I've received this question from my loving friends, more than once. So, I thought I would address it in my blog.
How am I doing, really? I'm tired most of the time. I'm depressed some of the time. I'm grateful for my friends, family, to be alive and having the most amazing medical team to fight this awful cancer ALL OF THE TIME, even if I may not express it enough or very well.
Tired: Let me tell you, I have an entirely new perspective on the definition of "tired". I've been tired before from working long hours, running Kyle around to school, gigs and games and spending weekends of fun with my friends, but this is an entirely different kind of tired. As my Neenie would have said, "I'm tired to the bone." I'm also cold all of the time. It's all because of the chemo. Today, for instance, I have slept most of the day and am still exhausted. I'm pretty confident I will have my first experience with a blood transfusion tomorrow. I called Vanderbilt on Friday to inquire about getting a transfusion. I thought I might go ahead and get one in Louisville, until I found out that it would require me to go to the ER. Thanks, but no thanks! I've had enough of the ER at Baptist East for the last 2 months. So, they are prepping for me to have one at Vandy, tomorrow. Sam put in a request to have my blood crossed and typed when they draw from my port to check my counts prior to chemo. She also requested more time in the infusion center for me. Apparently it takes longer to transfuse some blood than it takes for my infusion. They only block out an hour and a half for my infusion, but I'll need an extra hour for a transfusion. It should be an interesting experience. I've been told I'll feel like a million bucks after the transfusion. What would really make me feel like a million would be to be completely free of this beast, completely cured and never have to think of pancreatic adenocarcinoma again. Sadly, that will never happen. :(
Depressed: I was diagnosed with pancreatic adenocarcinoma, the most lethal of all cancers, they say. Enough said. My life is forever changed and I will never have my other life back. I have to go to Vanderbilt pretty much every week, through chemo, and then I'll be in their nifty surveillance program. Meaning, I will be at Vanderbilt-Ingram Cancer Center on a regular basis for the rest of my life.
Grateful: I'm grateful for my friends & family for the love and support. We are all grieving this diagnosis and dealing with it the best that we can. What is difficult, at times, is that I deal with it differently than my friends and family. It has proven to be a challenge, with some, in communicating my wants, needs and fears. I'm a fiercely independent girl. It's very difficult for me to ask for help. I'm slowly learning, so please bear with me. I'm grateful for my Vanderbilt team that really has given me a second lease on life. Although the life I now have is vastly different from the life I had planned, I'm very blessed to have gone there for a second opinion and chosen the team I have to fight this cancer. I'm alive and according to my uber-fabulous Oncologist, he believes I'll beat this beast. Meaning, I'll be here for at least 5 years...hopefully more.
It's Sunday and it's my "grieving day"...tomorrow I'll be back to my Monday routine of Vanderbilt-Ingram Cancer Center...and using my lifeline, hopefully to kill more cancer cells.
Time for some Oxygen...goodnight <3
Sunday, April 28, 2013
So, you don't want to hear about it...
I was told last night that all I talk about anymore is cancer. Really, wow, guess what? IT'S BECAUSE I HAVE CANCER!! Not only was I diagnosed with cancer, it happened to be the deadliest form of cancer one can get.
What do I say to those of you that don't want to hear about MY cancer or about Pancreatic cancer? KISS MY EVER SHRINKING, SOUTHERN GIRL ASS! I know, not very "ladylike", as my mother would have said, but this cancer is not ladylike.
If you don't like hearing about my cancer, unfriend me on Facebook, stick your head in the sand and live your perfect, little life. Ignore that a "friend" of yours is struggling with losing her identity. Hell, I've lost everything about my previous life. Please continue with your narcissistic little life and go on and bitch about meaningless things like who lost a ballgame, a coach you don't care for, the weather that is messing up your hair or how your kids are making a mess in the kitchen. Because those things are so much more important than the fact that I am fighting for my life.
Seriously, I know I'm comsumed with this. I bet if you were in my shoes, you would be too. I doubt you would be your happy-go-lucky self without a care in the world if you had been told you had pancreatic adenocarcinoma, known as the most lethal cancer on the planet. I call BULLSHIT on you if you say you would.
I am rapidly learning who my true friends are and who really doesn't get me. You know what? I don't care if you don't want to hear about my cancer. In the words of one of my best friends, "God Bless America, you have every right to ignore me." So, please do!
I am going to talk about MY cancer and the cancer that is trying to kill me and thousands of people like me. I'm going to keep talking about it so hopefully, one day YOU won't have to deal with it. God forbid, something really bad ever happens to those that don't want to hear about my cancer. I'm going to keep talking about Pancreatic Adenocarcinoma until the day I die, so get over it.
