Monday, September 27, 2010

Getting Started

Checked into the hospital at 1:00.  My room is much bigger than I expected.  I have a TV with DVD player, a bathroom, window (I can see the mountains), couch and recliner chair.  I'm able to wear my own clothes and move around as much as I like. 

Here is a picture from my room.  I have one of Teya's pink fuzzy blankets and my own pillow.  The pink cheers up the room.

I am now waiting for treament to begin.  We were hoping to begin at 4, but we are running behind.  I have met me doctor and nurses and they are fantastic.  They are all experts on my treatment and I feel good about being in their care. They do have something to give me to help with most of the side effects, so that makes me feel better.

My monitors do not like me typing.  I have the pulse thing on my finger and it keep setting off alarms. Pretty annoying.

I'll keep updating as I can.

Sunday, September 26, 2010

Getting Ready

I finished my tests and got my port put in on Friday.  I'm sure I passed everything and am ready to begin.  Getting the port was a smack in the face reality check and I am SO thankful that Claudia was there with me.  She really helped get me through that day. I could be honest with her about how I was feeling and she helped keep things light with good conversation and humor.

My mom arrived this morning, thank goodness, and we spent the day relaxing and then shopping.  I found out that I will be able to bring in food, my laptop, clothes, etc., so we bought some food and I made some food to bring.  I wanted to have some comfort foods or foods I know I like to help me eat.  I also got some new PJs - nice, soft and warm PJ's.  Hopefully they will help keep me warm.

I am so thankful that my mom can be here with me.  She is a great support and I know that she will make sure that I am taken care of.  Todd will be here in Phoenix with Teya.  I'm grateful that Teya will have one of her parents during this week.  I am also thankful that a wonderful friend of mine, Annette, will be picking Teya up after school.  I don't know what I would do without her.  Her and my great friend Kelly have really helped us with Teya.  They have picked her up from school and taken care of her whenever we have needed over the past weeks.  They are a blessing to have in our lives.

There are so many others that I need to thank.  All the ladies, teachers and moms, at my work, PFT.  They have been such a support to me.  They have taken turns bringing us dinner and this has really been great.  And then there is the owner, Linda, and office manager, Kathy.  They have been awesome with allowing me the time I need for surgery, dr. appts and now treatment.  Thanks to Jeri who is my partner this year.  This is her first year with the 3s and I haven't been able to be there for her.  She has done a great job transitioning into the class with the help of Janet, who stepped in for me.  Thank you Sarah for loaning me Eat Pray Love.  It will be nice to have a new book to read.  Then there is Linda P., who made us 2 casseroles and stopped by for visits. CB & Jon who loaned me movies and some books. All the people who have sent me cards and well wishes.  Thanks to all the people who are praying for me.  I can feel the support!

I feel truly blessed to have so many people in my life, some I know, some I don't, supporting me in so many ways.  Thank you to everyone!

My mom and I head down to Tucson tomorrow morning.  I have a dr.'s appointment to go over all the test results and then we'll contact the hospital to see if there is a bed ready.  If so, we will go and get me checked in. I'll then begin treatment tomorrow afternoon/evening.  This is what I am hoping for.  I do not want to wait until Tuesday as this will push back my getting home by a day.  As I type this I am nervous, but hopeful.  This will be my miracle.  At the end of these 20 days, I will be free of this cancer.  This treatment will be hard, but the result will be worth it.

One of the hardest parts was telling Teya.  I think this was harder than the treatment will be. I was honest with her and she knows about the cancer and the treatment.  It is so hard to look your little girl in the face and tell her about this, but we were both strong.  We cried, but mostly just talked about it.  She is one great little girl and it will be hard to say good-bye to her in the morning.

I am going to try to blog while I am in the hospital, so I can keep everyone posted on how I am doing.  Feel free to call.  If I don't feel up to talking, I won't answer my phone and I'll return your call if I can.

I now need to try to get some sleep.

Thursday, September 23, 2010


Sorry I haven't updated my blog this week has been a busy one and I'm a little overwhelmed.  We have decided to do the IL-2 treatment and if all goes as planned, I'll begin on Monday.  I have some pre-tests and then I'll be in the ICU so it just depends on if there is a bed available.  Today I went down to Tucson for a Pulminary Function Test, passed that.  A big THANK YOU to CB for driving with me.  Tomorrow I will be back in Tucson for a Nucleaur Exercise Test and a Port Placement. An early THANK YOU to Claudia for coming with me for this trip and driving me home.  Tomorrow won't be as easy as today.  The port is an outpatient surgery and I'll be a little sore and out of it for the ride home.  Also, I can't eat after midnight tonight until the port is in place which won't be until about 1 or 2 in the afternoon.  Watch out, I'm going to be cranky.

