Thursday, September 25, 2014

What to know about me

I think I may have written some of this before but I choose not to go back and read this blog because it is so emotional and grammatically hard to read since it is often written during crying spells, pain, and at odd hours of the night. So since I had major surgery and I am doing chemo again I think it is time for a refresher.

Just because I look "good" --fixed my hair, have makeup on, and not in pajama's, doesn't mean I am feeling good. Just because there is the class that says "Look Better, Feel Better" (this class is promoted by the makeup industry to those going thru cancer). I fix my hair and get dressed (currently only when leaving the house, I know many moms who are like that too!) because I don't want to look horrible even though I feel horrible. It takes a lot of energy out of me to do this and often involves planning days ahead to go out--one day get clothes out, another day bath, another day fix hair, and on the day I go out doing nothing but the outing to have energy for it.

Just because I haven't lost all my hair doesn't mean the chemo I am taking is not that bad or hard on me. Chemo is not just one chemo, their our MANY different types of chemo for each different kind of cancer. I, thankfully on this occasion, was born with very thick hair, so my chemo has me loosing about half of my hair. Now, while I know that it is better than having no hair, I still loose my hair all the time and quite annoying, clogging sinks, tubs, my bed, always picking off hairs.

Again, this goes back to different chemos. Just because you know someone who worked through chemo and ran a 5K doesn't mean I can or that I am lazy. Even the same chemo effects people differently. Plus, the surgery and the neuropathy induced from chemo makes it painful to walk, and I am always tired (one reason why I will be getting iron infusion for now on). And other issues I don't want to talk about.

For me, if you have an alternative, please feel free to post it, but if you want me to try it, please consider that I am unable to try all the different cures out there because of cost, unless you are going to buy it. I don't want to tell my kids that they can't do things and we need to eat bread and water (we already live off cheap meals) so I can try and sort through all the different cancer cures out there in hopes of finding one. I have researched many and it is overwhelming the different ones and then making sure you are getting the right supplements because not all supplements are created equally. It was also hard to find people with my specific cancer and the spread I have with a positive story. Example, the closest I found was a stage 1 (earliest stage) that *had surgery* and then did this alternative cure. Well, stage 1 doesn't get chemo or radiation for my cancer so the surgery was the treatment. I do believe there are alternative treatments, I just don't have the full ability to try them all until health insurance covers them. I think of Steve Jobs who had all the resources and couldn't find a treatment.

Even though this blog has been sort of sharing what I have gone through, it is no where near what I have gone through. I haven't post about 70% of the crap. So know it is worse than what you read. And this goes to anyone I talk to in person.

I felt really stupid as soon as I was dx with cancer. I kept thinking of a person I knew who had cancer. I wish I could have been different to this person but I couldn't then. I had no clue about it until I had it. And most likely you will not have a clue either even as I try and explain some of it. That is the *peace* you have when you do not have cancer. I wish I had the peace of not knowing. But having been on both sides it does make me understand and try to understand the non cancer person and where they are coming from.

For me, it is not the "stupid" comments that hurt so much as the not saying anything and pretending cancer is not there or that cancer would go away. I can not pretend it away or ignore it.

I wish I could be that gun ho cancer person that is often the poster person for cancer, I wonder if it is a myth of sorts or at least an omission of the whole truth and glossed over the bad parts.

And some more things to know that resonate with me taken from a list I read online:

“It’s okay to say or do the ‘wrong’ thing.” I did and do!

“I need to know you’re here for me, but if you can’t be, you can still show you care.”

“I am terrified and need to know you’ll forgive me if I snap at you or bite your head off.”

“I need you to listen to me and let me cry.”

“I need to feel hope, but telling me to think positively can make me feel worse.”

“I want you to respect my judgment and treatment decisions.”

“I want you to give me an opening to talk about cancer and then take my lead.”

“If you really want to help me, be specific about your offer, or just help without asking."

“I love being held in your thoughts or prayers.”

“Hearing platitudes or what’s good about cancer can minimize my feelings.”

“I don’t know why I got cancer, and hearing your theory may add grave insult to injury.”

“Don’t take it personally if I don’t return your call or want to see you.”

“I am more grateful than I can say for your care, compassion, and support.”

“I don’t want to hear that I’ll be just fine.”

“I am unique, so please don’t compare me.”  Said one survivor, “Don’t tell me how wonderful Lance Armstrong is, not letting cancer get him down’ . . . you don’t read about when he was down or puking or tired, and when you compare me to him or any other famous cancer survivor, I feel like I am less-than because chemo is kicking my butt.”

“The simplest gesture, like a text message every day or two, can mean the world to me.”

Visit—without expecting to be entertained.

Deliver meals (restaurant or homemade) or give food gift certificates.

Have their house cleaned, or clean it yourself.

Help with their children.

Reprinted with permission from Help Me Live, Revised and Expanded: 20 Things People with Cancer Want You to Know. Copyright © 2011 Lori Hope, Celestial Arts, an imprint of Ten Speed Press and the Crown Publishing Group, Berkeley, CA.

Sunday, September 7, 2014

I didn't want to write

because it is too hard emotionally. But I want to write something about surgery before I start chemo.

Surgery was awful! Duh! My first post surgery memory waking up with a NG tube. That is the WORST thing EVER!!! I pray I never need another one. I cursed a nurse out over it. One nurse calmed me gently and kindly another nurse was mean and rude trying to calm me. So I think know which nurse I cursed out. After that was taken out I finally got sleep. I woke up the next day and the drs came to visit. They ask how I am doing and I say "Wow, surgery wasn't that bad and I am doing better than I thought I would be doing--emotionally and pain wise." Now here comes the "duh! you are so stupid" moment.----When finally after a week I start to think and realize it is the DRUGS that made me say that. The drugs now get lowered and lower it hits like a ton of bricks, this sucks and my brain can now THINK and SEE and FEEL what has happened to me. Oh the things I would have written if I had wrote every few days since surgery. I hate to even think about it, that is why I didn't write. I have been so low and I am trying with all I have to cope. My body and mind is so destroyed and broken and hurt, and hurting. My brain can hardly cope and process it, I cling to stupid games and busyness. Watched ALL six seasons of Reba the tv show. And now homeschooling diverts my attention, which I do from my bed. Laying down is still the most comfort I can have. Pain patches (3 at a time!) and pain pill is what I take to help, but still walking and moving causes pain and tiredness. I use a cane ( I refuse to use the walker the dr rx for me) that helps make me more steady. Being tired and having pain for so many weeks since surgery was in JUNE gets me so down. I will never feel health again it seems, especially since chemo is starting now. My hair is also falling out for the last few weeks and I haven't even started chemo yet.

Chemo starts Tuesday and will last 6-7 mths. I will get the chemo pump again that I will have attached to me for 3 days. I had surgery to put the chemo port back in again. I had a ct scan Thursday and I am very anxious to get the results. My surgery in June got clear margins (the best result you could get).

I had someone say "Oh that won't be any big deal. That will be easy, no problem." when commenting on something that I should be able to do. I didn't know what to say, I just held back the tears, and wanted to say "Yeah, easy for the normal person, but super hard for me and it will likely cause me to freak out." I didn't say that to them because would they even understand how a simple task for them could cause such pain and stress for me?

I so don't feel like writing. It just sucks to think. It makes me cry.

PS If anyone wants me to do ALL the MANY, MANY, MANY the alternative cures for cancer I will be more than happy to take your donations for it since my insurance doesn't cover it. And please tell me which of the many, many, many alternative cures for cancer will kill my cancer.