Adenocarcinoma

You may be asking yourself, "Adenocarcinoma? What's that?" Well, my friend, THAT is the TYPE of pancreatic cancer that I have. Yes, there is more than one. I just happened to be diagnosed with the one that 95% of patients are diagnosed with. The one that is considered the most "lethal" of all cancers. So, don't be surprised if after you tell me, "I know someone who had pancreatic cancer and they're still alive after ________ blank number of years! You can beat this, too!!" I then ask you, "Did they have adenocarcinoma or Neuroendocrine?" There IS a difference!! Patrick Swayze had adenocarcinoma. Steve Jobs had neuroendocrine. One is rapidly growing (adenocarcinoma) & usually deadly within a year and one is slow growing (neuroendocrine) and, unless you're diagnosed at stage 4, usually has better outcomes than adenocarcinoma.

Adenocarcinoma, stage 2B...that is MY diagnosis. I am now stage 2B recurrent adenocarcinoma. I am NOT stage 4 and NEVER will be because I was not initially diagnosed with stage 4.
Another lesson in cancer I have learned. You ARE what your initial diagnosis is. Now IF my cancer had metastasized, I would be: Stage 2B with metastasis to (fill in the blank to whatever organ it has spread). Now you know WHY I will never be stage 4.

I did receive good news today. You see, with adenocarcinoma, there is a tumor marker they measure in the blood. It's called CA19-9. Normal range is 0-37. Pre-Whipple, I was 270. Post-op I was down to 15!! Sadly, with the recurrence of the cancer in my lymph node, it rose to 632!! Fortunately, going to a top notch cancer center & having one of the best medical oncologists in the country for pancreatic cancer, I am responding to the chemo in the clinical trial. Not that it has been a cake walk. It has not. Folfox is rough! GI symptoms and neuropathy in my hands & feet?!?! No bueno!! But, I am still here and am improving. How do I know? That crazy CA19-9 and my CT scans! My latest CA19-9 is down to 93!! So, I'm getting closer to 37!! Hopefully, within the next few months, they will declare me NED (No Evidence of Disease) and I will be off of chemo!!

Next blog...cyber stalkers and what you can do when dealing with a psychopath that has been released from jail.

Until then...much love to all!!

Wow! Was that some break from my blog!

I'm so sorry for not keeping you up to date!! I've been busy, LIVING!!
I've also seen a couple of my fellow pancreatic princesses pass, which was extremely difficult! They both were diagnosed with the same cancer & the same stage. God bless their souls!

I'll compose a "real" post tomorrow about what has been going on in the world of the Pancreatic Cancer Princess, tomorrow.

For now, I'm living & working, like a normal week. No chemo this week. :)

Blog pause

Sorry about the "blog pause". I've had some challenges I've had to deal with over the last couple of months and my blog was put on the shelf for awhile.

Tomorrow I'll be spending the day at the hospital. However, this time it's not me! My 82 year old Father is having his aortic valve replaced. Please say a prayer for him. I know he is in God's hands and also in the hands of an excellent surgeon. Whatever His will, will be.

So, while I'm at the hospital tomorrow, I believe I will dive back into my blog. I'm even going to go so far as to rededicate myself to my blog. You ask, "Well Alyson, how are you going to do that?" Here's how: I'm going to commit 30-45 minutes a day & put it on my calendar. Silencing my phone and focusing on my thoughts, feelings and ideas I'm having. I've been told by many of my friends I need to "get back to my blog or journal my journey on a daily basis." They've even gone so far as to encourage me to help others with an insiders view of Pancreatic Cancer. I believe it's very fitting that I'm doing this the week of our biggest Holiday, as a Christian.

One final thought for today. What would you all like for me to talk about?

Stay tuned...same bat time, same bat channel ;)

How Do I Stay So Positive?

That was a question I was asked recently.  I suppose there would be many who wouldn't be optimistic. I understand that. First, I was diagnosed with what is called, "the most lethal" cancer on the planet. I underwent the most invasive surgical procedure, the Whipple, & completed 6 months of chemotherapy. Fully believing that I would NOT have to face pancreatic cancer again. My Oncologist was so sure that I had beaten it also that he suggested I get my port removed within weeks of finishing chemo.

Unfortunately, that wasn't the end of my journey. I love the quote, "Man plans, God laughs."
It's NOT my plan, it's God's plan. The cancer has returned & I am undergoing chemotherapy, again. Fortunately, I am in a clinical trial and in a short amount of time, I am responding well to treatment and the tumors are shrinking. Yet again, I am breezing through without the need of Neupogen/Neulasta, NOR have I needed a transfusion. Friends jokingly call me, "Wonder Woman." I'm not sure about that, but I am certainly blessed.

