Mary Cometh

Mary comes tomorrow and this is a very good thing. It also means surgery is getting very close. Sunday we venture to Worcester together, but I get ahead of myself. I will be very happy to see Mary tomorrow.

Today I told Bennett that I am going to the hospital. She wanted to know why and I told her I was getting a big owie taken out of my belly. She wanted to know what the owie was called so I told her cancer. You should have seen her face when she asked "what is cancer?" She looked like she had just eaten something rotten. All she wanted to know was I going to get better. And I said yes. It broke my heart, because really who knows? But as Pat says yes is the only answer because that is what we are going for. That's right. She is swinging some mighty swords these days and I love her for it.

I told B that we could talk on the phone and she said that she wanted to be able to talk over the computer- we've been Skyping a bit lately, so a regular phone will not do for this girl. Then she found out she is going to go to her school and start swimming and ballet and she got excited and stopped worrying about me. I have to say it just about broke my heart, but she is in such good hands and has so many people who love her, I really don't have to worry. Mostly it's my heart that I worry about. I am going to miss her.

Happy New Year to you all!

The Countdown Begins

This time, in a week, I will be in my hospital room. What will I be doing? Who knows, I hope that someone will be petting my head and God will be holding my hand. I have to admit, I am pretty scared. I haven't done this before, and I like to know what I am getting into before I do something. This is something that is totally beyond my ken. My sage friend Julie asked me today if I could boldly choose the surgery- that I could choose not the have it if I liked.

What?!?!?!

Then I realized she was right. In August was so pissed that I didn't get to have surgery first that I talked about my disappointment on and on. I am sure it got boring. So here I am a week before surgery and I am going to boldly choose the surgery. It is step two to saving my life. And I want to live. I can boldly choose life saving measures, and I just forgot surgery is precisely that - a life saving measure.

I will take my fear and examine it. I will live with it and know that it's all part of going into something totally unknown. I am afraid of being afraid, of being lonely in the hospital, of missing Pat and Bennett, of missing my house. All things I have said before, but they are still with me so I will keep talking about them.

Bennett and I went for a walk in the snow today. Talk about boldly choosing life. She is about as engaged in life as a being can be. In her new mouse hat that I made for her for Christmas (it was supposed to be a dog hat, but she immediately called it a mouse hat, okay by me), we played in the snow. I felt life so keenly, so perfectly wonderful. I must fight for more days like today. Like a flippin' warrior.

Two Weeks From Today

Okay, from yesterday is my surgery. I have been thinking a lot about it. It's pretty much all that is on my mind, and getting Bennett's doggy had done - one ear to go.

I had a really good day today. I took Bennett to school, and because I am not immune compromised I get to take her upstairs to her classroom. It's great fun to take her all the way up- I have been missing it a lot. We have to take the elevator and Bennett has been asking a lot of question about my health in her three year old way. Why can't we take the stairs up to the classroom? Why do I have a little machine in my chest? Why don't you have any hair? Will the medicine I take make my hair fall out? Oh, the medicine is different. I tell her the machine helps the big medicine get into my body to help me. And the big medicine is healing my body, but making my hair fall out.

I don't want to scare her away from medicine - sometimes she gets a fever and she had to take a little tylenol. It's hard to know how much info to give. Mostly I try to remember to answer the question asked and not to get too elaborate. I am trying to think of creative ways to hang out with her while I am recovering. She will still be going to school, so that's good. I think we are just going to have to have quiet talks and read books and play Ipad together. Like now, only less jiggly. I think it's too soon to talk about the surgery with her, her concept of time is a three year old's. She asks every day if it's Christmas. It doesn't matter that we look at the calendar and show her how many more days must pass before she can get to the presents under the tree.

After B came home from school, we walked to the park to take pictures. She's been asking me to do that for a couple of days. I wasn't really paying great attention while I was taking pictures and they are all of the sun. Oh well. It was fun, but cold and we came home for B's first ever hot chocolate.

