Music

"I was born with music inside me. Music was one of my parts. Like my ribs, my kidneys, my liver, my heart. Like my blood. It was a force already within me when I arrived on the scene. It was a necessity for me-like food or water."~Ray Charles

This is one of my son's favorite quotes. Kyle was born with music inside of him. When he plays his guitars, my heart smiles.

“One good thing about music, when it hits you, you feel no pain.”~Bob Marley

This is so true. I feel no pain when I listen to music. I'm not worrying about dying, because I'm living when I listen to music. I live because music means memories. Memories of my youth as a kid growing up in Louisville. Music means memories of my teenage years in Knoxville. Memories of my college years: the bars, the concerts, the beach, Spring Break. Most importantly music means memories of my son. Music means living and loving. Music means guitars, guitar lessons, the band, the concerts, the memories, the love and free from pain.

I spent some time this weekend with a friend of mine in "Music City". Even though I once lived there and have frequently visited, Nashville, I had never been to the Country Music Hall of Fame, nor had I been to Studio B. Thank you, Nicole, for adding to my music memories. For a brief moment, I was no longer sick. I was reminiscing about my Mom & the romance she and my father had. I was reminiscing about the artists I've seen with my best friends, boyfriends and son over the years. Feeling grateful and feeling the love from all those memories and all the great music I've enjoyed.

I recently asked my friends to tell me a song that reminded them of me. I had 2 reasons for this. One was to play them as I receive my chemo. The second was to have a list for my memorial service. I want my memorial service to be fun and filled with music. I want everyone to know, my memory will forever be there in a song. 

"A song will outlive all sermons in the memory."~Henry Giles

I've learned

This is a happy post! <3

21 years ago yesterday, my life forever changed and I learned what unconditional love was all about.
My challenge with cancer is not my first brush with my mortality. When I was pregnant with Kyle, I was diagnosed with preeclampsia. For those of you that don't know what preeclampsia is, it is a life-threatening condition for pregnant women. To make a long story short, I was hospitalized several times and ultimately had to deliver Kyle via c-section 7 weeks early to save my life. He was taken to the NICU@East Tennessee Children's Hospital, while I was kept at Ft. Sanders. We both had a very rough time, post-partum. We both developed complications that could have taken our lives. Kyle was in greater danger than me. While I had just had him, I couldn't imagine my life without him. We were one of the fortunate ones who both survived preeclampsia. The only long-term complication we had was, Kyle was diagnosed with Epilepsy at age 6, but he never let it limit his "new normal".

You see, I've learned the most about life and love from someone 28 years younger than me.
I've learned patience, unconditional love, forgiveness, compassion, perseverance, strength & courage from Kyle. From day one of his life he's been feisty and a fighter. Yet, he is also, loyal, loving, kind & compassionate. Even with his Epilepsy, he would often comfort me and tell me it would be okay. And you know what? It did all turn out okay. I'm still learning from this young man. I'm learning my heart can never be filled enough with love for him. I'm learning I couldn't be more proud of the young man he has grown up to be. I'm learning I too, can fight and persevere. I'm learning that he loves me as unconditionally as I love him. I'm learning it's okay to let go of control and just let things happen. I'm learning I'll be okay with whatever outcome comes from my battle with pancreatic cancer. I'm learning my son will be okay with whatever outcome comes from this battle. Why? Because he will. It's just what he's made of.

I've learned all this because of the 21 years I've watched a premie fight for his first breath. I watched a child, then teenager, fight for a normal life in spite of Epilepsy. I've watched a young man fight to overcome many challenges young adults face as they are spreading their wings into independence.

I've learned to pray for another 21 years of unconditional love. I've learned I'm going to be alright & Kyle is too. I've learned I'm loved, because I love. 

