Saturday, March 27, 2010

Stupid Cancer

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

Friday, March 26, 2010

Trial Appointments

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.

Thursday, March 25, 2010

Bright Spot Appointment

**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:)

Sunday, March 21, 2010

Easing my Fears

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!

Thursday, March 18, 2010

Vanderbilt Info

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

Friday, March 12, 2010

No News

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!)

Thursday, March 11, 2010

Death and Dying...

...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

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.

Tuesday, March 2, 2010

The Good and The Bad

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

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.:)

Monday, March 1, 2010

Check, Check, and Not Quite

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.