results

2010-08-14T21:44:00.000-05:00

The pathology results came in last week and mass came back as some sort of inflammation. Oddly enough, nobody really knows what it is! It is an inflammation in my fat. I guess it's a good thing that I don't have a ton of it!

Last week, before the path report came back my oncologist wanted to take me off the trial until the results came in. I can see his side, sort of. He was thinking in the frame of mind that these masses are melanoma. And honestly, if my derm here wouldn't have already biopsied one and I already knew they were not cancer, I would have agreed. Why stay on something that isn't working anymore when I could be preparing for the next trial?

However, I knew these were not cancer. I wasn't worried. So when my nurse told me that my Dr would not refill my prescription until the results were in I was pissed! Here are SEVERAL reasons why...
1. Stopping and starting these meds are an excellent to build up resistance
2. I had enough meds on hand to get me to Friday, which was when the path reports would have been in, however I wouldn't have been able to see a Dr until Monday so that means Sat and Sun without meds
3. When the tests come back as inflammation I would have to purchase MORE plane tickets to head to Nashville to get the meds. Hello...EXPENSIVE!!

So after some crying and whining, my nurse emailed the head oncologist in charge of the trial, he said, under no circumstances let her stop the meds! Problem solved. Yippee!

My prescription was filled. No return trip the following week. And my mass came back as inflammation. A good visit over all:)

As for the PET, some of the masses lit up, some did not. The tricky part is being able to differientiate between cancer and the fat masses. There is no sure fire way of knowing what is what (Other than taking a biopsy of every single one-which is NOT an option!). So, I guess for now, we just go with my gut. We'll see what happens with that:)

As for side effects, well, the masses obviously, joint pain, sun sensitivity (majorly) and some fatigue. But, other than that I truly am doing quite well. I feel so blessed. No, really, I do. I have been through SOOOOO much worse. I am grateful to be on a chemo med that is presenting few side effects and is working so well.

Life is good.

CT turned into a PET

2010-08-03T22:17:00.000-05:00

As you know I left for Vanderbilt on Sunday night.

Monday I headed to the Cancer Center for premed labs (which my nurse forgot to schedule), CT scan, EKG, appt with Dr, and post med labs.

They were able to work me in for labs after I waited for about an hour. After those were done I headed for my CT. I had my favorite tech so that was nice to see her again! After my CT I headed to my EKG, after waiting for about 45 minutes I finally asked what the deal was, apparently the tech had went to lunch and nobody told me. Lovely! So left and went to my Dr appt.

My weight has stayed the same, which is good, vitals were great, white blood cells were NORMAL!!!, platelets were NORMAL!! red blood cells were a bit low, but nothing to worry about, and my cholesterol was a bit high, odd for me, but we looked at the past tests and ever since I started the RO5 it has been high so that is obviously a side effect of the meds.

My Dr came in and we discussed the CT scan. He said he looked at the tumors we had been watching and saw a little bit of shrinkage, but not much. This is ok. This means one of two things, either the tumors are DEAD, or the RO5 has shrunk it as much as it can and right now it is simply holding it off. Either one I am ok with.

One thing the Dr and I discussed were all the nodules that were on the CT scan. At the time of my appt a radiologist had not read my scan. Just my Dr. Even though I feel my Dr is a brilliant man, he did not have years of training reading scans. He did not feel comfortable being able to distinguish between the fat nodules (lipomas) that the meds are causing ad the cancer. So, he just measured the two tumors we have been watching all along and called it good.

Here is where it gets tricky. If a radiologist reads the scan and can't tell the difference between the nodules and cancer, I will be taken off the study. Plain and simple. After some discussion we decided that a PET was needed. On a PET scan cancer will actually light up so it is easier to tell if it is cancer or not.

I think my nurse is starting to understand my predictament with the whole traveling thing and as we stepped out of the room she was already calling to schedule a PET for me. Finally, being a pushy bitch is paying off!!! :)

So, a PET was scheduled for the following day. My flight was changed BACK to my original flight and all was good.

On Tuesday I had my derm appt. I am really pleased with my derm here in Nashville. He is very knowledgeable and very personable. His fellow came in first and examined me. I was able to show him the nodules. I am currently up to 24 nodules. They are under the skin but they present a red discoloration on top of the skin. Some hurt, some do not. Some are large, some are tiny. Some are actually making bruises. Most tend to be in my hip and thigh area. And those are actually the ones that are bruising. I told my friend I probably should not wear a bathing suit. It looks like someone has been beating me!

After I showed the fellow the nodules my derm came in. I explained that they come and go and then I showed him a few. He actually did not think they were lipomas. He did NOT think they were cancer. He felt they were an inflammation of some type, but I don't actually remember his exact words.

I explained that I was having a PET done because the radiologist couldn't tell the difference between the nodules and cancer. He explained that sometimes inflammation will light up on a PET. Which totally freaked me out! So, just to be safe he decided to take out one of the nodules and send it to pathology. He also took off a mole that had been worrying me. It had been changing in color and shape. Probably due to the meds, but like he said, I have enough to worry about!

When the nodule was removed there was absolutely NO sign of discoloration. It was simply all fat. He feels that the RO5 is causing an inflammation in my blood vessels. In another situation he would say stop what is causing the inflammation. In my case that really isn't an option, so for now I just deal with it. I'm ok with that. I have really and truly been through worse. What's a little inflammation!

We should have the results of the PET scan tomorrow morning. My oncologist will take a quick read of it. If he feels the cancer is being kept at bay, the nurse will fax in the order for my RO5 and I can head out.

I'm honestly not worried. I know the meds are working. What I am worried about now is the cost. Since my husband switched jobs that means we have also switched insurance. Which means new deductible. Which means out of pocket. Again. I am sure his old insurance company did a little happy dance when we left. However, I did not waste any time breaking in his new insurance company, did I!!

Some day I will explain how this trial works and what we are expected to pay and what the trial covers. But, for now I am going to bed. Thank you all for you prayers!

Vandy Visit

2010-07-30T09:51:00.001-05:00

I leave on Sunday evening for my appts at Vanderbilt. I have labs, EKG, CT scan, and an appt with my oncologist. Before most CTs I am a nervous wreck, but I am feeling quite at peace with this one. My husband is too, so that is a good sign.

Why, you ask? Well, my husband is a very wise, intiative man. Back in February, I had every intention of going to my appt at MD Anderson by myself, however about a week before I left, my husband insisted on going with me. Odd, but I didn't argue. I was so grateful that he was there. We received the news that my cancer was back. I needed someone strong and he was. Not once did he shed a tear (in front of me).n I bawled the whole way home. A 12 hour drive, I might add! And finally, he convinced me to take a sleeping pill so that I could sleep instead of cry! He's a great man, I tell ya!!

So, anyway, my point being....I think this CT scan will be fine. I think the meds are still working. I am a little nervous about how they will distingish the lipomas from cancer on the scans, but that's why they get paid the big bucks, right? :)

Do u know me?

2010-07-28T21:51:00.000-05:00

If you know me then you know that I am a very up front person. I don't beat around the bush and I don't sugarcoat my opinions. It is what it is. I am real. Take it or leave it.

I have noticed that a lot of young women with Melanoma don't want to talk about it. I have struggled with this. Mainly because I am an open book. Yes, this happened to me. Yes, this is my fault. However, why not try to spread awareness and hopefully save some other people at the same time. I know that all of my dear friends and the people that love me would not even CONSIDER stepping a foot into a tanning bed. No if ands or buts. But, I have noticed that even people that love me and care about me still don't take the necessary precautions when they are out in the sun. This drives me wild!!

Yes, tanning beds are way more dangerous than the sun, but the sun is still dangerous. You still need to protect your skin. Anyone can get skin cancer. Anyone. They don't "think" it is genetic, however, I think I would beg to differ! If you are out in the sun, please, please make sure you are wearing sunscreen. I prefer sun BLOCK. I wear SPF 100, but that is simply because the RO5 makes me VERY sun sensitive. My kiddos wear SPF 50 or higher.

Please don't feed me the bullshit that we need the Vitamin D. They make supplements for that. I take the supplement every day, as well as my children and my husband. A supplement is WAY safer than the sun. Trust me!!

I know some of you are soooo sick of me preaching. I know that. I guess I just want to make sure you are all safe. You all mean a lot to me. I would never want someone else to go through this. I certainly wish I didn't have to.

Still Kicking

2010-07-21T14:24:00.000-05:00

Not much to update, just didn't want some of you to worry about me:) I'm doing quite well actually. Still having some joint pain and fatigue, but I've been through worse. The kids and I are keeping quite busy. We have been swimming, museum trips, playdates, Mommy and Me playgroup, open gym, and the children's theatre. There hasn't been much time for anything else! Including worrying!

I head back to Nashville the first week of August. On Monday I have labs, EKG, repeat CT scans, and a Dr appt. On Wednesday I have an appt with the Dermatologist and then I can head home. I have NO IDEA what I will do on Tuesday. I am quite annoyed that I have a day in between like that, however, no matter how much I bitched and moaned, they wouldn't change it!

It Came and Went

2010-07-14T14:18:00.000-05:00

This year July 8th came and went. Honestly, I didn't even realize that it was July 8th until that evening. Hey, it's summer. All the days run together for me!

The minute I realized it was July 8th I got butterflies in my stomach. Two years ago, on July 8th, was when my Dermatologist told me that I had melanoma and it didn't look good. I relive that day constantly. I am always thinking about that day and how it could have been different. But, it can't be different. It is what it is.

I won't lie, cancer sucks! Majorly! But, I have a wonderful support system and I have a great outlook on life. There is absolutely no reason that I would ever consider giving up. It's really not even an option. Sometimes this fight gets old, but the alternative really isn't all that appealing to me! I truly feel like I am one of the lucky ones. Many people with Stage IV Melanoma don't make it this long. And look at me! Here I am. Two years later, spreading awareness about the dangers of tanning and the sun, taking care of two beautiful children, and kicking cancer's ass! I'm pretty much a rock star:)

News Story

2010-07-07T19:59:00.000-05:00

Check out the following link to see the local news story on my family and the dangers of tanning. I am hoping and praying that my story has made a difference in the lives of others.

