The Straight Poop

Today was the day that I met with the surgeon. We'll call him Dr.W. He is very charismatic and confident. I like him a lot and trust that he is going to do a good job. Here is what he is going to do. He is going to remove 1/2 to 1/3 of my colon - called a Right Hemi Colonectomy. He is also going to get out as much of the cancer as he can. There's a lot in there, so he is going to get what he can (let's pray that he can get it all) without putting my overall health at risk. The idea is if they leave some cancer in there, it will be gotten or controlled by the new chemo drugs.

One thing to know - they are not doing anything to my liver. My liver is still too full of tumors to operate on, so they are banking on the new chemo drugs to clean it up.

It's strange that I thought surgery was the answer, but two things have been revealed, 1. they are pretty sure they are not going to be able to cure this cancer.  2. they are relying on chemo to do the big work. I thought it would be the surgery that would do the big work. But they think the chemo is going to do the big work.

The primary goal of this surgery is to take out the primary site - big tumor blocking my colon and lymph nodes and other junk around it. They will give me a epidural catheter to control the pain. That way the pain can be controlled from whichever vertebra they use and down, and my brain won't have to be bathed in pain meds for the week. Dr. W. says they are brilliant when they work properly. If it doesn't work, it will be some sort of morphine drip for me. They expect I will be in the hospital for 5-7 days - more likely 7. I can only get out after the pain is controlled, I am eating and tooting. He did not mention pooping, but I imagine they are going to want to make sure everything is in order.

That is what I found out. I also asked if this cancer was going to kill me. Dr. W's answer was yes, very likely. That if I was 70, his answer would be different, but because I am so young, unless I get into some sort of accident, it's the cancer that will likely get me. He reminded me of some of his cases where he was wrong, people living a long time, cancers being cured that they were sure wouldn't be. He also reminded me there is so much cancer research going on right now that something new might come along in the next year. They just don't know.

How can I be so calm? I am not sure. I am pretty sure it's because I didn't really find out anything I didn't know and there is no way to know that it is absolutely true that this cancer will get me. I am just going to go on the assumption that all will be well.

By the way, my recovery time is 6 weeks or so, so I expect lots of visiting from you all.

ChemoCoaster

A ride you never want to go on - the ChemoCoaster. Up and down, up and down and around. For some people it makes you barf your brains out, for others it's just whips you around until you don't know who you are anymore.

That is how I have been feeling. I just don't know who I am anymore. I have this crazy life of going to different therapies and doctors all the time. I have to arrange for ride because I can't really drive for that long, I have to nap at least once a day, I have no hair on my legs (and other places that shall remain nameless), and I don't really want to eat. What? I never understood when people used to say they ate for fuel, now I do. It's pretty much a must do these days, not a big pleasure like it used to be. And I don't get to floss my teeth, for those of you who are not flossers, this is a big deal for those of us who flossed religiously. And I seriously want to want to eat a feast, then floss afterwards.

I had a nice thanksgiving-esque meal, turkey broth from Theo and Pat's pumpkin custard. Isn't that what Tday is about anyway, the bird and the pie and I got a bit of both. Round it out with some potato soup and it was good. The best part of the day was Pat and I got to have time to ourselves. A nap and lots of talking. We agreed it would be best if I lived a long full life. That has got to be my main focus. I am planner and I have been planning for death. I have to admit this. I have been making sure our money is in order, that all paperwork is in both our names, or just Pat's, I even have the room for hospice time picked out. And now I feel like I have to start getting rid of my stuff so Pat doesn't have to deal with it. It just doesn't make sense to get rid my clothes, but that's how I feel. It is another thing that makes me not really know myself. As crazy as this sounds, some of the things I've done are just good and smart and others are over the top. Pat says she likes my junk around and that I am not going anywhere and that if she died tomorrow, I would be left with all her junk. And I like her junk around, so there.

Tomorrow I have therapy and Reiki. No shopping for me. It's going to be all on line this year for me. I better get at it - only a few weeks until Christmas and I have a three year old who needs more books and Calico Critters.

So thanks for taking a ride with me tonight, I hope you had an excellent feast and spent time on gratitude. I've been talking a lot today about it, and it really helps.

Hair Church Death

What to write about? I discovered that I no longer have hair on my legs, that's pretty weird. I noticed my arms a few weeks ago, but the legs are a new discovery. It makes me feel cold and pale. Maybe that's because I am pale and cold - we are getting some cold weather here. Today was one of those sunny late fall days that makes you think it's going to be warm out, but it wasn't.

Honestly, I only left the house to get to 8am church this morning. It was a really nice service on Christ the King Sunday. I don't know anything at all about the church calendar, but I am learning. This is the last Sunday before Advent. And I will find out what Advent is next week. I sometimes feel sad that I was raised without any religion at all. We had Christmas with Santa and Easter with the Bunny, but that was about it. I had some friends who went to church every week with their families, but it was such a foreign thing that when I went with them, it was like going to the theater. Now I sort of miss what I imagine is a comforting remembrance of an early experience with God. On the bright side, I get to have my experience now, which has been pretty good so far.

