3 More Days + Chemo Tomorrow

How can it be that I have to wait for test results and have chemo at the same time? It seems like the meanest combination of things. My friend Kathy sent this article about how hard it is to wait for test results and it is true. I am not sure that I agree that it is better to know a hard diagnosis than to wait, but I know both are super hard. That's putting it mildly, really it all totally bites.

I had an incredibly anxious morning and it was especially difficult because I could almost call yesterday a serene day. The contrast made today's anxiety even harder. I had acupuncture which was again sort of mysterious. I asked a lot of questions this time. I thought she would put the needles in exactly the same places as last time, but no. This time the she did a organ detox which involved a bunch of needles up and down either side of my spine, one in my foot, and one on the side of my neck. It was really interesting and relaxing. Those needles stayed in for 15 minutes and then she did some acupuncture where she just put the needles in and out - in my knees, shins and the tops of my feet. I don't know if all of this detail is interesting, but since acupuncture is so new and mysterious to me, I want to tell about it. It's not like reflexology or Reiki which are so immediate and hands on. This is almost more of a leap of faith for me. I would have thought it would be the opposite - another mystery, another leap of faith.

I have chemo tomorrow. I am really praying for good WBC counts so that we can keep going. I have felt pretty good to very good for the past two weeks. Of course lots of naps help and Pat has been really concentrating on making sure I eat and have lots of tea. It really makes a difference because I forget to eat and when she hands me a bowl of warm pumpkin custard with cream on it, I just eat it and it even tastes good. I hardly ever think of opening the refrigerator, it just doesn't cross my mind. Jaw dropping, I know.

Pat and Bennett are making cookie dough right now. I can count on hot almond cookies later. I'll give you an update on my weight tomorrow. I have been trying really hard to maintain and even gain weight. Last time I was at the doc, I had gained four pounds. I would like to have that be true again. I am not feeling quite as gaunt as I was. That is a good thing.

Okay everyone one, it's that time again. Light and prayers for a good chemo please. Thank you from the bottom of my heart, I couldn't have made this far without your prayers, help and light. You all are my light.

4 Days to Go

And when I think about it, it totally freaks me out. It's not on my mind all the time, but when it is I have two modes. 1) The cancer didn't respond, has grown five times its size in the past four months, there is no hope, go home. 2) Super results, let's keep going and head towards surgery. I am sure it's really something in between. Some results, need more chemo, let's tweak the drugs, etc.

This is the first time I've done this so I feel pretty scared. I know that is not a new thing to post, but this feels different. Mostly my fear has been of the great unknown, this is about a specific test and what we are going to do based on it. I know this test is not going to tell me how long I am going to live, because this test did not involve a crystal ball, but it will definitely let us know if we are on the right track. It doesn't help that the type of cancer I have is KRAS Mutant type - which means it's a bit more drug resistant. I just went to find a link for you and now am having a mild panic attack, no joke. You'll just have to do the research on your own and not tell me about it. I've already told you what I know- that it is drug resistant, and they are looking for ways to get around that.

So, now I have to get myself out of the panic I haven't felt all day. I will talk about my day instead. Started with a nice morning of playing on the Ipad with B, went to the park for a couple of hours with a nice visit from Aunt Ruth, came home and hung out with B until Pat got home for a few hours. Read Christmas stories to Bennett for bedtime and she said "I want Santa to come to this home." She was totally psyched when I told her that he would be coming in a few weeks.

Let's hope that my visualizing Dr B as a saint will help the Universe know that I need some hopeful news. I really really really really need some hopeful news. I can't believe that I looked at the Internet, by doing that I really screwed up the peaceful way I was feeling. That I why I can't go on the Internet. I think I have to go have a good cry now.

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...