News Story Here

Back It Up A Bit

2010-07-04T14:45:00.000-05:00

When I was pregnant with my daughtjer, which would have been the summer of 2007, my husband and I were on a walk with the little man when he noticed a spot on the back of my calf. At first he thought it was a bug or some dirt and tried to wipe it off.

When I realized what he was doing, I remember telling him, oh yeah, it's just some spot that showed up one day. It doesn't hurt, but I'm not sure what it is. I didn't worry about it the rest of the summer. He wanted me to see a dermatologist.

I didn't. I was busy.

E was born in January 2008, and I remember showing it to my obgyn at my 6 week post baby appt. She wasn't sure what it was but recommended a dermatologist for me to see.

I didn't. I was busy.

At Easter in 2008, my mom noticed the spot on the back of my leg. My mother is a nurse. She recommended that I see a dermatologist right away.

I didn't. I was busy.

On July 8, 2008, the day my baby girl turned 6 months, I finally went to the dermatologist. A full year after my husband noticed the spot. A full year since he encouraged me to see the Dr. A full year for the cancer to make itself at home in my body. A full half year since I had my Princess.

The odd thing is, I'm really not a procrastionator. Not sure what made me wait for this appt. What an awful time to become a procrastionator.

The How And Why...

2010-07-02T16:59:00.000-05:00

Some people don't understand how someone "gets" Melanoma.There are lots of cancers out there with no reason for the cause. Melanoma is not one of them. We know the cause.

When I was in High School, I was a tanner. I loved tanning. Was probably even addicted to it at some point. I tanned for proms, dances, weddings, graduation, etc. I liked being tan. It made me feel skinner and gave me more confidence. I tanned easily, so in theory, I really didn't need to tan in a tanning bed all that often. But, I did. Once I had reached my "plateau" with the regular tanning beds I switched to the high powered tanning beds. I remember a couple times in high school I tanned at one place in the morning and another in the evening. Like I said, I was addicted.

During the summer months in High School I babysat. We went to the pool most days. I always put the sunscreen on them, but I never put the sunscreen on myself. Why? Because I wanted to be tan! Duh!

I wish I could say that after high school I quit tanning and became wiser. But, unfortunately that is not the case. I tanned maybe once or twice a month in college (all my money went to beer!) But, a couple months before I was diagnosed I purchased a tanning package. I actually HAD MELANOMA at the time! I had no idea, of course, but still. How stupid. I am a smart, well educated woman, I should have known better. At this point, I wasn't addicted, I just wanted to be tan. I tried the spray tan, but quite honestly, it was expensive. Tanning in a tanning bed was much "cheaper." Ha! I laugh as I type that!

We know what causes Melanoma. UVB rays. UVB rays come from the sun and tanning beds. Even sunscreens don't block all the rays. Of course they help, but they are not 100%. If you are going to use sunscreens please make sure they are at least 50 SPF. I use 85 or 100SPF on my family. I figure the higher SPF the better.

I am hoping that through my story I have opened the eyes of some people. Hopefully some of you have started using sunscreen religiously. Hopefully ALL of you have STOPPED using tanning beds. Hopefully some of you have visited your dermatologist at least ONCE this year. I would love to hear how my story has opened your eyes.

Bad Things Break In 3's

2010-06-29T22:04:00.000-05:00

At least they do in my world! My poor little laptop, that I LOVE, I might add, has been on it's last leg for some time now. But, I've made due. For my birthday/Mother's Day present I got a new mini laptop. And, I hate to say it, but I hate the damn thing! Everything is just way to small for me! It's perfect when I travel, but for everyone day use, it's not so usable. So, I saved my birthday money, and have been saving my tutoring money to purchase a new laptop. Luckily, I now have enough because my laptop DIED last week. Totally died. A virus attacked it and now it won't even turn back on. Grrrr! So, a new laptop was ordered.

Then, this weekend we were out of town, we came home to a rather warm fridge. However, the freezer was working ok, so we defrosted it, cleaned the back of the fridge and prayed it would start working again. But, of course, I'm not that lucky. This morning every thing that was in the fridge was bad. Luckily, we had moved most of the food to the freezer already, but the milk was nice and chunky and the OJ was rather warm. So, I got to go purchase a new fridge today. Two huge expenses that we were not planning on needing to make. Grrr!

So, now I am just sitting back and waiting for the third to happen. Pretty certain that it will. I'm just hoping its something small like my hairdryer!

I love FAT!

2010-06-25T16:05:00.000-05:00

I was able to get in to my dermatologist today. They were awesome and squeezed me in, in between appts. My derm went ahead and removed one of the nodules instead of performing a biopsy. He was UNABLE to find any pigmentation in the nodule. When he pulled the nodule out it was just one big FATTY mass!! It's called a Lipoma and they will come and go. Some will be painful, some will not. It has to be a side effect of the RO5. But, I don't care, they are NOT cancer and that is what matters!

It feels so great to finally have some good news! I was so happy that I started crying right there on the surgical table! God is good! Keep praying!

Vanderbilt appt

2010-06-24T21:53:00.000-05:00

Some things have changed since I last posted. My appts at Vanderbilt have been changed to next Thursday. Apparently that was the soonest they could get me in. Whatever. Like I've said before, they don't work with out of state patients very well. So, mom and I will leave next Wednesday and return next Friday.

I talked to the nurse at Vandy today and she has been talking to several other nurses in the Melanoma dept. Apparently, these is a possibility that these nodules may not be melanoma. Apparently, there are several patients that have been on RO5 who have developed nodules similiar to mine and they turned out not to be cancer, but some sort of side effect from the chemo. In that case I would go to the dermatologist to get the issue figured out. We already know, that if there is a side effect to be had, I will have it!

It's a sliver of hope, but at this point, I will take it! So, keep praying people!

New Trial

2010-06-22T20:39:00.000-05:00

Since I last updated, I have found a total of 8 nodules. Some have disappeared, but then another pops up. It's a never ending vicious cycle.

I seriously wish I had a dollar for every time I heard someone say "You can beat this." Because, honestly, I can't. Melanoma is not something you "beat". If you look at the statistics, only 10% survive past 5 years of diagnosis. Don't worry, I'm not giving up. Not by any means. I am just trying to make you all aware of how this awful disease works. Melanoma will come back. It will always come back. No matter what stage you catch it at, it will come back. It's just a matter of when. Mine was not caught early. Therefore, it had more time to spread to those lower layers of the skin and venture to the lymph nodes. It could have been prevented. If I had gone to the dermatolgoist earlier, all this could have been prevented. Now it may kill me. So, please, please get checked. Once a year go to your derm for a full skin check. It's worth it. Trust me! Melanoma takes around 10 years to surface. Which for me would have been in the high school years. I am paying for that beautiful tan I had each year before prom.

Ok, I am getting off my soapbox now. Point proven.

Anyway....I leave Sunday to head to Vanderbilt. They will biopsy at least one of the spots (I am hoping not all of them! Ouch!) If they come back as Melanoma I will discontinue the RO5. They would also like to do a CT scan to stage the progression, however, I am not so sure my insurance will cover that since I just had one a few weeks ago and I will have to have another before I start the next trial. So, Vandy is supposed to be checking with my insurance on that one.

I have already talked with my nurse at MD Anderson and there is currently a MEK trial that will be perfect for me. It is for patients that have already been on a Braf trial. What worries me is that it does not have as good a success rate as the RO5. And it only worked for a few months. But, what do I have to loose by trying a new drug? Nothing at this point.

If you have read, or watched the news, then you know about the "new" drug ipilimumab. It is actually an older trial, but they had to wait to publish the results in order to track survival ranges. Ipi only works on about 20% of the patients. However, it will probably be approved by the FDA by the end of the year.

So, at this time I am going to give the MEK trial a shot. MEK and BRAF trials only come along once in a while. If you can get in to them, then you go for it. My nurse at MDA did not think getting into the MEK trial down there would be a problem. I have to be off the RO5 for 10 days before I can start the MEK trial. That would make it July 9th. Since I will have to have a CT, MRI, labs, dr appt, blah, blah, blah, I will most likely wait until the following Monday to start anything. Or, since my Dr is there Thursdays, Fridays, and Mondays, they may bring me down on Th to get all that going, then see my Dr on Friday and start the trial then. Not sure at this point. We are waiting to schedule everything until we are certain that it is in fact Melanoma.

I know some of you are so sad by the news that the cancer is back. Please know, that the fight in me will never leave. Despite everything I have been through and continue to go through, I know that I am blessed. Cancer has taught me a lot. It has taught me a new appreciation for life, for my family, and for my friends. I take nothing for granted. But, boy does it piss me off when people do :)

More...

2010-06-13T22:24:00.000-05:00

So, I am constantly finding new lumps. These are different from any that I have discovered before. However, I am fairly certain they are melanoma. So, in theory this damn drug worked less than 2 months on me. I am pissed. I am angry. I am sad. I am scared.

But, I do have a plan. Which if you know me, you are not surprised to hear this. When the RO5 was working wonders on me, I was only taking it. No supplements, at all. I was then taken off the RO5 for a week and a half, then when I was restarted on it, it was at a lower dose, but I was also allowed to take my supplements. I have always wondered if the supplements were affecting the effectiveness. I have decided to stop all of my supplements, including the IVs of Vitamin C, for now. I have already emailed my nurse at MDA to give me a call. I am hoping to make an appt at MDA for the end of next week. If the RO5 begins working, then I will know that the supplements are affecting the uptake of the RO5. If new spots continue to pop up, then I will keep the appt at MDA and see what my oncologist there recommonds. If the spots begin shrinking, then I can cancel my appt at MDA and just discontinue the supplements.

I don't know what to expect. I really thought this would work longer. I really did. I am in complete shock that this is happening. The hard part about trial drugs is you just don't know what will make it work or how long it will work. Hopefully my nurse at MDA has some helpful suggestions.

Please continue to pray for me, and for my family. It hurts so bad, knowing that my kids may be forced to grow up without their mother. It's not fair. Not fair at all. Something has to work on this. Right?

Appt Today

2010-06-07T18:32:00.000-05:00

Today I had an appt at Vanderbilt. At this appt I had I had fasting labs, CT scan of the abdomon, chest, and pelvis and of the lower extremities, EKG, appt with my oncologist, and post RO5 labs.

