Halfway there!

So, I haven't been so great with keeping up with my blog in the past week....SORRY!!!
I was busy with chemo and visiting with some of my loving and supporting friends! I even played the role of the witch, in Snow White with the beautiful Lauden! It was too much fun being around a 2 and half year old that kept saying she was 5! Love, love, love Tracy, Baba, Lauden and the rest of her crew! I'm blessed to have friends who are beautiful, selfless, generous and loving! I hope I can repay her generousity in someway, someday. <3

So, here is the latest:
I am now OFFICIALLY halfway through chemotherapy!! YAY!! I was able to get the third infusion of the third round. I've learned so much about Oncology and chemotherapy, but a diagnosis like mine and being a left brain kindof girl, I research everything!

I'm one of the lucky and few that are able to be on the protocol of 3 weeks on, one week off for Gemzar, so far! According to my Onc NP, most people have to do 2 weeks on, one week off. For 2 rounds (months) in a row, my bloodwork actually IMPROVED from infustion 2 to 3. I swear, it has to be the blackstrap molasses! If you know anyone who is on chemotherapy, it's at least worth a try to bump up their red blood cells with the molasses.

This weeks infusion was, as usual, a crap shoot. I lucked out with my bloodwork improving. The worst part of chemo is the port flush. If you've been there, you know what I'm talking about. That awful smell/taste when they flush your port with saline and then heparin. YUCK! YUCK! YUCK! It's what makes me nauseated!

After I had my infusion, I went and met with Dr. Georgia Weisner, Geneticist. We talked for over 2 hours about family history and my cancer. Based on the information I had, it appears it may have come from my Dad's side. It was interesting being on the other side of genetic testing. There isn't a panel for the genes she wanted to test me for, so we opted for 2 separate tests. She mentioned Lynch Syndrome, which I have since researched. She is also testing me for BRCA 1 & 2, FAMM and a host of others I can't recall, at this time. I should have the results back in 6-8 weeks. Sitting with Dr. Weisner really made me miss work! I can't wait to get back!

Now for my reaction to infusion 3, round 3. The headache, bodyaches and fatigue still continue and I'm on day 4 post infusion. Still no appetite, but I had gained back 7 pounds since surgery! I know my chemo could be much harsher, but I have to say, any chemo SUCKS! You never know how you're going to react. I was hoping for a consistent response to chemo, but that hasn't been the case for me. I continue to lose more hair and am seriously considering just shaving my head at this point. For a girl, it's really hard to lose a handful of hair everytime you take a shower and then run a wide tooth comb through your hair and have another handful come out.

On a final and sad note, a precious 8 and half year old boy lost his battle to pancreatic cancer yesterday. Please pray for his family.
You see, this is not a cancer that only affects fat, diabetics as many Doctors have been trained to believe.
This cancer does not discriminate. Last year, a 15 year old young, athletic boy from Tennessee died from PC. I know of a young, beautiful 28 year old battling stage IV PC, a 32 year old young man with Stage III and a 40 year old mother of 4, with stage IIB. There is NO profile for this cancer. Yes, if you're overweight and diabetic, you are at greater risk, but for those, like me, they can't figure out why. Hopefully, I will have answers from my genetic testing. In the meantime,  please donate to pancan.org or lustgarten.org to help raise research dollars.

Thanks you!
Love y'all!

CA19-9 is DOWN! TBtoG

Infusion #8 and ALL day at Vanderbilt! 

Here's my latest update:

After being delayed by an overturned tractor trailer & detoured off I-65, I arrived at VICC yesterday for blood work, an appointment with my Oncology NP, infusion #8 AND an appointment with my Endocrinologist.

Bloodwork-check! All looked good for the infusion and we discussed black strap molasses (thank you, Tami O!) & my latest CA19-9 levels. I'm very fortunate & blessed to have the response to surgery & chemo that I've had. To have a level of 15, 12 weeks post operatively is miraculous. If all continues on this path, I fully expect to remain cancer free for many years.

I had not seen my Endo since my diagnosis. The look on her face was priceless. She read my chart prior to coming in to see me, obviously. On my first visit with her, I wasn't real crazy about her, but yesterday was a breakthrough. Her look showed true concern for me. She then shared that her father had PC. Like most, he was not diagnosed until stage 4 and sadly did not survive very long. We discussed my cancer and she, like other Doctors, commented, "You're doing better than any of my other patients who've been diagnosed with Pancreatic Cancer." To this, my only response is, "I'm blessed." We finally discussed my Hashimoto's & autoimmune issues and my blood sugars. I now have a monitor to check my blood sugar. She isn't concerned about them being too high, yet. She's more concerned about hypoglycemia. It appears, post hospital discharge, my blood sugars are a little low and she's concerned. I'm having blood work done next week to check my insulin levels. 

