Tuesday, November 29, 2011

It has been a while...an update!

As Thanksgiving has now passed us and we are all reflecting on what we are thankful for, I realize that that it is my turn...

Since Tina's passing, I have not been able to officially thank those who have supported us over the last few months. Know that words cannot express the thanks to those whom have done so much for our family and in support of 'Pale Skin Is In'. It has truly been amazing. It has obviously been a difficult couple of months without Tina, but Teya and I are finally starting to get into the swing of it being just the two of us. Luckily I have had the full support of my work, JDA Software, so that has helped the transition immensely. I am also very proud of how my little girl has handled all of this. She definitely learned from her mother! I know this may be a bit late, but thank you...

Many people have been asking, so what is going to happen to Pale Skin Is In? It was always Tina's hope to have Pale Skin Is In educate and raise awareness of melanoma, especially for children, so that is just what we are going to continue to try and do. First and foremost, in Tina's memory we are building a sun shade at the school Tina worked as a pre-school teacher, and loved, Paradise For Tots. I thank everyone who donated to the cause! The project is now in production mode, so I will hopefully have more information in a few short weeks! The Phoenix and Michigan chapters of Team Pale Skin Is In will continue to try to keep Tina's work alive - educating and raising awareness of melanoma!

Also, following up on the success of last year’s PF Chang's half marathon and raising money for the Melanoma Foundation, Team Pale Skin Is In will again be running in the PF Chang's half marathon here in Phoenix (Jan 15, 2012). I was able to find the perfect cause to raise money for - a 501(c)3 non-profit The Shade Foundation (www.shadefoundation.org). It was started by a former Phoenician Shonda Shilling, wife of former MLB pitcher Curt Shilling. Shonda started the foundation back in 2001 after her own battle with melanoma. Their mission is to "To eradicate melanoma through the education of children and the community in the prevention and detection of skin cancer and the promotion of sun safety." I can't think of a better organization to raise money for! This year, we will again be running in the Phoenix PF Chang's half marathon, but a few people will also be running in the Las Vegas PF Chang's half marathon Dec 4th! Last year we raised over $4500 for the Melanoma Foundation, this year we hope to raise that much or more for the Shade Foundation...

If you would like to be part of Team Pale Skin Is In, either to run or just be part of the team, let me know - you might get a cool shirt out of it! If you would like to donate and help Team Pale Skin Is In "Run for the Shade", it would be greatly appreciated:


Finally, I hope to be a bit better on updating this site with the progress of Team Pale Skin Is In as we continue Tina's mission - education and awareness! Thanks again for all your support...


Sunday, July 31, 2011

Memorial Service for Tina...

Wanted to let everyone know we will be having a memorial service for Tina on Tuesday, August 16th at 6:30pm at the Scottsdale Worship Center in Scottsdale, AZ...

Scottsdale Worship Center
6508 East Cactus Road
Scottsdale, AZ 85254-4553
(480) 483-2401

We give more details as we get them...

Friday, July 22, 2011

The journey has ended...

It is with a heavy heart and great sadness that I let you know Tina's journey has ended. She went peacefully this afternoon, and was surrounded by family. Tina's story of her battle with melanoma touched many people, and was an inspiration to all - she will be missed dearly...

We will be having a memorial service on Monday here in Michigan, and will share more information once we get it...

Thursday, July 21, 2011

Heading home...

Well, we checked Tina out of the hospital today and brough her back to her parents house for the last part of her journey. Her condition has worsened unexpectedly the last week, and after running a number of tests at the hospital, they determined there just wasn't anything they could do to help her. She was happy to be going home though, so at least she can be comfortable and surrounded by family and friends.

It is very hard to see someone so strong, such a fighter, and such an inspiration to so many people, so weak. We all still believe in miracles though, so any prayers or pleasant thoughts would be much apprecaited...

Sunday, July 17, 2011

Got some good news, got some bad news...

Well, have some good news, and have some bad news for you. First, the bad news...

Today we had to check Tina into the hospital. The last 4 or 5 days have been really bad for her, and she has been getting weaker and weaker every day. She had lost a lot of weight, her energy level was down, and she had very little appetite. We had a talk with her, and we gave her the option to head to a hospital, or wait a day or two to see if she got better. With the way she was feeling, she opted to head to the hospital...and we all agreed it was the right thing to do.

The good news, if you can call it good news, is we now know why she was feeling so bad - pneumonia. I guess the infection in her left lung is really bad. She was moved to ICU, and they have already begun treatment for it. We are hoping for a speedy recovery, but due to the weak condition she was in before we got to the hospital, it might take a bit longer than normal for her. Yes, it is a stretch to call it good news, but it could have been much worse - at least it doesn't have anything to do with the cancer. We are happy we got her into the hospital when we did...

