January 3

That's the date of the surgery. Monday, January 3. I have some tests the week before and I am sure there will be some at home prep before the surgery, but there it is. I have such conflicting feelings about it. I am happy that I am in the right place health-wise to get the surgery, but I know it's going to hurt like a mother f'er. I can do it, I know I can. I am going to do every thing that I can to heal as fast as I can. I have an appointment with someone who is going to help me through something called Prepare for Surgery Heal Faster. From what I understand it is a custom visualization tape and process that will help me heal faster. I like that. I've also asked my acupuncturist if she will come to my house after the surgery and she said yes. Tomorrow I will ask Magical Maryann if she will come too. Knowing that these powerful healers are coming will also help.

I had acupuncture today. I can't really say why, but I love it. I love how subtle it is and how ancient it is. I came home and my intention was to listen to my mediation tape and then do some things around the house. Two hours later, I woke up. I am just going to call this a healing day. Because that is what I did, acupuncture then a nap, next thing I know Bennett is home and we are hanging out. What a lovely soul she is to have around. Don't get me wrong, three and a half is a hard age, so many questions and so much observation that it can be exhausting. But she is so fun.

She has a pretend grandma who lives in Springfield who is sick and has to go to the doctor a lot to get shots in her stomach. She is very sick and sleeps all the time. We talk about this grandma and every time it takes all of my strength to ask her more questions so she can talk about how she is really feeling about me. I know it's not fake-grandma she talking about, I know it's me. I try not to let it break my heart, and know that it's just her process and I have to honor it the best I can. I just wish with my whole heart that she didn't have to go through this. I wish I didn't have to go through this. I have to ask my therapist how to talk to her about being gone for surgery and coming back in whatever shape I come back in. I was going to say I was going to come back in fragile shape, but I am really coming to believe that my mindset has tons to do with how I feel. Okay, the light headedness is not really something I can control, but I think part of the reason I don't feel nausea is because I don't think this chemo makes me nauseous. I stopped taking about half of the medicine because it was making me drowsy and I feel fine. I even ate an Oreo cookie tonight. That is not soup. I hope I haven't done something terribly wrong.

Thank God I feel fine. I am going to try my best to make this break from chemo as good and productive as possible, with a little Christmas cheer mixed in.

Change of Plans

Just a super quick post tonight. Stayed in bed most of the day and only got out of bed to go to Barnes and Noble to watch B perform with her school. We may have been the only parents there without a camera. Luckily Aunt Julie saved the day and took this picture of B with Curious G.

They look a lot alike - curious...

The change of plan is the surgery is not until after Christmas. Still don't know the date, but Dr B called last night to say there was a misunderstanding between him and the surgeon about when my last chemo was. We have to wait a little longer until my WBC recover and the chemo is not so fresh. I sort of feel like I am going to get a nice break- then I remember that surgery part.

The timing change is good in some ways and bad in others. I like to get things done, so was happy to think it might happen in the next week or two. It gives us more time to prepare and arrange for help. We are going to be calling on all of you - 4-6 weeks recovery is a long time. Postponing also gives me more time to worry about what it's going to be like.

I have had a good experience at that hospital, so I am happy about that. I am worried about the pain, getting snowed in, all kinds of things.

I am not going to get into it, it's just the game fear is playing with me. Screw you, fear, get out.

Tonight an early night to bed and hopefully deep deep sleep. That is what I need.

Scanxiety

I had my scan today. It was mostly fine. The hospital was very quiet because of the holiday weekend. I didn't see another patient, and only two or three workers. The first person who helped me had on a sweatshirt that said "prayer, the original wireless connection." I took that as a good sign.

The scan went exactly as I described yesterday - way too much tropical flavored Barium drink. No radio isotopes, I guess, just barium. I drank it over the hour, they popped me in the machine, made me feel like I peed my pants, took the images and when we were done I started to shake uncontrollably- teeth chattering the whole bit. They wrapped me in hot blankets and let me lie down for a few minutes, it was weird. Ruth says it was my body's way of releasing tension and anxiety. I believe that because after the scan, lying in those hot blankets, I could have fallen right to sleep.

I had to wait to get home to do that. I got home around noon, took a full pill of Atavan and crawled into bed. I needed it. I slept for about an hour and half and had a nice afternoon with Pat and Bennett. I think I still feel a little of that Atavan all these hours later - very calm.  It could also be that I am so grateful the scan is done. I don't know.

I do know, however, that this week is going to be hard to get through. Just day by day, that's the only way to get through it. I have chemo on Wednesday - another big one with Neulasta. I am not nervous about that this time. Unless there's some cumulative effect I don't know about. There is always so much that I don't know about.