While in the infusion center, I met another PC survivor. A beautiful mother of 4, ages 5-10. Another survivor who does not fit the profile. This is what boggles my mind about the challenge she and I face. We don't fit the "profile" that physicians have been trained to believe would be a pancreatic cancer patient. On a previous blog I posted the risk factors. None of which my new friend or I fit. This is where I need the help of my friends. You see, this cancer does not discriminate. Anyone can get this. There are cases that range from an 8 year old boy; a 14 year old teenage boy; young, beautiful, vibrant 20something newlywed; 30something year old, healthy, athletic father; to 40something Moms. I need my friends to help raise awareness that this is NOT a cancer for old, diabetics, who are overweight, smoke and are mostly men. Yes, you're at higher risk if you're overweight & diabetic, but this cancer doesn't discriminate. We need more research dollars to find the answers as to why it's on the rise & why so many younger people are getting this horrible cancer.

I know I'm blessed to have caught my cancer in an earlier stage. I know I'm blessed to have an "easier" chemo regimen, than most. I can breathe a little easier with a CA19-9 of 15 and say, there is no evidence of disease. Yet, I feel guilty that I'm doing so well for a PC patient. Why am I responding so well to treatment and others are struggling? I wish I knew. I wish all my new friends who are PC survivors could be cancer free. I pray everyday for anyone facing the challenge of a cancer diagnosis. It's a club NO ONE wants to be in. I wouldn't wish this on my worst enemy. 

As always, I'm grateful for the support & love!

I can breathe! 

Genetic testing

Kudo's to Angelina Jolie for bringing attention to genetic testing for cancer! Did you know the BRCA1 & BRCA2 are also linked to pancreatic cancer for both men & women? I'll be going through this testing at Vanderbilt next week.

KNOWLEDGE IS POWER:

A woman’s lifetime risk of developing breast and/or ovarian cancer is greatly increased if she inherits a harmful mutation in BRCA1 or BRCA2. Such a woman has an increased risk of developing breast and/or ovarian cancer at an early age (before menopause) and often has multiple, close family members who have been diagnosed with these diseases. Harmful BRCA1 mutations may also increase a woman’s risk of developing cervical, uterine, pancreatic, and colon cancer (1, 2). Harmful BRCA2 mutations may additionally increase the risk of pancreatic cancer, stomach cancer, gallbladder and bile duct cancer, and melanoma (3).

Men with harmful BRCA1 mutations also have an increased risk of breast cancer and, possibly, of pancreatic cancer, testicular cancer, and early-onset prostate cancer. However, male breast cancer, pancreatic cancer, and prostate cancer appear to be more strongly associated with BRCA2 gene mutations (2–4).

Kadouri L, Hubert A, Rotenberg Y, et al. Cancer risks in carriers of the BRCA1/2 Ashkenazi founder mutations. Journal of Medical Genetics 2007; 44(7):467–471.

Thompson D, Easton DF, the Breast Cancer Linkage Consortium. Cancer incidence in BRCA1 mutation carriers. Journal of the National Cancer Institute 2002; 94(18):1358–1365.

The Breast Cancer Linkage Consortium. Cancer risks in BRCA2 mutation carriers. Journal of the National Cancer Institute 1999; 91(15):1310–1316.

PDQ® Cancer Information Summary. National Cancer Institute; Bethesda, MD. Genetics of Breast and Ovarian Cancer (PDQ®) - Health Professional. Date last modified 04/24/2009. Available at: http://www.cancer.gov/cancertopics/pdq/genetics/breast-and-ovarian/healthprofessional. Accessed 05/15/2009.

Kiss my PancreAss

Love this! You can buy this on Ebay! Help raise awareness!

Btw, great night at Actor's Theatre last night! Many thanks to my beautiful friend, Kelly! I laughed my stache off!

Kiss my shrinking, Southern girl PancreAss! 