While we are here, we are also going to see if we can get a read of how Tina is doing aside from the pneumonia. Since she has been in hospice so long, we haven't really had any tests done on either her heart or her tumor(s). Hopefully being in the hospital might give us some information that might help us after she gets out as we look at the next steps to try and get her treatment - our goal AFTER we get her better from the pneumonia...

Anyway, will keep you updated in the next couple of days...

Friday, July 15, 2011

Michigan Update from Mom

Tina's first couple of weeks in MI went fairly well. Tons of changes for the Sullivan family for sure. Todd and Teya seemed to have settled in quite well. Tina has a first floor room in our home. She can see the water from her room and the living room. Tina enjoys spending some time on the deck which over looks a lake. Teya swims a lot and loves the speed boat. Todd is learning to drive the speed boat with dad skiing and mastering his own boarding skills.

Tina had to have an abnormal tap last Friday. The Hospital was able to remove 7-lbs of fluids, which brought much needed relief. Since the tap Tina has had some very good days and some bad ones. But with all the prayers we are thankful that the good days are out weighing the bad.

Today marked another start of a new challenge Tina is taking on. She began some small exercises to try and increase her strength in her legs and arms and over all body. I am very proud of her and believe she did a very good job. She has been doing some strengthen but is now working even harder. A good friend of mine brought over a walker with wheels and a seat on it. The walker truly made major changes in Tina's ability to walk more. Funny how simply things can truly change one's life.

She is surrounding with lots of family and friends. We never know who's stopping by for a visit: brother, aunts, uncles, cousins, niece's, nephews and friends. Even a sheriff stop by for a visit ha-ha her uncle. Tina's aunt comes now every Wed and spends the day with her and gives mom a much needed day off. Big hugs go out to her and those of our friends and family who have step up to take time out of there precious days to become part of Team Pale Skin is in.

One last bit of news while Todd continues to work out of the RV we all travel to MI in. He and Teya will have a new home by the first of the month. My husband and I bought the house next door to us and they will have a place to call home in MI. Teya says she can't wait to move in.

Well that's all for now, thank for all your love, prayers and support. Tina still feels it all and hopes one day soon she will be able to speak with you directly.

Thursday, June 30, 2011

Michigan Bound!

Well, believe it or not, we are currently on an RV bound for Michigan...with Tina on board!

It was a tough decision, but Tina really wanted to be up by family to try and gain her strength back and get better. Since she is unable to fly, we knew driving was the only option. No way she could ride in a car in her condition, so we decided to RV it. We are the proud new owners of a 1991 33 ft Holiday Rambler! It has a great big queen size bed in the back, which is perfect for Tina.

We are at the tail end of the trip as we just entered Michigan, and it is a welcome relief to get out of the AZ heat. It has been a pretty good trip, and Tina is doing great. Teya is actaully having a pretty good time too, and Rick, Rose and I are splitting all the driving duties. Teya is in charge of the having fun in the RV duties, and it seems she is doing just that. Only been pulled over by the cops once on the trip...

So how long are we going to be in Michigan? Really, it is kinda unknown...but as long as is necessary. The main goal is to get Tina healthy, so she will stay at her parents house so everyone can help nurse her back to health, and the RV will be my new home/office. We are hoping to be here 1-2 months before we can head back to AZ. If we think it is going to be any longer than that, we will look to rent a house up here and go from there. Thankfully, my work has been great about me working remotely, so I really, really appreciate that. Two of Tina's co-workers from PTF are staying at our house while we are gone so Marley, Bo, Kitty and the fish will be well looked after, and our good friends Cathy and Jon are gonna help take care of any other house stuff that may arise. That makes the trip that much easier...

While we will dearly miss our AZ family, know you are in our thoughts. We have received such fantasic love and support from everyone, it made the decision to leave very, very though. Know the invite is out for anyone to come and visit! Might be a nice break to get out of the AZ heat and come play on the water. Thanks again for all the love, prayers and support!

Friday, June 17, 2011

Tina's first week home...

So it has been a week since Tina has been home, and she seems to be doing a lot better. She still seems to have good days and bad days, but luckily, lately they have been good days. Much of the swelling she had when she was in the hospital seems to be going away, her heart rate seems to be a bit lower, and today she was even able to get out of the bed by herself and take about 10 steps with her walker! Might not seem like much, but for someone who has pretty much been confined to a bed/chair for the last 6 weeks, it was quite an accomplishment! Nothing like being home...

The hospice doctor was here today, and he too seemed impressed by her progress. He thinks we are going on the right path to get her better, but thinks it will definitely be more time.

I must clear something up though. While we say she is getting better with the little day to day things we post about - that we see as 'victories' - please understand how sick she really is. Why do I say this? It seems some people are thinking that she is getting better. Bottom line is she has a damaged heart that isn't working correctly, melanoma tumor(s) that are growing, and a girl that isn't yet strong enough physically to do anything about them. We need to get her heart better, so we can start some type of cancer treatment for the tumors. We are still a long way before she can start fighting again...

