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.