Back to staying positive. Do I always? No. I have my down times, but the majority of the time, I am reminded of all the blessings in my life. IF I do not succeed in this battle, I will still have won! I believe the biggest reason I remain positive is that at the age of 3, my parents were burying my older sister. She was only 5 and a half. She died as the result of an auto accident in Corbin, KY. She was with a family friend who survived, but lost her son in the accident. Then at 20, one of my best friends died as the result of an aviation accident. She was beautiful! She was also a very talented singer who knew exactly WHAT she wanted in life. So, you see, I have lived a great life and have experienced so much more than my sister & my beautiful friend. Yes, I want more years to see my son graduate from college, marry and have children. Will I be here? I believe so. I have a great Oncologist who is a top researcher in the field of Pancreatic Cancer. However, IF I'm not, I've been blessed with 30 more years than my friend & 45 more than my sister. I've been married, divorced and privileged to be the Mom to a great young man. That ALONE is something I'm sure my sister & my friend would both have been great at...being a Mom.

So, when I start to get depressed, I look at my son and I thank God for each day. Because no one is guaranteed a tomorrow.

Man plans, God laughs.

TB2G for another day.

WOW! A lot has happened in the last 6 weeks

Just wanted to jump on for a minute to say: a LOT has changed in the last few weeks and I'll be posting about it from a sunny, tropical location on Christmas Day!

Until then, today was MY day and I am living life!
Best weekend of December, so far!
Saw the kid, ate some great pizza & took in a great movie!

I hope everyone is having a magical Christmas/Holiday time with family & friends!

Remember, there are no guarantees in life. It can change in a nanosecond.
Treat others with respect and love and it will be returned to you ten-fold. Treat people poorly, lie, cheat and steal from them...it will come back to you in bad karma exponentially.

This Christmas I am grateful for and blessed with the most loving and generous friends and family on the planet!

My Christmas came early!
LOVE YOU ALL! MORE! INFINITY! NO TAKE BACKS!!

Next blog (I promise I'll get back to blogging consistently for my updates and successes with Dr Awesome), new treatment, clinical trials and yes, Pancreatic cancer can be beaten...just watch me. ;)

We're off to see the Wizard!

Dear Lord, I am so thankful that You love me unconditionally. 

Please chase away destructive thoughts that keep returning to 

take away my confidence in You and Your work in me. 

I want to rest in You and Your love.

TB2G-Amen

This is the prayer I MUST say every day as I continue my challenge with Pancreatic Cancer. 

It just couldn't be easy. That wouldn't fit with the story of my life. Nothing in life that is worth having is ever easy. It takes hard work, dedication & faith. Faith in yourself, in those you surround yourself with and faith in God.

I have learned not to assume ANYTHING! Especially when it comes to cancer. I assumed it was all behind me. I assumed I was in the elite group of Whipple & pancreatic cancer survivors. Well, I AM a survivor, with a twist. I have a little more of a challenge to go through. 

I am so very blessed to have a great Oncologist & facility filled with experts. I learned yesterday that not only is "the witch" back, but it is NOT a local recurrence, but it is metastatic. 

The Tumor Board met yesterday morning and upon reviewing my latest CT scan, one of Dr. Awesome's colleagues noticed a change to the peritoneum. It appears that I have 4-5 enlarged lymph nodes which is indicative of disease in the peritoneum along with the original area of suspicion, the surgical site. So, surgery and radiation are no longer options for me, but chemo is! Yay! I'll take "Life Saving Chemo" for $1,000, Alex! Oh look! It's "DOUBLE JEOPARDY"!!! I WIN! Well, not quite yet, but I will fight and I will win! Fortunately, there is no metastases to the liver or lungs and I have options in chemotherapy! That is something that wasn't heard with this cancer as little as 5 years ago.

After speaking with Dr. Awesome, I believe I am going to go the route of the clinical trial. I really do feel like I am in the Land of Oz and am traveling down the Yellow Brick Road. I know that I'm going to go through the woods and have to deal with the Wicked Witch of the West. I know that along this route, my family, friends & faith will, without a doubt, carry me through. This will NOT be easy, but I DO believe in miracles and I DO believe with faith, love & support, all things are possible. 