Scanxiety

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

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

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

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

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

Scan Tomorrow

Yikes! I am nervous. I am trying not to be, because I know exactly what happens when you get a CT scan. I will describe it for those of you who have not had the pleasure. First you can't eat or drink anything four hours before the procedure - since my scan is at 8:45 that pretty much means nothing after I fall asleep tonight. You get there, they put you in a Johnny gown and then the worst part - you have to drink about four or five cups of this nasty nasty liquid that is flavored in a way that is supposed to cover the taste (so far I have had coconut twice and eggnog once - how about a nice chocolate? Eggnog? Really.) of the radio isotopes or whatever they are putting in me to make my insides light up. Then I have to wait an hour for the liquid to travel throughout my digestive system. Then just before the scan. two more indignities - another cup of nasty goop and a shot of something through an IV that literally makes you feel like you've wet your pants right there. It is the most uncanny feeling. Then they strap your arms over your head, and put you in a giant donut shaped machine that tells you when to breathe and not breathe and makes a lot of banging noise. The room is freezing and dark and loud, and for some reason the light is always blue. I wish I could remember how long the scan takes, I remember the PET scan was 26 minutes because I asked while I was stuck in a claustrophobic beige tube. I only opened my eyes once and then started praying like mad. It was really scary.

This is nothing, absolutely nothing, compared to a liver biopsy which is about the worst procedure I've ever experienced in my life. I am not even going to continue writing about it, just know it was horrible and I wouldn't wish it on my worst enemy (if I had one).

As procedures go - liver biopsy worst, PET scan second worst, CT scan not that bad. Honestly, it's the week long wait for what the tumor board has to say that is going to be the hardest. I am just trying to give it to God and hope for the best. What is the best? Totally spontaneous remission. Okay, if I can't have that, I will take significant tumor shrinkage. So, put on your best light gathering equipment and send that light my way. Pray, gather and send light, light a candle, whatever, just think tiny disappearing tumors.  Thanks,

I will get the results on Friday, Dec 3 at 1. I will, of course, be posting about it that night - good or bad. You all deserve to know asap since we are all in this together.

ChemoCoaster

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

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

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

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

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

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.

Warrior Napping

That's what I've got to think of my days as - warrior napping to support my healing and fighting. I went to my first acupuncture appointment today. It was really different than I thought it would be. I thought there would be a lot more needles and that they would be in my abdomen and feet. Nope. Nancy, the acupuncturist, put about six needles in my left ear, one on the top of my head, one in my abdomen and a bunch on my shins. I really felt the one on the top of my head - it was like a full body shiver. That was my feeling the chi. That was it, then I spent about 20 minutes on the table with the needles in, almost fell asleep, and was told to go home and take a nap if I could. She didn't have to tell me twice, as I am becoming an expert in napping. I went home, ate some potato soup and yogurt, hopped into bed and woke up when Pat got home an hour and half later. The idea of the nap was so my chi continues to flow down towards my shins. I am not 100% sure about this last part, but that's what I walked away with. I will be going back next week.

So I have become a person who goes from acupuncture to reflexology to therapy all in the same week. This week, though, Magic Maryann is away so I will be going to Reiki for the first time. I am excited to try this, but know I will be back to reflexology as soon as I can next week. I know all of these complimentary therapies help in ways I can't know. I just know they feel great and I am lucky to have the time and resources to have them.

After I woke up, listened to my new favorite relaxation recording, I met Pat and Bennett at the park. It was a fun 15 minutes before it started to get dark. Bennett and I walked home together and she told me about her day. The word she learned today was "mega." Mom-o let's go mega fast, mega high, you get the picture.

Pat came home from Snow Farm with Zeus who had rolled in manure. He had to have a bath and is still stinky. Why are dogs so disgusting sometimes? And today Laureen came to clean the house, so to have this stinky but clean beast running around in our newly cleaned house seemed wrong in so many ways.

Tomorrow is the day before Thanksgiving. Pat and I have decided not to celebrate. Bennett will be going to Aunt Liz and Aunt Julie's house for a big feast. That's the part that keeps us from wanting to participate, well I should only speak for myself. A big feast with no way to eat any of it seems like torture to me. And right now I am feel so desperate for a feast that I know I would leave the party having eaten too much and not the right things and then I would be in pain. So no party for me this year. I keep reminding myself that this is my year of missing, and if I can get through this year, I will have the joy of doing all the things I didn't get to do this year again. I can hold on for that. Hold on with me, will you?