At the beginning of November, when Pat and I wrote everything down on the calendar, November seemed like it was going to be impossible to get through. And now we are almost through it. Thank God. I have to admit all of the things we thought we were going to be able to do, we couldn't do. But that's okay. We all just did what we needed to do, with tons of help. and we got by relatively unscathed. So far. So let's all keep our fingers crossed that the week goes okay. I am hoping for as much patience as I can muster. So far, so good.

Thanksgiving Eve

So, it's the night before Thanksgiving and all is quiet. Bennett is sleeping, Pat is poking around the kitchen and I am posting. Not much to report, except I have a new meditation recording that both times I listened to it, at the end I was hungry. I haven't been hungry in months. I have been eating what and when I need to, trying in many cases not to taste, but just to get it down. What is this hunger about? I don't know, but I ate and it was good. Don't get me wrong, I ate an Ensure shake that I make with peanut butter and ice cream - about 700 calories. I make one every day, and it is helping me maintain my weight. You'd think, what a treat, but after a few weeks, it's just another thing to get through - like all the pills.

I digress, the new mediation recording was sent home with Pat from our friend Bobbin, who scoured the library for healing books and CDs. I am going to have Pat listen to this one. It's intense because part of it is imagining one year from now, five years, ten years from now in a healthy body doing the things you love. It's the first time in a long time that I've thought even beyond the next year. Beyond chemo, surgery, pain, hospice, death. You all know, because you all are here with me.

I had a pretty good day. I walked the dog with Pat, came home and took a nap at 9am- I crashed for about an hour and half. That was a surprise. Then we picked up Bennett who had a half day at school, played with her, took another nap. This was not a sleeping nap, but listening to the above mentioned recordings. I am so grateful to have had enough energy to play blocks with B when I got up and then hang out with Aunt Ruth.

I am going to try to maintain an attitude of gratitude for the time being. Remind me if I slip back into gallows mode. Sometimes it's hard for me to get out of it without some pushing and pulling. I have it on good authority from my friend Kathy that gratitude can combat the chemical response of anxiety and fear. I will keep you posted.

Neulasta Day

So far, so good. I feel finer than I ever have after chemo. Tired and light-headed, still totally freaked out, I am guessing this is going to be the natural order of things, but good. I had enough energy to take Zeus out for a mid-afternoon walk, do a few chores, then nap for an hour.

Yesterday I treated myself to an Atavan-induced nap. It was lovely, but I don't want it to become a habit. Oh how easily it could become a habit. Blissful dreamless sleep. But today's nap was just as good and I am lucky to be able to have a daily nap.

The Neulasta made my scapulae sore, my spine a little yesterday and the base of my neck mostly all day today. And my left thigh bone has been bothering me, but I am not sure that's a WBC producing spot. Sue, the chemo nurse, said any long bones might hurt. My thigh bones are pretty long. Really all of my bones are pretty long. She mentioned the spine and sternum as prime spots for pain.

Tomorrow church in the morning. I hope the weather is okay. Last week the furnace in the church wasn't working and it was really cold in there. The church is really a gorgeous Gothic style brick building with intensely beautiful stained glass windows. I may become Episcopalian just for those windows alone. If you get a chance, you should check them out, they are that good.

I don't really have much else to report. Pat and Bennett are making cookie dough, I am on the futon posting and worrying. Worrying about what? I don't really know. See above about the (un)natural order of things

I will say a few things about how I have been really feeling lately. I have been in a state of missing things. Picking up b from school, being the person who takes b to swimming lessons, taking her to A-Z to pick out toys. Are we going to be able to have a Christmas tree year? I have been missing my friends and sitting around bs-ing, because I can't think of things to bs about anymore. If you want tot talk to me about cancer, I'm your girl. That I can go on and on about for hours. I want the bs back. How do I do that? I like hearing about what other people are up to, and what their kids are doing, but it is hard to relate a little bit. Four months into this, and God knows how many months to go, I feel like I am not inhabiting the same universe I used to. Anyone know how to get back? Or more realistically, is it possible to get back?

A Good Friday

Just a quick one - a break for those of you who have been reading my super-long posts.

Therapy was good. Liked her a bunch and will be going back. Had a slight panic attack this evening, but am better now. Had a nap, and almost murdered Zeus for barking at the UPS guy and waking me up. Finished the stained glass for above the door in the new bedroom. It looks really cool. Did some laundry.

That was my day. In there also was the same fear and worry that I have every day. Do I have to have it for the rest of my life? Let's hope not. I also have a lot of that feeling that I should be a better person, and braver person and not have so much fear. But I will remember when I can, that courage is feeling the fear and doing the thing anyway. Does it count if you feel the fear, take Atavan, and do the thing anyway? Does that still count as courage? I think it does.