I once read that heaven lives on Earth in the in-between spaces. I feel like these times with Pat and Bennett are my heaven on Earth times between the anxiety. Here's to cultivating more heaven on Earth.

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.

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.

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.

Chemo Yesterday

Yep, got chemo and was so exhausted I went to bed at about 6:30 last night - so no post. Not posting is one of the last things I thought of before I fell asleep. This is what I was going to post "Got hit by a truck, got up, got hit by a truck again, stay tuned for news of my miraculous survival." But I just couldn't get up the energy.  That does pretty much feel accurate.

Right now I am pretty okay. Freaked out about everything as usual. I just wish I could get more hours of the day when I am not scared out of my boots, as my mom says. I have moments when my mind is still and then I snap out of it. I have some great relaxation tapes that help, but I need stillness to be a greater part of my life. Any ideas of how to get there? I will take any and all tips.

Tomorrow I give my pump back and get my first Neulasta shot. Then I have my CT scan on the 27th. I won't know anything about it until Dec. 3 at the earliest. That is the date Dr. B. will present my case to the Tumor Board. That's the multidisciplinary team that decides what the next course of action is. I am having chemo on the 1st, so my guess is that the TB will recommend more chemo. The other choice would be surgery, which you all know I want. It's not really an option until my liver clears up a little. There are so many tumors on my liver that it is not operable at the moment - it might be different from this course of chemo, but Dr. B. said that would be unlikely. The thing about Dr. B. is that he has to tell me a lot of bad news, so I think he's more of an asshole than he really is. Since I met with him yesterday, I think he's a pretty big one. One day he will give me good news and I will think he is a saint, until then,,,

Thanks for all the well-wishes yesterday, they were well needed and appreciated. I am pretty tired right now and have to get a very sad and tired Bennett off to bed. I am not sure what the matter is, but as you can imagine she is stressed out too. It's pretty likely she doesn't know what the matter is either. How that breaks my heart.

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.

High Anxiety

What is the 9am anxiety all about? It hits me everyday between 6am and 9am. I just feel panic. Most days now I take a bit of anti-anxiety meds, and as I've said before, they really help. I just want to know why. I know the big why- the whole cancer thing, but this is different. I think. I wake up before everyone else, I worry about when they will wake up, I worry that I will be too anxious to be a good person when they wake up, I get anxious about worrying and the whole thing goes into some bizarre spiral. The last few mornings I've listened to my visualization tape, but that's really about healing and cancer and not about abating anxiety (note to self, get another tape) so it doesn't really help.

Why do I call it a tape? What is it when it's on your iPod but not a podcast?

I digress. What usually happens is Pat goes to work, I hang with Bennett and we end up having a fun and interesting day - just like today. I swear it's the weirdest thing, I get all panic-y, Pat leaves and 10 minutes later Bennett is playing or painting or begging for TV, and I am just being a Mom. Albeit a panic-y mom. At some point the Atavan kicks in and it's better. I still hate that I feel the need to take it, but it seems to make things more manageable.

What did we do today? Not much. B played alone for a long time this morning. I think she needed the alone time- she is with people all the time these days. I talked to my sister Mary, Sandy and Elizabeth. They all had to hear how anxious I was. It was like I had a good piece of gossip, only way less fun. I figured out how to message on Skype and other not that interesting things. We went to the park all afternoon. It was the first time I had spent more than an hour outside in months. I actually stayed at the park for about 2 1/2 hours. Thanks to Sandy for doing all the running after the kids when they went astray. The only time I got up to try to get B to do something, I had to sit back down from the head rush. So it was really sitting at the park only, but it felt so GOOD. So normal to sit with Sandy in the park while B and Avy played. So wonderful to hear the other kids play Harry Potter and try out their British accents. The sun was wonderful.

