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.

Some Sunday

Today I went to church. I decided that I wanted to go to church this summer and Pat and I tried one. We didn't like it that much, and Bennett kept thinking we were going to the circus. "Where the circus, mama?" What a disappointment! So we didn't go back and took an inadvertent break.

We have a Lutheran Church down the street and I thought I'd give it a shot. I went by myself this time. It was very pleasant. I don't know what the Lutherans are about, but the pastor was super accessible and the service was interesting enough to keep me attentive. I'll go back next week and see what's it's like again. There may have been a touch too much about all of us as sinners for my taste, so I have to find out if that was just the sermon or the flavor of the church.

It was a big deal to go by myself. I wanted to go back to bed so bad, but then I joined Pat and B on the drive to Trader Joe's. I sat in the car and talked to my sister, Mary, while Pat did the shopping and B did the snacking. Mary is going to Africa next week for a seven days. I am going to miss our talks a lot, but good for her for getting away and relaxing. She's going to need to soak in all that warmth for when she comes back here in November or December. I am already looking forward to that visit.

After TJ's, B went to Aunt Liz and Aunt Jewwelie's for an afternoon of fun. Pat and I got to take a nap, I didn't really sleep, but was plagued by the bad voices. Mostly about what actually happens when a person dies "from cancer." I had a very poignant and helpful conversation with my mom who helped me understand that it tends to be a shutting down of the system - or as I put it, organ failure. My mom assured me that my father (who died from cancer) had a peaceful death and that the hospice angels made it that way. It was very very comforting and sad.

We then had a long conversation about the use of anti-anxiety meds. My doc has been telling me to take them as often as every four hours- that is Atavan or Lorazepam. I really try not to, thinking that I am cheating. I now believe that if I need to take something to stop myself for torturing myself (as my mom put it), that it is not cheating. So guess what? After I hung up the phone I took half a does and it made the entire evening more pleasant - and I believe more pleasant for everyone. And I am not torturing myself at all right now and it feels really good.

More good news is we finally found a home for the fish tank. Thanks for the always generous and fearless Aunt Liz. It is be a huge relief not to have to worry about the sheer neglect of those beings anymore. Thank goodness. They will go to their new home this week, phew.

And that's about it. Read books to B, posting, going to watch a little Top Chef season three and go to bed. All in all not a bad day. I think I am over the hump of being chemo-ized. I will know more tomorrow- and so will you.

Just Got Up

Yep, I just got up from bed- it's 6pm. I feel a little humanity returning, for which I am incredibly grateful. I was in bed all day, literally all day. Not watching movies, not reading books, just dozing and lying with my eyes closed. Is it laying or lying? I don't know. I am just happy to be up and feeling like maybe tomorrow will be better.

I will tell you what it's like. I've heard chemo described as God playing with gravity, and some days are just days you can't fight gravity and have to be horizontal. I mostly agree with that, but I more feel like the ray guns on Star Trek are set on stun and they got me. Otherwise I would want to read or watch a movie, it feels just like I've been stunned.

I had a very hard time with guilt today. I felt like an utter failure. That not being able to get out of bed is anathema to who I am, and I felt a deep sense of failure. This doesn't help at all. I also wondered if I might be clinically depressed, which happens to people who get cancer. I don't think so. I bet I will know more tomorrow. Both Mary and Pat reassured me that I am not a failure, that chemo is a hard thing to deal with and sometimes bed is the only answer.

Thank God for Pat being able to take Bennett to work at the last minute. Thank God for Ruth and Theo getting our veggies for us and thanks again to the highest power for Liz and Julie taking Bennett for an adventure in the afternoon. All of these folks pitched in so I could stay in bed and work on my WBC.
So many people called to see if I was okay, it was really a wonder to get so much help.

Last night I didn't post that Dr B agreed to the Neulasta if my WBC count if low at my next chemo. He called yesterday to tell me that he is working with the insurance company to get it okayed. He thinks he has a good case because I've already spent a week in the hospital due to a compromised immune system. Neulasta, I've read online, is between $3k and $7k a shot. I don't know why the range, but holy cow! that's a lot of money. Neulasta doesn't come without its side effects- 10% of users get severe bone pain and/or flu like symptoms. If you look at the glass half-full, that means 90% don't. I am going to cross my fingers and toes that I am in the 90%. So far I have lucked out on a lot of side effects - I've only barfed a few times and I don't have the diarrhea everyone talks about. That might be because I only eat soup and Ensure and the occasional yogurt. Anyway, I hope I will continue to luck out.

I feel like I have to say thanks to everyone for your support. This is going to be a long long long shitty process and I appreciate you all sticking with me. I think about it all the time, how important all this support is. How could I have gotten through this day if so many people didn't step in to help? So, thank you from the bottom of my super fast-beating heart.

Quick Post - 30 Minutes or Less

I don't have a ton of time. I have exactly 30 minutes before I need to wake Pat up so we can have our after-Benett-goes-to-sleep time together. And tonight is especially important because Pat is leaving tomorrow for the weekend. She is going to her mom's memorial service in Western NY. In all the hullaballo surrounding me, Pat hasn't gotten the attention she deserves and it makes me really sad. Betty was a fine lady who lived a good and full life and I am glad I knew her.  I will be bold and ask that you all pray in any way you do for a safe trip for Pat - and Betty too, while we're at it.

I had a particularly nice day today. It was rainy and B and I stayed in. We did a lot of nothing much. Just painted, read books, looked for more free children's eBooks (any ideas? I am coming up with a bunch of junk.). Bennett wanted her nails painted - a request out of the blue. Luckily we had green and red nail polish. Now B's toes are green and three of her fingers are red. The red nail polish actually washed off in the bath. I've never seen such a thing, usually it takes years to wear off. We napped and generally had a great time.

I think my super sad night last night helped me connect with B better today. I thought it might be the opposite - make me want to be less close because of my fear of loss. Yay for me, I didn't push her away. It was a lovely day.

My dear friends Ruth and Theo have colds, so are not allowed to come by this weekend. I will miss them while they take good care of themselves. We are all going to miss their usual visit- especially with Pat gone. Luckily I just set up a Skype account and know how to call Ruth. Let me know if you want me account name and we can Skype together.

I don't have much else to report. I ordered my annual pair of birthday shoes from my mom about a month late. They came less than 24 hours later. How do they do that? Why doesn't Holyoke have a Internet grocery service? My sister who lives in England, in what Google maps makes look like the middle of nowhere, has it. This area seems like just the right neighborhood for grocery delivery and a Trader Joe's in the Holyoke mall, maybe next to Barnes and Noble, while we are thinking wishfully.

I am sick of my own sad cooking. Not being allowed to touch fruits and veg make it hard to come up with tasty food from scratch - actually impossible. Anyone out there want to make some smooth, high calorie soup for me? It just has to be smooth and tasty.

This seems like a post where I want people to do things for me. Pray for Pat, deliver my groceries, bring me new shoes, make me soup. Odd when I usually am so independent. Things have really changed in the past few months. I would have never asked anyone to do anything for me - but now it's really the only way I can thrive/survive. What would I do without Theo's beef broth? What would I do without R&T getting our farm share for us every week - not that I can touch any of it, but still. What would I do without Liz and Julie at the ready to take Bennett? There are so many to be grateful to, I can't list them. Thank you all. Really, that's all I can say. Three minutes to spare.