Worn down

Oh, how you worry
Oh, how you're weary, from fearing you lost control
This was the one thing, you didn't see coming
And no one would blame you, though
If you cried in private
If you tried to hide it away, so no one knows
No one will see, if you stop believing
(Oh My Soul by Casting Crowns)

Yep, so very weary. Yep, I have no control over anything. Yep, I never imagined my life would have turned out like this is a huge understatement. Yep, I do cry in private because I avoid the public because I could easily cry there. It is the conflict of hiding all of this and then wishing everyone could really know but they really wouldn't want to know it all. Not even the drs I encounter really want to know. I have stopped believing things will get better.

Can't believe it's been that long since I have posted. I hate to post again the same horribleness, that is why I just don't post. I am no better mentally and physically my body has gotten worse. Cancer still stable but I do have "things" that keep popping up and then they do more tests and then more watch and wait. Drs appts stress me out and they happen frequently. The surgery wasn't a forever surgery and things don't "hold" together like they are supposed to. As time goes by it causes me more side effects and pain. I am trying so so hard to be ok, but just hanging on mentally and physically. I still avoid social situations because of the unpredictably of my body and pain. If unavoidable to be in public and interact with people (which I go to great lengths to avoid) it is on pain meds. It is mentally and physically exhausting to be with people. I still have a huge hard time with the question of "how are you". It is the worst question ever because it is decision to either lie and say fine or tell the truth, which I still can't really say the whole truth. Do they really want to know? I wish I could be real and say yeah I am doing horrible. But I can't tell you that since I should just be happy I am alive. I did recently answer that question saying that I am having a hard time with pain and ongoing medical problems. And I get the deer in the headlights look.  It's not their fault but I am so sure they just want me to say I am ok. I am alive but it is so freaking hard everyday. To me it feels like I am trying so hard everyday to go on. I am giving it my all. I am coping the best I can.

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.

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.

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. 

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!

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.

Chemo

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
http://www.mayoclinic.org/diseases-conditions/vertigo/basics/definition/con-20028216 
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.