A Day of the Not-Dead

I say not-dead because I am not dead, and yet with the pall of death on me it is hard to feel alive. To feel alive in that shiny and bright way that I imagine I used to feel. Mostly now I am tired and all the things I do are tainted with this terrible loathing. I am planning on making another stained glass pieces, will it be one of the last pieces I make? Will I always look at it like that's the piece I made when I had cancer? This is more hopeful because I am still alive to think this.

Even before I was diagnosed, I didn't think of life as bright and shiny. I thought it wasl hard, so many things to do and keep up with and make and not screw up, but at least I didn't cry when I stroked Bennett's face while she slept. Like I did tonight. That balled up fear of losing my chance to raise her. It just about kills me to love her so much. And when I cry now, there is nothing to stop my tears, because I don't have any lower eyelashes. I knew something about my eyes felt different. It's all these things that add up to feeling not-dead, and somehow not alive.

From reading this, you'd think that I had a rotten day. But I didn't. I had a very nice day. Started by going to church and the sermon was about endings bringing new beginnings. It was lovely. I took care of B this morning while Pat braved Trader Joe's on a Sunday to make sure we were stocked up. I have the big chemo on Tuesday and if  I going to be down for a week, it's good to make sure we have enough yogurt and potato flakes. Liz came and took the fish tank (thank goodness, though it is so quiet in the living room now) and Aunt Ruth came to play with B while I took a nice 45 minute nap. So nothing happened that would really bring this on except I made a joke about worrying that the house would be messy after I die and Pat told me she would be really pissed if I die. That lead to a lot of crying and most likely how I feel now.

How can it be at the happiest time in my life, I get a cancer diagnosis? We are just building this beautiful life together and bam, f*ing bam, I have to explain why my hair looks so weird to Bennett. And trying to make being bald sound cool to a three year old is not that easy. I told her it was the big medicine that was helping my body, but making my hair fall out and that she was going to be able to see my whole head soon and wouldn't that be cool.

It's not even that really cool to me. Mostly it's just sad to have half a head of half-dead hair and have your kid use the word "squigelly" to describe it. I've never heard that word, but I could tell by the look on her face it was not a word she would use to describe something good like pudding or baby bunnies.

So there it is, my Sunday, my un-dead day. My alive day? I guess so.

I Hate This Blog

I hate that I have this blog, because it means I have cancer. I just read the Five Stage of Grief and I am so in stage two that I am embarrassed.


Anger – "Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?" Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Any individual that symbolizes life or energy is subject to projected resentment and jealousy.


There it is. My shame. I have nothing else to say except it's not a nice place to be in - to feel so much jealousy and anger. It brings me to sad bitter tears. I feel like such a meany, so unChristian-like, so sad. I know it must be normal if it's written down, but  I still don't like it. And now that I read it again, I am not sure I am  "very difficult to care for." And it's not true that any individual is a target for me. Mostly I feel jealous of freedom of movement - both literal and metaphorical. I feel weak and fatigued so I can't do much. I have a lot of crap going around in my head, so even if I can move I can't get away from myself. My head. My crap-filled head.


I didn't post last night because I just needed a night where I didn't have to end up crying in front of the computer or really digging into how I am feeling. I just needed a night with a stupid movie and Pat and for those two hours I honestly forgot that I am a cancer patient who has a ton of anxiety and fear and fatigue. I was just a person watching a semi-funny movie. Is that too much to ask?


As you all know, this blog has just about saved my sanity, but I might be going through a phase where it's hard for me to bare all. Or maybe not, because this seems pretty much like baring it all.

Crying for Cabbage

Tonight I actually started crying when Pat ate her dinner. I was so jealous. She sat down to eat some sauteed cabbage, carrots and chicken. Not exactly gourmet, but compared to the Ensure and the anti-gas pill I was consuming...and it smelled so good. I realize now that I haven't had a real meal since I was in the hospital five weeks ago. Sure, I've had my soups and my beef broth with an egg, but my soul wants a plate. A plate with whole foods on it that I can bite into and chew. Ah, to chew, what a thought.

There are two problems. One is the blockage by the big tumor in my colon which means not much can pass through. I won't go into too much detail, but you get the picture. The theory is when the tumor shrinks, the area for what used to be food to pass through would get bigger, thereby making eating easier. There is also the real chance that this part of my colon will actually shrink with the tumor, then I will be in exactly the same predicament as I am now. Time will tell.

Problem number two is the gas. And we've talked about this before. An indelicate subject, but one we all know intimately. The place where the tumor is sometimes blocks the gas from getting to where is needs to go - which is out. So I take an anti-gas pill four times a day. They help a ton, but there is still enough air movement to make Pat turn her head and Bennett to ask if there is thunder in there (a direct quote from last night).  And it does hurt sometimes. Not like it used to, but if I am not super careful about what I eat, when I eat, how much etc., I can get into some real trouble, which really scares me.

And it makes me so sad. Sadder than I thought it would. I guess it's a little like my hair. I didn't think it would bother me, but it really does in a deep and troubling way. I knew the cancer would really bother me, but I just assumed the hair and the food and the fatigue would just be sort of incidental. I knew my life would change, but not so thoroughly. I am not sure what I was thinking. I guess there is no way to know until you get here. I can talk to as many people as I want who've made it to the other side, but I can't know what my journey, my response, will be until I am there.  Sometimes it is as big a surprise to me as it is to you.

No Title Today

You might want to get your tissues out for this one. I know I have mine. No, nothing happened, I did not get any bad news. I did spend the day very sad. So I thought I would post about it. It's all well and good to try to present as well and good, but some days are just very hard.

I was weepy all day. Just sad as can be. I thought the thoughts I didn't want to think and they did me in. I thought a lot about loss and how hard it would be for Pat and Bennett if I died. That is enough to get me going again. What would happen to my piles of artwork, what would happen if Pat decided to sell this place where we live? What would happen to Bennett's heart - would it break in an irreparable way? What about my people, all of my people, what happens to them? I become another story of someone they knew who died from cancer. Why are there so many of these f*ing stories?

Fear and anxiety have been my companions today. They were not invited, but they came anyway. They seem to have a key to the house. Bastards.

Then I went to reflexology with the Magic Maryann. She told me to think of life like a Japanese garden - you can only see the next ten steps, and the next steps will only be revealed with each step taken. I get into real trouble when I get ahead of myself. I am not dead. I am not dying. I am certainly not dying in the next ten days (barring some unfortunate accident, which could happen to any of us, blah blah blah). Bennett will be the blazing spirit on this earth that she is no matter what happens.

Pat reminds me that we have to believe that I am going to live. And that reminds me that I have to do things like place the books order for Bennett's class and call the drywall guy to do the Gallery. And, for goodness sakes, find a therapist. I have been trying, but the one I called today lost her husband to cancer and I didn't think she would make a good match for me. I want someone who has a spouse who lived. I want my therapist to think that cancer is something we survive. Period.

I will quote my mother again - I don't want to die, I just want to know what happens. My mother is going to be 82 in March, God bless her, and I want her to find out what happens too. I want us all to know what happens. Enough said.