Rough Day! Well Morning anyway...

Cancer I hate you. HATE YOU HATE YOU HATE YOU.

Well, I am filled with good news and yet still very upset.

A bit of background.. My Mom is not always the most pleasant person to be around. Our relationship has been strained in the past but the cancer has seemingly brought us closer together.  Mom can be a challenge to even be around on some days, nasty, negative and just not a nice person. This is how she has always been but today brought that to a whole new level.
We got to the appt and of course there were papers to be filled out. She was FURIOUS that they asked her to do that. I offered to do it but she get angry at me for asking and said NO. I opted to sit quietly and let her deal with things. You can probably imagine the reaction when they asked her for a urine sample... She snapped that poor nurse's head off and ripped the cup out of her hand and stomped off to the restroom. I was so shocked that I couldn't even speak.
So we go to the exam room and the nurse who was absolutely a dream!! So sweet and nice, begins to ask the normal questions. She asked what brought us in today. YIKES. Mom snaps at her and says Who the Hell even knows!  At this point a lightning bolt to my head would have been most welcomed.
We got through the preliminary questions, blood pressure, pulse etc which were perfect, and the nurse told us Dr would be in very shortly. Mom says He Better Be!! I am NOT wasting my time and money here all day!
No lightning bolt but the Dr did come in pretty quickly! (THANKFULLY)  He starts asking the normal questions and Mom was so rude and nasty be decided to talk to me.  (Can't blame him for that.) Anyway, he asked me what the oncologist was looking for as far as this visit. I explained that the right kidney has a tumor on it's pole and the left is inflamed and we just want to make sure there is nothing more underlying. He pulled up the CT scan images and sits between Mom and myself and goes over everything very thoroughly with us both. He thinks that the "tumor" on the right kidney may be a cyst (EXCELLENT NEWS) and that the left kidney's inflammation may be "normal" for Mom as it looks as if it MAY be a type of birth defect. ALL of this is such great news!  I figure this would make Mom happy but nope. It got worse from here. The poor doctor mentioned MAYBE doing another scan using nuclear contrast and Mom hit the roof! She never even heard him out, just yelled NO. NO MORE CONTRAST. NO. (background here, the barium contrast really, really exacerbated her bowel issues and she had several very embarrassing episodes during the last scan. I was so heartbroken to hear her crying from embarrassment. So I promised her never again would I allow ANY doctor to use barium again)
ANYWAY, I told her to please stop it that this test was completely different and there would be no barium, it is an IV drip. She still would not have any part of that.
We finally got to the point that this appointment was useless. The doctor was not even addressing her, or trying to as she was just being so stubborn. He asked me what I thought. I looked at Mom and I was honest with him. Mom has been through so much already, seen so many doctors and had so many tests, along with weekly chemo and blood work. I thought it would be best, as long as he agreed, to wait until her next set of scans, which are in early December, then compare all 3 sets and see if there is any changes. If not, then I am pretty sure she will tell him she will  not do anything further.
I must add, all of the kidney function tests have been normal. The whole reason behind this appt was to address the inflammation, and err on the side of caution as there is some kidney disease/cancer in her family.
SO, there is a follow up appointment made for January 10. Whether we go or not remains to be seen.
She was STILL absolutely furious and miserable and nasty when I got her home. I KNOW she is frustrated and so tired of doctors and medicines and chemo. I just don't know how to ease her temper on days like this.
I know this is long and probably sounds terrifyingly whiny. I am sorry, I just needed to get this off my chest.

Cancer, you suck and I hate you. I hate how you are fucking up my Mom and her life and how you are making mine a nightmare! DIE CANCER, JUST DIE!

It's been awhile!

Dear Cancer.. Die would ya?!

It's been a while since my last post here. No reason other than I have been so busy between Mom and chemo and other doctor appointments.

At least in the past several weeks she has been human to me. I know I am the only person she has to lash out at, but that doesn't make it a lot easier to deal with at times. I have, however, located an online support group for cholangiocarcinoma!! I have gone from feeling like I am the only person in the universe to having a whole group of people who either are CC patients or caregivers or family members. Bottom line? I found people who get this and can offer advice and help and support!! YAY!!! It's really been a wonderful help and I am so grateful to have stumbled onto it!

Now, on to Mom news..

We saw the surgeon who put her stents in last week. He wants to change them but wants to wait for her to finish chemo first. Chemo is slated to end mid December. It was a 6 month course and the oncologist has decided to stop it and we will wait and see how things go. I am not too thrilled with this but more chemo will become toxic and that would be very bad. So, we will see what happens. Next round of scans will be in December as well so they may change the entire scenario anyway.

Monday coming up we are seeing a urologist to have her kidneys checked. The only tumor that did not shrink much was the one on the pole of her right kidney. Now she has inflammation in the left one and the oncologist wants another opinion.Not a bad idea as there have been cases of kidney disease and kidney cancer in her family. We need to just make sure that there is not something else going on  now.