Kitty Appears to be Fine

As suspected, Kitty looked much better today and seems pretty fine. She has a cut on her head that I've bravely cleaned out twice and now the goose-egg is gone. She is a tough nut, so she will be fine. Her infirmity reminds me of how fond of her I am. Honestly, most days I just ignore her, but she is a good kitty and I love her.

Another good day. A day filled with good activity and some worry. I am already starting to worry about chemo on Tuesday. Liz is going to take me, so that's all set and comforting. I think I am worried about how bad I am going to feel after treatment. I don't want to spend a lot of time horizontal again. I know it's part of the gig, but I am feeling so much better. I also know that I am feeling better because they reduced my dose again, so I am better able to tolerate it. I am very curious if they are going to give me the same dose, increase my dose and give me Nuelasta, or what? Some other possibility that I haven't thought of. Those oncologists like to keep me on my feet - or should I say off me feet...

Today I started off the day by accidentally taking too much anti-anxiety medication and I had to take a nap at 10am. Luckily Pat and Bennett were off on an adventure and my job was to stay home and rest anyway. I took it literally.  After that I did the laundry, worked for about an hour in the studio, took B to aunties' house and did a very minimal garden clean up. I worked in the garden with latex gloves and a surgical mask. I am not taking any chances. I just wanted to be able to pull into the drive without be accosted by drooping plants. I will do a full clean up in the spring and hope for the best. I try really hard not to leave anything to moulder in my tiny yard. Perhaps this is the year that my plants will learn to toughen up - be Holyoke plants.

I am exhausted to the bone. All this feeling good and doing stuff is tiring. I don't want to pretend that I am not having a hard time at all. There are moments that are super hard and I broke down while working in the studio. Poor Pat was working hard on getting the awning we built about five years ago up and I fall apart. There is no way of knowing when I am going to burst into tears these days. Pat says they are just part of the process. She is right and it does feel good to release the tears. It's just such a bummer.

Tomorrow I am going to the 8am service at St Paul's in Holyoke. I will let you know how it goes. I don't know anything about Episcopal churches, though my mom sent me links for information. I looked and they seem to be much more open to the world and I like that. I will let you know how it goes.

That's it for tonight. Goodnight everyone. And a special request to those who are shy about posting comments. Please do. I love them and they give me a real boost during the day when I check to see if there are any comments. I lap up every word - so please stop being shy and comment.

Eskimo Kisses

Oh, they are probably not called that anymore, but that's what I got from Bennett right before she fell asleep and they were divine. She is divine. What a doll and if I didn't think it would wake her up, I'd go take a picture of her and post it right now. Instead I post a picture of Pat and me, when I had a little more flesh and a lot more hair.

Today was Monday. Mondays are hard because they seem endless. Pat is gone from 8am until past 10pm. It makes a long day with B and I get tired. Today I stole two naps - one while she was watching Diego and another when Sandy generously offered to take over while we all at the library. The library being my second foray into the world after the hospital. I don't think I posted that Dr B. told me it was okay to go out into the world if I used my common sense - I am still not allowed to pick B up from school or go to places packed with people. That makes sense. I have to say, though, that I am still really  paranoid - it was not fun to be in the hospital for a week with some bug or infection that seemed to scare everyone but me. Oh, I was so naive, I am plenty scared now.

So, I had a luxurious nap while B was playing with Sandy and Avy and I realized that it helps me nap better if I have some sort of white noise going. It must distract the bad voices. I played wave sounds and it was lovely.

I also had a call from the pastor from the church I went to yesterday. He was very nice, but was clear that  their church is not open and affirming. This is code for gay-friendly. He said they follow the bible and that being gay is a sin. What a bummer. He referred me to another church in Holyoke that actually broke off from his church to be more liberal. I thought that was very big of him, after all he was trying to get me to a place where I would feel comfortable and not trying to de-gay me. I will try to the new church this weekend - St Peter's on Jarvis. Anyone know anything about it?

That's about it. I tried really hard to do chores and make life seem as normal as possible. I do have something to ask everyone. It is really hard for me to keep my perspective if no one tells about their lives. I understand some of you out there feel like your life stuff can't compare to cancer, but I really want to know. I want normal in my life, too. Oh, we will talk plenty about cancer and WBC and chemo and whatever, but I want to hear about your kids and the crappy thing that so-and-so did, so I can remember that life is more than trips to the doctor, hand sanitizer and endless bowls soup. If I don't get some fried shrimp soon, I don't know what I am going to do. I'd settle for pickle.