Tuesday, April 18, 2017

I can always cry

I don't write anymore since it is just more of the same down things. So you can read this post or any of the older posts and they will sound the same. Who wants to hear that. I don't want to hear me. I hate complaining but this is my reality. I do my best to stay numb. I'm not even trying for happy. Just being. I still play the many mind numbing game apps to keep me from thinking too much.

I can always cry. Still. My dr says it is because I have cancer, stress, anxiety, and depression. This is nothing new. I got that the day I got dx. I HATE that I can cry. I'm always on verge of crying. I HATE that I cry. I always try not to cry but it doesn't work. I am crying right now! When will I not have anymore tears? When will my eyes be dry and give up? I HATE that I can't stop it. But to quote a song "I'm tired, I'm worn--My heart is heavy from the work it takes to keep on breathing--I've made mistakes I've let my hope fail-- My soul feels crushed by the weight of this world--And my prayers are wearing thin--I'm worn before the the day begins" There are better parts to this song, but this part is me. It is like I'm in quicksand. I can't get out. Trying to just makes me feel worse, so staying still is the best I can do. I have no desire to go anywhere. I still only go to the cancer group and with those who have cancer makes me feel like it is ok. It takes a lot physically and emotionally to go out, even for my kids to their things. It is mentally and physically exhausting. It is like being an actor who is having to improv. I'm not being my real self, just trying to act like someone else. Facebook is as close as I get to going out in the world.

My physical health influences so much of my mental health. This past year I have been stable, no huge growth in my lungs so far. Cancer blood marker stable. Liver function horrible as usual. It really is a miracle stage 3 to recurrent stage 4. I still wonder how I get stable after all of this and others don't. I wish I knew so I could give it to others to have too. Weekly painful partial blockages and daily neuropathy pain and exhaustion being the some of hardest hurdles that get me down. Other things that I can not bring myself to type out.

This past year was also consumed by getting help for my son who hurt his hip in gymnastics. It took forever to get a proper dx and then find a dr who could do surgery on him. We had to go all the way to Shriner's in St Louis for surgery and continued follow up. Kids are so different in dealing with medical crap. My son didn't seem to get down and just pushed through. And it was hell the recovering and the surgery. He was bedridden for months and had to lay flat and then relearn all over again to walk and get strength back. He always had hope. At least he never showed me anything else. I wish I was a superhero like kids. Two kids in the small world of boys competitive gymnastics circle in our region got cancer. WTH is all I think. Cancer in kids makes no sense. It does seem like kids handle things better than adults. I wonder why? How can I be more like a kid? Is it that they don't fully understand things. Is it that they are surrounded by this nothing is more intense and powerful than a parents love and hope for them to be well?

I still can't go to church, you know the whole crying thing stops me from going. And their dad ain't going to get up and take them without making a fuss so why ask. And I can't just drive and drop them off at the door. You have to sign kids in and out and then they would wonder why I don't stay at church and even may say I had to stay since the kids are there. They even had a family VBS so of course my kids didn't go to that because of me not being able to do it. I hate that my kids don't get to go because I me. I try and teach them some things at home. Like I did an Easter lesson, yeah but it is so hard because again the crying. I have to get into a mindset of I am teaching you math (something that doesn't make me cry) because if I really think, I will cry. And I HATE crying for ME, you and everyone else can cry all they want.

So much is upside down and not right in my kids life. They may know this a little, especially the older ones; the younger ones, this is all they know. I just hope one day they will understand I tried my best, this is all I can do when I am in quicksand and trying not to sink any farther down.

Thursday, January 14, 2016

I get good news

Feeling so relieved! I got a stable ct scan of my lungs and good lab from my cancer marker, though my liver numbers were in the abnormal high range (though the dr didn't comment on them, so I guess must still be ok). Another 3 months of no chemo!

I am so grateful, but also perplexed. Why do I get the miracle of continued stable news and not others? I hate that others are just trying to stay here but are getting closer to not being here. I pray they get a miracle of more time for them and their families and friends.