Not Much to Say Day

It's been a relatively uneventful day. I still look into the pit of fear once and awhile, but not as much as yesterday. I feel pretty good, I still have some bone pain in my back and upper neck, but not too bad. I was so sure that this week was going to be me in bed feeling awful, but it hasn't been too bad. I did spend quite a bit of time in bed today, just because I could. It was really really good for me to just remember that I was working on healing from chemo and fighting cancer- and that could be what I spend my day doing.

That and playing with Bennett. I took care of her for about four hours this morning and we played a lot of good games. And it is really hard to resist when she says "come on Mom-o dance with me." So we did some dancing, and I loved it. And lovely Sally brought over some grapefruit juice. She is the one who told me about how great grapefruit juice is - it cuts through the dirty sock taste in my mouth and is just right at night.

Pat is working, I am posting, Bennett is sleeping and now I am going to zone out a little. Thanks for your comments, I really count on them to keep my spirits up - so keep them coming.

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?

Morning Post

Just a moment ago there was a flurry of activity and then I was alone. Pat and Bennett off to Snow Farm and I am here not sure what to do. My ears are blown, so I know I need to hang out until they are better. I could finish my book, nap, take Z for a walk. It all sounds so reasonable and do able and exhausting. Most likely I will take Z for a walk to prove that I can do it, then take a nap.

Yesterday was a decent day. I started out in a funk, but Pat got me up, into the shower and out for a walk. It helps so much to have someone with me to help me know what to do. It's hard to know how much to give in to the fatigue.

Ah, the same struggle I've been posting about for weeks. I won't bore you, but will try to have as full a day as I can and post about it tonight.

A Post with No Name

Too tired to come up with anything clever, let alone descriptive. Since I have no idea what I am going to write about, this post will have to live with the name of no name.

I returned the pump today and got my shot. The WBC shot in my arm. Sue says I can expect to feel pretty rotten tomorrow but not to take to the bed. Ha! That is just what I plan to do if I feel bad. I may do some laundry and other house chores, but I am not going to do anything to exhaust myself. Can you exhaust yourself if you start out exhausted? Some of the more unusual side effects of the shot are pretty horrifying- blue lips and nails for one. I can't help but imagine a deep shade of turquoise. The one called "severe bone pain" is another one I would like to avoid. Sue says the most common bone pain is in the spine and sternum. I'll let you know if that happens to me.

Okay, mind shift. I cannot assume that I am going to feel rotten or be exhausted. I must believe that the day will bring what it will and that I will do what I can. Pat is going to work and Bennett is going with her for a time then on to a fun-filled day with Aunt Julie. That is the family plan for tomorrow. I will give you a full report tomorrow night.

Pray for an easy night for all of us. Miss B who is still in an angry phase, Pat who has been fighting a cold for almost two weeks, and for me just because.

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.

Chemo Tomorrow

Get out your prayer beads, your light gathering tools, your whatever you need to remember to send me prayers and light tomorrow for the big chemo tomorrow. That's all I need, for you to take a few minutes tomorrow to send energy my way. I will feel it - it will hold me steady and help me so much.

As you may have guessed, I am a little worried about this chemo. Maybe not about tomorrow so much as what will happen over the course of the week after. The last time I had this big a dose was my very first dose. Remember the extremely rare side effect of slurred speech? I am nervous about that again. They will pump me full of steroids and anti-nausea, anti-everything before hand, but those things wear off probably by Wednesday night.

Okay, I get that I am worrying too much. It will be what it will be and that's all it can be. But it will be so much more with your thoughts and prayers. So pray-away and I thank you for it.

A Day of the Not-Dead

I say not-dead because I am not dead, and yet with the pall of death on me it is hard to feel alive. To feel alive in that shiny and bright way that I imagine I used to feel. Mostly now I am tired and all the things I do are tainted with this terrible loathing. I am planning on making another stained glass pieces, will it be one of the last pieces I make? Will I always look at it like that's the piece I made when I had cancer? This is more hopeful because I am still alive to think this.

