Thursday, December 30, 2010

Who Am I?

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.

Thursday, December 23, 2010

Papilloma

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!

Wednesday, December 22, 2010

Love This!

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.

Monday, December 20, 2010

Christmas Card

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!

Sunday, December 19, 2010

Sense of Humor

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.

Saturday, December 11, 2010

True Friendship

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....

Tuesday, November 30, 2010

Slacker!

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!

Sunday, November 21, 2010

Appointment

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!

Friday, November 12, 2010

Stressed?

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.

Tuesday, November 2, 2010

Absent

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...

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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:)

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At the Princess Breakfast at Epcot

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E attempting to ride Bullseye! Goofy girl!

 

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Cinderella’s Castle *sigh*

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My little Princess!

 

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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!

Sunday, October 17, 2010

stupid

CANCER IS STUPID!

the end

Thursday, October 7, 2010

Definition

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:)

Monday, September 27, 2010

Vandy Update

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!

Friday, September 10, 2010

Stand Up To Cancer

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!

Wednesday, September 8, 2010

My Newest Endeavor

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!

Saturday, August 28, 2010

Nashville with the family

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!

 

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Kyler and Mama outside the Arch.

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Ella and Mama on the way up the Arch

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

 

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Posing for Mama to take some pictures!

Wednesday, August 25, 2010

Family Trip

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:)

Saturday, August 14, 2010

Pathology Results

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.

Tuesday, August 3, 2010

CT turned into a PET

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!

Friday, July 30, 2010

Vandy Visit

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? :)

Wednesday, July 28, 2010

Do u know me?

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.

Wednesday, July 21, 2010

Still Kicking

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!

Wednesday, July 14, 2010

It Came and Went

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:)

Wednesday, July 7, 2010

News Story

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

Sunday, July 4, 2010

Back It Up A Bit

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.

Friday, July 2, 2010

The How And Why...

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.

Tuesday, June 29, 2010

Bad Things Break In 3's

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!

Friday, June 25, 2010

I love FAT!

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!

Thursday, June 24, 2010

Vanderbilt appt

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!

Tuesday, June 22, 2010

New Trial

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 :)

Sunday, June 13, 2010

More...

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?

Monday, June 7, 2010

Appt Today

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!!

Saturday, June 5, 2010

Doing Well..

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.

Monday, May 31, 2010

Shirts...

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!

Thursday, May 27, 2010

Much Better!

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!

Friday, May 21, 2010

Side Effects Suck!

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!!

Sunday, May 16, 2010

Trial Update

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!!

Wednesday, May 12, 2010

Nashville Tennessee Flood 2010


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.

Saturday, May 8, 2010

Update on Angie

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.

Friday, May 7, 2010

The Rest of the Story

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.

Wednesday, May 5, 2010

The Trip From H-E-double hockey sticks

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!)

Thursday, April 29, 2010

Fundraiser

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!


Monday, April 26, 2010

Side Effect

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!

Sunday, April 25, 2010

A Disappearing Act

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:)

Friday, April 23, 2010

Exciting News!

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!

Wednesday, April 21, 2010

The Drugs..

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:)

Thursday, April 15, 2010

Memories...

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...

Wednesday, April 14, 2010

I AM IN!!

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!