Sandy kept B at the park another 45 minutes, so I got in some knitting. I have to make more skull caps because there is no way I am going out without a hat at this point. No way. I got some gourmet vanilla in the mail from my sister's mother-in-law- just about the kindest person I've never met. I feel the love from her, honestly.

So this is not a very philosophical post. But today didn't feel like a philosophical day.  This is a good thing. Tomorrow I have the day to myself, which is a real gift. I have my first therapy appointment and I am so happy about it. I will tell you all about it tomorrow night. Until then, I am pooped out and have to zone out until it's not too embarrassing early to go to bed. I feel like I need to sign off by saying I love you all tonight. I can't get through this without each and every one of you. I really mean it. All of it.

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...

What Happened to the Kitty?

Our kitty has a big bump on her head. A real goose-egg. I have no idea what happened and we are all concerned. Even Bennett is being nice to her frienemy, the cat. I am sure after a good night's sleep she will be fine, but it's still a little disconcerting. Bennett has a little cold, Pat has a sore throat, the cat got hurt who knows how, and I still have cancer.

That's the thing that gets me. I can have a really good day, like today, and when I sit to write I think, oh yeah, I have cancer. I still wonder how that can be. It's a little like the cat - what the hell happened? At least with her, I can be pretty sure she is going to be better in the morning and by tomorrow night she will be torturing the mice in the cemetery behind the house. Me, I probably won't be up to catching mice until next summer.

I did have a nice day today. I thought since I had such a great day yesterday, I wouldn't have to take the anti-anxiety meds. Ha! I took them yesterday, why did I think today would be any different? Even Magical Mary Ann, told me to take the meds. I thought she would want me to only use some fancy breathing trick, but no. So, I took the meds again this morning and it does make a huge difference. The little pill lets me have my day. B and I hung out for a long time just watching Dora and cuddling. Then I went to get a new phone (my old one was acting weird and the idea of not having a phone is scary for me), went to the park until it rained so hard we had to leave. Then more cuddling and Dora. Until Auntie Ruth and Theo took B to the farm for the very last pick up. I happen to know they saw BFF Avy there and played a game called "dangerous truck." The amount of sand that came out of Bennett's hair at bath time can attest to the fun they must have had.

I, on the other hand, had a delicious nap and played word games on the iPaddy for about an hour afterwards. It was the perfect break. I nap now with my iPad playing wave sounds. I always have the radio on classical and I listen to podcasts when I get to the studio. My mom was right, it just makes life richer to have sound around all the time. I think the wave sound keeps some part of my mind busy so that I don't have as many of the bad thoughts.

I still have the bad thoughts. They are there and I am pretty sure I will never be rid of them. That's okay, as long as I can try to befriend them - to take the power away. They are part of me, after all. I really hate to admit it, but they are. It seems silly that I would have to go through cancer and actually believe that I could get away with not having scary repetitive thoughts and bad dreams. Another surprise.

The one thing that really surprised me the other day, is that I knew some of the things that were going to happen to me - the hair, the nausea, being bone tired, etc, - I just didn't know they were all going to happen at once. I thought I would get the chance to tackle them one at a time. Not so, my friends. They are all happening at the same time. Who knew? To have a couple of good days seems like such a gift. I will take these gifts and thank God and the universe for them. Remind myself of all the good things I have in between the bad thoughts, fatigue and nightmares. So, thank you God and I'll take another.

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.

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.

Cross Your Fingers

Chemo tomorrow, God willing. I feel good and have been resting like mad, so if I my WBC are not up to the task tomorrow, I don't know what I will do. I have a list of questions for Dr. B. including the whole why can't I get the WBC shots thing? Can I get my labs done locally? That way I don't have to travel and get turned away. That would be great for us logistically.