I have to say I didn't think I was going to post about God or church today. I thought I would post about my day - church, playing with Bennett, napping and being interrupted by Bennett and not really minding because she is so sweet. Once Pat found out that B was interrupting me, she put an end to it and I really got my nap. I am proud to day it was unaided by drugs. If you take 12 pills a day, is anything unaided by drugs? Good question.

I have been thinking about death a lot lately. Be warned, that is what I've been thinking about. It makes me want to run screaming down the middle of the road. I can actually understand why people commit themselves to psyche wards or go to spas. To get a break - or so it would seem that a person would get a break from themselves in those places, but I know it's not true. Which is why I am still roaming free and do not have a manicure. Julie says that I might consider truly accepting the idea of dying and then it just is one of many outcomes instead of just the latest obsessing. I thought I had accepted the idea of dying, and I am not afraid of being dead. I just can't wrap my mind around the actual dying part. The last breath part. And where is Bennett while this is happening? And how can it be that we brought this beautiful being into the world and she going to have to be one of those kids who has to carry the story of a mom who died when she was young. Will she feel like I abandoned her? Will she ever know how much I love her and how badly I wanted to have a child? I know Pat and her tribe of Aunties will help her know love and deep understanding, but I want to be with her and I want her to be with me. And how can that not be the way it's going to be?

I have no parting upbeat paragraph, I am sure a better person would. Mostly I feel like curling up and not leaving my bed. Luckily Pat won't let me do that. She is so good and I love her for it.

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.

The Days Get Better

Ask and you shall receive, that is the lesson for me today. I asked my friend Ruth for help to better understand if I was lying (thanks, Mom) in bed because I was chemo-ized or paralyzed from fear. It turns out the answer is both, but she helped me work out a lot of my fear. It's hard and exhausting work to try to get to the kernel of what is going on. Nothing that is much of a surprise. Mostly afraid of the amorphous future and dying.

Fricking, fracking, wily fear. You are not welcome here. GO away.

And mostly it did. Thank God. I truly mean it, thank God. I was so filled with fear I couldn't really move without worrying that I was going to break. Literally break into a million pieces. I guess that what writers mean when they say someone is shattered. I felt like that would happen to me if I moved too quickly. So, again, there was crying and gnashing of teeth, then there was a peaceful walk around the neighborhood and some other realizations. I have been spending too much time by myself. What to do about that is hard to know. I am not up for a job, and mostly everyone has a job. I'll keep you posted. I bet if I don't feel like I am paralyzed by fear, it will be easier to get into the studio. That's being alone, but it's not lonely.

While I finished my walk I realized I would be home alone, so I called Pat to see if she could come home with Bennett. We all arrived home at the same time. A lovelier afternoon than expected, a nice time talking with Pat while Bennett consumed her weight in noodles. Some excellent soup and reading books to B before bed. That feels like getting my life back. What's nice is not feeling the fear pumping through my chest all of the time. I thought that was the chemo. I am very tired, a good physical tired, from the walk and the crying. It's a nice change from being stunned.

Meeting with Dr. B

Today I had my big meeting with Dr. Bathini. I came out of there terrified for my life. I didn't really learn anything new, just that he has a way of presenting information in such a stark way that I feel knocked down. There's nothing new to report, and I know that logically, but logic is lost to me in this situation. I still have the same cancer I did yesterday, I still know that I will never go back to being who I was before I was diagnosed - physically that is. I get that surgery, if any, is a long way away. My liver is a mass of tumors and my lymph nodes are a mess. I get all that. It's just hearing it all again, in the doctor's office while he is trying desperately to help me remember there is so much good news. So many advances in the medication, so many people living much longer than they ever imagined, so many new procedures and drugs.

This all well and good, but what I really wanted to do was shake him by the lapels and yell. Yell anything, things like "am I going to live?" "will I die a very painful death?" "what the hell are you talking about, this can't be my body you are talking about."

Now we are getting somewhere. How could all of this be about me? Me, the one who has always been so strong and healthy? How can it be that on July 25th I was healthy (or thought I was) and July 26th I have stage four colon cancer? How long has this been growing in me and I didn't know it? How come I didn't have any symptoms? I can't tell you how many hours I have wracked my brain to figure out if I missed something, did I have some sign that I ignored? Maybe, I just can't remember.

It's just rotten filthy bad luck and nothing to be done. I've cried, prayed, talked, taken an Atavan, it all helps. But, at the same time none of it helps. It doesn't change anything, it makes me feel better, sure. But the cancer is still there.