I'm going to keep talking about it until we get the funding that Prostate Cancer & Breast Cancer have.
So....GET OVER IT...I'm going to keep talking about it until I die...I hate this cancer. It's changed everything about my life. If you don't like it, then you're not the kind of friend I need in my life.
What do I say to those of you that don't want to hear about MY cancer or about Pancreatic cancer? KISS MY EVER SHRINKING, SOUTHERN GIRL ASS! I know, not very "ladylike", as my mother would have said, but this cancer is not ladylike.
If you don't like hearing about my cancer, unfriend me on Facebook, stick your head in the sand and live your perfect, little life. Ignore that a "friend" of yours is struggling with losing her identity. Hell, I've lost everything about my previous life. Please continue with your narcissistic little life and go on and bitch about meaningless things like who lost a ballgame, a coach you don't care for, the weather that is messing up your hair or how your kids are making a mess in the kitchen. Because those things are so much more important than the fact that I am fighting for my life.
Seriously, I know I'm comsumed with this. I bet if you were in my shoes, you would be too. I doubt you would be your happy-go-lucky self without a care in the world if you had been told you had pancreatic adenocarcinoma, known as the most lethal cancer on the planet. I call BULLSHIT on you if you say you would.
I am rapidly learning who my true friends are and who really doesn't get me. You know what? I don't care if you don't want to hear about my cancer. In the words of one of my best friends, "God Bless America, you have every right to ignore me." So, please do!
I am going to talk about MY cancer and the cancer that is trying to kill me and thousands of people like me. I'm going to keep talking about it so hopefully, one day YOU won't have to deal with it. God forbid, something really bad ever happens to those that don't want to hear about my cancer. I'm going to keep talking about Pancreatic Adenocarcinoma until the day I die, so get over it.
I'm going to keep talking about it until we get the funding that Prostate Cancer & Breast Cancer have.
So....GET OVER IT...I'm going to keep talking about it until I die...I hate this cancer. It's changed everything about my life. If you don't like it, then you're not the kind of friend I need in my life.
Saturday, April 27, 2013
Whipple? What's that?
The "Whipple Procedure" explained...the re-routing of my GI system.
http://m.youtube.com/watch?v=x4NJTNLq3xw
Pancreatic cancer fact:
I'm one of the lucky 15%! I was a candidate for the "Whipple". I did my research, with the help of my brilliant, beautiful blonde, Tami & I knew my greatest chance of survival (5 year ~ 10%) was to get to a National Cancer Institute Facility, where I would find a highly experienced surgeon and nursing staff. Not only did I need a surgeon who performs many whipple procedures on an annual basis, but I needed an experienced nursing staff, as well. I found both at Vanderbilt University Medical Center.
Vanderbilt is one of the elite cancer treatment centers in the country. It is a National Cancer Institute facility. These facilities are designated because of the cutting edge research they perform. It is one of only 41 Comprehensive Cancer Centers nationally.
http://www.cancer.gov/researchandfunding/extramural/cancercenters/about
Now, about my Whipple. It's called the "Granddaddy" of procedures for a reason.
If you watch the video above, it IS one of the most complicated surgeries anyone can go through.
Fortunately, I had a fabulous surgeon. I was prepared for the possibility that I may or may not be waking up to the reality of having a whipple. My Dr said that he would use a laparascope to visualize whether my tumor was isolated to my pancreas or if it had spread. If it had spread, he would not proceed. Luckily, he proceeded with the whipple. My surgery lasted a little over 7 hours. He removed a 4cm tumor that had penetrated my duodenum wall, 5 of 23 lymph nodes that were positive for cancer and he even went so far as to resect my portal vein to insure he had all negative margins. The fact he resected my PV, very well may be the difference between a significant amount of time to extend my life.
The surgery was the easy part! I spent about 12 hours in recovery, with a NG tube, catheter, JP tube, IVs, O2, EKG leads and other bells and whistles on me. Unlike most Whipple patients, I did not spend any time in ICU. I chalk it up to my youth (at 49...lol) and that I'm in pretty decent shape. I had the NG tube and catheter removed prior to moving me to the 9th floor at VUMC. This was where my recovery really began. Unlike most patients where the average stay is 7-10 days, I was only in the hospital for 5 days.