Now, if you know Tina though, you know that is nothing! Our girl is so strong and driven, we have no doubt she is going to pull through with flying colors. The thoughts and prayers that each of you have sent her way have definitely been felt! We thank you...

Anyway, will try to get an update again in the next few days...

Friday, June 10, 2011

Quick note...Tina is home!

Being in the hospital just wasn't the environment she needed to fight, so we made the decision to bring her home with hospice, and the doctor's all gave the OK. The hospice staff took care of getting all the hospital equipment, medications, supplies, etc...and will be dropping by every day or two to help us take care of her.

It is the first step to getting her well enough to really begin fighting this fight...and nothing like being at home. Teya was especially excited...but I think all of us were equally thrilled, as it was a long 3 weeks with her in the hospital. Now we just need to get her better...

Thanks again for all your thoughts and prayers. Know that Tina can feel them, and they are a great strength for her, so thank you and keep it up!

Wednesday, June 8, 2011

The latest update on Tina...

I know many of you have been asking, so a quick update of the latest information for you...

It started on Saturday night, when Tina's heart rate skyrocketed to almost 200, so they rushed her down to ICU and tried to get her heart rate back in check. They did an Echocardiogram on her heart to see what was going on, the result was they found out the ejection fraction (the pumping function of the heart) was only about 15-17%, where a 'normal' heart is 50-60%.

The critical issue is she will not be able to survive if they can't get that percentage up, and we have been told this isn't really something that can 'improve' - so we don't really know what the next step is. While they really don't know what caused the problems, they think it might have been caused by her latest Chemo, DTIC (Dacarbazine). Unfortunately, Chemo isn't smart enough to just target the cancer; it works on all organs in the body. Bottom line is, the heart has become the biggest issue - if that can't be figured out, it doesn't matter what is happening with the cancer...

The good news is on Sunday, she was able to move out of the ICU and back up to a regular hospital room so Teya is once again able to visit. As for the next steps, we are pushing to get checked out of the hospital, hopefully as soon as tomorrow, and try to set up hospice at home. Tina just doesn't think she can fight like she will need to cooped up in a hospital room, and we all agree. Nothing like being home! We talked to the 'Hospice of the Valley' today, and as long as we can get checked out of here, we have them on board to get us all set up at home so they can help us care of her, and get back on the path to fighting this disease. Note though, while Tina's surrounds might have changed, her condition hasn't, so still no visitors - hope everyone understands...

As for Tina, she is an amazing person...and I can’t express the strength and fight she has. There have been a number of times where Doctor's have seemed to be ready to put her on 'Comfort Care', and just let everything play out. Talking with her though, they always change their minds when they see the strength and drive she has. It is amazing. She is actually very much at peace with what is going on. No pity, no 'feel sorry for me' attitude. She says she can defiantly feel all the prayers that everyone is sending her way, and helps to give her the peace and strength that she has.

Finally, thank you to everyone for the fund raisers, yard sales, lemonade stands, etc. as people try to raise money for Team Pale Skin Is In. It is amazing generosity that all of you have displayed, and it is much, much appreciated to alienate a huge burden on our family. Also, thank you for all the prayers, kind words, calls, emails, texts, etc. While we might not be able to get back to each of you individually, know that we appreciate it. Know as much as you are thinking of us, we are thinking of you…we have an amazing network of family and friends...

Sunday, June 5, 2011

Mom Here Prayers Needed

Please stop right now and pray for Tina's heart. Her heart has began to fail and is being move to ICU as I type. I believe in the power of prayer and all of Tina's prayer Warriors. Please, Please she needs you NOW. Her heart is only functioning at 15% RIGHT NOW.

Monday, May 30, 2011

Update from Mom

Tina had grown strong enough and received her 2nd Chemo treatment today. Everything went well and she rested tons after.  She was able to get in a chair for many hours this evening. Everything the doc's and nurses are doing to help her gain strength is enlighting to watch. She was able to get a family suite at the hospital which is wonderful for Teya to visit her in. Teya came for her first visit two days ago after not seeing mommy for Seven full days. It was a wonderful visit for both. Teya is able to continue visiting Tina once or twice a day. Teya cheers when she sees mommy in a chair. We all love the baby steps she has been taking.
Her Aunt Shelly has been here since last Wed. She's also from Michigan and will be leaving on Wed morning. She has been a blessing for Tina, her family and myself.
Little reminder if you feel you want to sent flowers, please refrain and click the donate button in the top right corner instead. Cards are more than welcome just sent them to Tina's home and Todd makes sure she gets all of them.
Once again none of this would be possible without the grace of God and your prayers.