I am trying so hard to remember what Julie said to me this afternoon, she really gets into trouble when she is living in the future. The present is not terrifying- it just is what it is. What is my present? Pat is helping Bennett to go to sleep. I am posting and getting ready to lie down for the evening. I should eat some of the soup Kate brought by, but my appetite is nowhere to be found. My present is feeling the physical leftovers of the fear I've been fighting all afternoon. My mouth tastes like dirty socks - that's from the chemo. I have a headache from holding myself together. Zeus needs a bath and it looks like we have a line on a new car.

If I let it, fear will steal my life from me. Honestly, I don't know how long my life will be, why would I give it up to something as useless as fear? As my friend Ruth says, "fear, I scoff at you, Ha Ha!" The thought of saying that right now makes me want to have a break down, so maybe I will leave the scoffing for later, when I am a little less teary and a little more steady on my feet, feelings-wise.

Still Pumping

Imagine my surprise when I looked up at the title and it said "still pimping." I fixed it, but I might use it another day...

Quiet, rainy day filled with a lot of nothing much. Took B to school, tried to walk Zeus but he wasn't interested in a walk in the rain. Watched some TV on the computer while trying to take it easy. I will not go into another diatribe about how hard it is for me not to do much. Cleaned up a little and did the bills. I am ashamed to say I hadn't paid them the slighted attention since the first of the month. Thank goodness for auto bill pay!

The big activity, if you can call it an activity, was my weekly heavenly reflexology appointment with the magical Marianne. I am on the list of folks who can have reflexology every week at the Cancer Connection. Usually folks are only allowed to come every two weeks. I finally got up the nerve to ask why I am on the list. I was afraid it was that they knew more about my prognosis than I, that they knew something terrible was happening, and all that paranoid stuff. Pat handily reminded me that they don't know anything more than what I've told them and they do no have access to my medical records. So, Marianne said I am on the list because I am actively receiving treatment and that I respond so well to reflexology that she would like to see me every week to help work through some of the symptoms as she can. I love her for that. She is so attentive during the session, because I cry a lot, she tells me different ways to breathe so I can be calm and still have my feelings. It's just such a relief to be touched in a non-medical way, in a room that smells really good and there's always soothing music. And at the end, she puts my socks back on my feet. I can't tell you what a humbling experience that is for me.

Pat has been picking up B at school this week because I can't visit that pool of germs. So I had a few lonely minutes alone before my family came home and it was so good to see them. I have been meaning to write a little more about being lonely. I am lonely these days not because I don't have stellar people around, calling me, sending care packages and books. I am lonely because I finally realized that no matter who is around me, I have to do this journey myself. Not by myself, but myself. It hit me in the hospital when the oncology nurse looked me in the eye and said, "and infection for you is a big deal, life and death, so don't mess around." This was when I was complaining about getting rid of the houseplants and not being able to pick up and drop off Bennett.

At that moment it made sense to me how tenuous things are at the moment. Life and death seemed really abstract, but hooked up to three IV antibiotics in an isolated room with warning labels on the door is nothing to mess with. When I took walks around the hospital I had to wear a mask, when I was in the ER, I had to wear and mask the entire time I was there, even while I was asleep. It sort of put things in perspective for me. Okay, Mary and Libby were wearing masks too, troopers that they were (and are), but it was my body fighting the war. It did a good job and I will do everything I can to protect it from another fight like that, because I want every ounce of energy that I can muster for the bigger fight. For my life.

A Rough Good Day

I didn't think I was going to post tonight, but I need it. It's been a rough day and good day. A friend of my had a tragic family event and this has been on my mind a lot. Life is so fragile, so tenuous and yet all we want to do is live. How can the two exist at the same time?

Every spring when I worry whether the plants will come back, I remind myself that all the plants want to more than anything is to live, make seeds and flourish. Isn't that what we all want? Well, maybe not make seeds exactly. My mom, who is excellent in many ways, said she doesn't want to die because she wants to see what happens. I couldn't agree more.

Heavy stuff here, but that's what I got. My belly feels much better after a day of no dairy except yogurt and kiefer. Holy crap, what am I going to eat now? Some of you know this, I have to be super careful about what I eat because I cannot, repeat cannot, block my colon. Where it perforated is very tender and I am working on making it stronger by eating soft foods, drinking tons of water and not picking up anything weighing more than about ten pounds. Sadly, that includes Bennett. I am going to check with my doc tomorrow to see if all of these things still need to be true. My guess is yes, dag-nabbit.

So how was it a good day? I got the day. That's a terrific start. I got to hang out with Bennett, go to the mall, get a new laptop (super yay!) and hang out with Sandy and Avy. My belly feels about 50% better and I bet it will be even better tomorrow. The electrician was here putting the lights in the new bedroom and I am turning 45 on Friday. I got to help B go to sleep with books and stories. It's been a nice day, I am glad and thankful for the day and for the gift of tomorrow.

Ah, tomorrow, Chemo Tuesday. Please send your light my way. I am especially interested in light that will help me not slur my speech, God knows I want to be in partnership with the chemo drugs not allergic to them.  I will be in the chair around 10:30 with Pat by my side, playing Scrabble again? I'll let you know.