Recovery from the "whipple"...this can vary significantly from patient to patient. I do know that for anyone that has undergone this procedure, your life is FOREVER changed. Never again will you eat like you did prior to surgery. For the first two days, I was only allowed ice chips. Talk about weight loss, the whipple is notorious for this. I lost a total of 25 pounds from my pre-whipple body. I finally began on clear liquids by day 3. On day 4, before they would consider letting me leave the hospital, I finally began some "real" food. Fortunately, my sister went to Trader Joe's and Whole Foods and brought me good food to the hospital. I found that fruit smoothies were my best option in the early days.
My newly re-routed GI system was tough in the first 4 weeks. Without Reglan, I found most food was difficult to hold down. Anything with fat in it was a definite no-no. I'm now 10 weeks post-op and I'm finally stabilizing my weight loss and even have gained about 5 pounds back. It's been tough. Most days are still a struggle with an appetite and determining what my stomach will tolerate. I now have to take many meds just to be able to eat a meal. A lot of my once favorite foods are either off limits or are too much for me to handle.
http://m.youtube.com/watch?v=x4NJTNLq3xw
Pancreatic cancer fact:
-
Treatment options for pancreatic cancer are limited. In adenocarcinoma (the most lethal & what I was diagnosed with), the most common type of
pancreatic cancer, surgical removal of the tumor is possible in only approximately 15% of patients.
I'm one of the lucky 15%! I was a candidate for the "Whipple". I did my research, with the help of my brilliant, beautiful blonde, Tami & I knew my greatest chance of survival (5 year ~ 10%) was to get to a National Cancer Institute Facility, where I would find a highly experienced surgeon and nursing staff. Not only did I need a surgeon who performs many whipple procedures on an annual basis, but I needed an experienced nursing staff, as well. I found both at Vanderbilt University Medical Center.
Vanderbilt is one of the elite cancer treatment centers in the country. It is a National Cancer Institute facility. These facilities are designated because of the cutting edge research they perform. It is one of only 41 Comprehensive Cancer Centers nationally.
http://www.cancer.gov/researchandfunding/extramural/cancercenters/about
Now, about my Whipple. It's called the "Granddaddy" of procedures for a reason.
If you watch the video above, it IS one of the most complicated surgeries anyone can go through.
Fortunately, I had a fabulous surgeon. I was prepared for the possibility that I may or may not be waking up to the reality of having a whipple. My Dr said that he would use a laparascope to visualize whether my tumor was isolated to my pancreas or if it had spread. If it had spread, he would not proceed. Luckily, he proceeded with the whipple. My surgery lasted a little over 7 hours. He removed a 4cm tumor that had penetrated my duodenum wall, 5 of 23 lymph nodes that were positive for cancer and he even went so far as to resect my portal vein to insure he had all negative margins. The fact he resected my PV, very well may be the difference between a significant amount of time to extend my life.
The surgery was the easy part! I spent about 12 hours in recovery, with a NG tube, catheter, JP tube, IVs, O2, EKG leads and other bells and whistles on me. Unlike most Whipple patients, I did not spend any time in ICU. I chalk it up to my youth (at 49...lol) and that I'm in pretty decent shape. I had the NG tube and catheter removed prior to moving me to the 9th floor at VUMC. This was where my recovery really began. Unlike most patients where the average stay is 7-10 days, I was only in the hospital for 5 days.
Recovery from the "whipple"...this can vary significantly from patient to patient. I do know that for anyone that has undergone this procedure, your life is FOREVER changed. Never again will you eat like you did prior to surgery. For the first two days, I was only allowed ice chips. Talk about weight loss, the whipple is notorious for this. I lost a total of 25 pounds from my pre-whipple body. I finally began on clear liquids by day 3. On day 4, before they would consider letting me leave the hospital, I finally began some "real" food. Fortunately, my sister went to Trader Joe's and Whole Foods and brought me good food to the hospital. I found that fruit smoothies were my best option in the early days.
My newly re-routed GI system was tough in the first 4 weeks. Without Reglan, I found most food was difficult to hold down. Anything with fat in it was a definite no-no. I'm now 10 weeks post-op and I'm finally stabilizing my weight loss and even have gained about 5 pounds back. It's been tough. Most days are still a struggle with an appetite and determining what my stomach will tolerate. I now have to take many meds just to be able to eat a meal. A lot of my once favorite foods are either off limits or are too much for me to handle.