I was warned at the beginning of this journey that I might need to find a local lab - and they were right. I just never thought that I wouldn't be up to having the chemo every two weeks. My body has always been so strong and trustworthy.  It still is, but I guess if I get hit with what amounts to poison, things go a little haywire. I keep thinking if I thought better positive-thinking thoughts, this wouldn't happen, but that's not true. I think a lot of weird stuff. Sue, the chemo nurse, says there is nothing to do to about the WBC thing. Nothing special to eat or drink. But I believe my ongoing supply of beef broth from Theo is keeping my immune system going stronger. (I will also mention that Sandy made a great sweet potato cheese soup that is pretty amazing - you can practically feel the calories when eating it.)

I have been on an on-line shopping jag. Tonight I ordered 2 - 40lb bags of dog food. Two days ago it was a new mattress pad. I figure if I can't go shopping, I can get everything on line. It seems to be true. Last week I noticed my shoes had holes (I suspect they had been there from some time, but my mind has been elsewhere), so ordered some new shoes. They came in less than 24 hours. I like that things just come to our house. What else I like is that I can do research on the best brand and just order it and it comes. That's what I did for the space heater for the new bedroom.

Okay, so that's what I've been up to. Pat's home now, Bennett is so relieved she actually ate some dinner and fell asleep in about a minute tonight. She does not like when one of us is gone. Come to think of it, I don't like it when one of us is gone. I don't really like it when my friends travel. And I have to say I wish my sisters and their families lived closer - like around the block.

Anyone interested in a 40 gallon fish tank? It has fish already in it, and it's got lots of cool marbles that Pat and I made on the bottom. I am not allowed to touch it and I am afraid these fish will die if someone doesn't come at take them away. It's a pretty low maintenance, but not low enough for us. Let me know and I will give you the scoop on how to take care of it.

Wish me luck tomorrow. I am resigned to whatever happens, but feeling hopeful. A good night's rest and a nice big yummy Ensure will help, I am sure.

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.

No Title Today

You might want to get your tissues out for this one. I know I have mine. No, nothing happened, I did not get any bad news. I did spend the day very sad. So I thought I would post about it. It's all well and good to try to present as well and good, but some days are just very hard.

I was weepy all day. Just sad as can be. I thought the thoughts I didn't want to think and they did me in. I thought a lot about loss and how hard it would be for Pat and Bennett if I died. That is enough to get me going again. What would happen to my piles of artwork, what would happen if Pat decided to sell this place where we live? What would happen to Bennett's heart - would it break in an irreparable way? What about my people, all of my people, what happens to them? I become another story of someone they knew who died from cancer. Why are there so many of these f*ing stories?

Fear and anxiety have been my companions today. They were not invited, but they came anyway. They seem to have a key to the house. Bastards.

Then I went to reflexology with the Magic Maryann. She told me to think of life like a Japanese garden - you can only see the next ten steps, and the next steps will only be revealed with each step taken. I get into real trouble when I get ahead of myself. I am not dead. I am not dying. I am certainly not dying in the next ten days (barring some unfortunate accident, which could happen to any of us, blah blah blah). Bennett will be the blazing spirit on this earth that she is no matter what happens.

Pat reminds me that we have to believe that I am going to live. And that reminds me that I have to do things like place the books order for Bennett's class and call the drywall guy to do the Gallery. And, for goodness sakes, find a therapist. I have been trying, but the one I called today lost her husband to cancer and I didn't think she would make a good match for me. I want someone who has a spouse who lived. I want my therapist to think that cancer is something we survive. Period.

I will quote my mother again - I don't want to die, I just want to know what happens. My mother is going to be 82 in March, God bless her, and I want her to find out what happens too. I want us all to know what happens. Enough said.

Just Another Day

Of rest and relaxation and frustration. I am obsessed with getting this drug that helps WBC counts. All day I have been trying to figure out a way to talk my doc into giving it to me. I've asked twice already that I can remember. Pardon if I am repeating myself, but I can't understand why I can't have it. It's a drug called Neupogen, there's another one called Neulasta. They are expensive and have some side effects. Okay, what in this process isn't expensive (I happen to know my PET scan was $5200), and I am getting to know more about side effects every day. This totally blows.