The clinical trial of choice is a randomized trial of Selumetinib (AZD6244) and MK2206, an Akt Inhibitor v. mFolfox. My Dr. Awesome is going to be keeping close tabs on me with my CA19-9. Yet another thing I'm blessed with in the world of Pancreatic Cancer, my tumor marker is sensitive and very indicative of disease. The other choice I have is to go straight to Folfox, but I'm going to try to help my Dr. Awesome and the Pancreatic  Cancer community and take part in this clinical trial. The only way we advance medicine is through clinical trials. Plus, I'm hoping that this may be the trial and the drugs that they say, "Stop the trial early! Every PDAC patient should be on this!" I've seen that with other trials in other disease states, so I'm hoping for a little Allycat positive mojo to work some magic! 

So, that's where we are tonight, my friends. I have a recurrence of pancreatic ductal adenocarcinoma with metastases to the peritoneum.

I will be starting chemotherapy next week. I will CONTINUE to work. Dr. Awesome agreed & believes it is best for me to continue working. I will be moving to Nashville because it just makes sense to be close to Vanderbilt & Dr. Awesome. Also, it will be easier to keep a regular schedule vs traveling every week for chemo. I am rallying some of my amazing friends & family in Louisville to pack, move & sell my house. 

Please keep Kyle & my family in your prayers, as they will need support as we travel the road of recurrence. While your at it, if you could throw in a good word for me too, it would be greatly appreciated. 

I'm not going to lie...I'm scared, but again, my gut is telling me, "You can beat this!" And I believe I can! 

Thank you for the love, support and prayers...

We're off to see the Wizard! 

Goodbye 49, HELLO 50! So glad to see you!!

While some of you are not on Facebook, you may not be aware of my latest developments.

Well, first things first: tonight is my last night of my 40s. Goodbye, 49...HELLO 50!!!
Let me tell you, it is a WELCOME & BLESSED birthday! Even after a tough week!
My birthday weekend began with a visit from my beautiful friend from Austin & staying with another beautiful friend in Nashville. Visiting Dr. Awesome, getting some medication for pain management & a procedure to gather some information moving forward.
Today, part of my day was spent with an amazing group of people at, "Linda's Hope". They held their 3rd Annual Chili Cookoff and I was one of the special guests of the founder, Meredith Crowley. What an amazing young woman! She is absolutely stunningly beautiful, both inside and out! She and her husband, Taylor work tirelessly in raising funds and awareness for my Dr. Awesome and his great Pancreatic Cancer program at Vanderbilt. HUGE THANK YOU to Meredith & Taylor for my decadent chocolate birthday cake! Which topped off my Saturday evening with my fabulous son & his friends at my house. I wouldn't trade places with anyone for the life I have, challenges and all, I am one blessed girl!! <3
Now for my latest medical update:

Thursday afternoon, I arrived at Vanderbilt in quite a bit of pain. My back pain has increased because there appears to be a small recurrence of cancer. They administered 4mg of Dilaudid and I was able to rest comfortably Thursday night before my procedure. My beautiful friend from Texas flew in to be with me & she drove me to my other beautiful & generous friend's house to rest & enjoy our time together. It was like an old-fashioned sleepover in grade school! Albeit, I was heavily dosed with narcotics! 

On Friday I underwent an Endoscopic Ultrasound with the hope of obtaining a sample for biopsy...No such luck. The mass, while small, is in the celiac axis. It proved to be a bit dangerous to stick a needle in it based on the location. My amazing Gastro@Vanderbilt tried to do a nerve block. We thought it was successful initially, but I am still experiencing pain. She informed me that it was a 50/50 chance of success.

Where we are now, The Radiology Report:

Small mass that appears to be a local recurrence

Liver is clear (except for the same small hemangioma that has been there since Feb.)

Lungs are clear

BEST NEWS: NO METASTASIS

Where to go from here:

Tuesday my case will be presented to the Tumor Board...all experts in their field. I may undergo another resection, chemo, radiation or combination of these. My tumor will undergo genetic testing to see what therapy it responds to best. Chemo is a necessity and I WILL lose my hair this time.  sad face...

HOWEVER, here's the positive: it is local AND its small! I responded well to Gemzar, the first round of this challenge. So, I will in all probability be given Gemzar again with a combination of added therapies/drugs. I will most likely be enrolled in a clinical trial that will be much more aggressive than my previous chemo. 

I ask for continued love, support & prayers.

I cannot begin to express my gratitude, as I just can't find the words. I become extremely emotional when I feel the outpouring of love, comfort and support from my family & friends. 

Get ready for round 2 and hopefully the last round of knocking the witch out. 

In the words of the Marathon Goddess & Heather Lilla, "WE GOT THIS!"
Surrounded by love also helps...#blessedgirl #truelove

Love y'all more...infinity...no take backs