I am exhausted mentally. I am so happy for the good reports from her scans and for the continued good news on her labs. I am so happy to see her looking so well. But in the back of my mind all of my cancer experiences are lurking and threatening to come cascading out all at once with their bitter and ugly realities. I know that this cancer is not ever going to be cured. And I know that once it starts to grow again it could just go like wild fire and be unstoppable. I know that this is reality and I hate it. I try to keep it pushed to the back of my tiny little mind as much as I can. But.. every now and then....


I hate you cancer. I hate you so much. Why did you have to come into my life again? Just die would you???

Dear cancer.. Man how I despise you!!!!!

Mom was here yesterday for supper. It was a really nice visit. Lots of lighthearted conversation as well as some mutually understood silences.

Mom saw her regular doctor on Friday. Although she did not tell me about the whole visit until Saturday, she did tell me he said her kidney is enlarged. I did not press for more information as I did not want her to stop talking. She knows I document everything to share with the oncologist and I have to be very careful not to pressure her or she won't tell me a damned thing. Just the way she is. It is on her terms or not at all. It's taken a bit of trial and error and I am still not 100% with getting the information out of her but I am able to get enough to keep on top of anything new or significant.

Anyway, I digress.. She was here yesterday for supper. Her appetite was good and she seemed to enjoy the food. We did not talk a lot about the medical shit, just kept it light. She stayed for a few hours then she headed for home. After she left Trev made a comment that set me back on my heels... He said it looks like Nanny found a new place for her spray tans.

Let me explain; when Mom was so jaundiced back in June, Trevor made an innocent comment that she looked like she had a really bad spray tan. He was so right! That was the best way to explain what she looked like.

So, last evening when he said that, my heart skipped a beat. There was an incredible complete silence for a few seconds and Meg added, somewhat hesitantly that yes, Nanny was looking yellowish again. DAMMIT DAMMIT DAMMIT to hell and back...

A couple of thoughts cross my mind about this. 1) when the stents were put in her liver the surgeon told her that they would need to be removed/cleaned after a period of time. (Need to check my notes about this) and 2) if that IS the case then maybe this yellowing is nothing more than a signal that the stents are in need of cleaning or replacement? Yes I know that this cancer is terminal but I am NOT ready to throw in the towel yet! In all honesty, I may NEVER be ready for that, but that decision will be made on my behalf, sadly.

Oh cancer, you robbed me of another night's sleep and I am getting VERY sick and God damned tired of you doing this. WHY WON'T YOU DIE!!!??????


Thinking of starting an online support group for only children who are in the role of caregiver to their parents. As alone as I feel, I know I cannot be the only one in this situation. And I cannot even begin to explain how good it would be to have someone, ANYONE who shares or has shared this experience to talk to.

Dear Cancer.. piss off...

The much anticipated CT scan is over with and the EKG and ultrasound of Mom's legs are done, too.
What a long week she has had.

First, she insisted, rather venomously, that she would take herself to the scans and she did not need or want me there. Okay, independence is always a good thing. Even if I did have all that GUILT to deal with over not being with her. Sigh.. Turns out maybe I should have been there, but maybe it was for the best that I wasn't.

The contrast drink she had to take was a huge problem. She has been dealing with horrible diarrhea since the beginning of the chemo treatments. It is uncontrollable and comes out of nowhere and just HAPPENS. The drink she had to take also causes diarrhea.. intentionally as it has to be evacuated from the system as soon a possible after the test. Sadly, coupled with the issues she already has, this stuff went through her so fast that there was no way to prepare for it. It was already a nightmare in progress before she even got to the hospital.  Sigh.. this breaks my heart. She was so upset and so embarrassed and so angry by the time she finally got home, dressed in hospital scrub pants as hers were not wearable. I feel once again completely helpless.

It's so hard. I try so hard to help her out. I try to recommend things that would be helpful and beneficial. I try to explain to her how to take the meds in order for them to work more efficiently but in Mom's eyes I don't know what I am talking about. It's so hard for her to acknowledge that maybe I do know what I am talking about after all. She is a very stubborn and proud lady. That doesn't always work in her favor. Especially now.

So, I write notes. I document everything and keep it in her binder; the cancer chronicles. I write down every symptom, every little complaint she makes to me. I keep details of everything so I am able to share them with the oncologist. She doesn't believe that any of it is important. Maybe not but you never know on a cancer journey what really IS and is NOT important and what could be signals of something serious beginning.

My project before now and next weeks chemo is to write up the ton of notes about the nightmare scans, find a way to present the fact that she will NEVER allow them to put her through this ever again (and I do not blame her) and hopefully come to a compromise on future scans. All of this while I have the waiting on the results on my mind, too.

Dear cancer, I am not only hating on you, but I am asking, begging for you to just go away! FAR AWAY and leave us alone... You are not welcome here!

Pain, water and good reports..

Dear Cancer.. YOU SUCK.