Thursday, April 25, 2013
Momma's Boy
Apparently, a few girls that know my son have called him a "Momma's Boy". Obviously, they are too young to have children and do not understand the love a mother has for her child. Is Kyle a "Momma's Boy"? Yes, I'll be honest, he is. Is it a bad thing? No, I don't believe it is and here's why:
Girls, how a young man treats his mother is the best indication of how he will treat you as a wife. We are close. I know just about everything about him. However, we have our challenges, as well. We get along very well, most of the time. Do my son and I have arguments, raise our voices to one another, say hurtful things? Yes, We're human. Anyone you have a close relationship with will have discourse at times. However, what do we say to one another more than anything else? I LOVE YOU & I'M SORRY. What I know without doubt, as does he, we are here for one another...NO MATTER WHAT! We are LOYAL.
My son has been my main focus for 21 years. On the day he was born, my father leaned into me and whispered in my ear, "You now have someone you love more than yourself." How true those words are!
Never have I known the depth of love I have for that young man. I know I'm not special in how I feel for my son. All of my friends feel the same about their children. Why? Because great Moms put their kids first and realize that one day they will be out of the nest, building their own lives and hopefully we have done a good job so the rest of society sees them and says, "You must have had a good Momma."
It's about legacy. I want my legacy to live on in my son and grandchildren. Yes, we are a loud family, most of the time, but we are also fiercely loyal and we love one another unconditionally.
So for you girls that believe my son is a "Momma's Boy", I can tell you, you're not good enough for him. If you were, you would respect and admire the bond he shares with the most important woman in his life before he chooses a life partner. I'm the one who made sure he respects not only women, but animals and all humans.
To the girl my son chooses to marry, I say this: I will gladly hand over the reigns to you. I expect him to love you unconditionally and treat you like a princess. I expect him to put YOU first. I expect him to put his family first. Whether I'm here or not, is yet to be determined. I hope you will love me. I hope you will allow me to be a part of your family and be your friend. I can tell you this much, I know my son, and if he chooses you to be his wife, I know I will love you. I trust his judgement when it comes to relationships.
So, here's to all the "Momma's boys"...you are unique and special.
Girls, how a young man treats his mother is the best indication of how he will treat you as a wife. We are close. I know just about everything about him. However, we have our challenges, as well. We get along very well, most of the time. Do my son and I have arguments, raise our voices to one another, say hurtful things? Yes, We're human. Anyone you have a close relationship with will have discourse at times. However, what do we say to one another more than anything else? I LOVE YOU & I'M SORRY. What I know without doubt, as does he, we are here for one another...NO MATTER WHAT! We are LOYAL.
My son has been my main focus for 21 years. On the day he was born, my father leaned into me and whispered in my ear, "You now have someone you love more than yourself." How true those words are!
Never have I known the depth of love I have for that young man. I know I'm not special in how I feel for my son. All of my friends feel the same about their children. Why? Because great Moms put their kids first and realize that one day they will be out of the nest, building their own lives and hopefully we have done a good job so the rest of society sees them and says, "You must have had a good Momma."
It's about legacy. I want my legacy to live on in my son and grandchildren. Yes, we are a loud family, most of the time, but we are also fiercely loyal and we love one another unconditionally.
So for you girls that believe my son is a "Momma's Boy", I can tell you, you're not good enough for him. If you were, you would respect and admire the bond he shares with the most important woman in his life before he chooses a life partner. I'm the one who made sure he respects not only women, but animals and all humans.
To the girl my son chooses to marry, I say this: I will gladly hand over the reigns to you. I expect him to love you unconditionally and treat you like a princess. I expect him to put YOU first. I expect him to put his family first. Whether I'm here or not, is yet to be determined. I hope you will love me. I hope you will allow me to be a part of your family and be your friend. I can tell you this much, I know my son, and if he chooses you to be his wife, I know I will love you. I trust his judgement when it comes to relationships.
So, here's to all the "Momma's boys"...you are unique and special.
Tuesday, April 23, 2013
Loss of control for a control freak
Well, here I am for infusion #5. I'm slowly learning I have no control over this cancer, or anything, for that matter. I arrived on Monday morning with my usual items in tow. I have my blanket: thank you, Tracy Drouin-you are a ROCK STAR for sending me my most prized possession for getting me through my chemo infusions; my vegan packed lunch and my iPad.
I saw my super fabulous, Nurse Practitioner, April. I really couldn't be more blessed than to have the medical oncology team that I have! Sure, I could have gone to MD Anderson or Johns Hopkins, but who really wants to be hundreds of miles from home when I have an internationally known and highly respected Oncology team in my back yard at Vanderbilt. I know many believe they are being helpful with sharing information regarding cancer with me, but honestly, I have the best team to help me fight this God awful cancer. I don't throw my Oncologist's name around, but trust me, he IS a big deal in the world of Pancreatic adenocarcinoma. If I'm going to beat this, I trust HIM and his team to lead me to victory.
