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!

Monday, April 12, 2010

Today is the day...

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

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

On Tuesday I will have labs and scans.

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

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

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

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

On Wednesday early afternoon we will fly home.

Ugh! What a schedule huh!

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

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

Wednesday, April 7, 2010

It's Started...

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

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

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

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

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

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

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

Friday, April 2, 2010

No No's For Mama...

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

Some will not be a problem.

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

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

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


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

If anyone has any yummy recipes that do not involve any of the above ingredients, please share! I am having a very difficult time finding recipes that work. Some of the items that you have to add to the recipes contain things like soybean oil or corn syrup. Ugh!
 
I will admit though, with the combination of the diet, Vitamin C IV, and vitamins I am taking at home, I have never felt better. Other than today (which I am contributing to the fact that I only had 5-6 hours of sleep) I have had lots of energy, I have been able to play and actually keep up with Ella!, and have been in a good mood. I love it!
 
Overall, the appointment at Bright Spot has been worth it. You can't put a price on feeling good and having energy!
 
I am really struggling with the meals though. We end up having two separate meals. Daddy and the kids eat one meal and I have to eat another. Blah! We enjoy eating as a family and even though we still eat together, it's just a little odd when they are eating one thing and I am eating another.
 
So, any tasty recipes would be so greatly appreciated. You can email me at cancersucksmonkeyballs@yahoo.com

Thursday, April 1, 2010

Hook A Girl Up

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

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

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

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