Getting Ready

Today was a day that I used to get ready. I ordered a bunch of things on line so I can have them before the surgery - nightshirts, sleeping hats, dog foods. You can get everything on line, I swear. I filled out a bunch of paperwork that has been waiting, waiting for what? Who knows. The right moment when I didn't feel a paralyzing sense that I didn't need to do the paperwork because I was going to be dead anyway. Super depressing, but true. Some days I just feel the future and some days I don't. Today I did- and even told my therapist that this cancer is not going to kill me and truly felt it. It was very freeing.

I also went through every single Amazon.com box that has arrived in the past several weeks. I thought they were all Christmas presents. As it turns out, some of them were just gifts. Like a nice heating pad from my sister and niece, Libby. She is not both my sister and my niece, you understand.  Also some great books and this wild hat from Tanta Di.

Who needs real hair? The tag says not for children under the age of 14. I've never seen a tag like that before.

So, after going through the boxes, I ended up only having four things to wrap and put under the tree. I did cheat and keep out the incredible shearling slippers my sister, Joanne, sent. They are not waiting two more weeks to keep my feet toasty, no way. With only four things under the tree, I felt the need to go shopping. And, as you know, I haven't been shopping (except on line) in months. After 50 minutes of crying in therapy, I went to A2Z and got B some great things, and somewhere else to get some things for Pat's stocking. I cannot reveal too much as she will be reading this at some point.

You might be wondering about the 50 minutes of crying. I was deeply sad today. Which is a little weird to post right under that photo of me laughing, but there you have it. Deeply sad was this afternoon, I feel a lot better now. My therapist pointed out that this is a sad situation and that crying is totally appropriate. That's good because I cry pretty much every single day. It's good for me, like my nap, like my visualization tapes, like this blog. It all helps me feel like my life is okay- I have to qualify that with "most days." Because some days no matter how much I cry or post or nap, I feel like I got the shit end of the stick. But not today, today I got the end with the good stuff- far enough away from the shit that I can almost forget that it's there. Thank God. Really.

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?

I have a Cold

Want a chemo doc to call you back in about a minute? Call and tell them you have a cold. I am now on Cipro antibiotics. The idea is the virus can set up an environment for a bacterial infection and since I have so few WBC, it can get scary. Why does every normal thing have to be so fraught?

Dr B's first question was, is your daughter sick? Well, of course, we all are. What was I supposed to do when I saw first Pat then B getting sick? Move? Leave the house? Where would I go and how terrible that would be. So Pat slept on the couch and we thought that would be enough - like last time. Oh, actually last time I slept in the back room. Must remember that for next time - because that time P&B got sick but I didn't. 

I am feeling a lot better today, mentally that is. I felt a sort of lifting this morning, I don't know what it was, but I will take it. I took B to school, walked Zeus and went and got gas. Came home paid the bills and make some calls, including to Dr. B. After picking up the meds, I went to bed. It seemed like the safest place to go. I don't want a bacterial infection in my lungs and my colds always go to my lungs. I watched a little TV on the computers, tried to nap but kept waking myself up with a cough, or more mortifying, a snort. 

I also gave up the idea that the CT scan will ever be scheduled. Three weeks ago I thought the scan was all set for Nov 29 with a follow up appointment on the 30th- to get all the good news and I am sure there is going to be some. The scan department does not yet have any record of my scan appointment, so I am going to give this one up to God and let the appointment be scheduled for when it will be. Then we can reschedule the follow up (and all the rides and childcare we've arranged, damn.).  Of course I want to have the scan and find out how effective all this chemo (and rest and prayers and sending of of the good light my way) has been. I also fear the words "it's not working." I have to say, and this is not Denial, I have some indication that the main tumor is smaller. If you must know what those indicators are I will just tell you it has to do with pooping, so I will not get into details. Folks with kids and dogs know how much the world revolves around poop and what it reveals. Not everyone wants to talk about it. Thus, I will stop.

Tomorrow the CL is coming. That is the cleaning lady. The gas company is coming to fix our heating stove, and I have reflexology in the morning. I will have to catch a nap in there and that will make a full day. According to Jim's comment, I am allowed to ask you all to tell me how much you love me. So I am going to be doing that periodically. Like now. I think that will help me feel more connected to you all. I have been feeling pretty isolated and want to feel more connected. So have at it. I love you too.

Over the Hump?

Let's hope so. I feel good tonight - not just physically. I am wary about it, but feel hopeful in a way that I haven't felt in weeks. I am not sure what the turning point was, but why question it? I am exhausted, so I don't have much of a post in me tonight, but I will say that I got a lot done and the idea of tomorrow doesn't make me anxious and give me the sweats.

This is what I did today. I took B to school, walked Z and came home and waited the usual two hours for my ears to come back. During that two hours, I watched TV on the computer and knitted - so that's what I did. I went to pay for the car - ouch. I picked up a rug, some meds, went to the bank, and went to reflexology. All of these things I did in a rather depressed way - not really feeling anything but blank. Was it the anti-anxiety medication dulling me? I don't know, I just know that it was a beautiful day and I didn't really care that much. I even went to reflexology without much hope, but something magical happened on that table. I relaxed in a way that I haven't for a long time and when I left I decided to take myself to the bookstore and get a book. I did. On the way home I saw that B&P were in the park so I stopped to play. Bennett was over the moon- I haven't been to the park in months. I've been paranoid about the germs and too tired anyway. It was lovely and tiring so I went home and made dinner for P&B. What? I did, I made a simple dinner. On my way home, I thought I would fall right into bed, but I got home and wasn't that kind of tired.

Could it be that I am feeling better? I am going to take this one day at a time. I don't know what kind of nightmare will send me back into the land of fear. I mean literal nightmare - I've been having them and they are like nothing I've ever experience. Oh, like so many other things.

Keep you fingers crossed and give thanks to God for this change. I am going to.

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.

Just a Quick One

Had a less hard day today, not great, but okay. Spent a lot of time under the duvet on the futon worrying and being anxious. There was crying and gnashing of teeth, but I think I am 75% better.  Pat stayed home from work to work on the house and to work on me. It helped to hear her banging around and to come comfort me every once and awhile.

There still is nothing new, the best way I can put yesterday's freak out is that is felt like I was getting the diagnosis all over again. And it will happen again and again during this process. I just have to know that and assimilate it so that it doesn't knock me out every time. I am not sure how I will do this, but I am going to try with all my might.

I don't have much else to say. I had reflexology today. It was wonderful, as always. I did not want to leave the table. I felt like if I just stayed there, I would be okay for the rest of my life. Alas, I had to get up and go out into the world. Luckily there was a big rainbow in the sky when I got outside. That reminded me that I am not alone - the you all are with me. That God is with me. That we are all in this as together as we can be - while I actually get the treatments.