Don't forget I am coming off being pretty angry about not getting chemo yesterday. I am also despairing of the fact that I have not once been able to have chemo on schedule (supposed to be every other Tuesday).

To be fair, the explanation that I got about not getting the WBC shot, is that they only use it for people who have much more rigorous treatments - let's say every week and it is not possible WBC counts in that time frame. BUT BUT BUT I want to say "I can't recover in two weeks, give me the shot." I will keep you posted on what Dr. B. says, I will call him tomorrow.

Here is the fab quilt that my sister-in-law sent. I forgot to say that Trisha specifically used fabric with bees just for Bennett.

Today was a quiet day - other than the obsessing. I hung out in the new bedroom while the cleaning lady made our house look a lot better. It's hard when everything is so old - the tub has got to be 60 years old, and the linoleum too. So it's clean, but it's worn, and it's ours and I love that it's all clean. I am so happy to have a mom who encourages me to do things like hire a cleaning person. She has an unusual name, so I don't want to use it without her permission, that is why I keep calling her the cleaning lady and not by a name. I did exactly what a person who is neutropenic is supposed to do - sat on my butt and did very little. I watched two TV shows about medicine - Grey's Anatomy and House. You'd think I wouldn't want to, but they were oddly compelling today. I knitted, I painted with Bennett. Here is one of the paintings she did today. Notice the pupils in the eyes - when she was painting them she said "and now the eyeballs." Pure genius.

Another Not Goodbye

This is my great sister, Janna, who came to visit today. This was definitely not a Good Bye visit. This was about as "hello" as you can get. Super fun and interesting, this sister of mine. I can't wait to see her again, for longer. And the very least at the family reunion in July - which feels so far away from now. I can't even imagine what kinds of things will happen between now and then. Don't get me started.

This is me showing my receding hairline and Janna showing off her gray that looks blond to me. We took a drive to see Mt Holyoke College and Smith College. The campuses looked beautiful with some orange and red trees and their glorious brick and stone buildings. 

Tomorrow is chemo. It's on my mind. I am a little worried, even though I have to say the two weeks between this chemo and last have been pretty good. I have had only one or two days that left me feeling less than human. I have had fear and anxiety, but that's not the chemo. The days that I had to spend in bed - that is the chemo. So I hope you will all send good chemo healing prayers and thoughts my way tomorrow. And here is Bennett showing us her ducky slipper.

I've Got Life On My Mind

All day today I've been a little jittery. Just feeling really good physically and able to do much more than even yesterday. It makes me a little nervous. You know, when is it going to end? Am I going to do something to mess it up? Eat the wrong thing? Forget to take my meds? Over do it? All things that are super easy to do when you are just a little jittery but feeling physically finer than usual.

I figured out why I have been so jittery. It will come as no surprise that how long I am going to live is really on my mind. I can usually remind myself that no one has any guarantees, etc., but today (and yesterday) that comfort has been elusive. So it finally struck me while I was reading a Dora book to Bennett, yes, I am going to live. As a matter of fact I am living right now. Does the actual number of years I get in the future really matter. Not really. It's all so abstract - why not be here, now? It was like a bolt of lightening hit me - all that worrying just getting in the way. For what? For nothing, that's what. I will never know the answer, none of us do. We all hope for a good 80 or 90 or 100 years, but none of us knows. While this might scare the crap out of you, it makes me feel so much better.

Just like this blog makes me feel better. It's like a layer of anxiety washes off of me every night when I post. It's freeing to be able to write how I feel and know that people I love will read it and feel it with me. I have to acknowledge that I am asking you all to do something that is hard - to come on this journey with me. It's not been easy, and it will get harder. But then it will get easier again, so hang in there. Thank you all so much for your well wishes and your offers of help. I am overwhelmed with gratitude and will call on you when we need help. For now we are muddling through and plan on hiring someone to come clean a couple of times a month. That will help so much.

I'll keep you posted.