Saturday, May 28, 2011

Update from Tina's mom

Many things have taken place since we've last posted. But the first thing I would like to say is your PRAYERS are working keep them coming.

Since the stents were placed on Tuesday Tina has been very ill. She has been a strong woman through it all. God has truly given her strength through your prayers. ICU was able to stabilize Tina and she was moved late last night to the Cancer floor to continue her battle. Our little warrior had yet another procedure this afternoon. They needed to place a tube in her colon to release the gases and some fluid. Since the stents Tina's bowel has yet to become active. The procedure went as planned and they were able to release the gas and some fluids. She also had another abdominal tap to relieve yet more fluids. She rested fairly well for hours. She remains getting her nutrition from a nutrition bag now for almost two weeks. These nutrition's help keep her to stay strong  and to continue her fight.

Tina started physical therapy yesterday to help her get out of bed after being bed ridden for almost a full seven days. So for the next few days they will continue working with her helping to get her into a chair and hopefully start taking a few more steps every day.

Tina was due to have her second Chemo treatment on Friday but due to her health was unable to receive it. We are very hopeful with the new procedure she will be able to get the second Chemo treatment in the next few days.

As we watch Tina on this journey she has inspired many people here, doctors, nurses and those loved ones around here with her courage. But for all of you who have followed Tina these past five years you will not find this as any surprise.

In closing Tina asked that I share that all though she appreciates texts to her and calls. Do to the severity of her condition, she is not able to answer anyone at this time.

Keep the prayers coming because you are God's people and he is listening to you.

Tuesday, May 24, 2011

Procedure completed...

Quick update on Tina's procedure this AM...Todd here...

Seems all went pretty well. They were able to get 2 seperate stents into her colon, which covered the majority of the affected area. While there was still a tiny bit that was not covered by a stent, he was very happy with the results so that is good news! It was really important to get this procedure done so we can get Tina back on the road to recovery, so we are very thankful it went well! As always, thanks for the thoughts and prayers...

Prayers needed

Yesterday I had two successful procedures (I'll post specifics later). Today, Tuesday the 24th, I am having a very important procedure done. It is scheduled for 9am. A stent is being put into my colon. Please pray for successful placement.  Thank you!

Sunday, May 22, 2011

Welcome to the Home of Team Pale Skin Is In

Friends and Family have created a Foundation support me. Below is an excerpt from the home page.

Welcome to the Home of Team Pale Skin Is In

Simply stated, we are family and friends of Tina Sullivan who are united in support of her battle against stage IV Melanoma.

Tina is fighting valiantly and it is our vow to stand beside her. We share her discomfort, we share her joys. Most importantly, we ask that you join us. We have created Team Pale Skin Is In to serve as a foundation for which funds will be raised to assist the Sullivan family with medical expenses, treatment programs and other expenses incurred related to her fight. All proceeds go directly to the Sullivan family.

You can click on title of this blog or Website Address: http://www.paleskinisin.org/Default.aspx

Saturday, May 21, 2011

An update...

Greetings all, Todd here...

Just wanted to give everyone a quick update, as it has been an eventful few days for Tina. She has now been in the hospital since Monday (and is actually now in ICU since this morning). Doctor's really have no idea what is all going on with her...

Ever since she got here on Monday, it has been a continual race to try to get her better, but once they finally seem to get one of her symptoms in line, it seems something else starts acting up. While she was originally admitted to the hospital for dehydration (she couldn't swallow), she then started to have both abdominal and back pain, which have finally been taken care of. She also has problems swallowing due to her tongue having sores all over (while common for chemo patients, they think it might be some type of infection). Finally, last night we got a scare, as around 5 AM her heart rate spiked and she had a 103 temperature, which has landed her in ICU. Her temperature and heart rate are down, but the doctors are still trying to find some answers. The poor girl just cant get a break...

Anyway, just a quick update...will keep everyone posted on how she is doing. As of now, no idea on when she will be getting out, but it isn't looking like anytime soon. Of course prayers and positive thoughts are always appreciated!

Wednesday, May 18, 2011

MRI Results

Quick update, MRI results are awesome - no melonoma!!  PICC line is in and I will be receiving my first nutrition iv this evening.  It actually just arrived! I look forward to getting some much needed nutrition. I also have a pain pump that was installed last night. Been having a little trouble remembering to use it, but glad it is in.  Latest update is that I woke up this morning about 4am with back pain. Not lower back pain, it was up underneath my rib cage and caused a lot of pain and shortness of breathe - still is. Had a X-Ray to determine what it is.  Results are not in yet. Will update as soon as I know.

