Friday, December 31, 2010

Happy New Year

Just finished my second week of the trial! Hooray!!  On Monday I will begin receiving the drug in it's full dose.  I am so looking forward to it and seeing all the amazing things it will do. Just as a reminder, this drug is not a cure, but rather a band-aid (who cares as long as the crazies are not growing!).  I'll be taking it as long as it is working for me, which could be years or until there is another treatment that is better for me.

Teya is sitting here with me and we just finished watching Kris Carr's vlog together. I love sharing her messages with Teya.  Don't know her - well you should check her out.  She's the friend I've never met. Her blog is Crazy Sexy Life and the link is on my blog list.   She is the most inspirational woman I know and because of her, I am as healthy as I am.  I may have cancer, but I am still healthier than I have ever been - physically and mentally.  She introduced me to the plant based diet including green smoothies and green juice as well as yoga and meditation.  Don't know where I would be today without her.

Last day of 2010.  Although there were a few black clouds, it was a great year for me.  Blessings are everywhere in my life and now is a good time to reflect on the past year.  I got to spend a lot of time with family.  From visits in AZ, a summer of vacationing with family to Disney World.  We had some really good times this past year and those memories will last forever.  I have the best friends a girl could ask for and this year has brought us closer together.  It is amazing the good that comes from the bad.  This past year has shown me the love of those around me and how supportive friends and family can be.  They have given me laughter and been there to listen and encourage. I felt the love of so many through phone calls/texts/emails/blog comments, prayers, meals, house cleanings, handmade blankets and all the other thoughtful gifts I have received.  You all make me stronger and I give thanks to all of you.

I can't say the year was bad when I felt so much love throughout the year.  So as I say good-bye to 2010, it is with a smile and warm heart.  Not, thank goodness it is over.  I look forward to all the joy and blessings that 2011 will bring into my life.  I hope the same for you.

Happy New Year!

Monday, December 27, 2010

Second week of treament

I am again at my doc's office for my second dose.  I took it about an hour ago and I feel great.  Tired from the Christmas extravaganza weekend, but other than that, I feel great.  I'll be here for another 10+ hours today and in every morning for a blood draw. This is the last full day and week of daily blood draws as this is the last week of the two week trial.  Beginning in January, I'll be in the rollover study and will receive the full dose which I'll take at home and see the doc once a month.  I'm thankful that I was able to get into the 2 week trial  but I look forward to getting into the rollover study and getting the full dose.

Thursday, December 23, 2010

Great week

This week has gone great.  No side effects and I'm excited to be on this treatment.  Monday the 27th will be my second and final week of the study.  One more 11+ hour day and one more week of daily blood draws then I am finished and will begin taking the drug at home.  I look forward to receiving the full dose and not having daily blood draws.  A small price to pay for getting what I want, but I'll still be happy to not have a daily poke.

Last Monday my good friend Claudia came to doctor's office and brought me lunch and stayed with me for 4 hours.  We had vegan chili and a salad.  Oh and she made me celebration cookies.  (She's a dessert chef ya know.  Check her out - )  Her celebration cookes are the best in the whole world!!  Teya thinks so as well.  Lunch was terrific, but her company was fantastic.  Thanks Claudia!!  You are such a great friend and I am so blessed to have you in my life.  You can make me laugh like no one else and your stength empowers me to be a better leader for myself.  Thanks for everything!

Ok, Teya and I are going to make some Christmas cookies.  I'll post some pictures once were finished.

Happy Holidays everyone!

Monday, December 20, 2010

First day of treatment

I am sitting at my doctor's office and just took my first dose!  I am in a 2 week clinical trial and I will need to be here today for 10+ hours.  Yep, 10 hours.  Claudia is visiting me today and bringing lunch.  What an awesome friend she is!!  Today and then again on Monday the 27th, I will need to have blood drawn every 30 minutes for the first 2 hours and then every 2 hours after that up until 10 hours.  It is a part of the trial to measure absorption and then how the body gets rid of the drug - Tuesday - Friday of this week and next I'll come in once a day for a blood draw.  During the 2 week trial the dosage will not be the normal dose.  After these two weeks, I'll get rolled over into getting the drug without any of the blood draws and it will be the full dosage.  I"ll be taking the drug at home once a week.  I'll then see the doctor once a month and get scans every 8 weeks.  I'll be on the treatment for as long as it is working.  My doc explained it like this.  If you have a pipe with a leak and you put your hand over the lead, the leak stops.  If you take your hand off, the pipe leaks.  This treatment has not been proven to cure, but manage.  That is fine with me.  As long as there isn't growth, tumors don't hurt you.

Side effects should be minimal, but with everything it is a wait and see game.  The drugs effect everyone differently, so we'll see what effects it has on me.  Should be minimal nausea and fatigue with the most common side effect being non-melanoma skin cancers.  My skin will be checked once a month for any changes.  I'll have photographs taken of my skin to compare.  If anything looks funky, we'll remove it.  There hasn't been any cases of having melanoma lesions only non-melanoma. 

I also found a lump just below my left breast. My doc looked and it is on my last CT scan, but was not indicated by the radiologist.  He says it is not in the breast tissue and is just under the skin which leads him to believe it is a melanoma tumor.  We are not going to biopsy it, but will keep a close eye on it.  Once I am on the treatment I should be able to feel it getting smaller.  A good indication it is working before I have a scan.  I'll have a scan just before I begin the rollover (full dose) so that we know the size of the crazies.  This will ensure that we are comparing before and after treatment sizes.  This is just in case there was growth or shrinkage since my last scan in November.