Now about control, or lack thereof. I always arrive with a preconceived notion of how my day is going to go. Heck, this is my second "round" of infusions, so at least I THINK I know how it is supposed to go, in my mind. I'm rapidly learning that I have no control. First, on any day, I can have some energy or be totally wiped out. Second, I believe my bloodwork will be good enough to have an infusion. I've already been denied an infusion because of a low white blood cell count. However, I had not prepared myself for a possible transfusion for anemia.
Yep, that was the curve ball this week. I knew my counts were a little low after my visit to the ER on Friday, but I didn't know how low they would be for my infusion. Well, on Monday, I found out. Not only is my white count low, but my red blood cell count is low, too. My white blood cells were just high enough for the infusion. However, my PCV is 27%. I know, I didn't know what that meant either until I looked it up. What it means is, my red blood cells as a percentage of my total blood, is low. The normal for a woman is about 40%. My NP instructed me that if it gets to 25% I will have to have an transfusion. I thought, "WHAT?!?!? I've never had a transfusion! I have no idea of what to expect with this!"
She told me that if I feel like I'm short of breath or exceptionally tired, I need to call them immediately. I told her, "Well, with this pancreatic adenocarcinoma thing and chemo, I'm pretty much tired all of the time. I've been anemic much of my life. I know what tired is, but this is getting a little ridiculous."
No control...just when I thought I knew what to expect with a second infusion for this round, there's that monkey wrench thrown in.
I'm still grieving so much of my old life and just when I believe I can have some sort of "schedule", I realize there is no such thing. It all depends on my blood counts. Just when I was hoping I might possibly be able to go back to a somewhat normal life, I'm reminded the only thing I can count on is my team of medical professionals at Vanderbilt.
It really is, "One day at a time." Except for Sundays & Mondays...the only days that are consistent for me.
Sunday: I'm racked with anxiety and sorrow missing my old routine of preparing for my week of work.
Monday: wearing a shirt that allows the nurses easy access to my port to take blood for my Doctor or NP to check my blood counts...
After that, it's all a crap shoot as to what will happen.
Time for some O2...breathe...just breathe...
ER visit and sutures!
In all the excitement for the kid coming home for the weekend for a Rugby tournament, I was busy doing laundry and getting his bed ready for him. In my flurry of preparation, I took a tumble down about 8 stairs. I thought I was okay until I saw blood dripping on one of the blankets I was washing.
I thought to myself, "Great! What do you do now?" I went upstairs and took off my watch and saw I had a nice gash on my wrist and a couple of deep abrasions on my elbow. Yes, I landed on my "butter beans", as my mother called my derriere. I decided instead of putting a bandaid on it, I better go to the ER and have it checked out since of this little cancer thing and chemo.
Sure enough, I needed to get about 8 stitches to close it up, an antibiotic, a tetanus shot and my blood counts checked. I did text my uber fabulous Oncologist to find out if there were any special instructions and his response was, "Tell them you're on chemo and check your counts."
Well, my counts were a little low which had me concerned for my Monday infusion.
I got stitched up, was put in a splint (to keep me from ripping the sutures open) and sent on my merry way to get my antibiotic prescription filled at 3:30 in the morning.
So far, so good with it. I made it through the weekend and to my infusion on Monday.
Why can't I have my normal life back with a simple fall down the stairs, a few bruises and on to a normal work day like it used to be. :(
Wednesday, April 17, 2013
DONATE FOR RESEARCH
Donate to Vanderbilt-Ingram Cancer Center! Ask specifically to have the funds go directly to Pancreatic Cancer Research!
Here's the link: http://www.vicc.org/about/help/
Vanderbilt ROCKS!! So blessed this institution (different departments) has been my account for over 3 years ♥
I miss my work family :( & I miss being at academic facilities & conversing with my genetic counselors each week!
I'm getting my own genetic testing done...my son will be tested as well. How interesting to be on the other side of genetic testing.
I'm getting my own genetic testing done...my son will be tested as well. How interesting to be on the other side of genetic testing.
Tuesday, April 16, 2013
My lifeline
This is what my port looks like. My implanted lifeline. 2 months ago, I couldn't tell you anything about a port or chemotherapy. Before February 2013, cancer, especially pancreatic cancer, happens to other people. Never in a million years would I have thought this would be my journey. My family dies from Cardiovascular Disease & Alzheimer's, not cancer.