Tuesday, May 17, 2011

In hospital

Sorry, this update is from my phone, so it is short. Since my last post, I was not feeling well. I wasn't eating, sleeping, could barely get out of bed.  the progression of the cancer in my abdominal was fast. monday i went to er as i woke up and could not swallow. once there i had an mri of throat which did not show anything. docs then learned i was extremely dehydrated and admitted me to hospital. i have been receiving fluids and feel a little better. still cannot eat, so that is a major concern. trying to get a picc line put in and get nutrients that way which is iv. Tumors are causing a lot of pain that we are trying to manage. also just got back from mri of brain to check for melanoma. i have not been having symptoms. just checking.

Again, sorry so short. Just wanted everyone to know what is going on

Saturday, May 7, 2011


Sorry it took so long for me to update.  I am not feeling well. I'll start from the beginning.  On Monday, I went to my OB as I had been experiencing abdominal bloating and pain.  We thought it was my IUD.  IUD was just placed as it was needed for me to qualify for clinical trial. OB couldn't locate IUD so she did an ultrasound (thank goodness it was Monday as their tech is there on Mondays). She found IUD, which was out of place, and she also found liquid and a mass. I then went to see Mr. Wonderful (Gordon) and he ordered an MRI of abdomen. His nurses are superwomen as they were able to get me in that day.  The MRI showed a 14 cen tumor along with other nodules.  I asked for a biopsy and with the magic of the supernurses, we did on Wednesday. My stomach was so bloated that I looked like I was about 8 months pregnant and I was in a lot of discomfort.  On Thursday I was able to have the fluid drained and we drained 7lbs of fluid! Results from biopsy came back on Thursday and it's melanoma.  I began chemo on Friday. The treatment is once every 3 weeks and I'm on it for as long as it is working. Best info I could find online:


Side effects of the chemo are pretty manageable and I haven't experienced them that I know of.  I say that as for the past week I have been experiencing pain/discomfort in my abdomen due to the tumor and liquid, "heart burn" which is causing vomitting, slight nausea, no appetite and trouble sleeping. I have been a pretty sick lady.

During this time Todd was out of town for a work conference in Orlando.  Thank God for Cathy, Claudia and Annette. Cathy stayed with me all week with the exception of one, which Claudia came over and then took me to my biopsy appointment. I could not have made it through the week without them.  I was in so much pain and discomfort, I could barely walk and could not care for myself.  These ladies were the best care takers I could have had and words are good enough, but thanks ladies!  Annette picked up Teya everyday from school and kept her for a few hours.  This gave Teya much needed time away from sick momma. Again, words are not enough to express how much this helped, but Thanks Annette.  Todd got back Thursday night and my mom flew in Friay morning.  My dad comes out Tuesday afternoon.

Tuesday, May 3, 2011

Prayers Needed

Prayer/Positive Vibe Warriors, I am in need of your loving supprt. I have not felt very well over the past few weeks. We've figured out the cause and I have a biopsy tomorrow. I need a miracle, I need benign.

Results should be in on Friday and I'll post all the information sometime over the weekend.

Thanks everyone!

Wednesday, April 20, 2011

Port is coming out

So, today is the day.  My port is being removed.  I'm so happy to get rid of this thing! Change of plans though. Poor Claudia's car broke down yesterday, so CB is going with me til my procedure and then Todd is picking me up.  It is a day long process.  I'm checking in at 9:30 and the procedure is scheduled for 11:30.  The port removal should take about an hour and then I'll have an hour of recovery at the hospital before I can go home, so I'll be there til around 2:30 today. Can't wait for the day to be over and be port free!!  Also can't wait to drink something and eat something.  I have to fast and I'm SO thirsty and hungry.  Ugh!  Anyway, I'll let you all how it goes.

Wednesday, April 13, 2011

New Derm & Port Removal

I went and saw a new dermatologist on Monday.  I found them on a friend's facebook page and then found out that Todd is working on their website - is that a sign or what!  Anyway, I really like her.  She is much more thorough than my other derm.  The new derm uses a "magnifying glass" and looked at every mole. I had 3 I wanted her to take a look at and we removed those.  She also diagramed them and took pictures of 9, 7 of which we will watch.  I'm going back in 2 weeks to have 2 more removed.  I'm not worried about those we have removed or the 2 we will remove.  I guess I am at peace and feel that no matter what I'll be fine.

My nurse called to tell me that she scheduled my port to be removed Wednesday, April 20th! I can't wait!  It'll be outpatient at Scottsdale Shea Hospital at 9:30am.  I will not be put under, but will not be able to drive home. Claudia got up before the sun rose to drive me down to Tucson for the port placement and she'll be there with me for the removal.  How awesome is that! Thanks SO much my friend!