Info about the stress test:

Info about the Port:

Also, Todd and I spent 3 hours in the ER Wednesday night (everything is fine).  I was having leg pain in my left calf all day Wednesday and I talked to my docs.  They told me that the blood work that I had done on Tuesday resulted that the blood thinner I was on, warfarin, was not doing anything - meaning my blood levels were just like I wasn't taking medicine.  So, they thought I may have a blood clot in my leg and sent me to the ER for an ultrasound.  3 hours later find out no blood clot, but that I have injured muscles and tendons in the calf of my leg.  Thank goodness no blood clot and that the pain in my leg was explained.  I just need to rest it as much as I can and it should heal itself.

I am so tired right now, I'm going to bed.  I'll need to get up at 4am AZ to leave at 4:30am to be in Tucson by 7:15 to begin my day of lab work, stress test and port placement.

I'll update soon.

Tuesday, September 21, 2010

MRI Results - GOOD!

Quick post to let everyone know that my MRI (brain) Results came back clean!  On our way to Tucson now and will update later.


Sunday, September 19, 2010

More Results

Sorry it has taken me so long to post the results from my latest visit with my docs.  I needed some time to process the information.

I met with doc and he confirmed that the tumor in my kidney was melanoma. We reviewed the results from my CT scan and he explained that I have 3 tumors on my lungs.  A 7mm on my lower right lobe, a 8mm on my lower left lobe and a 2mm on my left lingula (small area of the left lung). He is not recommending surgery as he believes they are to small for a surgeon to find and since this is the second time a met has come to my lung (initial in 2008).  He is recommending a chemo treatment.  His first recommendation is a treatment called High Dose IL-2.  It is nasty, but in the words of my doc, my best bet for a cure. Yes, he did use that word which I haven't heard him utter in the 4 years I have been working with him.  In his experience this treatment has worked with melanoma patients with mets in their lungs.  Although he believes this is my best option, I am scared of this treatment.  It requires a 5 day stay in the hospital a 9 day break and then another 5 days. This is round 1.  If it shows success (tumor shrinkage), then I would do a round 2.  I would get a 15 minute infusion of the drug every 8 hours for the 5 days.  Some of the side effects include vomitting/nausea, pain, itchy rashes, fatigue, kidney damage.  That last one is the biggie for me as I now only have one.  At this point I only know of the treatment being offered in Tucson (a 2 hour drive from Phoenix).  If this is the treatment we choose, my mom is going to fly out here to be down there with me so Todd can stay in Phoenx with Teya.  Teya will need to have one of her parents and as much normalcy to her life to get her through.  This will make it easier on me as well knowing that she is at her home being taken care of.

I had a follow up PET/CT on Friday and will have an MRI of brain (no symptoms - standard follow up) on Monday.  I am then heading back down to Tucson on Tuesday to discuss everything with my doc.  I have a list of questions for him to help me decide. There are other treatments out there that I'll discuss with him.  I am also looking into a second opinion with the Cancer Treatmet Center of America in Good Year, AZ.

Here is information regarding the IL-2 treatment:

The other treatments that are less toxic are:

Ipilimumab, this is the one that has been in the news.  I can't get it right now for 2 reasons: 1) I haven't failed another chemo treatment and 2) my tumors are not at least 1 cm.  This drug is going to be reviewed by the FDA on December 25, 2010 and will hopefully be approved soon after.  This drug has been in clinical trials for 10 years and is really promising as it is showing long term results.  1-2 years NED (no evidence of disease).

PLX 4032 - There is a BRAF mutation that has been found for melanoma tumors.  Mine is being tested and if it comes back positive this might be an option for me, but it isn't showing long term "cure".  It has shown close to a 80% response rate in terms of tumor shrinkage or stopping of growth, which is fantastic news, but then progression of growth is shown about 8 months later in a large number of patients.  If I do have this mutation then I would like to discuss my case with the docs running the trial to get more information. 

I'll keep posting as I get information and make decisions.


