Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Monday, February 28, 2011

Doing the Best with the knowledge we have

X came running into the bedroom screaming and crying hysterically, uncontrollably and inconsolably, waking me up last night. 

He told me dad had called him a bad word. 

I was groggy and suspicious about his tale knowing the day we had, that my cancer had grown, that I was again seeking treatment options, and that he'd said, even before this news, that nothing was making him happy, only basketball.

 I didn't question him. I just did as he asked: I held him tight, hugging and reassuring him that he was loved, etc. 

He's reacted like this to my reoccurences, or regrowths, before.

 Actually, he's matured with age, but has always responded in an age appropriate manner.

 We've known since he was 4 that he is depressed and anxious due to my "situation," that little problem that mommy has cancer that will probably never go away. 
With each relapse, he would have an age-appropriate breakdown. 
At five, he threw a temper tantrum, screaming kicking and saying he hated me and the few other words he knew. 
Temper tantrums are normal in 5 year olds, so what's normal for a 5 year old who hears mom's treatment has failed and will likely die?
 We've worked hard to make coping as easy as possible for him since my diagnosis: behavioral testing, counselors, group therapy, in-home behavioralists. 
None of these have fixed his breakdowns. None of these have cured me. So we do the best we can with the knowledge we have, and what we know is when one person in a family is diagnosed, the whole family is diagnosed.
We try to keep communication open so he has an "emotional language."
 We've read books, done play therapy, put him in karate, talked with him, answered his questions, and most importantly, tried to keep his environment happy, stable and full of love, role-modeling coping. 
When X said "nothing made him happy," before our bad news, I explained to him that was called depression, a serious form of sadness both dad and I have, especially in the winter.
 Seasonal affective disorder (SAD) is very real. 
I have suffered with it my entire life, as well as many members of my family.
 I told X depression makes you not like anything, get grumpy and frustrated, maybe want to cry or not do anything at all, and think nobody likes or loves you. 
Then we went to play basketball to work it out with me planning to get full spectrum lights for the house.
Full spectrum lighting, the most similar to real sun, is one of the few treatments for seasonal affective disorder. My mother used to shine lights on me when I was doing my homework. I'll do the same with X, but that will only take him so far with a sick mom.
Thank goodness we have a vacation to FL coming quick, but light is only a small portion of his needs. Fortunately, he talks to me. I explained to him that he doesn't always need to have something happen to feel terrible and "overwhelmed," in reference to his lie about the cause of his hysterics. 
I defined being overwhelmed as having too much happening, like school, basketball, therapy, karate, homework and my illness all at the same time, that it all feels like too much, and if one more thing is added, you feel like you'll go crazy!
 I told him I feel the same way sometimes, so does Dad and so does Nana.  
I remind him what he feels is normal and it's ok to be sad, angry, etc. What is right or wrong is how he handles those feelings.
But what happens when he can't breakdown with me anymore?
I remind him of his other support systems, and he has used them in the past.
This doesn't cure him, just as I have not been cured, but he is coping the best we can as we all are. 

1 comment:

Anonymous said...

you are an amazing mom.....I have tears in my eyes reading this. It is so hard on the kids. You are definitely doing the Best for X that you can!!
Stay Strong!!!!