Mom has been having pain, lots of pain but not in her abdomen with this shit is living. It's in her thighs. Both sides. It's been a challenge to find out what is causing this but I am determined!

We saw the doctor this past week. Surprisingly we got some excellent news. Mom's tumor markers have decreased dramatically and by all standards this is an indication that the chemo is working!! (Take THAT cancer!) Now we are waiting for the CT scan appointment so we can see what is really happening in there.

To say we were happy is an understatement! BUT this news was slightly overshadowed by the pain issue. I asked it this could be from the Neulasta injections and the doctor did not think so. He actually was not sure what was causing it so we are waiting for an appointment for an ultrasound as well.

In the meantime, I have been able to talk to a few of my lung cancer people online and found out a few things.

1- Neulasta could be the cause. Most people who have had the shots have had problems with pain in the muscles, bones and joints.

2- It may be the chemo.. Gemzar apparently has a tendency to cause pain like this in some people.

3- It COULD be caused by the accumulation of fluid in her legs and ankles. One person recommended that she try some compression stockings, so I have ordered 2 pair and have my fingers crossed that they will make a big for her!

In other news.. Mom is going to be a great grandmother!!! She is VERY happy and excited about this! It really gives her something happy and positive to focus on. We ALL know that makes a difference!!!

So.. now we wait for appointments and stockings... Hopefully both happen soon!

~C xx

Reality and Doubts

Dear Cancer, I hate you so much.

Mom is still struggling so much with the intestinal issues. Mainly the uncontrollable and sudden diarrhea. It breaks my heart to hear her so angry and embarrassed because of something she has absolutely no control over.

I keep telling myself that I have to stay positive and stay "UP" for her. I am trying to focus on her attitude about this, be it denial or sheer lack of knowledge about just how serious and how bad this situation is. She continues to tell everyone she is going to beat this, that she is going to be fine. I see things a little differently; I see her weight on a steady decline, I see her blood work constantly slipping, I see her color fading.. I also know that this cancer is not something that is beatable. At least not when it is found so late, so advanced. I also know that the doctor told me 6 months might be a stretch. That was in July. Sigh... I carry this all around in my mind and it DOES get to me a lot.

I see people on Facebook whining and bitching about how bad their lives are and I laugh at them. Yeah whatever.. suck it up. Most of those people have absolutely NOTHING to be bitching about. Shit I wish I had their problems. I guess when you face this battle head on it shows you exactly what DOES matter and what really is just so petty. Bah..

I wonder each morning what will happen this day. I make that morning phone call to check on Mom and hold my breath to see how she sounds when she answers the phone. I can tell in her "Hello" how she is, it's normally very obvious when she is not doing well. The past few days have been tired sounding but okay otherwise.

Having been able to spend time with Jared while he was here for 2 weeks was wonderful therapy for her. It was really hard to see her with him though; knowing in my heart and soul that it may very well be the last time he sees her alive. Holy cow, how DO you deal with that?? I don't know how to so I just take it as it comes and hope and pray for that miracle that I know is a long shot.


So, that's what you are doing to me Cancer. I hate you and I will never, ever be the same person I used to be because of you. BUT... I will take this all in and learn from it and strive to become an even BETTER person. You will not win Cancer.. Never!!!!

Dear Cancer... I still hate you.

I am in a weird place lately. I have some of the most amazing friends who never, ever fail to check in with me, let me know that they are there and that they care. They really do make this nightmare just a bit easier to cope with. But I am so hyper sensitive and so angry under the surface. And I am scared.. TERRIFIED.. All rolled into one big mess.

Thank you to all of you who do take the time to let me know you are there with me... and to the rest?? I just don't know what to even say to you.

"The rest" are the ones I have never ever turned my back on. The ones I reached out to while they were on this road. The ones I put countless hours into trying to find the right things to help them, the right words, the right advice to share. Some of these people have totally ignored me completely, some have tossed a comment my way here and there but have not gone out of their ways to really give a shit. 

Hell I read a comment this morning to another support organization from one of these people saying how great and wonderful they were.... SLAP, right in my face. Sigh............... I know, I know this is all being completely magnified because I am so stressed and so scared and so alone in the day to day stuff here. I know I do a lot of good for a lot of people. Just that ONE comment from someone I really went out of my way for HURT TO THE CORE.

But again, I will somehow find a way to blame fucking cancer for this and move on....

Mom is doing okay. She had some issues on Tuesday this week so I had to change her chemo from Tuesday to Wednesday. All went well. Bloods were all fine and she went yesterday afternoon for the first Neulasta shot. The shot went okay but around midnight the side effects kicked in and Mom was sure a truck had come in and run her down in her sleep. 

Neulasta is notorious for causing bone, muscle and joint PAIN and Mom sure found that out! A lot of oncologists have their patients take Claritin for 3 days after the shot. Something in the antihistimine properties of Claritin seems to help ease the side effects of the shot. So Mom did take some last evening and I am sure she will take it today with no arguments!

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!!