My Oxygen mask is on...go out and love today. <3

Vegan Diet

http://www.huffingtonpost.com/kathy-freston/vegan-diet-cancer_b_2250052.html?utm_hp_ref=fb&src=sp&comm_ref=false

Courage

Courage is being scared to death but saddling up anyway.
- John Wayne

I found this quote this morning. So many people have told me how courageous I am. I keep thinking, "Man, do I have them fooled! I'm not courageous, I'm scared to death!" 

I am scared to death. Every little pain I feel, I think, "Crap! The cancer has metastasized!" I cry every day. Not because I'm afraid of dying, I'm not. I honestly believe my departure from this world will be a peaceful one. I was with my Mom as she passed away on Feb. 9, 2011 & she quietly snuck out on us. I envision my departure much the same. I gave my Mom her last dose of morphine. My sister & I were sleeping in the same room with her. I awoke at 4 a.m., wiped her mouth and her face with a washcloth, gave her the morphine, kissed her forehead and told her I loved her and went back to sleep. Lana awoke at 6, brought the kids over to kiss "Mimi" before they went to school. I went back to sleep and awoke at 8. I heard Daddy in the kitchen making coffee, Lana was back and talking with Daddy, Tim was asleep in his room. I rose and looked at Mom. I knew something was different. I couldn't move my feet to go to her. I looked at her and said to Lana, "Mom's color has changed." Lana came over and said, "She's gone." I still couldn't move. I was frozen. My Mom had snuck away and made her departure quietly while I slept beside her. I envision my departure much the same way, quietly with the help of morphine. I'm just hoping it will be many years from now after I've wreaked havoc in a Senior Facility with my best girlfriends.

I'm not courageous in my battle with Pancreatic Cancer. Courage to me are the kids who are battling cancer or some chronic medical condition. Courage to me are our soldiers who have sacrificed all so I can have a blog to bitch about how much it sucks that I have cancer. Courage to me is my son who has lived with Epilepsy since the age of 6. He never let it limit what he could do. He wouldn't let his completely neurotic mother put him in a bubble. He lives his life! I'm not courageous. I'm just a Mom fighting for more time with my amazing son. I'm not courageous, I'm scared to death. Im scared I'm not going to have enough time to tell my son how completely great it's been being his Mom. I'm scared I'm not going to have enough time to tell him all the little secrets to life I've learned on my journey. I'm scared I'm not going to be able to hold my grandchild and see the likeness of the "little Kyle" I love so much. Those are the things that terrify me...not dying. I've seen death. It was easier on my Mother than the rest of us. The difference is, my Mother was 80 when she died & 70 when she started her departure with Alzheimer's. I want 20 more years! 

So, you can see by my rant, this morning, I'm not courageous. I'm scared and mad as hell that I may be robbed of those life moments we sometimes take for granted. 

Time for my Oxygen (figuratively speaking) & to saddle up!

Grieving 101

Grieving 101:

Grieving the life I had up to Feb. 8, 2013. Being bothered by the little things. Always believing I had the time to travel, find my special someone, see Kyle & Kristin graduate from college, see Steven, Kyle & Kristin get married, see grandkids, spoil grandkids, work for another 15 years, enjoy my "senior years" & do all the things I postponed because I was working & supporting my phenomenal son. I always thought I'd have time. I mean, I had heard, 50 was the new 30! "You're a cougar! Find yourself a younger guy! Live it up! Go travel!" Hahaha...Please don't get me wrong! I'm grieving so much, but a man is not at the top of the list. I recently lost a beautiful, tragic friend because of a "man" & trust me, I would rather be in my shoes than hers. She needs more prayers than I do. I have pancreatic cancer and I have a better chance of finding a great guy than she does...such a pity...it's a Lifetime movie...but I digress.

Reality after Feb. 9, 2013. 