It's a beautiful day! The kid is home for the weekend! Love my life! <3

One Million Moms Can Move a Mountain

I believe we can help my friend reach her goal of getting one million likes for her Facebook page.

https://www.facebook.com/pages/Million-Dollars-for-Mom/265267073617731

She lost her beautiful Mom to this insidious bitch of a cancer, pancreatic adenocarcinoma & we need your help!

I firmly believe in Divine Intervention & believe that WE CAN MAKE A DIFFERENCE!

If you have a Facebook account, please go to Million-Dollars-for-Mom. Like AND share her page and help us raise awareness about pancreatic cancer.

It's called the most lethal cancer for a reason. The overall one-year survival rate of people with pancreatic cancer is 26%, and the five-year survival rate is approximately 6%. If the cancer is detected at an early stage when surgical removal of the tumor is possible, the five-year survival rate is about 22%. 

This cancer does NOT discriminate. It can happen to ANYONE! 

I'm one of the lucky ones, I survived "the Whipple" and am responding very well to treatment. My fabulous Oncologist has said, "I believe you're going to beat this." You know what? I BELIEVE HIM!

I believe it's Divine Intervention & Purpose for me to help raise awareness and have our voices be heard.

Please help us! Please join our fight and help my friend get One Million likes and ultimately One Million Dollars for Mom to go to Pancreatic Cancer Research!

Thank you!
Love y'all! <3

Silver lining

I've always been the kind of girl that looks for the silver lining. Like many, I've had my challenges in life. Some are of my own doing and some are due to circumstance. From either way a challenge has been placed before me, I look for the silver lining. I've always told my son, "It's a dark cloud, but there is always a silver lining."

So, what has been my silver lining from this challenge? I've had many!

First silver lining: Well, for one, it's not my greatest challenge. That was when my son was diagnosed with Epilepsy. I can handle this. I'm grateful that it wasn't one of my loved ones or friends who had to hear this diagnosis.

Second silver lining: Vanderbilt! I know, you may be tired of hearing how fantastic Vanderbilt is and my amazing Oncology team, but they really are! I didn't have to travel to MD Anderson or Mayo to get one of the best Oncologists in Gastrointestinal Cancers, specifically in pancreatic cancer, in the country. Along with my amazing surgeon! It's because of my amazing team that I am beating the odds and will, in all probability, now live much longer than expected for a PC patient. I'm praying that all continues in a positive manner. My second CA19-9 came back at 15! 12 weeks post op at 15!! 5 weeks post op it was 17!! <38 is normal. From all indications, this means that because I chose Vanderbilt, my survivability just went up significantly. Let's continue to pray for more positive outcomes!

Third silver lining: The amazing friends I've made who are facing the same diagnosis or have had a loved one diagnosed with pancreatic cancer. Yes, it is a horrible diagnosis. It's a club no one wants to be in, but what I've found is a close knit family-like system of support.

You see, even on a dark day, I can see a silver lining. My life has been blessed. I have no regrets.

Life is good & so is God. :)
Breath in that Oxygen!

I had become a cancer patient

"I remember looking down at people in the street--distant & oblivious, going about their everyday life. I had been cast out of that life, separated from its goal-oriented busyness & its promises of joy by the prospect of a probable early death. No longer wrapped in the comfortable mantle of physician & scientist, I had become a cancer patient."~David Servan-Schreiber

When I first read this quote, I cried. It so accurately describes how I feel. I still look at people and think to myself, "You're living your everyday life & I'm fighting for my life."

You see, I don't look like a cancer patient. Yes, my hair is thinning and I've lost weight, but when I wear a wig, I look like the same Alyson everyone has known for years. My reality seems to have really hit home today. I am a cancer patient.

I no longer have to get up and go to a job that I love. With chemo, it's so sporadic as to how I'm going to feel from one day to the next, there's no way I could do my job to the standards necessary. Plus, there's that whole blood count thing & infections I have to worry about. While everyone else is busy with getting up, making coffee, showering and going on about their ordinary day, I'm at home thinking about what can I eat that won't upset my newly designed gastrointestinal system. I'm at home wondering what's going on at my place of work. I'm at home feeling like I can barely make it from my bed to the couch, some days. I don't really watch TV, so I spend most of my days reading and researching. I'm bored out of my mind, but my body is not cooperating with me to function at even a semi-normal rate, some days.

My old life is gone. I'm in limbo land right now. I'm battling what they call, "the deadliest cancer". I'm doing well and have met several long-term survivors of pancreatic adenocarcinoma. One is a 12 year survivor! How I hope I will be like him. If I live 12 more years, I'll be 61!