Saturday, April 2, 2011

Monthly Doc Visit

I met with Dr. Wonderful (Gordon) on Monday, March 27th for another all is good chat. I have known I am in great hands, but during this visit we were talking about the approval of Yervoy and I mentioned something about staying on my current treatment and not changing and he said "over my dead body will you change" (& then discussed the reasons why). This is the bed side manner that I want from my doc. Personal and not sterile. I want him to have passion about me and not view me as another patient to experiment with, which is how I felt about my Tucson doc. His entire practice is full of positive energy and I can feel it as soon as I enter the building. During this visit I met a woman (70 something) and she was telling me her story. She has lung cancer and has been coming to the practice for 6 years for treatment. She is not NED, but what is left of her crazies have not been growing. Simply amazing! I"m telling you this as she was saying how wonderful and positive the doctors and nurses are at the practice. I have met quite a few paitients since December and all of them have been positive and optimistic. This atmosphere is so great for patients as it is a place of hope and that in itself is a treatment.

Oh, I can't believe I almost forgot.  I asked if I could get my port removed. He seemed a little hesitant, but there isn't a need for it, so he said yes. Nothing has been scheduled yet, but I am so excited to have this thing out!!  I'm just so tired of looking at it. It is a reminder of the awful IL-2 treatment that didn't work and I don't need that negative energy flowing.  One of my nurses mentioned to me that even when their treatment is finished some patients don't like to get their port removed as they view it as a positive thing. My reply was that I got mine for a treatment that didn't work for me.  The treatment made my cancer grow and spread.  Get rid of the thing!  Also it is such an eye sore! Sorry, but vanity does play a role. Cute summer dresses, tank tops and swim suits are upon us and I don't feel comfortable wearing any of them with a lump sticking out of my chest.  My body is so full of scars and now bruises from the blood thinner shots, I just don't need an unnecessary eye sore to add to the mix.

Tuesday, March 29, 2011

Update on Melanoma Warrior

Thank you prayer/positive vibe warriors for taking Chelsea. Adventures with my enemy, into your hearts.  Her surgery went fantastic, she is recovering nicely at home and today she got the best news.  The results are back from the lymph nodes that were removed from her neck and under arm and all are negative for melanoma.  This is such a blessing! This brave young lady has a new outlook on life and I just know she will do amazing things! Congratulations Chelsea!!

Friday, March 25, 2011

FDA Approves New Melanoma Treatment - Yervoy

What an exciting day!! The FDA has finally approved a new treatment for stage III and IV melanoma. It has been 13 years since the last treatment was approved and that was the nasty IL-2 that I did back in September/October that only has a 10% response rate.  The new treatment was called IPI, the new name is Yervoy. I will not be changing my treatment, but I am SO happy that all other late stage warriors have this treatment option as a first line of defense versus a last resort.

Here is an article at Melanoma Research Foundation: http://www.melanoma.org/learn-more/fda-approval-new-melanoma-therapy-changes-landscape-patients

Here is an article from WebMD that has more information: http://www.webmd.com/melanoma-skin-cancer/news/20110325/fda-approves-new-melanoma-treatment-yervoy?ecd=wnl_nal_skin_032511

Thursday, March 24, 2011

Prayers for a fellow Warrior

I have been following a young women's blog - Adventures with my enemy . . . Melanoma - her name is Chelsea and she is 23 with stage 3 melanoma. Yes, 23 years old and battling this beast. This young lady is a fighter and has a team of supporters with her, but I would like to send in my troops. She is having another surgery today to remove lymph nodes from under her left arm and right side of her neck. My prayer/positive vibe warriors, you have all done so much for me. I'm now asking that you take a moment to send some to her and her family for calmness and strength today as she goes into surgery and for positive results afterwards (no melanoma). Thanks everyone!

Wednesday, March 23, 2011

Information on Treatments

A fellow warrior, Melanaoma in the City, posted information on the newest melanoma treatments. It is a really good article. Here is the link if you would like to read it. FYI - GSK436 is the treatment I am on.


Thursday, March 10, 2011

Great News

CT results are back and they are much better than I imagined they could be. Dr. Gordon called to tell me that overall my tumors shrunk 60%. Some are gone while the rest have shrunk! Wow, there are no words for how happy I am. I was speechless after he told me the news. I expected good results, but not of this magnitude. Poor Todd when I went to tell him I was crying and he thought it was bad news. I was just overcome with emotion and relief I couldn't stop. I had to blurt out, it's not bad news.

I'll post more when I have the details, but for now thank you Lord, prayer warriors and positive vibe senders. What a fantastic day!

Friday, March 4, 2011

Where has the time gone??

Geez, where did the last month go! Well it seemed to fly by, but the good thing is I feel great!  2 months of treament now under my belt.  I have my CT scan scheduled for March 10th. I look foward to the results and see the progress the treatment has made.