Being told not to look at statistics. Looking at the statistics. I knew the stats before Feb. 8. Duh, I'm not stupid! I knew I had to act quickly! Rapidly researching options. Finding a surgeon. Miraculously knowing a Medical Oncologist who specializes in Pancreatic cancer. Surgery within a week of discharge, major surgery within 9 days, tubes, IVs, glucose checks. Hospitals, ports, blood work, chemo. No longer having a 10 year plan, but a 6 month plan with the hopes of beating the statistics to be have a 5 year plan.

I don't fear dying. I grieve the life I thought I would have or still had time for. I grieve I may not see my granddaughter or grandson. I grieve I may not be there for Kyle's major milestones. I grieve I can no longer be so carefree. I grieve what I missed out on, in my past. I also grieve what I may miss out on in the future.

I apologize if I "snap" at you. I know you're grieving in your own way. I don't mean to minimize any struggle you've had, but my struggle is completely different. I truly am in a life & death battle. Unless you've been diagnosed with the same God-forsaken cancer or some other terminal illness, you can not fathom the fear & utter panic I have felt. I am a positive person. However, I am also a realist. I know the odds of my survival. No one understands this better than me. Yes, I want to be in the 9% that survive 5 years. However, there are no guarantees.

What I need from you through this process? I need you to donate to Pancreatic Cancer research. Donate to Vanderbilt-Ingram Cancer Center or Pancreatic Cancer Action Network. They desperately need more research dollars. It sucks to be me or like me and be diagnosed with the cancer that hasn't had the same exposure & dollars donated as breast and prostate cancer. Pancreatic cancer only gets 2% of NIH money...THAT SUCKS!! I also need & appreciate the food that is brought to me & my super-duper new juicer! I need & appreciate the care packages. Lotion is always a good thing for a chemo patient. My skin is extremely dry. I am grateful for the love & support. Please continue with the prayers & support for Kyle, as well. I'm his biggest fan & I can't imagine departing this earth without fulfilling my obligation to him as his Mother.

It's ok to cry with me. It's ok to say, "IT SUCKS!" It's ok to hope with me. What's not ok? It's not ok to say, "You're going to beat this." I don't know if I will, but I'm doing all I can control. What would be better to say? "I'm here for whatever you need & THIS SUCKS!" Please don't say, "I understand." No, thank God, unless you're also a PC patient with stage 2B adenocarcinoma, you don't understand. I can't understand what it's like to be a stage 4 PC patient. I may someday, but today, I don't. What I can say to my new friends with stage 4 PC, "I'm here for you, I'm praying and IT SUCKS YOU HAVE TO DEAL WITH THIS!"

My body is still healing and my mind is still reeling. I'm still trying to put my Oxygen mask on first. However, it's the hardest thing to do. 

Much love to all,

Alyson

Chemo

This will be quick....

Taking a week off from chemo was a teaser! I mean, I wasn't supposed to really be around people & I was tired, but my appetite was great on my week off.

Monday, I returned to Vanderbilt for chemo infusion #3.
My blood work bounced back nicely, on it's own, another good sign for me. So, I was able to get my 3rd infusion! Only 15 more to go until another CA19-9 AND a CT scan to see if I have any tumors lurking in my body.

Now, back to chemo. Ugh, is all I can say. I know, others have chemo that is worse than this, but it still stinks. My reaction is pretty predictable. It goes something like this: I'm ok the day of the infusion. Maybe a little tired from the anti-emetic medication, but otherwise, I feel pretty good. It all starts to change about 12-24 hours post infusion. I completely lose my appetite, with a little nausea, headache, muscle aches, low grade temp...mostly flu-like symptoms. Now imagine, you're going to have to go through this for 2-4 days, every week, for 3 weeks, then you get one week off...for 6 months. No wonder I'm losing weight! I'm just about down to my college fighting weight of 110! In January I weighed 138. That's a lot of poundage for a vertically challenged girl of almost 5'4"! What do you do? Nope, no ice cream...I'm a vegan now...Dr says it's best for possibly keeping this cancer in remission. For however long that may be. I was told on Monday, IF there is "no evidence of disease" in 5 months/August, then I get to go into the "surveillance" program. Too bad it's not anything spy like/cool like the Witness Protection Program where I could change my name and live to the ripe old age of 88 on a tropical island! Nope, it's Vanderbilt-Ingram Cancer Centers program to keep me on a "very short leash", according to my medical professionals. Apparently since I was so fortunate to be diagnosed with one of the nastiest cancers with one of the most deplorable survival rates, I will become a permanent fixture at VICC, until my death. They are going to want to see me every 3 months, IF my blood work and scans remain clean. If not, I suppose I'll be there every week for an infusion to keep the cancer at bay and keep myself alive! I still have a lot of living to do!

