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!)