Short Sunday

It was a quiet day around here. We had a nice visit from our very pregnant friend, Susan. She was glowing and it's nice to know there will be a new baby around soon. She made me a very handsome hat, see above. Boy, do I love babies. All this cancer stuff made me forget that. Pat and Liz wrangled an elliptical trainer into the house and we have a line on a treadmill. Pat insisted on tackling Walmart the Sunday before Christmas to get B a scooter. She is going to love it.

I mostly stayed on the couch. B is still getting over a cold and I wanted her to be a quiet as possible. You know that means lots of Ipad and a few rousing games of Hi Ho Cherri-o.

While on the couch, I mostly fretted and did more crossword puzzles and a little knitting. I am not quite right and I think it's because mortality is a bitch. I know that I can't just give my life over to fear, that if my life is going to be shorter than I'd expected, do I really want to sit around and worry about dying? And all the grief around that? No. But that seems to be what I am doing. I have just got to stop. I get moments of real clarity, of feeling connected to the world and life, but mostly I feel half shut down. And I know that is no way to live.

I have big plans for tomorrow. I am going to Trader Joe's then I will listen to my tapes and have a nap. I have not been grocery shopping for months. We are really trying to get ready for January. I got the sleeping stuff I needed and ordered two big bags of dog food. When will Holyoke get grocery delivery?I can't wait.

Next we are going to arrange the beds so there are plenty of places to sleep and agreed to heat the house at whatever temperature we need it to be - and not worry about the bill. My valiant sister Mary is coming to help for three weeks. I am so blessed to have such resources.

That reminds me, I went to church with Ruth this morning. It was good. St Paul's is such a sweet place, I heard someone say it was the little church that could. I believe that.

I am off for the night, I am going to try to work on the blue doggy hat that B has been asking for. I am pretty sure she is going to ask why it's not pink the moment she sees it. But that's okay, I think she will like the ears enough to live with the blue.

5 More Days

It's like my own Advent calendar - counting down the days. In this case it is not the baby Jesus I am waiting for but the results from the scan and what the next course of action is. In case you couldn't tell, I went to church this morning. The first Sunday of Advent, which I have learned is waiting for Christmas and the above mentioned birth. The sermon was all about waiting and how hard it is. It was so apropos that I started crying. I don't think Pastor Barbara knows what to do with me. I sit in the front, I nod my head a lot and never know when to stand or sit. No one is sitting in front of me, so I have to turn around to know what to do. It's okay, I think. It's just good to be there.

So, I went to church, came home and hung around with P&B. I cut both Pat and Bennett's hair and Pat gave me a sad little trim around the ears. Bennett does not like it when I am not wearing a hat. Tonight I took it off to read stories and she told me to put my hat on to cover my figgelly hair. It's so interesting because she doesn't care that I nap every afternoon, that she often comes home from school to find me napping or resting. She does care that I can't pick her up, but now she's used to it. The hair, she does not like. I am happy to wear hats for her. I am much more self-conscious than I thought I would be. I am not going to go on and on, because I already have gone on and on about my hair, as you know.

Pat took B to aunties and I took a long and very sweet nap. I don't know what made this nap so good, maybe because I slept deeply and most of my naps are really just me with my eyes closed listening to soothing pan pipes and waves. That's pretty good too.

That was my day, a little dinner and bed times stories for B and now I am posting. And waiting. And waiting some more. Any ideas to make the waiting easier? Distractions you know about that don't involve leaving the house? I never understood why I didn't see more bald people with cancer out and about, now I know. We are all at home, bone tired and scared to our core of germs. So we stay home and wait...

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.

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 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.

Chemo Day Two

The pump is pumping and while it's pumping, I am getting more and more tired. Pat and Bennett both have mild colds, so we are all a little out of sorts. Bennett, right now, is refusing to get into the tub, I am posting and poor Pat is running interference between the tub and our stubborn daughter.

Today I took B to school, went to reflexology and had an hour-long meeting with the pastor of St Paul's church. I took a short nap, went with P&B to pick up our new to us car and now I am about to fall over. Tomorrow I have to go to Worcester to return the pump. The only other thing I have to do is take B to school. My ride is not available until after noon, so I should have enough time to have a nap and get my ears in order. BTW it took until noon today for my ears to fix themselves. Usually it's about 10, but today was especially challenging. I really think it's a side effect from the chemo - even though Dr. B says he's never seen this as a side effect.

Reflexology was a dream. I wish I could go every day. I had an appointment with a therapist last night that I had to cancel. I am really sorry, because it is someone I want to work with. I will call tomorrow and make sure that we can reschedule. I had an appointment with an oncology social worker at UMASS. It was okay. There is only one OSW for the entire program so she doesn't take on hourly clients, but is available to talk anytime I am there for chemo. She did most of the talking and didn't really seem that interested in eliciting anything from me. I guess that experience will help me know more about what I am looking for in a therapist.