Tomorrow, I'll talk about the grief. Grieving the life I had before Feb. 9, 2013. I loved my life up until Feb. 8, 2013. I still love my life, but it is forever changed.

As always, much love to everyone! Keep praying & I'm still chanting, "Die Cancer cells, DIE!!! You're not welcome here!" And as always, I'm putting my Oxygen mask on first.

Divine Intervention

So, here we are, after Easter. The highest of the Holy for Christians...of which I am.

It's been an interesting 2013, to say the least. Was it a coincindence that on the anniversary of my Mother's death, I was diagnosed with one of the most horrific cancers to have, pancreatic cancer? I don't believe so. I do believe in Divine intervention. It's too strange that 3 weeks prior to being admitted to the ER with acute liver failure & jaundice, then ultimately having a mass on my pancreas, all of my blood work was completely normal. Other than having a little indigestion, bloated and some stool changes, I was actually feeling pretty good.

How ironic that I was suddenly facing a life and death situation. I also believe it to be Divine intervention that I had made the acqaintance of my Oncologist when I lived in Nashville. It was through him that I was able to get surgery so quickly from a very highly qualified surgeon, who trained at MD Anderson, at Vanderbilt.

So should I take it as a coincindence or Divine intervention, that on Good Friday, the day Christ was tortured and crucified, in front of his mother, that I received some of the best news a pancreatic cancer patient could receive? I, once again, take it as Divine intervention. Because, on Good Friday, a day that has always mesmerized me, even as a child, but more so as a mother, I had a great day! I've always wondered what it was like to be Mary. I wonder what it must have been like for to see her only son being ridiculed, tortured and ultimately crucified. I know the love a mother has for her son. I've always felt such a loss for her, as a mother, to see the sacrifice her son was forced to endure for our salvation. As I was reflecting on my annual routine of Good Friday and wondering if I'll be there for my son, next year, I suddenly thought, "I have to check my email from Vanderbilt! I have to see if my CA19-9 blood work was reported!" It was there. I opened the email and to my sheer delight and gratitude, my CA19-9 has fallen to 17. To those of you unfamliar with the CA19-9, it is used as a tumor marker in pancreatic cancer. While it is not a great screening marker, it is utilized as a diagnostic marker to measure a patients response to treatment. The normal range is 0-38. Prior to my Whipple procedure and 2 infusion treatments of Gemzar, my CA19-9 was 270. So, here I am, for today, there is "no evidence of disease". Those are the terms the medical professionals use. I know it's early in my treatment, but I believe in Divine intervention. I believe my cancer was caught early for a reason on the anniversary of my Mother's death. I believe I found those results on Good Friday for a reason. I believe I will beat the odds of this awful cancer, unlike many of the brave warriors out there fighting as hard as me. I may not live to the ripe old age of 80 like my mother, but I believe I'll be in the 8% that survive pancreatic cancer at 5 years.

I have to believe...it's not going to be an easy road...but I believe in Divine intervention.

p.s. I'm still grieving the life I left behind on Feb. 8th & forgive me if I hurt your feelings...I'm learning to live again, with pancreatic cancer...it's my new reality. Next time I'll talk about my grieving process and what to say & not to say to a cancer patient. :)