The labs looked great. WBC, RBC, platelets, etc, are low, but not lower than last time.

The oncologist made a special point of having the radiologist read the CT scans before my Dr appt. I am so grateful that he understands how patients feel. The urgency you feel before an appt is crazy. I truly do like my Dr here at Vanderbilt. But, the care at Vanderbilt is nothing compared to MDA!

Anyway, the chest, abdomen, pelvis ct showed no new growth and MAJOR shrinkage of the former tumors!! WOOT WOOT! The tumor in my groin has shrank from 2.4cm to 8 mm (rough estimate). The tumor is my left hip has shrank from 1.5cm to 5mm (again rough estimate).

The lower extremities CT scan was not in at the time of my appt (GRRRR!) This is very frustrating because last Saturday I noticed a spot on the back of my left calf. It is under the skin, but it is long (about 8 mm) and hard. You can't see it, but you can feel it. I showed it to the Dr and he agreed that it is worrisome, but here is the dilema...

If we biopsy it and it comes back as melanoma I am OUT of the trial. We know that this medication is working. There is no reason that the cancer would be spreading since the other two tumors have shrunk so greatly. So for now, we are going to sit and wait. If it grows, I will return to Vanderbilt and a new plan will be put in place. But, for now, I am happy with waiting. A few weeks ago I had two of these lumps, one in each hip. A few days later they were gone. I don't know what they are, but it certainly is rather odd.

So, for now the plan is to stay on 720 mg (apparently I can't increase the dosage once I have gone down on it. Grrr for trial protocal!) and return to Vandy July 6th for labs and Dr appt.

Thank you all for your prayers. They are working!!

Doing Well..

2010-06-05T22:54:00.000-05:00

I just wanted to update and let you all know that I am actually doing quite well. The joint pain comes and goes, but no fevers, no rash, no headaches. Nothing, you know, other than the darn joint pain! But, it is getting better. I have also discovered that my skin is SUPER sun sensitive. I wore 100 SPF to the zoo the other day, plus put it on 3 times while I was there and I FRIED! You can tell the spots I missed or only hit once or twice. It hurt a little bit, but the worse part, is it looks really gross! And I tend to wear tank tops. A lot! Oh well. I did purchase a shirt sleeve UV shirt to wear the next time we take a zoo trip. Hopefully that will help!

On another note, my wonderful friend Amy designed an awesome float (for the parade that was in our town) to promote the website that she set up for me for donations, shirt orders, and info on the benefit that my friends are hosting to raise money for my family and me. Please be sure to check it out and let us know what you think! I will try to get post pictures posted soon of the float. You can also check them out on FB. She did a fab job!

I can't even begin to tell you how grateful I am to have such wonderful friends and family. People who are willing to donate their time and energy (not to mention money) to put together a benefit so time consuming and awesome warms my heart and makes me realize how very loved we are. So, thank you to everyone who has donated money, food, time, effort, and energy. And also thank you to everyone who has purchased a shirt. It is SO awesome to see people wearing the shirts around town! That kind of support brings tears to my eyes. I am blessed. Beyond measure.

Shirts...

2010-05-31T15:51:00.000-05:00

If you saw my post a few weeks ago, then you know that my friends are doing a benefit for me and my family on June 19th.
Part of the benefit includes selling shirts. We were able to place a HUGE order a few weeks ago. (Thank you everyone who ordered!!) I ordered a few extra and those were sold before we even got the shirts! We were going to wait to place another order until after the benefit, however, we have decided to go ahead and order a whole bunch of shirts now so that we actually have them AT the benefit.

If you are interested in purchasing a shirt, this is the time to do it. You can either send me an email at dolfinlvr101@yahoo.com or visit the website that my friends have set up for me at www.youngcancermommy.com

Shirts are available in children's sizes xs-xl and adult sizes xs-3x. They are available in pink and grey. The pink are a ladies cut so they run a little narrower.

Shirts are $15 each. If your shirt will need to be shipped, please add $2.

Thank you all for your support!

Much Better!

2010-05-27T13:44:00.000-05:00

This week has been much better. Thank goodness! Last week was tough! I have had some joint pain in my left shoulder, but it is manageable. Nothing like last week. If I can handle last week, I can handle almost anything! Yes, it was that bad!!

This week has been a fun week with the kids. I have been able to really enjoy them and we have had a lot of fun. We have played outside in the sprinkler, played downstairs, had a playdate, and just enjoyed each other. Life is good.

Thank you for thinking of us and praying for me. I can do this. I would just prefer to do it pain free!

Side Effects Suck!

2010-05-21T23:05:00.000-05:00

As predicted, the side effects have begun. Last Monday I woke with some joint pain. On Tuesday morning I woke in some major pain. Every single joint hurt. They hurt so bad I cried several times that morning. And the kids hadn't even woken up yet! It took me about 30 minutes to get myself ready and the kids breakfast on the table (about 20 minutes longer than normal, I might add!)

A little after 8 am I got the kids up, handed them their clothes and had them get dressed. Usually I help with this task, not because they can't do it themselves, but because I like to! I'm their mama and I guess I would really rather they didn't grow up to quickly!! Anyway, they got dressed, ate their breakfast and were actually quite good and helpful. Apparently it was obvious that mama was in some pain!

We left for school a bit earlier than normal because K had a field trip. Obviously, I wouldn't be going:( Boo!! I am so proud of him for being such a good kiddo though! And he told me he had a blast and can't wait to go back with Mommy, Daddy, and sissy. Of course, I promised that we would!

After I dropped off my little man, I dropped Sissy off at Mom's Day Out. I was supposed to have an appt for an IV of Vitamin C, but I didn't feel comfortable driving that far so I went home, propped my feet up and watched TV. All afternoon! Pretty sure I haven't done that since biochemotherapy! But, it was nice and certainly needed!

Around 1pm I had a dentist appt for a sore tooth. I thought I had pulled out a filling, apparently part of my tooth had broken off. At this point I will either have the tooth removed or a root canal. I have an appt on Monday with the oral surgeon to get their opinion. I know that chemo can wreck havoc on your teeth, and the frequent vomiting did not help matters I am sure! Just one more bump in the road. What the hell, why not right?!

On Wednesday I woke up sore, but manageable with pain meds. The kids were awesome and took great care of me all day. I did have to slide down the stairs on my bootie because the kids wanted to go down and play and there was no way I was able to get down the stairs walking!

On Thursday I woke up in major pain again. Every stinking joint hurt. But, I thought I would be ok. Morning is certainly the worst time of day for me. As the day goes on the pain lessens. However, this morning I was getting the kids breakfast ready and all the sudden I got really light headed, clamy, dizzy, had difficult breathing, and just felt plain weird. I sat down, waited a few minutes and called my friend to take me to the ER. After about 10 minutes the weirdness went away, so instead of the ER we ran to my local family physician's office.

In the meantime, my MIL is with the kids because K can't miss preschool, it's his last day! He HAS to go! So Grandma took him and took Ella to run some errands while one of my BFF's took me to the Dr.

The Dr ran a whole bunch of labs and really didn't find out much, other than my WBC are at a 5.6-YAY! my RBC are at a 3.3-YAY! My hemoglobin was ok and my platelets were ok! This is great. This means that the chemo, at this dosage anyway is not dropping my counts like it was on the higher dose!

My family physician gave me some new pain medicine that seems to be working quite well, without the sleepy side effect like the narcotics were giving me.

On Friday, the bottom of my feet were VERY sore still, and my right shoulder joint was causing me some major pain, but I spent most of the day with my feet elevated, used ActivOn quite frequently, took 4 ibuprofren every 8 hours and took the new pain meds on top of that. And so far, that little regimen has been working!

Hopefully the joint pain will subside. It is the most common side effect of this med so it is not surprising that I have it. I did start some new supplements that are supposed to eventually help, but it will take some time for those to kick in. But, needless to say, I will be extremely excited when they do!!

Trial Update

2010-05-16T20:58:00.000-05:00

Last Monday my mom and I went back to Nashville. I had labs and an appt with the Dr. One of the things I have noticed about Vanderbilt in comparsion to MD Anderson, is that they are not used to having patients from out of state. At MDA that is very common, apparently, at Vanderbilt that is not. Therefore, they do not really work with you in their scheduling. I am kind of at their mercy, which is quite annoying I must say! But, it is what it is. Nothing I can do about it.

Anyway, last Monday I had labs and an appt with the Dr. Luckily, my counts are going UP! Woo Hoo! When I was in the ER my white blood cells were down to a 1.5 and my red blood cells were at a 2, my potassium was low and my calcium was low. So, for some odd reason the RO5 is dropping my counts. That isn't typical, so they aren't quite sure why that is happening to me. I have been able to start back on my vitamins and that has certainly helped how I have felt. Which is nice! I do worry about how the supplements are affecting the effectiveness of the RO5. Since it is a new drug, there really aren't any statistics on that. I guess we will see.

On Monday it was decided that I would (re)start the RO5 at a lower dose. I am now taking 720 mg in the morning and 720 mg in the evening.

I have been a little hesistant in posting about this because I didn't want to jinx myself! Last time it seemed like the minute I posted that everything was going well, the side effects started! So, in fear of jinxing myself I am not going to say to much!

But, I will tell you that....the tumor I can feel in my groin is almost GONE!!! Can you believe it? For some odd reason I have some fluid build up above the tumor, the Dr wasn't worried about it so I guess I won't either. It doesn't hurt and it's "squishy" so I know it's not cancer. Chances are it's fluid build up from the rash that I had. My hands swelled really bad from the rash also. Luckily, that has gone away. The fluid in the groin has not for some reason.

I know some of you have been wondering what is going on. Sorry for the delay in posting. I just didn't want to jinx myself!!

Nashville Tennessee Flood 2010

2010-05-12T15:10:00.001-05:00

There hasn't been much coverage on the Nashville flood. Many people have no idea what it is like. To be there before, during, and after all of it happened, I can say, first hand, that I am heart broken.

Nashville is a beautiful a city. So many landmarks. So much history. And a lot of it is ruined. Most, fortunately, can be fixed. But it will take years and billions of dollars. The video above shows you a bit of the damage. You probably won't cry when you watch it, but I did. I know all those places. I have BEEN to all those places. Yes, we lost some stuff, but we are hopeful that it will be returned (soon, please!). But, what we los is nothing compared to what others have lost. We still have a nice, dry home to return to. Some people do not. Please pray for the city of Nashville. And for the people of Nashville. The city and the people are forever changed because of the disaster.