My time with Pastor Barbara was really great. She is very open and affirming (code for gay-friendly), had a lot of nice things to say about Holyoke and our community. She was great at answering my questions and made me want to continue to have a relationship with St Paul's. She is going to arrange for a healing prayer thing that will happen during the service - more than just reading the names of those who would like a prayer. I really appreciated that, and of course burst into tears. I am going to the 10am service on Sunday to witness a baptism, which I have never seen. I am sort of looking forward to it. This is one of those things that is a big surprise to me.

So, tomorrow more will be revealed. Right now I am about to fall asleep right here from tiredness. I wish I had more energy, really, it would be helpful.

What Happened Today

Isn't that what every blog post should be called? Really, because this is what happened today.

We all slept in until 7:30 and I had to be to church at 8. I washed what is left of my hair and prayed that my ears wouldn't blow (they did) and that I wouldn't be late. Deanna hooked me up with two long-time St Paul goers. Kathy and Tim were the perfect hosts and introduced me to Pastor Barbara who was super nice. The service was lovely and quiet. I will try the 10am service next week, which is supposed to be quite lively. I have an appointment with Pastor B on Wednesday to talk about what it means to be part of a church, etc. I'll keep you posted. I really liked my experience at St Paul's and can understand why a person would want to be a part of it.

I got home and we were all so tired that we went back to bed. There was no actual sleeping because Bennett wasn't quite as tired as we were, but it was nice to cuddle and chat. Pat took Bennett to a dress up birthday party - Bennett was Fairy Dora. She couldn't decide between being a princess and Dora, and why should she have to? So she looked wicked cute in her blue and purple tutu, Dora shirt and purple backpack. She wore that all day- until it was time to trick-or-treat - then is was about 45 degrees. It's hard to see a costume under a winter coat and hat. We had to tell B is was not polite to walk down the street yelling "it's time to get candy" at the top of her lungs. She quickly got the hang of "trick or treat" and "thank you." She got a ton of candy from just six or seven houses, plenty to last a good long while.

I got in a nice nap and did a few things around the house. Made sure the kitty is still on the mend, and that's about it. I have to say that I am not that too happy about tomorrow, Monday. Though I am feeling good, I am worried about having B all day by myself. I am going to keep it a nice quiet day, which she needs more than anything. That means I will have to figure out how to occupy my mind while B gets a quiet day. Any ideas? I am going to look into getting an oncology social worker instead of a therapist. I am going to call UMASS to find out if they offer anything like that. I bet they do. I bet I could see that person the day I have chemo. Wouldn't that be perfect?

My thought is an oncology social worker, or someone like that would be better for me than a nice lady in a home office in Northampton. I've done that, and I need something a little grittier. I do have an appointment with just such a Noho lady not this week, but next. The first therapist who had opening and time and takes my insurance. We shall see. I don't have much hope because I really want someone who is in the world of cancer treatment.  This is good to know and I will start my new quest tomorrow. I suppose one could say I didn't find a therapist for a reason...

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.

Tuesday

Today was an odd day. I woke up from nightmares with a beating heart and super anxiety. It was late and I had to wake B up for school. Luckily, I got her to school on time, walked Zeus and tried to quell my anxiety through blown ears. It worked a little. Then I remembered what my mother said - to take my meds and stop torturing myself. So, day two of taking a tiny dose of anti-anxiety medication during the day. It helped and I ended up getting quite a bit done today.

This is what I did. I waited a full two hours from my ears to some back. I have to sit to get them back so I watched a sort of calming cooking show on Hulu called Avec Eric. I am sure there is something about me and all the food TV I watch while I can't really eat anything. I got the house ready for the cleaning lady. I organized most of B's clothes, worked in the studio for an hour while listening to a Podcast. (Another tip from my mom, never be in a quiet house if you are anxious.). Took a nap for 45 minutes then it was time for B&P to come home. It was a nice day, with an email and call about local churches that are gay-friendly. I am going to try St Paul's this weekend, and maybe the UCC down by the War Memorial in Holyoke next.

Pat and Bennett came home after stopping at the park and carved the pumpkin our friend Sally brought to us. Here it is.

I have to say, I am pretty tired from all the anxiety and the not being anxious in an odd way. It is odd to know what's happening is still happening and not have the physical symptoms of anxiety. I have had weeks like this on my own, but something very deep is triggered in me these days. I guess I just need a little help. Oh, and I also called two more therapists today. We'll see if I ever get one. These two are recommendations twice removed from the original recommendation from my former, very loved therapist. I'm trying to find someone who takes my insurance. There are names that I have that sound incredible, sort of local cancer therapist celebrities who do not take my insurance. I don't have any idea - but I bet they are in order of $150/hour. I just can't swing that. Really, who can? I suppose I should just call and ask, I'll let you know.

Tonight will be a quiet one. I need to just be spent on the couch with Pat and Top Chef.

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.

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.