Thursday, January 12, 2012

Never To Late For A Reaction....I Guess

Yesterday, we had a visit from nurse Alex (a guy) very nice, while Larry was out. As he was doing his evaluation he was asking Marco about his surgeries and where he is right now.It always seems to puzzle people to hear Marco's long history with cancer.
They just all shake their heads in disbelief of everything Marco has had to deal with in the
past 4 and a half years. At the end of the the history run down they always ask....How are you dealing with all this now? Well, what do they expect him to say...okay Marco says is what it is and that is pretty much it.
Then they look at me with a sad face and ask and how are you holding up?....why do they have to give me a sad that puzzles me. I think, I give them that look like, what do you think? How would you feel? So I give then Marco's answer..which is"okay". We are okay, we have been dealing with it for so long and we have known what the prognosis would be and how aggressive the cancer is with no known cure as of yet. We have been put in the situation to understand and be okay with it, I guess. Sometimes, I think if we should be reacting differently to justify the sad face reaction.
As I hear Marco telling him his history with cancer, it just starts to boil my blood to play it all back. Its just ridiculous, it makes no sense even trying to comprehend all this shit. It makes me mad, after not being able to have a reaction to the brain tumor for so long, I guess it just started to build up now and I wasn't able to let it out before.
I find myself feel so overwhelmed with emotions at times, I feel mad, sad, so upset I don't know what to do with myself....but I take my ass to the bathroom and cry.
It gets pretty overwhelming at times, when Marco and I talk about "If something happens"
scenarios. We need to prepared for anything, but some of the shit is just crazy.
I always say I am holding everything up (or at least I try) from one corner I
have Marco, on the other the kids, the other corner the family as a whole and
the last corner all the scared shit-less and worries we all carry and then there is
me ..... holding all the structure on the inside, knees shaking trying to hold all of it together.
Marco woke up with a slight headache this morning, which has come and gone. My first reaction would have been to get on the phone and call Dr. Trisal, Dr. Chow at COH but I know we have to call hospice if it gets worse. So keeping an eye on that.
His appetite has not been as good as it has been but he eats enough to to say he had something to eat. He has been feeling very tried, but he tries his best to get out of the bed to get at least something going to pick up the kids (no he is not driving, he is on strong medication) doing little things here and there and getting some paper work done for " if something should happen" kind of stuff. But all in all okay..........
We try our best to take it one day at a time and keep it together.


Simons Family of 5 said...

Hi - my husband has a eerily similar cancer that originated in a muscle in his pelvis and has since spread to his lungs and liver. I am so sorry to hear about your latest news. I just ran across your blog and am now following is almost therapeutic to see that there are other people like my hubby and I that are going through this. I hope to stay in touch with you and will check your blog often. I have a blog as well that I just started this year.
Best wishes - Liz

Anonymous said...

I had a student ask me if I have emotions because I am always so serious and hardly joke around. They asked all sorts of questions.. and then one asked.."haven't you ever cried in front of your students?" and as I was about to say UHH.. NO!.. I remembered the day I was in my first year of teaching and I got a text from DLP. She never text me when I was at work. She could always wait until I was out or she knew I was on my way home. And I checked it only to regret checking it during class. All she put was "it came back in the lung." That was the most horrible feeling to be somewhere,not home, and get the most horrible unfair heart wrenching news and then wondering has the clock started ticking or will he be the lucky one that gets to live with the pain for a long time. I can picture myself vividly just standing in front of my desk looking at all those kids thinking.. wtf is wrong with you! you are 12 or 13 and you make people's lives difficult.. knowing difficult had entered our lives and it was an invisible beast of a mass. They had a life lesson that afternoon. Time has always been like the ultimate prize..Every surgery was a relief because it bought more time. After viewing the movie "In Time" with Justin Timberlake, I swear if I could I would steal time from some idiot wasting theirs to give to Marcito. I think all of our reactions are similar Marie. Nothing but anger and saddness, disbelief and desperation. Let me tell you that it feels like COH kicked us to the curb because you were regulars and you brought your whole Multi-tribal clan with you at all times. :) haha. I think the last surgery we were 19 rally monkeys and counting.

Anonymous said...

I believe that people want to try to make you all feel better, but know one knows they same the same thing..."how war you doing" "How do you feel" Generic safe topics. OR else would be yelling and crying and asking why is this been happening to a wonderful man and an amazing family. You all have great outlooks of lifes and your children are amazing and have bothe you characteistis (the good ones). Its a horrible thing to happen to someone and especially someone so great as Marco. All we can say is that we love you and we are here for you. We are all going thru this together...the screaming and yelling, and cussing is there but its in a dark room or under the covers of night. But we get it. We understand that things are shitty!!!!!!!!!!!! Kick it to the curb and dont wase that day that you still have with Marco on eachother, hold eachother and remember the great time. You need to vent yell, scream whatever. I'm here for you babe@@@@@@@let the cussing begin.
Love Hello Kitty in Temecula