Saturday, September 18, 2010

Cosmopolitan teams up with Melanoma Research Foundation

I just found out the magazine, Cosmopolitan, has teamed up with the Melanoma Research Foundation to raise awareness for safe fun practices.  Cosmo is setting up a grant for MRF which will go towards new research for treatment. The last treatment that was approved for treating advanced melanoma (like mine) was back in 1998 and this treatment is only about 15% effective.  We are in desperate need of new treatments.

With a donation of $10, you receive a matte-gold cord bracelet.  A donation of $25 will get you 3 bracelets.

Here is the press release which includes information regarding Melanoma and the Research Foundation:

Here is where you can donate:

Just in case you don't click on any of the links, here are the important facts you should know:

From Cosmo's donation page: "Skin cancer is a serious, often deadly disease. If you have advanced melanoma, your life is measured in months. It’s the fastest growing cancer in the world, and is hitting young women hard. Melanoma is the leading cause of cancer death in women 25 to 30-years old, and the second leading cause of cancer death in women 30 to 35-years old. "

Please take action to protect yourself and not have the mindset that skin cancer is nothing to worry about or that this will happen to someone else.  I wish someone would have educated me, so please let my experience educate you and keep you safe.  No one is saying to stay out of the sun, just practice safety in the sun.  What we are saying though is stay out of the tanning salons.  I know some of you are still using them.  Seriously your fake tan is not worth risking your life.  Learn to love your skin as it was created, not by changing the color of it.

Thanks, have a great weekend and stay safe in the sun!

Sunday, September 12, 2010


I got my results for my scan Wednesday about 15 minutes after the scan, but have not posted them as I hadn't yet spoken with my mom. The results were not good. I have 3 blood clots on my lung and a few suspicious spots. I had to get on a blood thinner right away and I will be taking it for a few months to prevent further clots.  The clots should dissolve on their own, but there is a chance that they can move around (i.e. brain and cause a stroke).  For this first week, I have to give myself shots - one in the morning and one at night as well as take a pill (warfarin or coumadin as you may have heard of). The shots work right away and the pill takes 5 - 7 days to begin working, so that is why the docs put me on the shots right away. After the first week, I'll only have to take the pill and I'll have to get blood work done weekly to manage the amount of warfarin that I will need to take.

Not sure about the spots yet. I see Dr. Hersh this coming Wednesday and hopefully he'll have some additional information for me regarding the spots as well as his recommendation on treatment. This hit me pretty hard and I had a hard time dealing with the news - I'm still processing it actually.  Also, I'm not sold on this warfarin solution.  I consume a lot of green leafy veggies and when you are on a blood thinner you are advised not to consume a large quantity of these veggies as it has an adverse effect on the medication.  Basically our liver produces proteins that helps our blood clot and vitamin K increases the amount of proteins that are produced.  Green leafy veggies have a high amount of vitamin K.  Warfarin works to produce a lower number of blood clotting proteins, so in order for the drug to work properly vitamin K should not be consumed in a large quantity. 

I consume a large amount of green leafy veggies as they are known cancer fighters. I am not comfortable with reducing the amount of cancer fighting foods in my diet.  It scares me actually.  I believe that I have been able to fight off my cancer so far because of the changes I have made in my diet.  I know my cancer has returned since my diet changes I made 2 years ago, however, it was contained to one location.  I truly believe that my fight against cancer does not end with surgery or western medicine/treatments.  I fight each day with what I consume, trying to keep my stress level low (this one seems to be the hardest) and activity - yoga and just moving in general.  Because of this I am going to find someone to help me manage all of this as it is too much for me to do alone.  I am going to be looking for a Naturopathic Doctor - someone who will incorporate western medicine and nutrition.  If anyone knows of a good one in the Phoenix area, please let me know.  I would much rather see someone with a referral if possible.

I'll post an update once I see Dr. Hersh on Wednesday.  Please do not expect a post on Wednesday as my appointment isn't until 3pm AZ time.  It is a 2 hour drive there and back, so I most likely will not update my blog until Thursday.

Thanks everyone for your continued support and prayers/positive vibes.

Tuesday, September 7, 2010

Scan tomorrow

I have my CT Scan tomorrow morning (all organs).  Any prayers, good thoughts, vibes, energy - whatever you got - for clean results would be awesome.  Thanks!

I'll post the results when I get them, but probably won't be until Friday.