Dear Cancer,

You suck. 

Getting geared up for tomorrow. Chemo Day. Praying and hoping Mom's platelet counts are good as well as the rest of the blood counts. It SUCKS having to see the pain, fear and disappointment in her eyes when they told her last week she could not have her treatment. 

Not a lot of major issues going on. She is still battling the diarrhea which concerns me some. I'm attributing some of it to the way she has been eating. But that doesn't really account for all of it. 

This past weekend she did mention pain for the first time. A sharp, stabbing type pain in her lower abdomen. Scares me to think that it could be something related to the cancer growing/spreading. Sigh... dammit this ride sucks. All the ups and downs, I'm never quite sure what to expect and cannot plan anything. Just have to take it all one day at a time. 

So, my notes are written and my questions are ready. Now we just wait and see what tomorrow brings. 

Cancer you need to just go die somewhere. You are really not welcome in my world!!!

 

Hey Cancer.. STEP OFF.. 

You may think you got the upper hand today but trust me, TRUST ME, you will NOT win this!!

You may have prevented chemo from happening today but you better remember, she is only going to come back stronger and MORE PISSED OFF THAN EVER. And I have been on that end of her wrath, you don't stand a chance. 

Dear Cancer

We are getting ready to go to chemo today. You will be dying more after that. Good. Stupid damn disease. You truly are the lowest, most hated entity in the universe. Just go die.

Anyway, we are just over a month into this since the initial diagnosis on June 8, 2012. Hard to believe how fast time has moved since then, even with a couple of seemingly endless days tossed in for balance.

Mom continues to do very, very well with the Gemzar. A few little constipation issues, some diarrhea tossed into the mix to keep things interesting and otherwise, she just goes on and on and on..

Last week she had blood drawn before chemo and her counts were quite low. They decided she should have a transfusion to get things back on track. She balked at first but she did finally agree to having it done. Friday we saw the primary care guy for a check up for her diabetes then we went around the corner to the day patient unit and she got 2 units of blood. Amazing to see the difference after that. I am curious to see what the counts are today. 

 Cholangiocarcinoma. It sounds so fake!

I finally sat down last night with the scan results from June 8 and really, REALLY read them over thoroughly. Might have been a bad idea, I don't know but there are soooo many spots of cancer throughout her lower abdomen and so many more suspicious lesions. Her oncologist has been honest with me from the day we first met that this is a very, very grim prognosis and a very serious and grave condition she is in. I just find it so difficult to completely accept and/or believe this as she is doing SO well and has had (Thank God) no pain. Other than the one episode that lead to her going to the doctor with the jaundice, ending up in the Emergency Department for testing and ultimately being diagnosed, there are no signs or symptoms now that she is this sick.  I suppose on some subconscious level I needed to read those reports over to remind myself that this is really happening...

What the future holds is anyone's guess at this stage. I live today for today and try not to plan on anything too far out. Cherish the moment and all that. And above all, I am trying to remain positive! It's not easy some days but I refuse to allow cancer to dictate my ENTIRE life. It has some control over some parts but I will be damned if I will let it overtake everything. 

Fuck you cancer!

July 2, 2012. 

Originally we were going to be in Boston today for Mom's scans, biopsies, etc.  I can't say I am sorry that did not work out. Having things done locally sure makes this easier on some levels, but then I have to wonder if things may have gone smoother in a bigger, more cancer oriented hospital. We sure put up with a lot of incompetence with the local place but I really do believe that was due to so many interns having a say in Mom's care. IF we have a next time, there will not be any interns working with her. Especially ones who barely speak English and are totally and completely clueless as to what tests, etc Mom had done. I find it more than a little alarming that I knew more about Mom's condition and results than someone who is allegedly a "Doctor". 

Tomorrow is the second chemo infusion. We will be going to the doctor's office/infusion clinic for this. Mom has not had any major issues with the first infusion but chemo is cumulative, building up in the system with each treatment so I am not sure what to expect this time. I am hoping that things go smoothly and she can remain feeling good. The only problems she has had is a bit of constipation and some fatigue. Both relatively minor in the bigger picture. 

Speaking of the constipation. One new word of advice for anyone beginning this cancer/chemo journey. Mom's doctor recommended that she have both an anti-diarrhea medication as well as a stool softener on hand after the first chemo. I bought her "Colace" stool softener tablets and a store brand Immodium. I recommend having these in the house as soon as possible when beginning chemo. Mom was so grateful that I had gone out and had those ready for her.

 This is completely "on the job training" for me and that's why I am writing about it and sharing my story as we go along. I figure I may be able to help someone else along the way and that's always been my mission throughout my advocacy work. The above tip being proof that there is still much to be learned for me and I will continue to share the things I encounter as this journey continues.

 

One final thought for today.. I decided that I would be prepared in the event that Mom does lose her hair. I ordered her 2 head wraps which I will keep here with me until/unless she needs them.  One of the wraps I bought and one was through an amazing site that gives  one free wrap to newly diagnosed cancer patients...

www.headcovers.com is just one of many sites on the internet that you can find really nice headcovers, wigs and hats.

And to receive a free head scarf I found this link:

http://www.goodwishesscarves.org/good_wishes_scarves.php

In closing:

Dear Cancer.. You will NOT break my spirit nor will you break my Mom's. You might as well just give up and step off because I refuse to back down from this fight.

~Christine.