My husband took these pics from his phone while I was in the hospital. In the first picture, look towards the very back and that is our condo. At that time the water was to the first level.

Update on Angie

2010-05-08T11:46:00.000-05:00

I know many of you who read my blog, also read my dear friend Angie's blog. She has not been feeling all that well lately so I wanted to provide you will a brief update on her...

She was able to head home on Wednesday. The Ffn test that they did at the hospital was negative. She is still on meds to control the contractions and those are what is making her sick and giving her some massive headaches. Her cervix has not shortened anymore and is still at a 3. Today she is THIRTY TWO weeks pregnant! Woo Hoo! Pretty sure NONE of her doctors thought she would make it this far, but her and Cullen and still holding tight. I am so proud of her! According to the ultrasound Cullen is currently weighing 5 lbs 4 oz. Which, is HUGE compared to the twins! Isn't that amazing!

Obviously, Angie will go way more in depth once she is feeling better. I'll be honest, I know NOTHING about preterm labor, other than what I have learned through her. My babies NEVER wanted to leave my tummy! Please, please keep praying for Angie and Cullen. The power of prayer has been an amazing thing.

The Rest of the Story

2010-05-07T16:46:00.000-05:00

On Sunday night in the ER they took lots of blood. Of course, they had a hard time finding a vein. My poor little veins have been poked so much that they are rebelling at this point! She tried one in my forearm but it quit giving blood. Then she went to a vein in the crick of my elbow, it gave so much blood that it started spraying everywhere. She was actually afraid she hit an artery. Nice. Story of my life, right?! But, they got the blood drawn, I gave a urine sample, which they spilt all over the counter. Definitley the high point of the ER visit :)

So, around 12:30 AM I was taken to the ER observation unit. Much quieter and the beds were much more comfortable. Somewhere around 4am I was told that my potassium was low so I was given two huge glasses of potassium to drink. It was BAD. I mean really bad. Worse than aspargus juice! Worse than the barium I have to drink before a CT scan. It was bad. Even my stomach agreed that it was bad because about an hour later it all came back up! Lovely. It was even worse the second time! Since I lost it all they had me take one pill, and I received 3 bags via IV. They mixed it with saline so it really didn't sting until the saline ran out on the third round.

At this time my fever was sitting still around 101. I had stopped shaking and was sweating profusely. Lovely. I was given more Tylenol and water and that seemed to eventually help.

Keep in mind, this whole time my husband and the kids have NOTHING. ALL of their stuff is in the condo. Everything. Luckily, my husband is a roll with the punches kind of guy, and he worked through it seemlessly. I would have been a complete, and utter mess!

Around 10am I was given a bag of calcium and my husband and the kids came for a visit. Still wearing the same clothes from the day before. No brushed teeth or hair. But, I'll be honest, that could have happened with their stuff! But, honestly, they were happy to see me, and I was happy to see them, so that's all that mattered. After about 45 minutes in that tiny little room they left to go buy supplies and find a new hotel.

I turned on the news. Bad idea! Nashville looked awful. The Opryland hotel looked like something from the movie TItanic. Our condo was still underwater. Tons of people had lost everything. Who would have thought this would happen in Nashville, TN? It's all so sad.

Around 3pm I was released from the hospital with the understanding that I would stop the RO5 until the rash cleared up AND I had met with my Dr. I was also started on an antibiotic "just to be safe."

I was released from the hospital on Monday. My dermatologist appt wasnt until Thursday and my oncology appt is not scheduled until Monday, May 10th.

We had 2 outfits per kid (Ella requires several outfit changes during the day because she changes her mind!) But, I really feel we have made the best out of the situation. We decided to drive to Chattanooga on Tuesday to take the kids to the Tennessee Aquarium and on Wednesday we drove back to Nashville to go to the Children's Science Center. I am very proud of my children and my husband. They have been very strong through all of this and I am grateful for that. I don't do well with stress. It's just me. Take it how you will. But, my kids and husband were awesome and resiliant.

Here is where God was watching over us. On Sunday we arrived at the condo around 2:30. While my husband was checking in a nurse at the CRC (Clincial Research Center) called and said I did not need to come in that day because of the weather. They would just push everything back a day. I debated waiting until Monday to head in, but decided to try to get there on Sunday. If we would have waited to head in until Monday, not only would we have lost our stuff, we also would have lost our vehicle. And would have been one of those families being taken out my life boat. So, even though this has not been the dream vacation, there are lots of ways it could have been worse.

The Trip From H-E-double hockey sticks

2010-05-05T10:25:00.000-05:00

Saturday May 1- We left the house at 9am with the kids in tow. The kids did wonderful on the long car ride to TN. We stopped several times to eat and let the kids run. But, seriously, they were an absolute dream. About 7pm they were done in the car so we stopped at a little town in IL and got a hotel room. At this point it was raining pretty hard, but we didn't think about it.

Sunday May 2-We got up, ate some breakfast and headed into Nashville. It was still raining. We got into Nashville around 2:30pm and we straight to our condo. Water was EVERYWHERE. The parking lot to the mall near our hotel was under water. The trailers in the parking lot were 3/4 covered with water. But our resort was about a mile from there so we figured we would be ok. We arrived at the resort and checked in. We were on the 3rd floor.

Cody unloaded EVERYTHING from the car so we could get it a little more organized. By this time it is just pouring outside. Around 5pm I made us some dinner and then we left to take me to the hospital to begin the next portion of the trial.

We had to take a very scenic route to the hospital but we made it there a little bit before 6. I was checked into a room and the kids and daddy hung out for a bit. Right before 7 they left to head back to the condo.

Around 8 the nurse came in to get my vitals. I should tell you that for about the last week the RO5 has been giving me some major side effects. On Saturday I noticed a rash that has since spread to cover me from shoulders to ankles. I have also been getting the rigors. I'll be super cold and shake for several hours and then I sweat for about an hour and then I'm ok. About 10 hours later I'll do it all over again. Not fun. I have also been spiking fevers of around 100.

So, when she came in to take my temp I was freezing and shaking. She took my temp and it was 102.6. I told her not to worry about it and she left. At this time my husband called and said that they couldn't get to our condo. The road was blocked and the condo was under water. All of their belongings were in the condo. Luckily, our stuff was not under water but the 1st and 2nd floors were.

Soon, another nurse came in and said they were taking me to the ER. I got to the ER and was taken back immediately. Vitals were taken and I waited and waited. Eventually, around 1am it was decided that I would be admitted to the observation unit and hopefully dismissed the next day...

(to be continued!)

Fundraiser

2010-04-29T14:06:00.008-05:00

Thanks Amy for fixing the picture for me!!

My friends here in our town are doing a fundraiser for me and my family to help with medical expenses. On June 19th, at our my friends will be hosting a mini carnival with games and bounce houses for the kids, a band, and a spaghetti supper. They will also be selling shirts.

The front has a black ribbon and says, “Keep Fighting Heather” and the back says, “Hey Cancer, You Picked The Wrong Girlfriend!”
Shirts are available in sizes XS child-3X adult. They are $15 a piece. All proceeds will go into the Cancer fund.

If we get 50 orders we get the shirts at a huge discount, so order away, PLEASE! If you would like to order one, you may email me at dolfinlvr101@yahoo.com or leave me a comment on here. We can take paypal, cash, or check. Thank you in advance for your help in fighting this nasty disease.

*Just so you know, I think the kids sizes run a little small. K usually wears a 5T or a childs small, and I ordered him a child's medium. E usually wears a size 3T and I ordered her a size small. Hope that helps!

Side Effect

2010-04-26T21:43:00.000-05:00

Another pretty common side effect with the RO5 drug is joint pain. Unfortunately, that lovely side effect started last night. The joint in my left elbow is killing me! Getting dressed, doing my hair, and holding my little Princess has proven quite difficult today. I've taken some Tylenol and that has helped. I'm not sure what to do to help or, better yet, fix this little problem. Any suggestions?

Don't get me wrong, this most definitely isn't as bad as the biochemotherapy. If you saw me during that time then you know how bad it was! This is doable. I will survive. But, it's certainly not all that enjoyable!

A Disappearing Act

2010-04-25T22:26:00.000-05:00

The tumor in my lymph node continues to get smaller and smaller. I can't feel the tumor in my hip, so I'm not sure what is going on with it, but I am assuming it is doing the same thing as the other tumor and disappearing also!

My guess is, that my the time I return to Vanderbilt for my next CT scan, which will be the beginning of June, that both tumors will almost be completely gone. How awesome is that!

I will stay on the RO5 until it quits working. Most people get a year. I'll take it! By that time other drugs could be out there that I can try. Right now MD Anderson is running a trial to see if patients who have been on one B-raf inhibitor can have success when placed on another. Obviously, I respond quite well to B-raf inhibitors so I am hopeful that they will have some success with that.

In order to get rid of my headache I decided to give a Neti Pot a try. It made a HUGE difference! My headache finally went away. Yay! This means that so far I have only had a few side effects! That's a welcome change!

Side effects:
The other night I had a rash on my chest. But, by the time I woke up it was gone. (could have been from the kiwi!)

And, don't laugh, but my hair hurts. Yes, my hair. It isn't an unfamiliar feeling. In fact, it felt like this all during biochemotherapy. However, during that I lost a lot of hair. So far, I haven't lost any hair. (knock on wood!) I just wish this odd feeling would go away! But, for the record, I'm not complaining. I am grateful I have hair and that I feel so good.

So, no complaints here. Life is good and I am grateful:)

Exciting News!

2010-04-23T20:55:00.000-05:00

As you know, Tuesday I started the magic RO5 pills. Statistics said that it will work within a week or two. Apparently I am ahead of the statistics, because the tumor that I can feel is half the size that it was on Monday! How awesome is that!

AND, so far I haven't really exhibited any side effects. Which is quite nice, I might add!

I have discovered that I am a nervous pill taker. I am constantly looking at the clock to make sure I am not late taking the pills. I take the pills at 8:30 am and 8:30 pm. However, I find myself looking at the clock nervously in the middle of the afternoon. Ugh! Totally sounds like me doesn't it!