Even before I was diagnosed, I didn't think of life as bright and shiny. I thought it wasl hard, so many things to do and keep up with and make and not screw up, but at least I didn't cry when I stroked Bennett's face while she slept. Like I did tonight. That balled up fear of losing my chance to raise her. It just about kills me to love her so much. And when I cry now, there is nothing to stop my tears, because I don't have any lower eyelashes. I knew something about my eyes felt different. It's all these things that add up to feeling not-dead, and somehow not alive.

From reading this, you'd think that I had a rotten day. But I didn't. I had a very nice day. Started by going to church and the sermon was about endings bringing new beginnings. It was lovely. I took care of B this morning while Pat braved Trader Joe's on a Sunday to make sure we were stocked up. I have the big chemo on Tuesday and if  I going to be down for a week, it's good to make sure we have enough yogurt and potato flakes. Liz came and took the fish tank (thank goodness, though it is so quiet in the living room now) and Aunt Ruth came to play with B while I took a nice 45 minute nap. So nothing happened that would really bring this on except I made a joke about worrying that the house would be messy after I die and Pat told me she would be really pissed if I die. That lead to a lot of crying and most likely how I feel now.

How can it be at the happiest time in my life, I get a cancer diagnosis? We are just building this beautiful life together and bam, f*ing bam, I have to explain why my hair looks so weird to Bennett. And trying to make being bald sound cool to a three year old is not that easy. I told her it was the big medicine that was helping my body, but making my hair fall out and that she was going to be able to see my whole head soon and wouldn't that be cool.

It's not even that really cool to me. Mostly it's just sad to have half a head of half-dead hair and have your kid use the word "squigelly" to describe it. I've never heard that word, but I could tell by the look on her face it was not a word she would use to describe something good like pudding or baby bunnies.

So there it is, my Sunday, my un-dead day. My alive day? I guess so.

I'm Good

But not going to post much. Had a very nice day. Experimented with new foods. We shall see how that goes. If you know what I mean. I had some vegan lasagna, some almond flour cookies and tuna. Not all together, but throughout the day. These are big extravagances for me. I am hoping I can add even more new foods into my life. Pad Thai anyone?

All is well. I am sorry that chemo on Tuesday is going to ruin this goodness. But since I understand the big picture - I am trying not to mind.

Pat installed the stained glass for our outdoor awning and it looks awesome. She took pictures, but we can't seem to figure out how to get them off the camera and into the new computer. Perhaps tomorrow night.

Until then, good night.

A Good Friday

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

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

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

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.

That's a lot of Love

Thanks for all the great comments. I do feel the love. I actually do. I have been so sad and panic-y and stressed out that I forgot about the love. And some things happened today that helped me remember that life stuck in sad/panic/stress mode is no life at all. So I am slowly trying to trust that it's safe to come out and that it does not pay to walk around waiting for bad news.

These are some of the things that happened today that reminded me of the good. Aric (Bennett's teacher) met us at the door of the school with a big smile and Bennett went right with him. Aric or Margo meet us at the door in the mornings because I cannot go up to the germy classroom. An amazing arrangement master minded by my sister Mary.  I came home and the cleaning lady, Laureen, told me she is donating her services from now on. That made us both cry big tears. How generous and moving, and how will I ever repay her? I went to reflexology and the Magic Maryann told me my solar plexus is depleted. That's where a whole host of things live including confidence. She's right, my confidence is in the toilet, luckily she told me some exercises to help. She gave me some names for acupuncturists. (I have this idea that I should get acupuncture for my WBC. I have a call in to to Dr B to see if it's okay. I already have an appointment, but it will be after my next appointment at UMASS, in case Dr B doesn't call back on this one. Not really an emergency.) I got home and there was a gentle coconut Thai soup from Beryl with stickers in the bag for B. Our friend Dawn brings B home on Wednesdays - making it possible for Pat to work the whole day. Those were just a few things that happened today that remind me that there are so many points in my day where people help that make my life so much more manageable.  And I haven't even mentioned how hard Pat works. She works really hard.

Bennett just came up to me and gave me a bear to hold so I won't be lonely while she and Pat read bedtime books. Is that not the loveliest?

