Thursday, August 21, 2008

what is a day like for me

So, I am a pretty, "let's make lemonade out of lemons" kind of person. I am still hearing and sensing from some of you aren't "getting" it.

When I say "I am having a good day" means I am not in pain or chemo stupor where the world is managable. It means I MIGHT be able to walk around the park for 1/2 mile before my hips give out to pain. It means I am not overcome by the unbearable dread of dying and leaving my daughter behind.

I have always been the kind of person who believes in the light/dark of any given situation. I might be smiling, beaming, even when I see you, and while we talk, be delighted....but when you walk away, I need to recoup. I may sleep for an hour or four. It doesn't mean that I am being fake when I see you. It means I am delighted to see you. It also means I need to rest, because I am trying to get as much of the cancer into remission as possible before chemo is too much and we move into managing what is left......TONS, SOME, NONE.... I don't know. I don't know how long any of this will take. I keep being asked that. NO ONE knows.

They found cancer in both breasts, my liver, my bones (hips, shoulder, vertebra). This is Stage IV. Stage IV by the books means "incurable". Now, with my kidn, it might be managed chronically for decades, or for year. NO ONE KNOWS. Nor do I.

Does this mean I am suppose to walk around crying all the time? I can't. I don't have time to waste crying. When I see you, I LIGHT UP, because it makes life sweet. It also means, (if I knew in advance I would be seeing you) I gathered up my energy to see you.

It means not being able to lift my daughter, because the tumors in my spine prevent me from lifting anything beyond my purse. For awhile, my purse was too painful. Now, it is not.

Somedays, I can clean my own house. Somedays, I sleep.

Somedays, Becky (the person helping me this summer) let's me rest, while I listen to Bug's sweet voice playing in the room next to me.

Somedays, Becky focuses on cleaning for an hour, because I have energy, and I revel in cuddling with my daughter and reading or building something. I get run down, Becky steps back in.

Yesterday, Becky helped me unpack three boxes, and I fell asleep.

So far, I have felt Taxol take my breath away, and I have seen tumors shrink. I have so many tumors they stopped counting. But ONE of the ones I can feel, is going away. I worry the ones in my liver aren't.

For months, sleeping was hard, because of the pain. I could only sleep on my back. NOW I can sleep on either side. THAT is wonderful! It is what I hold onto while my life goes swaying back and forth.

I have had people tell me I am "too positive". I have people telling me how I don't act "sick enough" to make people understand. I don't know what else to say.

There isn't a day that hasn't gone by since they told me, since my body told me, that I don't revel in the good but also struggle with the sad.

I am having a mixed day. Again. Good (my acupuncturist relieved me of some pain) and horrid (I found out my uncle passed away form his cancer).

Yet I look outside, and adore the golden light cast upon the Evergreens, and yet have this ache inside of me of pain (literal) and worry for my family, and hope that I can be a LONG term chronic case.

My days are DAY BY DAY. One day I have great energy, the next, I am laid up on the couch.
It is a bit over everything. Again, back to the NOW is all I have.

And NOW I am so grateful for dear friends, and golden sunlight, and a kind husband. And NOW I am in pain, my stomach, from chemo. BOTH. My days are spent in flux, in limbo, trying to maintain the good and sweetness in life and not let worry and pain take those things away.

Those are my days right now. Some of you said I needed to be more clear. I can't be more clear than that. I hope it helps.



Kent, Melisa,Tiana (and Coda) said...

Sending you major love and look forward to seeing you, even briefly, tomorrow when we pick up Kara -- provided that is still on! Do you want her picked up by 6:30, or before so you can be where you need to be at 6:30?

Kent, Melisa,Tiana (and Coda) said...

Love the new colors! See you soon, hon! Hope you are feeling better today!