On another note, I decided to add kiwis to my fruit smoothies, and have since discovered that I am allergic to kiwis. Nice! I actually added them to one smoothie before we left, but thought maybe that was just how your lips and face felt after you eat kiwis. Apparently not. Oops!

Keep praying! It is working!

The Drugs..

2010-04-21T13:55:00.000-05:00

Tuesday (4/20/10) I was started on the RO5. I take 4 pills in the morning and 4 pills in the evening. I need to take each dose about 12 hours apart. So far, so good. I do have a headache but I think that is more sinus related than chemo related.

The most common side effect so far has been a rash. So, I need to be aware of anything going on with my skin and get to the dermatologist pronto.

My next hospital stay is scheduled for May 2nd. We have decided that we will bring the kids on this trip. We are going to make it a fun little vacation for the kids. Nashville is a beautiful place and there are tons of things to do as a family there. I am super excited to have the kids with me! I already have our schedule all planned out:)

Memories...

2010-04-15T13:06:00.001-05:00

Some things I want to remember from this Nashville trip...

*The drive to the airport took FOR.EV.ER
*We switched cars with dad ~~because my car is nicer, he is to lazy to switch the car seats,~~ he insists that the kids ride better in my car.
*My dads car has a possessed dashboard. At one point my husband actually wanted to shoot the dashboard. I just ~~pounded it with my fist a lot~~ turned the radio up.
*Before we went to the hotel I wanted to find a grocery store. So I looked on my trusty GPS. I am now convinced that my trusty GPS is possessed also.
*At the hotel, we discovered that we would be sleeping together in the smallest bed I have ever seen. Queen? My ass!
*At the hospital, we parked and were walking into the building and my husband ran into a parked car. I laughed for 30 minutes. I am laughing now just thinking about it.
*Tuesday was one of the longest days of my life. We arrived at 9 am and did not leave until 7 pm. I was exhausted.
*The weather in TN is beautiful. Apparently, KS has all the wind. Because TN has none!
*The hospital forgot to bring me supper last night.
*Come to find out, I was better off without it! It was awful!
*Last night we snuck out of the hospital to go for a walk. It was beautiful out.
*We went across the street to Wendy's and I enjoyed a baked potato. It was much better!
*I was able to talk to both kids on the phone last night and it was pure bliss. I cried when they told me Night Night and I love you.
*I miss my kids. A lot.
*I started the trial today. So far, so good. Just a little groggy.
*Pretty sure I am running out of blood though!
*My husband left at 3:30 this morning to catch a flight to North Dakota for work. He will be back late tonight.
*Luckily, my nurse is in here CONSTANTLY to take blood. I always have her to talk to!
*The nurses are beyond kind.
*I still miss my kids...

I AM IN!!

2010-04-14T21:10:00.000-05:00

In case you haven't heard (via facebook) I "officially" qualified for the trial. Up until this morning we weren't quite sure. It all depended on how my labs looked. Apparently, they looked ok because I am currently sitting in the hospital.

Tomorrow morning I will receive my combination of cocktail drugs and will have LOTS of blood drawn throughout the day. And I truly mean lots!

They will do blood draws (after I am given the 5 cocktail drugs) at 15 minutes, 30 minutes, 45 minutes, 1 hour, 2 hours, up to 24 hours. I will then be released to head to the hotel.

I will have to return to the hospital every 24 hours to have blood draws performed.

On Day 7 (next Tuesday) I will have a blood draw, meet with the Dr and start the actual RO5 drug. I can continue on the RO5 indefiniately. As long as it is working, I can be on it. According to the reports, if it is working on me, I should notice the tumors shrinking within 1-2 weeks.

According to the tech that read my CT scan, the only tumor that I have is the one in my groin. It is currently measuring 2.1 cm by 2.8 cm. However, we know for a fact that I also have a tumor in my left hip. It is my original tumor. That was not in the report. Not quite sure what is going on there. The Dr is going to be looking at the actual CT scan and I should know more next week when we meet with him. Just a little annoyed that I pay LOTS of money to have a CT scan done and it's not even accurate! This also happened back home. At this point, the only place I truly trust to have a scan done is MD Anderson. They have the best of everything!

Here's a double bonus...we get to head home Tuesday evening instead of Wednesday! Woo hoo! I miss my babies so, so much. They are being so good for grandma and grandpa. I am so proud of them. I am a lucky mama.

Thank you all for your prayers. They have paid off!

Today is the day...

2010-04-12T08:39:00.014-05:00

Today we leave for Vanderbilt. We have a very late flight out of KC. I wanted to be able to spend as much time with the kids as I possibly could.

I went back and looked and last year I started biochemotherapy on April 13th. This year I will start chemotherapy on April 14th. Stupid how that works out isn't it!

On Tuesday I will have labs and scans.

On Wednesday morning I will be admitted to the hospital. I will be started on one of the cocktail dugs.

On Friday afternoon I will check out of the hospital and head to a hotel (hopefully a free one!)

Friday-Tuesday we will return to the cancer center lab to have blood drawn. I have to have it done every 24 hours.

Tuesday I will be started on the RO5. I will take 4 pills in the morning and 4 pills in the evening in the comfort of my own home.

On Wednesday early afternoon we will fly home.

Ugh! What a schedule huh!

I have some mixed feelings about all of this. I am very anxious to get this started. I am ready for it to start killing the cancer. However, I am not at all anxious about leaving my kids are that many days. But, I don't really have any other options. This is the best thing for all of us. I am curious to see how this trial will work and how the schedule will work, and how I will feel. I am hoping that maybe, just maybe, the next time we head down to TN that we can bring the kids. I don't think the first time is the best time to do that.

Keep praying that this will work. We still have lots of options. But the longer we wait, the more it spreads. Which, of course, is not good. Think of us this week as we are beginning yet another battle with this cancer.

It's Started...

2010-04-07T21:39:00.001-05:00

Yesterday I started the diet for the trial. I truly thought the Diet Pepsi would be the hardest, but stopping all the supplements is proving to be the most difficult. I didn't realize how much better and more energized the supplements made me feel. I suppose it could be the Diet Pepsi, but I am doubting it!

Within the past few weeks I have really had to think about what goes in my mouth. I have never had to do that before. I have never dieted. I have never needed to. And this is a diet. Not to necessarily lose weight (which I have, BTW) but improve my well being. Improve my chances of fighting off this cancer. And I truly believe that the new diet, the supplements, and the Vitamin C IV have made a world of difference. Maybe not in fighting off the cancer, but in the very least, in my quality of life. I have (ok before yesterday, that is!) never felt better. I had ENERGY! It was awesome. I hadn't felt that great since before I was diagnosed. You all have no idea how great it was to just feel "normal."

Yes, the Bright Spot Center was expensive. Yes, some of it was kind of silly. But, was it worth it? Absolutely. You can't put a price on energy and your quality of life. No price. Spending time with my kids, and having the energy to play and take them places has been worth every single penny!

However, now I can't be on ANY of that. I knew the supplements were making a difference, I just didn't realize how much! Boo!!

On Tuesday, I had an appt with my Dr at the Center. We went over my lab tests. The ONLY vitamin that I was "satisfactory" in was Folic Acid. Odd, right? I had (next to) no Vitamin C or Vitamin D and everything else was pretty low. Since I can't take any supplements right now, he gave me a list of some foods that to eat that will increase my Vitamin intake. Some I can eat, some I can't. But it gives me a good starting point.

Right now I know the cancer is spreading. I have found several more masses and the lymph node in my groin is HUGE! At this point there is nothing I can do about it. Nothing, but pray. So if you all would mind praying a little harder this week that would be fabulous! I have also had an awful cough lately. I am praying, praying, praying that it is just sinus drainage. I have awful allergies and since I can't take anything I just have to blow my nose alot!

On Monday we leave for Vanderbilt. I am so grateful that my children have two sets of wonderful grandparents. They love them, they love us, and they would do anything to help us out. Huge thank yous to all of you! We love you very much.

No No's For Mama...

2010-04-02T23:07:00.000-05:00

Below is a list of food and drinks that I will not be allowed to have from April 5th- middle of May. Can someone please tell me what the hell I am supposed to eat!!

Some will not be a problem.

Some I don't even know what the hell they are!

Some will be very, very difficult! (Like the caffeine! How can a mom survive without caffeine!!)

*Alcoholic Beverages
*Teas containing caffeine
*Caffeinated beverages
*Grapefruits or grapefruit juice
*Chocolate
*Kohlrabi
*Apples or Apple juice
*Brussel sprouts
*Cranberries or cranberry juice
*Mustard
*Energy drinks
*Seville oranges or Seville OJ
*Cauliflower
*Marmalade made from cranberries, grapefruit, apples or Seville oranges
*Cabbage
*Chinese cabbage
*Tobacco products
*Kale
*Horseradish
*Canola oil
*Broccoli
*Charbroiled Foods
*Watercress

*Corn or corn products
*Grapes, seedless
*Chocolate
*Rice
*Chicken
*Soybean or soybean oil
*Nutrasweet

If anyone has any yummy recipes that do not involve any of the above ingredients, please share! I am having a very difficult time finding recipes that work. Some of the items that you have to add to the recipes contain things like soybean oil or corn syrup. Ugh!

I will admit though, with the combination of the diet, Vitamin C IV, and vitamins I am taking at home, I have never felt better. Other than today (which I am contributing to the fact that I only had 5-6 hours of sleep) I have had lots of energy, I have been able to play and actually keep up with Ella!, and have been in a good mood. I love it!

Overall, the appointment at Bright Spot has been worth it. You can't put a price on feeling good and having energy!

I am really struggling with the meals though. We end up having two separate meals. Daddy and the kids eat one meal and I have to eat another. Blah! We enjoy eating as a family and even though we still eat together, it's just a little odd when they are eating one thing and I am eating another.

So, any tasty recipes would be so greatly appreciated. You can email me at cancersucksmonkeyballs@yahoo.com

Hook A Girl Up

2010-04-01T21:14:00.001-05:00

Something I loved about having my other blog open was all the readers I had. I loved that all of you cared so much about me and my family. You have no idea how much that means to, not only me, but my husband.