Thursday, January 7, 2016

Just Another Update

I guess I never did the update from my September labs and scan but it was pretty good, cancer marker was good and scan only showed just the littlest growth in my lungs so that still puts me in the watch and wait mode. I was supposed to go right before Christmas and get scan and labs again but I put it off till January 11 since I didn't want any bad news while I had to be around the kids so much during Christmas break. So now the nerves start back up for Monday's appointment. I just know and plead it will be ok because I just feel like I can't handle anymore. I don't want to handle anymore. Whenever I let the thought of doing chemo creep into my thoughts I start to panic. Since my diagnoses my life, physically and mentally, as never gotten better only worse. I try to stay "ok" and find strength from some amazing people stories and think if they can do that I can do this. But it is so dang tiring to get up everyday and constantly tell yourself to not cry, stay strong, and keep going despite the physical pain and emotional pain. It is never ending fighting. I have been so so tired all the time so I feel like I have no energy to fight many days.  

Another friend died of cancer, it was what seems sudden to me. But probably not to noncancer people. The outside world hears stage 4 cancer and of course assume they will die. But I think, I can't believe they died. I really thought a cruel joke when I hear and can't believe. I had just been with this person 3 days before and they "looked good, walking, driving, eating, drinking". Cancer doesn't care how good you look, because most cancer is on the inside looking horrible. Pain can be hidden with medicine and makeup and clothes do wonders to hide the ugly cancer. 

I don't know which is worse: A sudden unexpected passing or a "you know it's coming because they are bedridden" passing. The sudden ones scare me because it makes me think it can happen to me at any moment and I am not ready. The long ones are prolonged sadness. And scares me to think of myself bedridden and all that means. 

I've also been sad because something that gave me hope and joy has now turned into the opposite of that. That's all for now, I want to stop thinking and go play Angry Birds or Words With Friends to make my mind go blank. 

Sunday, September 20, 2015

Treading Water

I didn't write in February, March or April because I was so f'ing sick from the chemo. I did quit chemo and went into the watch and wait mode. My dr was ok with it and really could understand how bad I was doing.

I didn't write in May because I went to Florida for 3 weeks. My son qualified to National gymnastics meet down there. And we took a family trip to Disney while there. The beach was heaven. I loved it, I didn't want to leave Florida. The trip was paid for by an advance on my life insurance, that was great to have that resource but depressing that the life insurance people give you the money since they know you are going to die. 

I didn't write in June because I had my ct scan that showed growth in spots on my lungs again. And you get to play the watch and wait and guess game. So I have another ct scan at the end of September. 

I didn't write in July, August, and most of September because I am trying to soak up as much non chemo time as possible. The thought of more chemo sends me into melt down mode. How can I physically and mentally do more chemo?!? My body hates it, I don't breeze through chemo like some others can. 

I didn't write because thinking about cancer sucks. And I go all day trying not to think about it without any success. It is constant fighting bad cancer thoughts away. My mental state has really gotten worse. And writing just hurts my mind so much right now. I am writing now only because I wanted to write something before my next scan. 

It's been a year since my big surgery and it still sucks, still pain, still hate things about it. It messed my body up so bad, it only feels like it traded one bad thing for many other bad things. 

I have to stop writing now, I'm so upset and crying. I hate crying because I am so sick of crying!

Sunday, January 18, 2015

Really want to quit

I am really sick of chemo. The sick days seem longer and my "good" days aren't that good. I just so so so want to feel better. I know it will take about 6 months after I stop the chemo to start feeling better and I just want to start now. I am seriously thinking about not doing the last month. Will that extra month even help or matter? My onc dr. says no one knows, he couldn't recruit people to do less than 6 months for a study. You know the whole thing with our society that more is better. I only keep thinking how the chemo is messing me up. I am not the person who will regret not doing it if the cancer comes back. I didn't regret not doing the surgery. Till this day I still think I am so happy I got those years without it.
Chemo is hard on my body and my mind. Feeling like this, I have no idea how I would ever cope with "chemo for life".  I am supposed to go back January 26 so I have till then to decide.

Tuesday, December 16, 2014


I haven't written because it sucks and I am horrible most days. I have to hold it all in and when I write it comes out too much and it is hard to stuff it all down again. I am sinking down and now feel like I see cracks in my kids too where they are not who they used to be and yet I just can't talk to them or help them cope when I can't myself.

Every third day after chemo I swear I will not to the next round of chemo. It is just so hard being sick and so much of the time. I hate being sick and fell like I will never be well again. I am half way through with this chemo if my scans come back stable and no growth.

On the medical side my cane really helps me not feel like I am going to fall all the time. I have a messed up port that gives nothing but trouble for every chemo. I have ear rocks aka benign paroxysmal positional vertigo
So basically I get dizzy real easy and mostly when I turn in bed or move my head in certain positions. Supposed to see a special dr about after the holidays.

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.