Have I mentioned how much I LOVE my new doc?  Not only is Dr. Gordon highly knowledgeable about Melanoma (YES!), he is also one of the most caring doctors I have met along my journey.  During our initial consultation, he thoroughly answered all our questions and we didn't feel rushed.  We were at his office for over an hour during which he left the room to research some questions.  Seriously! I haven't had a doctor yet that has left the room to research a question. Nothing against my Tucson buddies, but there we left without all our questions being answered with a "come back and see me in a week" response. Another 4 hour round trip drive and co-pay later we may have our answers.  I also need to rave about all of the nurses and staff.  They are all so friendly.  Everyone I pass smiles and says hello.  Awesome doc with wonderful nurses, I couldn't be happier!
Anyhoo, I'm really excited to begin today and have the drug begin to work in my body.

I'll keep everyone posted.

Saturday, December 11, 2010

More Great News!

No Chemo!!!!!!!  The doctor, Dr. Gordon, I saw on Friday is running a trial with the B-raf drug.  I start the 20th.  The drug is a pill that I will take at home and there are little side effects. This is one of the drugs I wanted and I'm so excited.  I'm getting ready for The Martin Christmas Party, so I'll post more later.  I just wanted to tell everyone the good news.

Wednesday, December 8, 2010

Some good news!

Finally remembered to call my doc and got my MRI Results which were good - NED (no evidence of disease).  Yipee!! I needed some good news.  Thank you God for keeping my brain healthy!

I have an appointment with a new doc on Friday.  His office is also running the clinical trial that the Arizona Cancer Center docs want me in.  Good thing is he is in Scottsdale, about 15 minutes from home.  I'm hoping to get a recommendation from this guy and not just information regarding the trial.  I did hear back from one of our friend Jaci's contacts at UCLA and he is recommending I pursue a more recent treatment.  (Can't say it enough - thanks Jaci!!) I am definately on board with this type of thinking.  It is just trying to find the drugs/trial I need.  He gave me some things to ask my doc in Tucson and I look forward to getting the answers on Tuesday when I travel down there.  I have been unable to get an appointment at Mayo until 12/30 which I think will be to late.  I'm not sure I am comfortable waiting that long to begin a treatment.

Other than waiting around for docs to call, I still feel great!  Went to yoga last night and it was amazing.  Just what I needed.  Can't wait for tomorrow night's class already.

I'll update again after my appointment on Friday.

Monday, December 6, 2010

No News

I got no news from anyone today.  I'll keep you all posted as I hear anything from my docs and specialists.

Sunday, December 5, 2010


I did not receive the results of my MRI on Friday.  I was really busy.  It was my last day at the school and then after work I went straight to Teya's school to volunteer in her class.  After school she has gymnastics until 4.  My doctor's office closes at 4 and I didn't remember until after then.  I am taking it as a good sign that they did not call.  If it is bad news, then tend to call right away.  Once I speak with them tomorrow, I'll update.

We went out last night to celebrate our friend's, Rob Sutton, birthday.  It was so much fun to be with good friends for an evening out.  Most I hadn't seen a long while.  I am so blessed to have great friends that speak their concern and love with tight hugs and not words.  I wasn't sure what to expect, but was so thankful to have a night of catching up and laughter with friends without discussing the big C.

Have a great Sunday!

Wednesday, December 1, 2010


I got my results from my CT Scan and they were not good. They were actually worse than I could have expected. The tumors in my lungs have grown and now there are more. There is also a new .5 centimeter mass where my right kidney used to be.  I don't even know how to put my emotions into words except, I'm devastated.  Beyond this crap though, I feel great.  All of my blood work came back healthy and my lungs sound great nor do I have shortness of breath or pain.

I had an appointment with my onc in Tucson and his recommendation is a clinical trial that is testing a breast cancer chemo against an approved melanoma chemo (ABI-001 vs. DTIC).  It is a radomized study.  I'm not confident in this treatment option as there is another drug that is proven to be successful with Melanoma.  The drug was suposed to be approved by the FDA Chrismas Eve, but they postponed it until March 2011 to get additional data.  There is an open study for this drug at MD Anderson in Houston, TX.  My Uncle Art and Aunt Diane live there and I know they would take care of me if this is where I need to be for treatment.

So, anyways, this is a difficult decision and I am seeking other opinions to make sure that the treatment we choose is right for me.  I'm hoping to get an appointment with The Mayo clinic in Scottsdale.  I faxed them my medical records Tueday night and I hope to hear from them tomorrow. Also a wonderful friend of ours, Jaci, is helping us find other opinions through her contacts in the world of cancer.  We are so grateful for all she is doing for me.

Any of the treatments that are available will wipe out my immune system as well as possibly kick my butt with numerous other potential side effects.  I could be in treatment for the next 6+ months.  Because of this I have to quit my position at the Pre-School and this Friday will be my last day.  I am so sad to have to leave.  As one of the teacher's (Miss Laura) put it, it is my happy place and it will be hard to leave such great co-workers (who really are a second family) and great children and their families.  Friday will be a hard day for me.

Due to the spreading of my cancer, I am having an MRI of brain tomorrow.  We need to ensure that this nasty stuff hasn't made a home there as if so that would be a totally different treatment.  Should have the results on Friday.

I am praying for guidance in my decision and healing.