Friday Night Light and Sunday Morning Dark

Addendum—Sunday Chemo notes: 10 days out of the second chemo and my brain is feeling the effect of dead cells, I think. There is a pall that seems to cloud my thinking and my emotions. I get angry easier, cry for no reason, feel melancholy, and downright depressed. My life is good. I have a great family of whom I am so proud. We are not perfect but we are strong and wonderful. I love my work, my home, my friends and my family.

Ian and Me at Ocean Beach last year.

I have a powerful prognosis for recovery, yet I am so depressed. It can only be the chemicals that are killing cells within my body. It is difficult to define but it is a loss of normalcy that sets the color of the day to blue and clouds reason. It’s like the smell of a decaying mouse that is hidden deep in the walls of the house (remember that I live in the country ). I know that likeness is strong, but so is the poison that infects my physical presence. To those of you who interact me on a daily basis, please understand that I am not always clear and that I long to feel normal. I may spend too much time in negative thought when alone and it’s really a chemical thing. I thank you for your patience and understanding….. Love, Mom

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Quote that inspired this blog entry: “I remember my radiologist saying to me, “Your mission now is to ask yourself every day, ‘Am I doing what I want to be doing?’  And I do ask myself that, every day.  It try to make the answer yes, even if it requires me saying the word no and disappointing someone.   My experience was about letting go. It was about really experiencing all that was happening at the deepest emotional level, for that is where the big life changes occur.  That is where you meet yourself, where you begin remembering who you are and who you were meant to be.”  From Cheryl Crow in Crazy Sexy Cancer Tips

 

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It’s been an interesting week.  It’s very sweet how people want to protect me, but honestly work is good.  It’s hard to spend any minute of the day apart from the cancer. It takes over your life with fear and concern and the only relief is to have your mind busy doing something else.  Rationalizing to yourself that there is a “cure” and you should be happy with that, only goes so far when you are tired to the bone and unable to figure out how eating should occur.  Percentages of recovery and non-reoccurance still are not at 100% levels.  (see the new article in the links to the right:  Herception Proven to Benefit….)

 

The truth is that my life will never be the same, nor should it be.  So, I spend about 30% of the time trying to figure out how to make myself healthier, 30% the time focused on something else, like work, and 30% thinking about what is happening to me.  It’s still really new and really overwhelming and there are times that my mind is not my own, like in the middle of the night when I awaken with a collage of disjointed thoughts that feel drug induced.  OR when I am alone with no energy– and TV and reading just don’t get it. Time alone is a big problem that I am learning to change from sad and fearful thinking, into productivity (writing, working, making jewelry, etc.)

Mostly, I am OK—not bad, not good—but OK.  I hold on to the memory from the last treatment,  that by this time next week I will feel almost normal, although my mouth may hurt and I will still be tired.  I work hard at being positive and not letting the depression that sits just below the surface get the upper hand.  It is my work to do, this positive stuff, and you can only send me energy or prayers to help with that, or just be with me.

I still feel the “oh crap, I have cancer” whack in the head, the “not happening to me, really?”  factor.  I thought that would go away, but now I don’t think so. There are so many changes in what my life is like right now and I miss my vitality.  I work on visualizing next year at this time, me back to normal.  But I won’t be.  I will be different.  It’s interesting to speculate about how I will be different and ultimately I don’t know the result.

It is because of this mish-mosh of feelings and thoughts that I have decided that there are things I wish people wouldn’t say and I am going to write them here in a minute, when I have more courage ready.  They diminish me in a way that I cannot describe and, likely should not make me feel the way I do when I hear them, but they do. Everything that my wonderful colleagues, friends and family say and do is amazing and I am grateful beyond measure, but some things just don’t help.  Other things that people do are so special that I am humbled to be so honored. So, below I will make a stab at listing them.  Please accept my writing as a “thank you” for being in my life.

• I’ve learned that I have to take care of myself and put my health first and I’m doing that. I am finding out what my limits are, making some mistakes and then making the appropriate adaptations, asking for the appropriate assistance, and doing what I can.  Please believe me, that is what I am working the hardest on and I am being careful. So, don’t say, in an admonishing tone, “You really have to take care of yourself, don’t worry about work”.  I hear that at least a dozen times a day when I am at work.  Honestly, work can take me away from the cancer and makes me feel productive and valuable.  It’s a very good thing and I have it in its rightful place in my life.  I am delegating more and not worrying about the things on the to-do list that dont get lined out–saving them for another day.  (I am surprised when people are surprised that I am at work at all.) Passionate involvement in my work is a big part of who I am and I really need to be me.  Me with cancer, but still me.
• Don’t try to protect me from work by keeping tasks away or taking them off of my plate without asking me if I can do them or not.  I love what I do.  Feeling useful is a big part of who I am and I really need to be me.
• Joke with me at home and at work.  Forgive me for my really bad ones and for the multitude of cancer/wig/bald/cancer-card jokes I’ve been dishing out lately.  Jokes are a big part of who I am and I really need to be me.
• Spend time with me.  Enjoying being with people is a big part of who I am and I really need to be me.
• Forgive me if I still talk about the breast cancer for a while, I am hoping that the need to “grok” the situation will go away with a little time.  I hope, soon, to be me without that continual reference.
• When you ask how I am, know that if I am standing up, I am fine–I will sit, if I need to.  I need to hear normal greetings from everyone, I need to be me.
• Hugs (if you aren’t sick ) are totally wonderful and I will accept any and all of them.  Hugs are a big part of who I am and I need to be me.
• Forgive me for not knowing how to act about this, for this strange entry in the blog, and for sometimes getting “snippy” — of course this too, is definitely me!
• Know that I have most of what I need (could use about a million dollars ) but if I need something I definitely will ask.  That’s a new me.  So is worrying less, speaking out more, walking slower, sitting more, coming to work later (I turned off the alarm clock), leaving a little earlier, going to bed earlier, waking up earlier, eating less, drinking more water (you can always bring me water if you see that I am out–need help with that), caring more about you and about our students, missing my children, crying more, getting angrier easier, and staying close to love.

Many exceptionally sweet things happened this week that I will never forget.  Thank you Kass for Sprite and crackers, Carlos and Joanna for offering to accompany me to get my car fixed, Shelley and the office crew for watching out for me, Keith for not getting angry when I get snippy, Bill for sending photos of his dog, Herc, and Herc’s friends at doggie day care,  Amy, Corinne, Laurel, Lisa and Ian for calling me, and letting me rant or cry.

Learning Moment: My life has been forever changed.  Sheryl Crow had breast cancer.

MUST Read for my son, my husband, my son’s in law, my friends, everyone who knows and loves any man:  ‘Lonely journey’ for male breast cancer patient