Oh, but here I am! I was diagnosed with what is called, "the most lethal" of all cancers. Try wrapping your brain around that! It's a tough one to understand and grasp. The statistics are nauseatingly dismal. This cancer gets little in research compared to prostate and breast cancer. Then there are the survival rates. For prostate cancer, the overall survival rate is 99.2% at 5 years, for breast cancer it is 89%, for pancreatic adenocarcinoma, it's a whopping 6%!! WOO HOO!! I'm so lucky! Yesterday my Oncologist said it's about a 10-20% chance of me surviving the 5 year mark! I'm doing really well.
Please don't get me wrong. I am not dismissing ANY cancer patients personal journey. What I am ranting and rather pissed off about is that the NIH and others put so much research dollars into a cancer, specifically prostate cancer, that is well known to be the slowest growing cancer and very unlikely to kill most men. In the words of many Doctors I know, "Prostate cancer isn't going to kill you, but heart disease will." 3 times the money is spent on prostate cancer that has a very good EARLY detection rate and CURE rate. I just wish pancreatic cancer would get the same research dollars. I'm not asking for more, I just want equality. I'm not even asking for me, I'm asking for my son, Kyle. I've already been diagnosed with this lethal bad girl. I live with not a question of "if" it comes back, but a "when" it comes back. The research I beg for is for my son and the other kids who have Mom's like me battling Pancreatic Adenocarcinoma.
Now on to what my day of chemo is like:
I've learned a lot about chemo in a very short time. I've learned that what you wear is very important to access my port. I usually wear a tank top under a zippered hoody or baggy sweater. A) it's easy for the nurse to access the port and B) the hospital is COLD, to me!
I arrive early on Mondays because they are usually very busy. Get checked in with the usual co-pay business and am given a pager. I get paged to the lab and have learned to automatically identify myself by my full name and date of birth. I've also memorized my account number from Vanderbilt and tell them that, just to impress them...lol
Once in the lab, the nurse wipes down my chest area and sticks a needle attached to a tube into my port. It sort of locks onto the port. No, it doesn't hurt, but then again, I had a Whipple procedure, so it shouldn't hurt compared to that. Once the port is locked on, the nurse will flush it and pull out some blood. Then she will withdraw 2-3 tubes of blood, flush the port with Heparin and then send me onto the Dr,
At the Doctor's appointment, he will pull up the results on the computer for me to see and it will determine whether I am ok to receive my chemo for the day. If it's a go, he prescribes my chemotherapy and I head up to the second floor to the infusion center.
The infusion center is nice at VICC,. It has a family room for reheating food, a refrigerator, games and books.
Each patient gets their own room in the infusion center. Sometimes you get a bed (YAY!) and sometimes you get a big recliner. Once again your vitals are taken and you're prepped for chemo. A bag of saline is started and once the pharmacy has your chemo ready, 2 nurses come to verify that you are who you are and this is the drug you are to receive and then they add the chemo to your saline line.
My chemo time is only about an hour and a half, total. Which is a LOT better than some people I know. Some of my PC friends have to have chemo for a 12 hour stretch. That may be me someday.
Now it's Tuesday and I'm beginning to feel the effects of the chemo.
Time for my Oxygen mask, phenergan and sleep...my little post-chemo fever friend is back.
Monday, April 15, 2013
Insomnia
Every Sunday before chemo, I just can not sleep. I'm anxious...anxious about the results of my blood work. Anxious about the questions I have for my medical team and the answers that may come. Anxious about the chemotherapy/poison that will be injected into my body to kill not only any rogue cancer cells, but good cells too. Anxious about the after effects on my body because of the therapy I have to endure to save my life.
I believe I can't sleep because my life is so drastically different from my normal life. My Sundays were very regimented for me. I used to spend my Sunday planning my work week. I miss strategizing about accounts, cleaning & organizing my car, laundry and packing. Now my Sundays consist of preparing for my visit with my Oncologist.
Now, I'm strategizing on how to extend my life. I'm not cleaning and organizing my car. I'm now organizing my medical records, EOBs and medical bills. I'm becoming very well versed in what my insurance coverage is and am shocked at some of the costs in my medical care. I'll do an entire post on this...so please don't get me started on Big Insurance!
My Sundays are so different. I just want to go back to my "normal". However, I can never go back to my normal. I have a new normal and I don't have any choice but to embrace it. It sounds so cliche, but life can change on a dime.
The things that suck about my new normal:
I miss my working family
I miss traveling to see accounts and the drive time/alyson time to think
I miss my favorite accounts
I miss getting dressed up and in heels
I miss a lot of good food
I miss the energy I used to have
...there are a lot of things I miss, but these are at the forefront of my mind on this sleepless night.