So many of you have become wonderful friends. When I first started blogging it was mainly for my friends and family that lived far away. It has become so much more for me. It has become a journal. A place were I can document and bitch. Who knew that this would become therapy for me?! I have come to love and care about all of you. One of you has become one of my BFF's that I am constantly texting, worrying about, and thinking of.

Several have asked why I closed my other blog. I don't really have the desire to go in to it. I will just say it is something my husband and I have discussed many, many times. I do feel much safer, for my kids sake. However, I am a little pissed that I had to do it. But, it is what it is, and that is that.

Now, I need a little help from you guys. If you have a blog, would you mind adding this new cancer blog to your blogroll? And, would you mind becoming a follower if you haven't already? Thank you so much. You guys rock!!

Stupid Cancer

2010-03-27T14:24:00.000-05:00

Dear Cancer,
Have I told you lately how much I hate you? I mean I REALLY hate you.

You are alive and well with in my body and there's not a damn thing I can do about it. I am so frustrateed by you. The lymph node in my groin is really, really painful. A couple of days I had no pain. However, apparently you have decided that being quiet and painfree what just not a enough.

I am so frustrated with this trial. I am so scared that you have attached to other parts of my body. Other parts that I just don't know about. I am tempted to go to my surgeon and have him cut you out and just not tell anybody. (Telling could ruin my chance at the trial) I just don't know what is the right thing to do. Nobody does.

However, I am pretty sure that letting you float around in there and grow is NOT the right decision. I just don't have many options for killing you. I know that makes you happy, cancer. However, it just pisses me off. And it makes me more determined to kick your ass.

So, in conclusion, I realize that you throughly enjoy my body, and while I know it is pretty awesome (hee hee), I do not care much for you inside of my body. So, for now I will do everything that I can on my end to kill you. In the meantime you had better get ready, because once I get this RO5 in my system, your ass is mine!

Sincerely,
Cancer Mommy

Trial Appointments

2010-03-26T13:24:00.000-05:00

I FINALLY received news on the trial at Vanderbilt. After numerous phone calls daily, they have finally scheduled my appointments. I am pretty sure they were just sick of me calling. At this point, whatever works. I have no issues with being a huge pain in the ass if it saves my life!

So, April 12th we will leave for Vanderbilt.

April 13th I will have scans, labs and appointments. At this point I STILL do not "officially" qualify. My labs have to come back ok in order for me to qualify. At this time I know that my white blood cells and red blood cells are low. All my other counts are in normal range. At the Bright Spot they started me on something (that tastes AWFUL!) to increase my WBC and RBC. Pray that it works.

April 14th I will be hospitalized and will be started on one of the cocktail drugs. Over the next few days I will remain in the hospital and have labs drawn about every 15 minutes. After three days we will head to a hotel (hopefully the Hope House which is free for chemo patients-pray!) and we will stay there 5 more nights. I have to head in for labs for those days at the same time every day.

April 20th I will be started on the RO5 drug. I will take 4 pills in the morning and 4 pills in the evening every day for as long as it works.

May 2nd-18 days later-we will return to Vanderbilt and start the whole process over only this time I will also have the RO5 drug along with the drug cocktails.

That part of the trial will end around May 8th. I will return home and remain on the RO5 as long as it is working.

22-30 days following the first dosage of RO5 I will have to return to Vanderbilt for more scans and derm check up.

Right now the cancer has spread. I know it has. The lymph node in my left groin is enlarged and last night I found a mass in my left chest. Of course I don't know for certain that either of these are cancer, but, trust me, they are. Cancer just has a different feel. It doesn't hurt, persay, but it is just an annoying, constant pain. I am sure that as the tumors get larger they will really hurt. Let's pray that we don't get to that point.

At this time we are still trying to decide whether we should fly or drive. A dear friend has given us several free flights through Southwest and I have several coupons for rental cars. Cost wise it may be about the same. However, for us to drive to Nashville it will take about 11 1/2 hours. That's a lot of time and a lot of miles on my car! The upside is we have the freedom to head home sooner than we would with flights. Decisions, decisions.

Bright Spot Appointment

2010-03-25T16:39:00.000-05:00

**These are solely my opinions, based on my experience. Don't Judge Me!**

This week I have had numerous appointments at the holistic center near our town called The Bright Spot For Health.

It has been an interesting experience to say the least. Some (most) of the information has been very helpful. However, some has been, well, a huge waste of money! But, whatev. It grows on trees here in KS:)

My first day, Monday, I met with the Dr, had labs, completed the Herrmann Brain Dominance Profile (stupid!), ate lunch (that was fit for a rabbit!), threw some clay at a wooden wall (waste of $!) physical with another Dr (whom I loved), watched a video in a library that smelled like a dirty old lady, had an IV of 15 grams of Vitamin C and watched another video (that put me to sleep!)

The Herrmaan Brain Dominance Profile gave me information as to which side of the brain I use the majority of the time and what character traits I possess. The test showed that I am a Detailed, Controlled, Dominate person who thrives on organization and planning. DUH! I did NOT need a test to tell me this! I KNOW this. I also had to draw a stupid picture. Whatev.

The next exercise took me outside where I was to imagine things that made me angry and upset while I was throwing the clay pigions. Could of done that at home. Moving on...

I had a physical with the female Dr at the center and I really liked her. She was able to answer any questions I had and she was very kind and understanding.

The most helpful activities that I participated in on the first day was the labs and IV of Vitamin C. There has been lots of studies on cancer and Vit C and how it can help boost up your immune system to fight off cancer.

On Tuesday I had a diet consulation with the Dr I meet with originally and an IV of 25 G of Vitamin C.

The diet consulation was VERY helpful. When they drew labs on Monday one of the tests that they did was a cytotoxic test. The Cytotoxic test is one in which the white cells from your blood are separated and mixed with antigens (different foods in my case) and studied microscopically. A postive response means your blood cells weere damaged when placed in contact with the antigen being tested. The more positive the rating, the greater the degree of sensitivity your blood cells demonstrate in relation to the substance.

The scale they rate them on is from 0 (no sensitivity) to 4 (high sensitivity).

I had two items score a 1-onions and tomatoes.

I had quite a few items score a 2 (pretty much everything that I enjoy!)
**Grapes (including wine!), corn (including anything using corn syrup or corn oil), chocolate (shoot me now!), rice, chicken, soybean (including soybean oil and soy protein), nutrasweet (including D. Pepsi-now you can really shoot me!)

I did not have any items that were a three or a four.

So, what does this mean? I need to eliminate onions and tomatoes for 2 weeks and then add them in slowly.

I need to eliminate all of the items that I scored a 2 on for 2 months and then add them back in slowly.

So far I have been successful in eliminating all of the items from my diet except for Diet Pepsi. I have decided that the test was wrong in that instance! Hey, I have to have a little fun, right?!

Corn has been the hardest to eliminate. I never realized how many items contained corn or corn oil. That has been a little difficult.

But, what does this really mean? The cytotoxic test tells us that instead of exerting energy to attack cancer cells, my blood cells are attacking the food that I am eating. No wonder I can't fight off this cancer!

They also tested my urine to see how much spill over of Vitamin C I have in my urine. I had NONE! That is not good. Any extra Vitamin C that you are taking should be excretated in your urine. You really can't have "to much" Vitamin C. So, that is another reason I will be doing the IV Vitamin C twice a week.

Another test they performed that I probably could have done with out was some sort of auro testing. We did a pre Vitamin C auro test and a post Vitamin C auro test. There was definitely a difference, however, I am not really sure what that tells us.

I will get the results of the rest of my labs in a couple of weeks. In the meantime I have been placed on a ton of vitamins.

Overall, I am glad that I did this. The food testing, the vitamin C IV, and the lab results have made it worth it. Some of my questions about my body have been answered, finally! Now I know why my body has been failing me and I finally know some things that I can do to fix it.

This cancer better back it up because here I come:)

Easing my Fears

2010-03-21T14:34:00.000-05:00

For the last few days I have been dizzy, lightheaded, and nauseaus. I'm not quite sure why. But, of course, when I feel off I start researching. Which is never good. The more I read, the more I cried. And cried.

Finally, this morning I woke up and was getting ready for church and I just couldn't focus. I called my mom and bawled. Apparently, she couldn't really understand me so she asked to talk to my husband. Her directions were to head to the ER. So, I called a friend to watch the kids and off we went. (Thank you soooo much C & M, don't know what we would have done without you!)

At the ER, they got me in right away. After explaining my fears and concerns they set up a CT scan of my brain. I had the results in minutes.

It was CLEAR! Oh thank the Lord! I cried again hearing the news.

However, it doesn't explain my dizziness. So, for now we are chalking the dizziness up to the antiboitic I am on for my swollen lymph node. (Which makes sense, all of the symptoms I have are side effects of the antibiotic.) I will be on the antibiotic for 7 more days. Hopefully I can make it through! I debated stopping it, but if I stop it now I will always wonder if the lymph node is an infection or cancer. At least this way I will know for sure.

Keep praying!

Vanderbilt Info

2010-03-18T21:54:00.000-05:00

While we were on our fabulous cruise, I called the trial coordinator and found out that, based on my genome sequence I qualify for the trial. Yay, one hurdle down!

But, if you know me, you know there has to be something negative in there, right? As you know, I am pretty in tune to what happens on the outside of my body. I was checking out my lymph nodes Wednesday and discovered that a lymph nodes in my left groin was quite swollen. The only way to know for sure if it is cancer is to have a biopsy done. My family physician put me on antibotic. I am going to make an appt with my surgeon for the end of next week. In the meantime, I will take the antibotic. If the mass shrinks then I will know it is just an infection. If it doesn't shrink then I will know it's cancer. Getting a biopsy done won't change anything. But, it will help ease my fears.

Are you ready for some more GOOD news? Another research coordinator called this evening and guess what...my B-raf test came back positive!! So, I have the correct genome and I have the b-raf gene mutation (which we already knew I had, they just had to confirm it).

Now, it's just more of the waiting game. Ugh!! If nothing else, cancer has made me a more patient person at least! The coordinator will call me early next week with all of the appts that I have to go to. These include, but (of course) are not limited to... MRI of the brain, CT scan, ECG, full dermatological check up, and labs.

If those all come back like I want them to, (it will take about 4 days to get those results) we will schedule my time to start the trial.