All those things add up to me feeling better - or does feeling better remind me to recognize the love? Who knows, who cares? It's just good to be a tiny bit out of my shell.

My scan is on the 27th - the Saturday after T-day. We are not going to celebrate Thanksgiving this year. It's just too hard to celebrate a holiday that is literally a feast. So we will be mellow at home and talk about what we are thankful for and I will have some soup and Pat will eat her diabetic meal and Bennett will likely have fish sticks. That's how it works here.

Back to the scan - the follow up will be the 30th and that's when we find out what the last four months of chemo (it will be four months at the end of November) did to devastate the cancer. I am praying for a miracle here and why not? Let's all pray for the radiologist to exclaim "where did all that cancer go?!"

Enough about the scan, there's not a thing I can do to make it happen faster and worrying never helped, so I will talk about my new sleeping hat. When went to the Cancer Connection, they had a lot of hats in a basket. I found a hat that is specifically to wear to bed to catch the hair that is falling out. Now I have to say that when I was first diagnosed UMASS nurses gave me a packet that included a catalog with items such as this. I can't tell you how grossed out I was. These were things for other people. Ha! Now I am so happy that my pillow won't be covered in hair every morning. The only thing about this hat is it is baby pink. Bennett will love it, I know she will. Anyone still interested in the hair saga, I still have some hair, but have taken to wearing hats every time I go out. For warmth and because you can pretty much see my scalp at this point. It's too cold to shave my head, so I just cover it now. I have a feeling this next chemo blast will be the one that really does my head in. One thing they don't tell you is how sore your head gets. I am not sure what it's from, but I'll tell you my scalp is super tender.

My cold is much better.  I feel better. I have felt the love and here it comes back to you. Catch!

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.

I Hate This Blog

I hate that I have this blog, because it means I have cancer. I just read the Five Stage of Grief and I am so in stage two that I am embarrassed.


Anger – "Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?" Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Any individual that symbolizes life or energy is subject to projected resentment and jealousy.


There it is. My shame. I have nothing else to say except it's not a nice place to be in - to feel so much jealousy and anger. It brings me to sad bitter tears. I feel like such a meany, so unChristian-like, so sad. I know it must be normal if it's written down, but  I still don't like it. And now that I read it again, I am not sure I am  "very difficult to care for." And it's not true that any individual is a target for me. Mostly I feel jealous of freedom of movement - both literal and metaphorical. I feel weak and fatigued so I can't do much. I have a lot of crap going around in my head, so even if I can move I can't get away from myself. My head. My crap-filled head.


I didn't post last night because I just needed a night where I didn't have to end up crying in front of the computer or really digging into how I am feeling. I just needed a night with a stupid movie and Pat and for those two hours I honestly forgot that I am a cancer patient who has a ton of anxiety and fear and fatigue. I was just a person watching a semi-funny movie. Is that too much to ask?


As you all know, this blog has just about saved my sanity, but I might be going through a phase where it's hard for me to bare all. Or maybe not, because this seems pretty much like baring it all.

Mostly FIne

That's how today was. Mostly fine. I spent the morning in bed and the biggest thing I did was walk to the park and sit in the sun for twenty minutes. I am pretty crabby, so this post will be short. I think crabbiness is to be expected once and awhile. So it goes for today.

A Half and Half Day

Really I should say the day was 3/4 crappy and ended well. Well, it hasn't even ended yet, but I am predicting that all will continue to be okay for the next two or three hours- um, two hours. I am pooped, though that is not new.

The day started with me feeling faint and dizzy. I spent most of the morning and early afternoon lying down. That was all I could do. I tried to sort the laundry and ended up prone on the bed with weird colors before my eyes. I took that as a sign. I dozed on and off until noon, woke up for my second Ensure of the day and hung out with Bennett on the futon. Beryl and Ali brought over delicious potato soup made with a secret ingredient - love - it said so on the ingredient list. I had a bowl of love soup for lunch and went back to bed under my love quilt. I went back to bed after Pat took Bennett over to Sandy's to play with BFF Avy for a couple of hours. It was really good for all of us. Pat stayed home sick, and still had to take care of us. So having respite in the afternoon was a Godsend.