The things that don't suck about my new normal:
The love I feel from my family and friends
The care packages and cards from family and friends
The naps I get to take, like you did in Kindergarten!
The knowledge that my son loves me unconditionally
My time to reflect on how fortunate I am to have the life I have
My new normal is so foreign to me. I'm still grieving over the death of my normal life.
I try to stay positive with each day and not get too consumed by all of the changes. It's just so hard sometimes. I have this port inserted into my chest that is my lifeline. I have a vertical scar on my abdomen that reminds me everyday, I endured one of the most difficult and challenging surgeries.
My new normal is hyper-focused on research. I read about my cancer. I communicate with others like me. I'm consumed with finding a way to beat this. I'm not going to give up. Yes, I have bad days. Yes, I am a realist with an optimistic attitude.
Insomnia comes from having so many questions and not being able to get the answers I need for some of my questions, to relieve my anxious mind.
Chemo session #4 is today, in 10 hours. After that, only 14 to go! Insomnia will lose tomorrow night. After chemo, I sleep on Mondays and prepare myself for the side effects that I know are coming on Tuesday.
My next post will walk you through my visit, today. I'll document from the time I get to the lab to access my port for my blood work and walk you through a day in the life of a pancreatic cancer patient at Vanderbilt-Ingram Cancer Center.
Time to put my Oxygen mask on for the week...I see some bumpy travel this week.
I believe I can't sleep because my life is so drastically different from my normal life. My Sundays were very regimented for me. I used to spend my Sunday planning my work week. I miss strategizing about accounts, cleaning & organizing my car, laundry and packing. Now my Sundays consist of preparing for my visit with my Oncologist.
Now, I'm strategizing on how to extend my life. I'm not cleaning and organizing my car. I'm now organizing my medical records, EOBs and medical bills. I'm becoming very well versed in what my insurance coverage is and am shocked at some of the costs in my medical care. I'll do an entire post on this...so please don't get me started on Big Insurance!
My Sundays are so different. I just want to go back to my "normal". However, I can never go back to my normal. I have a new normal and I don't have any choice but to embrace it. It sounds so cliche, but life can change on a dime.
The things that suck about my new normal:
I miss my working family
I miss traveling to see accounts and the drive time/alyson time to think
I miss my favorite accounts
I miss getting dressed up and in heels
I miss a lot of good food
I miss the energy I used to have
...there are a lot of things I miss, but these are at the forefront of my mind on this sleepless night.
The things that don't suck about my new normal:
The love I feel from my family and friends
The care packages and cards from family and friends
The naps I get to take, like you did in Kindergarten!
The knowledge that my son loves me unconditionally
My time to reflect on how fortunate I am to have the life I have
My new normal is so foreign to me. I'm still grieving over the death of my normal life.
I try to stay positive with each day and not get too consumed by all of the changes. It's just so hard sometimes. I have this port inserted into my chest that is my lifeline. I have a vertical scar on my abdomen that reminds me everyday, I endured one of the most difficult and challenging surgeries.
My new normal is hyper-focused on research. I read about my cancer. I communicate with others like me. I'm consumed with finding a way to beat this. I'm not going to give up. Yes, I have bad days. Yes, I am a realist with an optimistic attitude.
Insomnia comes from having so many questions and not being able to get the answers I need for some of my questions, to relieve my anxious mind.
Chemo session #4 is today, in 10 hours. After that, only 14 to go! Insomnia will lose tomorrow night. After chemo, I sleep on Mondays and prepare myself for the side effects that I know are coming on Tuesday.
My next post will walk you through my visit, today. I'll document from the time I get to the lab to access my port for my blood work and walk you through a day in the life of a pancreatic cancer patient at Vanderbilt-Ingram Cancer Center.
Time to put my Oxygen mask on for the week...I see some bumpy travel this week.
Thursday, April 11, 2013
The "Death Sentence"
Would you like to know how many times I've heard that Pancreatic Cancer is a "death sentence"? Too numerous to count.
Anymore, I just laugh when I hear this. My new response to people is going to be, "Reality check! I STILL may outlive you! We ALL have an expiration date. I just happen to have a clearer picture of when mine MAY be. You too, will die. Last time I checked, no one gets out of here alive!"