I don't think I wrote about my allergic reaction to the contrast dye for the CT scan.  It seems I now am allergic to the dye used during my CT scans.  During the last 2 scans, once the contast dye was injected I got hives all over my body.  I was hot, itchy and miserable.  The reaction during my last CT also included severe pelvic pain.  I was rushed to the hospital via Ambulance as SMIL (CT scan place) didn't know what was happening.  Not fun.  So, now I have to get my scans done at the hospital.  I'll be pre-treated with steriods for 3 days prior which we are hoping will combat some of the reaction.  Let's hope so!

In addition to my BRAF treatment, I began high dose vitamen C (or ascorbic acid).  This is given through an IV.  This treatment is being given to me because it is anti-inflammatory, anti-melanoma and immune system activating.  It also helps the body to resist spread of melanoma.  If you are interested in more information, there are some great lectures at  http://www.riordanclinic.org/education/symposium.shtml.

An update on Vita - I love, love, love Vita!!  I use her at least once per day and have made so many yummy things.  My morning smoothie, peanut butter, almond butter, almond milk, soups and to chop cabbage and cilantro for a salad (this was cool as you place the cabbage and cilantro in Vita and then add water to cover.  Turn it on quick and shut off.  Drain in strainer and you have choopped cabbage and cilantro.).  I love making my own foods!  They taste so much better and there are no yucky added extras to worry about.

Monday, February 7, 2011

Feeling Great

A quick post to let everyone know that I am still feeling great.  I had a "check-up" with the fab, Dr. Gordon, last week and everything looks good.  The tumor under my left breast is still tiny.  Dr. Gordon was excited to hear the news (I waited to tell him in person) and said that sometimes when a tumor dies it doesn't completely go away.  Kind of like scar tissue will be left behind.  I had a derm appointment in January and my skin looked normal. (My treatment has been known to cause non-melanoma skin cancers, so this is very good news.)

I'll keep you posted, have a great week!

Thursday, February 3, 2011

Photos from fundraiser

Finally got around to posting some photos from the race.  You can view additional photos on the Pale Skin Is In Facebook Community page: http://www.facebook.com/pages/Pale-Skin-Is-In/183508871660875?ref=ts

Group Photo at Beginning of Race

Teya all bundled up - it was a chilly morning!

The traveling cheerleaders: Me, Teya and Claudia

The guys

The ladies

Another pic of the ladies

Slash and Axle
Chris and Ang ( in from VA for the race)

The Feuerstein Family made a sign - love it!

Jim and Ethan cheering

Cheerleaders: Kaleigh, Tanner and Hunter

Cheerleaders: Lisa, Kaden, Linda, Jordon, Rob, Janie, Reed and Ryan

Group Photo at end of Race

At lunch: Jon, Michelle and Gentry
(Gentry is who designed the logo - he's awesome!)

Monday, January 17, 2011

A heart felt thanks

This is a hard post to write as there is so much I want to say and so much to be thankful for and it is hard to find the right words to do the thank you justice.  Also, I have to keep wiping my eyes as the emotional uplifting I had this past week is still with me.

It all started with my husband Todd wanting to run the P.F. Chang's Rock 'n' Roll 1/2 Marathon and raise funds for melanoma.  He got the word out and brought 14 other runners together to form the first Team Pale Skin Is In.  Awesome!  Our runners: Todd Sullivan, Cathy Martin, Jon Martin, Jessica Snow, Leslie Carlone, Pete Carlone, Chris Just, Ang Just, Rich Whalen, Mike Norton, Anna Schettino, Dennis Heptig, Amanda Lewis, Mandy Ghetti Chadwick and Joe Landucci.  I am sincerely proud of each runner. You Rock! And I don't just mean Slash and Axle :)

A big THANKS goes out to Gentry Smith (Gentry Smith Designs), who created our logo and designed the shirts. I LOVE the logo and the team looked fabulous. You are amazing!

Thursday, CB dropped by with a gift - a Vita Mix blender!  I have wanted one for so long and I was just starting to save up for one, when knock knock - one arrived at my doorstep via friends. Vita is so awesome and I am so excited about all the things I can make and the nutritional impact it will have - ya know I'm all about healthy food!  Thank you so much to the following families: Martin, Partridge, Valociek, Sutton, Dun, Snow, Just and Carlone. 

Friday was the Pre-Race dinner and the day I picked up the team shirts.  The magnitude of the support hit me on my way home from picking up the shirts.  I had been so busy with my treatment and planning for the event that I think it took the weight of the box of shirts to rock my soul.  All I know is, I was about half way home when I began crying. And I mean really crying.  At first I couldn't figure out what was happening and I thought I was going to have to stop the car.  Then my inner self spoke to me and translated my body's reaction - you are loved by many.  I was finally relaxed enough to feel the enormity of support/love that I have be given. It was a lot to take in all at once, but beautiful.

That night at the Pre-Race Dinner my love fest continued as everyone arrived.  It was the first party we've ever had that I didn't feel stressed about the preparations.  I was on cloud nine just knowing that everyone would be together and enjoyed every minute. It was a fabulous night!