We spent that time dozing some more. And when Pat went to get B, they had to go to the store. While they were at the store, I listened to a chemo visualization tape. It's a little strange, but really helpful. I felt much much better after. Much more hopeful and I have to say with that tape it's the first time I've imagined my liver nice and pink and free from tumors. That is a very nice image.

I forgot to mention that Dr. B. called. My relationship with him is one of a lot of anxiety. I am not sure how it happened that when I think of meeting with him, or talking to him, I get a surge of panic. I am sure it's because we are always talking about cancer and tumors and treatment when we meet. He called to tell me the next time I get chemo they are going back to my original dose - that is twice what I got this week. I will get that plus the Neulasta (WBC shot). He said I can expect to feel bad for five days after this next chemo. Something to look forward to. I am pretty sure he is trying to get me all chemo'ed up before my scan. I am supposed to have a CT scan at the end of this month to make sure we are on the right track.

He also called to tell me that this certain blood marker that had gone up (bad) after going down for four tests in a row, had gone back down (good). And that the up measurement could be considered an anomaly. Let's pray that continues- the going down part, I mean. It was also revealed that my scan has not actually been scheduled and that's a big bummer. I have to work that out on Monday.

November is going to be a hard month with lots of days when we are going to need help. I am putting that out there, because I know there are people out there who sometimes wonder if we need help. The answer is yes. Mostly with taking care of Bennett during the week. Maybe picking her up from school and keeping her until we get home from Worcester. That kind of thing. We are going to look at the calendar for more exact dates, but if anyone out there can lend a hand, let me know. We really really know that we couldn't do this without so much help. Just today Beryl, Sandy and Snow Farm all gave us a hand and that brings me to tears. As Pat says, people are good.

Late Night Fast One

Yes, late night is 8pm. I am bushed. Do I start all of my posts this way? It seems like it. I returned my pump today and am glad to be free of it. As reassuring as the whooshing is it is heavy and cumbersome. So, I return it with hopes of getting it back in two weeks. Looks good, after all this was the first time I got to have chemo as scheduled. I almost couldn't believe.

And now I am tired is a weirdly wired way. All I want to do is sleep, but I am not sleepy. I think this is true fatigue- my mind is not where my body is. I don't really like it at all. I will do my best after having a terrible night's sleep with two sick people. Tonight I may sleep on the futon, to be away from the sickies and to get some sleep.

I am eating polenta with creamy tomato sauce. My stomach has been very calm lately which gives me a lot of hope. I continue my very limited diet which I am sure helps, but I also think the chemo is starting to work on the big tumor in my colon. I don't want to get ahead of myself, but I am feeling hopeful. How bad could that be?

Honestly, I haven't been all that hopeful lately. Mostly tired and grumpy about the things I can't do. But a friend reminded me that I can spend this time resenting what I can't do, or imagining the joy of doing the things I am missing next year. That seems like a tall order today, but I can work on it.

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.

Fairy Dora

Here is a good picture of fairy Dora. The crown is from Aunt Janna, the tutu from Aunt Joanne, the backpack from Momo, the Dora shirt from the $1 bin at the Goodwill. All in all the costume was a group effort. 

This is Bennett and Aunt Ruth talking through the holes in the pumpkin B helped carve. It's a kitty, and she carved the fur with a special tool that Aunt Theo had. Notice the winter coat and winter pants.

Chemo was fine today. Nothing new, lots of drugs that made me sleepy. I listened to a new visualization tape that was really interesting and made me sleepier and I possibly slept through a bit of it. Liz did her artwork and I don't know what, because I was asleep, but it was comforting to have her there.

I have to drop off the pump on Thursday and go to reflexology tomorrow. But right now I need to get to bed. One eye is drooping and that is never a good sign. More tomorrow.

Just a Few Lines

Tonight I learned that courage is being afraid and still doing. That I can do. So here's to courage and love and all things that are good.

More tomorrow after chemo. Wish me plenty of WBC!