Dear Cancer,

If you judge by my Mom today you are NOTHING. She is alive and under the circumstances WELL. She has more energy than I do and I am not even sick! Cancer, you simply suck!

I just finished typing the last of the notes from Mom's hospital stay and included all of her scheduled upcoming appointments both with her primary doctor and the oncologist/chemo. My mother never, ever went to the doctor before and seeing this line up of appointments is really sad and really humbling. I've never known my mother to be "sick" really, not ever. Sure bad colds, 24 hour bugs, but never SICK. This has taken a lot to get my head wrapped around.

I am not so much angry, yet, as I am feeling blindsided by this whole thing. Mom was diagnosed in December/January with diabetes. HER mother had diabetes so there was no reason at all to think that the cause was anything more than hereditary. BUT.. she had lost A LOT of weight in a relatively short amount of time. She looked grey, not a normal flesh tone or pallor but GREY!!! Not a good color at all.  I hesitated to say much because honestly, Mom and I have never had the closest of relationships and I was afraid I would piss her off. Then if something DID happen she would never admit it.

The day she called to tell me she had been feeling pretty poorly since the weekend, June 1st to be exact, she admitted to me that she had become jaundiced. I begged her to go to the doctor; her excuse? She'd call in the morning if it was not better. I begged to take her to the emergency room. She flat out refused. I knew if I continued to push it, she would shut me out completely. SO, I waited. She did call the doctor on Thursday but his office was closed. She DID go to the office on Friday, and spent the day in the ER having test after test. I got the call to please go to the hospital around 4pm that afternoon. I guess I knew in my heart and soul that I was about to get the worst possible news. I mean, why else would I have to GO to the hospital? Why wouldn't someone tell me over the phone? No, I knew that life was about to change completely. And oh man, did it ever..

I met Mom in the ER. She had already been told she had cancer. I was NOT happy that they told her before I got there, but what was done, was done.  Her primary doctor came in and tried to sugar coat it saying he did not think it was a serious cancer, maybe lymphoma and that he felt that would be curable. (I do not like him much.) The ER doctor came in and talked to me at length while Mom was out for another test. She told me that my Mom had liver cancer and potentially pancreatic cancer as well as suspicious areas on her kidney. I asked her if she was sure. She said she was positive.

I asked for copies of ALL of Mom's tests and they very kindly obliged and gave me everything, including a disk with the CT scan on it. I read the written CT report and as I did, I realized that this is VERY serious. This was more than lymphoma. This was huge.

That night was a blur. Most of the weekend was a blur. I KNEW what had to be done but I could not function. I could not remember all of the things I tell the people who come to my sites to learn about lung cancer, or any cancer! I could not figure out what to do first. So.. I did nothing that night. I just sat on the couch in complete disbelief.

I started a couple of days later to document absolutely everything regarding the tests, results, appointments, etc. It is IMPERATIVE not to let anything slip by. My mind came back to work and we began to get our arsenal ready for this fight.....

Dear Cancer.. the beginning

Six and a half years ago I began my "new" life as a cancer patient advocate. At that time I had lost my best friend to lung cancer at 31 years of age. His life ended and my new one had just begun.

Over the course of time I created cancergrief.com, built the site from square one and made it a wonderful resource for anyone seeking information on cancer of all types, including treatment information, resources, helpful tips and support links.

 From there I decided to concentrate solely on lung cancer since that was the one that truly touched my life and the available resources for lung cancer were few and far between. I made it my mission in life to do all that I could to help educate people about this maligned disease, help raise awareness and eradicate the unfair stigma attached to it. My organization, Make Some Noise for Lung Cancer Awareness, which originated on Facebook, has grown to almost 3000 members and has it's own website as well.

Until recently cancer had taken numerous close friends, countless acquaintances but had never directly touched my life. Until June 8, 2012 when my mother was preliminarily diagnosed with pancreatic and liver cancers.

It's been one hell of a ride. And now I TRULY know what everyone says about cancer being a roller-coaster ride. I have been at the highest of highs, the lowest of lows and everywhere in between. I have learned so much more than I ever dreamed possible about cancer and cancer treatments. I have seen first hand how the whole chemo thing works and I have watched as my Mom became one of the bravest people I have ever known. 

I have learned that you cannot trust a hospital to always do the right thing. I have learned that even doctors who are supposed to be there to help and heal can be the biggest morons on earth and some of the least competent which is scary as hell. 

I have learned that even though I have done my utmost to be there for many, many people, what goes around does not always come around. I have learned the hard way who my "real" friends are, those on Facebook and in real life, and as much as it hurts to realize that some people really are all about themselves, it's been a good eye opener. 

Whether or not I will continue to do my advocacy work in the future is up in the air right now. At this moment taking care of my Mom is priority #1 and taking care of me is a close second place. 

My life and my future are completely on hold for now. Everything hangs in the balance of how well Mom reacts to her treatments and whether they are going to be successful or not. Her "official" diagnosis is Cholangiocarcinoma, Cancer of the biliary tract. It's in her liver and her pancreas. It's not a good situation and the prognosis is bleak. But as long as she fights, I will fight right along with her. 

So, Dear Cancer, I just want to say this... I hate you. I hate you with every fiber of my being. I hate you more than you can ever begin to imagine. I hope you die the slowest most painful and most humiliating death imaginable. And finally Dear Cancer, you can go straight to hell as that is what you do to every single person ever diagnosed with any form of you; you put them and their friends and family through hell. Now it is your turn you evil bastard... DIE CANCER. DIE!!