I have some mixed feelings. I truly feel this is the best trial for me. However, waiting another 2 weeks is going to drive me nuts! We know it's alive and spreading in there. I just want to get it out.

Luckily, I have been pretty busy. To busy to really stress out about all of this. Busy with traveling, busy with my family and friends, and busy worrying about her!

Thanks for reading and praying

No News

2010-03-12T23:16:00.000-06:00

I still haven't heard from Vanderbilt. The waiting is the worst, I tell ya!

I did call on Thursday to see if they had heard anything, but they had not. She is expecting to hear the results either Monday or Tuesday. And, of course, we won't be here!

So, I gave the nurse my mom's cell phone number and they are going to tell her the results. My folks will have the monkeys so I will be calling every evening to check on them, so she will be able to tell me the results. Unfortunately, those phone calls will be short and sweet. Which, if you know my mother and I, you know that this will be a bit of a challenge. However, at $2 a minute, I'll be forced to make it quick!

I will not be able to update on here or Facebook until Thursday. However, if you really, really want to know you can check my mom's Facebook page (email me if you would like to add her as a friend). I have given her permission to post it, but only after she has told me the results.

Please keep praying. You have no idea how bad I want to be in this trial. There are other options, of course, but for some reason I just feel like this is the one I should be in. Hopefully, the Man above agrees with me. We will know soon. (Thanks Goodness!)

Death and Dying...

2010-03-11T18:08:00.001-06:00

...are two things that I think about a lot. Unfortunately. I don't want to think about it. And honestly, the thought doesn't consume me during the day. But, at night, while I lay in bed, it's all I can think of. I think about our day. I think about any regrets I have and what I would have done differently. I think about the memorable moments and what my kids will remember about today.

Something I do with the kids everyday is ask them to tell me what their favorite thing was about the previous day. Sometimes it's something silly like, we had hot dogs for lunch. And sometimes it's something fun, like we went to the zoo. Either way, I love hearing it. I love that they remember something that we did together.

I am working so, so hard to build these wonderful memories, because, let's be honest, we don't know how much time I have. But, we don't know how much time anyone has. Anything could happen to any one of us at any given time. Scary, right?!

The other morning one of my good friends that I talked about in this post (PS the lump came back as a fatty tumor not cancerous btw!) was getting ready for a funeral at our church. When she told her 4 year old daughter that she had to go to a funeral, her 4 year old starting bawling. When her mommy asked her why, she told her she thought it was because I had died. When my friend explained it wasn't me, she calmed down, but the sad part is, is that she can't say that won't ever happen. Sucks, right?!

I don't know about you guys but I am so over this cancer thing. I am just sick of it. I am sick of researching. I am sick of telling my story. I am sick of thinking about cancer. I am sick of stressing out. I am just sick of it all. After fighting for almost 2 years I am getting a little irritated. Please pray that this trial at Vanderbilt will work out. I have many options, but this will probably be my best bet. Keep those fingers and toes crossed.

The point of this post was to help some of you remember that life is truly to short. The next time your kid does something silly and you are at the end of your rope, remember me, remember my kids, but most importantly, remember your kids. Life is just to short.The naughty behavior will pass. I promise.

I would love to know what you do to make each day memorable for your kids.

Trial Info

2010-03-11T18:07:00.001-06:00

I know some of you have been waiting for the information on the trial and I guess I have just been avoiding it. I'm kind of sick of talking it! But, because I love you all so much I will tell you:)

When we were at Vanderbilt last week I signed the informed consent and had some blood drawn. The week prior my tissue block from my very first surgery was sent to them. They will take the tissue block and check it to make sure that I do, in fact, have the B-raf gene mutation. MDA did this, however, the drug company must perform their own test. The blood draw was to see if I have have a certain genome in my blood that the medication needs to follow. These tests will take about 2 weeks to get back.

If both tests come back like we want them to, I will head back down to Vanderbilt for more testing. Not sure what they are looking for on this one, but the results for those will come back in 2 weeks also.

If THOSE tests come back like we want them to, I will start a very strict diet. No caffeine, no vitamins, no kale, no broccili, no apple juice no alcohol, blah, blah, blah. I have to be on this week for one week prior to beginning the trial. Honestly, I will probably start the diet the week before we find out the results so that I can start the trial as soon as possible.

We will head to Nashville the day before the trial starts and I will be hospitalized. Since this trial is taken in conjunction with a cocktail drug I have to be in the hospital for the cocktails to be given to me.

The cocktail drugs are:

*caffeine

*warfarin (blood thinner)

*omeprazole (used to treat stomach ulcers)

*dextromethorphan (in cough meds)

*midazolam (general anesthetic drug)

The first cycle, evening before day 1 to day 5, I will be given single oral doses of each of the interaction drugs. I will be hospitalized and blood will be drawn about every 15 minutes on day -1 to day 3. After that I will be released from the hospital and will return every 24 hours for labs.

The second cycle, day 6 to day 19, oral does of RO5 will be given. I can be home for this!! YIPPEE!!:) I will take 4 pills in the morning and 4 pills in the evening. These have to be taken at the same time every day and I will have to keep a journal.

(I am SO happy that I can be home in the middle of all this)

The third cycle, day 20 to day 25, I will return to Vanderbilt and will be hospitalizezd, I will be given oral doses of RO5 and the cocktail drugs. (the first cycle all over again)

Following the third cycle my diet can return to normal. In other words, hello Diet Pepsi:)

The remaining cycles, day 26 until I stop taking the study drug, I will be given oral does of RO5 and will return to the clinic on day 1 of each cycle (every 28 days) for scans and checks.

I can remain on RO5185426 until I decide to withdraw or it quits working.

Statistics are showing this drug works, on average, 6 months to a year. However, some people have been on it longer with success. One of the down sides to the drug is I will have about a 20% chance of developing Basal Cell Carcinoma. So, in other words, I am one a drug to kill my cancer, but in the mean time I have the possibility of developing another! Nice!

The side effects appear to be pretty mild. But, compared to biochemotherapy, ALL side effects are mild! Nothing and I mean nothing, is as bad as that. If you saw me during that time then you know what I mean! The most common side effect is fatigue. Big surprise! But, I'm a mom. I'm always tired!

Hope that answers some questions. If you are curious about anything, just ask. I will do my best to answer them.

The Good and The Bad

2010-03-02T18:11:00.000-06:00

Met with the surgeon. He was an interesting guy. Very nice. But very fast. Anyway, he did an ultrasound on the spot and found it pretty quickly. Since he was able to locate the spot, he agreed to perform a biopsy. After waiting for what seemed like for.ev.er a biopsy was performed. The first chunk that he took out came out black. His words were, well we don't need a diagnosis now. In other words, it is melanoma.

I was expecting this. As Aunt A says, I am the reason Murphy's Law exists! If it can happen, it will happen. Always. So, I knew it would be cancer. But, it was nice to think otherwise for a little bit!

So, I am left with two options. One, I could have surgery, remove the cancer in that location and essentially be cancer free. However, I know that there are other cancer cells floating around in my body. They just haven't landed quite yet. At this time I don't feel like that is the best option for me.

Option number 2 is to get on the trial. The reason we are here, in Nashville, is for this trial. Seems silly to come here and then not get on the trial. So, that is what I am doing. The trial closes Thursday. I have to be here, on Thursday, to sign the informed consent. Therefore, we are staying yet another day. This little one day trip is turning in to a week long trip! Good thing I bought a 3 pack of underwear!

I am guaranteed a spot on the trial. The Dr is rushing the biopsy results, because even though we know it is melanoma, we must have that confirmation. Once that confirmation comes back I will go in, sign the consent, have some blood work done and have a spot.

Here's the kicker. Even though I have signed the consent, if my bloodwork doesn't come back like it needs to, my spot is gone. They will test me to make sure I have a certain genome sequence and make sure I have the B-raf gene mutation. Hopefully, both of those will come back like we want them too.

The negative about the trial is that I have to be here for quite a while. But, whatever. I don't know what else to do. We have to do it. The good part (or the bad, depending on how you look at it) is that the trial won't start until April. So, I get a little more time with my kiddos, and Cody and I will still be able to go on our cruise. I will be honest though, if we could get out money back I would cancel the cruise. Simply for the fact that we have been away from the kids so much. I miss them. I love them. I need them. But, if we canceled at this point we would lose most of our money. So, the plan is to go, eat, drink, and be merry. And make lots of expensive phone calls back home:)

Here is, quite honestly, were God was watching over me, the trial closes on Thursday. I was secured a spot (if I wanted it) because I called them in the nick of time. One day later and we may not have had a spot. So, even though the news wasn't exactly what I wanted to here, God is still watching over me. He knows what he is doing.

Long Time, No Hugs

2010-03-02T18:08:00.000-06:00

Dear K-Dog and Ella Geeber Beebers,

I hope you both know how much I absolutely hate being away from you two. You both are my life. I love you with every ounce of my being. I always knew that I was going to be a mommy. I was born to be a mommy. In fact, in third grade we had to tell what we wanted to be when we grew up. Most of the boys wrote policeman or firefighter. Most of the girls wrote doctor or teacher. But, not your mom, nope, I wrote "house wife." See, I knew I was meant to be wife and a mom.

When I found out that I was pregnant with both of you I was beyond overjoyed. Absolutely and completely ecstatic. You both are true blessings. I did everything by the book when you were in my tummy. I did everything in my power to make sure you were perfect.

Oddly enough, that is out of my hands now. I feel like I am not able to do anything for you. I am never home to raise you. I am constantly traveling to see new and different doctors. And I hate it. I miss you both more than you can even imagine. I know that you don't understand what is going on and I am actually very grateful for that. However, fighting cancer is going to be a life long thing for me. It's certainly worth fighting for. I know that. Hopefully, as you get older you will understand that mommy does this so that I can be around to be with you. You both are reason enough to fight. To survive. To live.

I feel like so many parents take being a parent for granted. They take the fact that they will always be there, to be a parent, for granted. I am not one of those. Not anymore anyway. I am so grateful for this blog. One day you will be able to look back at your blog book and see all of the wonderful things that we have done as a family. I still have the dream of taking you to Disneyworld. It will happen. I promise. Just not yet.