Right now, my biggest struggle is this limbo land. The cancer is out of me, but I have 12 more chemo sessions. This is my off week from chemo & I suppose I'm feeling a little off because my new routine has been: Sunday, prepare for Nashville & Monday, labs & chemo. And now, I don't have anything to do, but rest, which I need. I know my body took a hit with this last chemo session. I probably could use a transfusion, but I'm too exhausted to even go to the ER. I keep hoping tomorrow I'll feel better and have more energy. I'm not short of breath or dizzy, which they said I need to watch for and seek medical attention, should I have those symptoms. As I said earlier, I'm bored, but my body is not cooperating with me & it's depressing.

It sucks being a cancer patient.

I'm trying to get some normalcy back to my life, but I can't really do it in limbo land.

I'll be glad when chemo is over and I can get a somewhat normal life back...at least, that's what I'm praying for...that and more energy!

Needing some oxygen tonight!

What were my symptoms?

Next to, "How are you doing, really?" this is the question I get frequently from friends: What were your symptoms?

Well, you see, that's part of the challenge with pancreatic cancer. The symptoms are that of many, often benign conditions and are really quite common, especially for a woman of "my age". haha

My journey began last summer when I found a mass on my thyroid. I was also having some GI issues, but have battled those most of my life. I was informed by my Primary Care Physician there is a strong correlation between Hashimoto's Thyroiditis and Celiac. You can also throw in the fact that my mother had Hashimoto's & Ulcerative Colitis and I was in the perfect storm to follow in her footsteps. Never in a million years did pancreatic adenocarcinoma appear on anyones radar.

Last summer I went through an EGD and colonoscopy. My wonderful Gastroenterologist found an ulcer and a precancerous polyp in my sigmoid colon. I was thankful I had a colonoscopy at the age of 48 instead of 50, thinking I just dodged the bullet of colon cancer. However, I was still having symptoms. It was attributed to gluten sensitivity/celiac and an allergy to wheat and dairy. I changed my diet significantly and moved on with my life. However, hindsight being 20/20, I was still having symptoms, but chalked them up to being a woman of "my age". At least that's what one of the 8 Doctors that I saw last fall said it was. Yes, I saw 8 different physicians/MDs trying to figure out what was going on with my body.

My biggest complaint was fatigue. Not your ordinary, "I'm tired because I work and travel so much.". It was your, "I'm tired to the bone and can't think of anything but sleep!" My sister kept telling me to suck it up and it was just part of having a thyroid condition, but I knew my body and I knew I wasn't supposed to feel that tired. I kept pressing my PCP, but never would we have thought it was pancreatic cancer.

On top of the fatigue, I had an unusual increase in burping, gas and feeling bloated. Of course, I thought it was just due to the change in my diet. I was eating more of a vegan diet, so naturally what goes with that? Gas.

Then in January, the biggest change occured and it really scared me. I had a change in my stool. I know, NOT the sort of thing that you want to talk about. It's not pretty, but this cancer is not pretty either. I'm hoping to help educate others so that they don't have to take this journey. So, back to my poop. :) There was a noticable change. First, it was floating. I didn't pay much attention to it until it changed color. Yep, the color matters. In late January, my stool was floating and it was an ash gray in color. I immediately called my Gastros office and spoke with the nurse. She knew something was up, but didn't seem to think of it as an emergency. The soonest I could get in to see my Gastro was on 2/21/13. I thought, "Cool. If they thought it was that big of a deal, Laszlo would see me this week." I continued on about my business and never thought I had as big of a challenge ahead of me as I do now.

I googled my symptoms and yes, pancreatic cancer came up, but I never thought that would be me. I mean, I don't fit any of the risk factors. Which are:
Age-average age at diagnosis 70
Gender-Male...men are 30% more likely to develop pancreatic cancer than women
Race-African Americans are more likely to develop it than caucasians
Smoking-accounts for 20% of pancreatic cancer cases
Obesity
Diabetes
Chronic pancreatitis

So, you see, they don't really know why I developed pancreatic adenocarcinoma.
I'm going for genetic testing at Vanderbilt and have since learned of several family members who have died from GI cancers. So, if I were a betting girl, I bet I have a gene that predisposed me to this bitch of a cancer.

My final thought on this is: LISTEN TO YOUR BODY!! Keep pushing until you get resolution.

Goodnight & breathe in the oxygen.