The P.F. Chang's Rock 'n' Roll 1/2 Marathon was yesterday and it was a spectacular day filled with friends, love and laughter. My heart was filled with joy as I saw each runner pass by, as the cheerleaders supported the team along the way, as I walked up to the meeting place and saw all the team together for the first time and then again as I walked into Ruby Tuesday having everyone gathered once again.

I wanted to say something when we were all together either at the pre-race dinner or day of the event, but I didn't think I could have gotten through any type of speech.  I didn't know then nor do I know now how to put into words the enormity of love I felt when I was in the car, at the dinner and then when I walked up to our meeting place and saw 30+ people gathered wearing Pale Skin Is In shirts.  This past week I felt all warm and fuzzy, but when I saw everyone together at the end of the race, it was overwhelming and I felt like my heart exploded out of my chest.  Between the pride I felt for the runners and joy of having so many friends at this event, my soul was filled with warmth as I accepted and took in all the love and support. Thank you everyone!

I want to give a special thanks to Chris, Ang and Kelsey for flying to AZ for the event.  It was awesome that you could be there with all of us.  Although you moved back East, you have remained in all our hearts.  And for the weekend, our group was complete. It was awesome!

Another special thanks to those of you who donated to the team.  As I watch the list of names scroll by; some I know, some I haven't spoken to in years and some I don't know at all.  All of you supporting me and melanoma research and all making a difference.  The choice that everyone of you made to support the team and melanoma adds to my overwhelming sense of joy. Thank you so much!

This was the first Pale Skin Is In fundraising effort and we raised $4580! Wow, that is awesome! Words can't express my gratitude to everyone who supported the team through running, cheering and/or donating. But I sure gave it my best :)

Making a Difference

I just had to share this story of what happened to me today as it is amazing how the little things we do can make an impact on another.  I re-use the plastic produce bags that you get at the grocery store.  I have about 10 that I use along with my re-usable grocery bags.  I reallly want to invest in cloth produce bags, but that would mean throwing away my plastic ones and I just have a hard time doing that. So for now, I re-use what I have. Anyways, I went to Sprouts today and was getting avacados.  I pulled out one of my re-used bags and a lady who was just reaching for a plastic produce bag looked at me with a surprised look and our conversation went something like:

Her: "Wow, good for you!"
Me: "I can't throw them away."
Her: "It's the little things that make a difference."
Me: "I agree.  I have a daughter and I think about her."
Her: "I don't have kids, but I think about all the children and the place they will have to live. Some people just don't care." (I thought - WOW, I like this woman)
Me: "They either don't care about the negative impact plastic bags have on the environment because it isn't physically effecting them now or they don't believe what they can't see."
Her: "Yes, it is sad.  This is the only place we have to live."
Me:  "Yes, so let's take care of it."

Later, I saw her in the store and she came up to me and said "Thanks for opening my eyes today."  To which I responded, "Thanks for noticing!"  What a feeling this was.  It is such a small thing that I am doing and really I don't think that much about it.  But it felt great to have someone notice and maybe she will re-use her plastic produce bags from now on.  I guess we can all be role models and make an impact even with the smallest of things.

Thursday, January 13, 2011

Great News!

Now that I have spoken with my mom, I would like to share the good news with all of you.  Remember that lump that I found under my left breast?  Well, it has shrunk to almost nothing!  It was about 2 centimeters by 1 centimeter and now it is the size of a pea.  I can barely feel it!  I have only been on the full treatment for a week and a half and have already seen results. Amazing!!  My CT won't be until early March to look at my insides, but the shrinking of this tumor is a good indication of what we may see.  So happy!

Wednesday, January 12, 2011

Feeling Great

I've been on my full dose treatment for a little over a week now and I am happy to report that I feel great!  So far, I have not experienced any severe side effects. Thank you Lord for guiding me to this treatment and thank you for all the prayers and positive thoughts that are said for me.  I have a wonderful sense of peace and strength that I know not only comes from within me, but comes from all of you and what you do for me.

Thank you very much!

Saturday, January 1, 2011

PF Chang's Rock and Roll 1/2 Marathon

I am not a runner, but my husband and a great group of friends is running in Arizona's PF Chang's 1/2 Marathon on January 16th in honor of Team Pale Skin Is In to raise awareness and funds for Melanoma.  Currently, we have 14 runners, but the number seems to be increasing daily. A great friend, Gentry Smith, designed a logo for Pale Skin Is In and T-Shirts which runners and families will be wearing on race day.  We are going to look great!

If you would like to join the running team, let me know and I can get you the details.  Not a runner, like me :), you can still support the team with a donation.  Our fundraising page link is on the right side of my blog.

Thanks and Happy New Year!!