I love you K and L, more than anything in the world. YOU are my inspiration. YOU are my world. I can't wait to see you. And hug you and kiss you. I may never stop.:)

Check, Check, and Not Quite

2010-03-01T18:15:00.000-06:00

I heard back from the nurse at Vanderbilt, which is the cancer center in Nashville. I have an appointment scheduled with them for March 1st at 2pm. It actually works out perfectly. Odd, right? I know, so maybe this is a sign. We will have to fly out of KC each time because it is a third of the cost of where we usually fly out of. Luckily, my folks aren't to far, my sister is not to far, and my BFF is pretty close too. So, we have lots of option for babysitters:) Especially this summer when Aunt A is off:) Hint, hint:)

Anyway, we will head toGWL on Sunday because we had already planned a night at Great Wolf Lodge as our Valentine's Day present for the kids. Our kids don't need more toys, but we can never get enough family time! So we will do that on Sunday, on Monday my folks will meet us and pick up the kids, we will drive to the airport. We will fly in to Nashville, take a cab to the Cancer Center, meet with the Dr, fly out that evening then go to my parents house to stay the night. See, it's working out.

At the appt. they will do a Genome test to make sure I qualify and La Roche (the company that makes the RO5 trial drug) will also do their own testing to make sure that I am, in fact, B-Raf positive. The Gnome test takes about 8 days to get back. In the meantime, we just wait.

If I qualify we will make another trip down to Nashville to get started on the trial. The trial requires about a 20 day stay in Nashville because I will have lots of blood drawn every.single.day. I will be hospitalized a few of those days, however, I shouldn't be to sick. They just have to really monitor my diet those first 20 days. By monitoring, I mean make sure I don't drink any Diet Pepsi. I know, shoot me now right?! However, I did it while on Biochemotherapy, and that was by choice, so I know I can do it on this. I think I may be able to drink the Caffeine Free, which isn't the same, but it will work. I don't necessarily drink it for the Caffeine, I just love the taste!

We are hoping (and praying) for several things right now. One, that by the time we find out that I qualify, that there will still be a spot for me. Two, that I won't be extremely grouchy from no caffeine! And three, that with the help and support of my family, that over those 20 days some (or several) different people will be able to bring the kids down to Nashville and stay with them (and us) while I am doing all of this. I do NOT want to leave the kids for that long. Quite honestly, I'm not sure I can. So, since the flights are so cheap, we are hoping that after we get this all figured out we can set up a schedule so that they can be with us. At this point I am not going to stress out about that. No sense worrying about that if I don't even get in to the trial!

I am also waiting on an appt from MD Anderson for the GSK-B inhibitor trial. For some reason they are taking their sweet time in scheduling me.

I am truly putting all my faith in God. I know that He has His reasons for all of this. What ever is supposed to happen will happen. However, I am not above pushing them along:)

Please continue to pray. Some days this fight gets so old. I have my good days and I have my bad days. But, no matter what kind of day it is, when my beautiful 2 year old and my handsome 4 year old give me one of their great big bear hugs and slobbery kisses, I can't help but dig in my heels and fight a little harder. Thank you K and E for making your Mama fight a little harder. Without you I'm not sure I could do it. I love you both.

2010-02-28T18:18:00.000-06:00

**Update: Here is one positive--the RO5 trial is in Nashville and we just found flights from KC to Nashville for a very reasonable price! Yippee! I know it's not much, but at this point even a little good news makes me smile:)

Yesterday was a rough day. For C and myself. I try not to cry in front my children. Usually I don't. However, yesterday I just lost it and I bawled in front of K. Poor guy. Once he saw me crying, he started crying too. He just kept telling me that I'm a big girl and that I shouldn't be crying. Then he gave me the biggest hug a little guy could ever give his mama. It was priceless.

I am trying to be strong. But, I'll admit, sometimes this all gets to be a little much. It's just one blow after another. At some point I guess I feel like I deserve some good news. Noone, and I mean noone, can handle bad news after bad news. I don't care how strong you are. Negative news, after negative news takes a toll on you, emotionally, spiritually, and physically. Yesterday was one of those negative news type of days.

The more I research options the more scared I get. The more often the cancer comes back the more difficult it is to fight off. That's scary.

I have looked into alternative treatments, but those require pretty much a whole life change and I am not sure that it is a possibility right now. The natural things that I am doing at home are fairly simple, but not all that enjoyable!

I am looking into The Bright Spot for Health which is near us. It's expensive, but they do some in depth testing, which I think would be fabulous. Before we can stop this cancer from recurring I think we need to figure out why it keeps coming back and why my body isn't even attempting to fight this off. We know that my body responded to chemo, but not to immunotherapy. I guess I am wondering why. Immunotherapy amps up your own immune system, however, my body did nothing on Interferon. What am I doing wrong or what can I do to help my body fight off this nasty disease. If anyone has had any experiences there, please share. Our Pastor is a huge believer in them and he is the one that has really convinced me to look into it more.

The RO5 trial that I need to get into is no longer open. The RO5 trial that is going on is the RO5 drug with a drug cocktail. The cocktail of course has it's negatives, but I think I am ok with that. The down side is that the trial is going on in only a few select places. This means transferring my care yet again. I have already spoke with my nurse at MDA and hopefully all that was sent today.

Here's the real kicker, I still may not qualify for the trial. The first appointment is just an appointment, after that there is lots of testing that has to be done to make sure I qualify. By the time all that is finished it may be 6-8 weeks down the line. By that time there may be no spots left. There are also some downsides to the trial itself, but I will wait to worry about those until I find out if I am actually in the trial.

The GSK-B inhibitor trial is at MDA. However, it is not through the Melanoma dept, it is through the Targeted Therapy dept. In order to get on the list for the trial I have to meet with them. Obviously, I will do that. However, I just wish I could have done that when I was down there last week! Quite honestly, this is the very best option for me. The GSK is a b-raf inhibitor, I don't have to transfer my care and we can stay where we are familiar. Please, please pray that this will work out. At this time there are 10 on the list for this trial. Knowing, my luck I will be 11 and there will only be 10 spots. So, it would be fab if this would work out.

All of it is a wait and see game. I hate those kind of games.

The Results Are In

2010-02-15T18:22:00.000-06:00

I realize my last post was not very explanatory. At that time I was a COMPLETE mess. I couldn't even think about my diagnosis. Nor could I think about the next step. I was completely and totally overwhelmed. Now that I am home and have been able to calm down, think, and hug my kids, my boxing gloves are back on. I am in research mode.

The study/studies that my oncologist would like me in are trials that focus on attacking the BRAF gene mutation. In December, I had blood tests done to see if I contained the BRAF mutation. I did. BRAF is a protein that plays a major role in the survival and growth of cancer cells and is mutated in a majority of patients with melanoma.

At this time there are 4-5 trials that are focusing on attacking the BRAF mutation for patients with melanoma. I have made several phone calls today, but for various reasons was unable to get ahold of anyone. I am hoping that I get return phone calls tomorrow.

I am ok with participating in a trial. The difficult part will be the cost. We are still waiting to hear if insurance will cover the cost or not. At this point we do not have any other options. There are only 7 FDA approved drugs for melanoma. I have tried 5 of them. The remaining two are not as effective as the BRAF trials are. So, whether or not insurance covers them, I will have to participate in one. So, if anyone has any good ideas for fundraisers please share. A fundraiser will probably have to take place in the near future.

Here are the trials that we are looking in to:

AZD6244 The bad part about this trial is the dosage starts out low, and it is combined with Diacarbizine, which I have already been on.

PLX4032 name has since been changed to RO5185426 This is the one that I really want to get in to. I am willing to go where ever I need to to make that possible.

GSK B Inhibitor This trial is at MD Anderson and will be starting in 3-4 weeks. They are only given 60 slots for the whole campus, I will find out this week (hopefully) if I can get in.

If I can not get in to any of those trials, the next best option is Tesetaxal which is also at MD Anderson.

If you want to know more about those drugs, click on the names and you can read some more. Most have few side effects, or at least not nearly as many as the biochemotherapy (thank goodness!). I should still be able to take care of the kids and do things, which, let's be honest, that is what I want. There are many other trials, but given my circumstances, these are the best options for me. Where we live does not have any options. At some point we will probably have to consider moving to some place that has a better cancer center.

The trials that we are looking at are nothing like what I have participated in in the past. They are pills. In other words, we (or just I) will fly to Houston, take a pill in the Dr office, and go home. We will be looking in to Corporate Angels and Ground Angels again. These are two wonderful organizations that offer free flights (Corporate Angels) to Houston for cancer patients. Ground Angels offer free rides for cancer patients. During Biochemotherapy we really utilized these services. The bad part is that Corporate Angels is now a 3 hour drive from our home. However, it beats the 11 hour drive that we have been making! However, if I end up participating in a trial not in Houston, the cost of travel will come out of our own pockets. I am currently looking at a few trials at Sloan-Kettering in New York, NY.

So many of you have asked how you can help. Fundraising ideas would be great. We discovered from the last (stupid) round of chemo that gift cards to restaurants and food (especially food we could put in the freezer for later) were quite possibly the best gifts ever!! I don't eat much on chemo, however, my husband feels like he needs too!

The outpouring of love, prayers, comments, emails, and phone calls has been overwhelming and so greatly appreciated. I realize that God knows that I am one tough cookie. He knows that I am a fighter. But he apparently forgot that I can also be a total bitch. He has certainly heard a few choice words these past few days. But, I am getting over it. It's not his fault. Well, not totally his fault. This is just my life. This battle will be constant. I have a very aggressive form of cancer. Recurrence is simply going to be a fact of life for me. Do I like it? Hell no! But, I was not given a choice in the matter. So, until some great man or woman finds a cure all for melanoma I will simply keep on fighting. No if, ands, or buts. I will fight and I will fight like hell. No question.

Please, please keep praying. I know so many of you out there are rooting for me and praying for me. I will never, ever be able to express how grateful I am for those simple things. I do believe that God is listening. For example, I really wanted to have repeat PET scans in January, but, for whatever reason, that did not happen. If we would of had them in January, more than likely this tiny little spot would not have shown up. Therefore, we would not have returned for 3 more months. God only knows how much it would of spread by that time. Scary, right?! See, so even though my cancer did come back, it could of been so much worse.

More Info

2010-02-15T18:20:00.000-06:00