This is my new normal. It's no longer life interrupted, it is now, this is my last chapter. I just don't know how many pages I'm going to be writing in this last chapter. Worst case scenario: I die within a year, get struck by lightning, have a tree limb fall on me, be sucked in to a sink hole, die in a motor vehicle accident, succumb to a systemic infection or die from pancreatic cancer. Best case scenario: I wake up each day and I continue to live, continue with chemo and live and love for another 5 years or more. I'm living in 3-6 month increments and hoping for the best.
I know I'm living with a "death sentence". I believe what separates me from many, I've realized this before I was diagnosed with pancreatic cancer. You see, I have an older sister. She was a beautiful child, second born to Norma & Pete. They had their perfect family. First born son, then 3 daughters. Sadly, my sister's death sentence came on the 25th day of October in 1966 as a result of an auto accident. There was no longer the perfect family. We became a fractured & broken family. Why do I tell everyone this? Because I grew up with grief and the shadow of death, daily. I grew up with knowing what a true "death sentence" is. I also saw the "death sentence" of one of my best friends on November 27th in 1983. Kathy was a beautiful & talented young woman who knew what she wanted in life, only to have her life tragically cut short as a result of an aviation accident.
I don't really have a death sentence because of pancreatic cancer. I have a life to live because of pancreatic cancer. I have a life to be grateful for because of pancreatic cancer. I'm 49 years old. That's 44 more years than my sister, Paulette, was given. That's 29 more years than what Kathy was given. I'm blessed to have had the life I have lived. I've had my struggles, made my mistakes, made friends and lost friends. I've been married, had my son, divorced, then raised my son pretty much on my own. I've known great love, been with the love of my life and I've lost great love. I've raised a young toddler into a great young man. I've traveled to beautiful destinations and been surrounded by love. You see, I've been able to experience so many beautiful things in life my sister and friend were denied.
So, when you believe I'm living with a "death sentence", think again. It may be you that's living with a death sentence. I'm living my life and feeling more love and support than I have ever felt. I wouldn't want to trade places with anyone for the life I've had.
My Oxygen mask is on & I'm living.
Anymore, I just laugh when I hear this. My new response to people is going to be, "Reality check! I STILL may outlive you! We ALL have an expiration date. I just happen to have a clearer picture of when mine MAY be. You too, will die. Last time I checked, no one gets out of here alive!"
This is my new normal. It's no longer life interrupted, it is now, this is my last chapter. I just don't know how many pages I'm going to be writing in this last chapter. Worst case scenario: I die within a year, get struck by lightning, have a tree limb fall on me, be sucked in to a sink hole, die in a motor vehicle accident, succumb to a systemic infection or die from pancreatic cancer. Best case scenario: I wake up each day and I continue to live, continue with chemo and live and love for another 5 years or more. I'm living in 3-6 month increments and hoping for the best.
I know I'm living with a "death sentence". I believe what separates me from many, I've realized this before I was diagnosed with pancreatic cancer. You see, I have an older sister. She was a beautiful child, second born to Norma & Pete. They had their perfect family. First born son, then 3 daughters. Sadly, my sister's death sentence came on the 25th day of October in 1966 as a result of an auto accident. There was no longer the perfect family. We became a fractured & broken family. Why do I tell everyone this? Because I grew up with grief and the shadow of death, daily. I grew up with knowing what a true "death sentence" is. I also saw the "death sentence" of one of my best friends on November 27th in 1983. Kathy was a beautiful & talented young woman who knew what she wanted in life, only to have her life tragically cut short as a result of an aviation accident.
I don't really have a death sentence because of pancreatic cancer. I have a life to live because of pancreatic cancer. I have a life to be grateful for because of pancreatic cancer. I'm 49 years old. That's 44 more years than my sister, Paulette, was given. That's 29 more years than what Kathy was given. I'm blessed to have had the life I have lived. I've had my struggles, made my mistakes, made friends and lost friends. I've been married, had my son, divorced, then raised my son pretty much on my own. I've known great love, been with the love of my life and I've lost great love. I've raised a young toddler into a great young man. I've traveled to beautiful destinations and been surrounded by love. You see, I've been able to experience so many beautiful things in life my sister and friend were denied.
So, when you believe I'm living with a "death sentence", think again. It may be you that's living with a death sentence. I'm living my life and feeling more love and support than I have ever felt. I wouldn't want to trade places with anyone for the life I've had.
My Oxygen mask is on & I'm living.
Tuesday, April 9, 2013
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
Sunday, April 7, 2013
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
Friday, April 5, 2013
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!
- 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!
Thursday, April 4, 2013
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
Wednesday, April 3, 2013
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.
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.
Tuesday, April 2, 2013
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. :)
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. :)
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