What Happened Today

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

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

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

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

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

Kitty Appears to be Fine

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

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

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

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

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

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

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.

Over the Hump?

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

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

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

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

Crying for Cabbage

Tonight I actually started crying when Pat ate her dinner. I was so jealous. She sat down to eat some sauteed cabbage, carrots and chicken. Not exactly gourmet, but compared to the Ensure and the anti-gas pill I was consuming...and it smelled so good. I realize now that I haven't had a real meal since I was in the hospital five weeks ago. Sure, I've had my soups and my beef broth with an egg, but my soul wants a plate. A plate with whole foods on it that I can bite into and chew. Ah, to chew, what a thought.

There are two problems. One is the blockage by the big tumor in my colon which means not much can pass through. I won't go into too much detail, but you get the picture. The theory is when the tumor shrinks, the area for what used to be food to pass through would get bigger, thereby making eating easier. There is also the real chance that this part of my colon will actually shrink with the tumor, then I will be in exactly the same predicament as I am now. Time will tell.

Problem number two is the gas. And we've talked about this before. An indelicate subject, but one we all know intimately. The place where the tumor is sometimes blocks the gas from getting to where is needs to go - which is out. So I take an anti-gas pill four times a day. They help a ton, but there is still enough air movement to make Pat turn her head and Bennett to ask if there is thunder in there (a direct quote from last night).  And it does hurt sometimes. Not like it used to, but if I am not super careful about what I eat, when I eat, how much etc., I can get into some real trouble, which really scares me.

And it makes me so sad. Sadder than I thought it would. I guess it's a little like my hair. I didn't think it would bother me, but it really does in a deep and troubling way. I knew the cancer would really bother me, but I just assumed the hair and the food and the fatigue would just be sort of incidental. I knew my life would change, but not so thoroughly. I am not sure what I was thinking. I guess there is no way to know until you get here. I can talk to as many people as I want who've made it to the other side, but I can't know what my journey, my response, will be until I am there.  Sometimes it is as big a surprise to me as it is to you.

Tuesday

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

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

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

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

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

Eskimo Kisses

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

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

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

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

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

Some Sunday

Today I went to church. I decided that I wanted to go to church this summer and Pat and I tried one. We didn't like it that much, and Bennett kept thinking we were going to the circus. "Where the circus, mama?" What a disappointment! So we didn't go back and took an inadvertent break.

We have a Lutheran Church down the street and I thought I'd give it a shot. I went by myself this time. It was very pleasant. I don't know what the Lutherans are about, but the pastor was super accessible and the service was interesting enough to keep me attentive. I'll go back next week and see what's it's like again. There may have been a touch too much about all of us as sinners for my taste, so I have to find out if that was just the sermon or the flavor of the church.

It was a big deal to go by myself. I wanted to go back to bed so bad, but then I joined Pat and B on the drive to Trader Joe's. I sat in the car and talked to my sister, Mary, while Pat did the shopping and B did the snacking. Mary is going to Africa next week for a seven days. I am going to miss our talks a lot, but good for her for getting away and relaxing. She's going to need to soak in all that warmth for when she comes back here in November or December. I am already looking forward to that visit.

After TJ's, B went to Aunt Liz and Aunt Jewwelie's for an afternoon of fun. Pat and I got to take a nap, I didn't really sleep, but was plagued by the bad voices. Mostly about what actually happens when a person dies "from cancer." I had a very poignant and helpful conversation with my mom who helped me understand that it tends to be a shutting down of the system - or as I put it, organ failure. My mom assured me that my father (who died from cancer) had a peaceful death and that the hospice angels made it that way. It was very very comforting and sad.

We then had a long conversation about the use of anti-anxiety meds. My doc has been telling me to take them as often as every four hours- that is Atavan or Lorazepam. I really try not to, thinking that I am cheating. I now believe that if I need to take something to stop myself for torturing myself (as my mom put it), that it is not cheating. So guess what? After I hung up the phone I took half a does and it made the entire evening more pleasant - and I believe more pleasant for everyone. And I am not torturing myself at all right now and it feels really good.

More good news is we finally found a home for the fish tank. Thanks for the always generous and fearless Aunt Liz. It is be a huge relief not to have to worry about the sheer neglect of those beings anymore. Thank goodness. They will go to their new home this week, phew.

And that's about it. Read books to B, posting, going to watch a little Top Chef season three and go to bed. All in all not a bad day. I think I am over the hump of being chemo-ized. I will know more tomorrow- and so will you.

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.

Just a Quick One

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

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

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

Meeting with Dr. B

Today I had my big meeting with Dr. Bathini. I came out of there terrified for my life. I didn't really learn anything new, just that he has a way of presenting information in such a stark way that I feel knocked down. There's nothing new to report, and I know that logically, but logic is lost to me in this situation. I still have the same cancer I did yesterday, I still know that I will never go back to being who I was before I was diagnosed - physically that is. I get that surgery, if any, is a long way away. My liver is a mass of tumors and my lymph nodes are a mess. I get all that. It's just hearing it all again, in the doctor's office while he is trying desperately to help me remember there is so much good news. So many advances in the medication, so many people living much longer than they ever imagined, so many new procedures and drugs.

This all well and good, but what I really wanted to do was shake him by the lapels and yell. Yell anything, things like "am I going to live?" "will I die a very painful death?" "what the hell are you talking about, this can't be my body you are talking about."

Now we are getting somewhere. How could all of this be about me? Me, the one who has always been so strong and healthy? How can it be that on July 25th I was healthy (or thought I was) and July 26th I have stage four colon cancer? How long has this been growing in me and I didn't know it? How come I didn't have any symptoms? I can't tell you how many hours I have wracked my brain to figure out if I missed something, did I have some sign that I ignored? Maybe, I just can't remember.

It's just rotten filthy bad luck and nothing to be done. I've cried, prayed, talked, taken an Atavan, it all helps. But, at the same time none of it helps. It doesn't change anything, it makes me feel better, sure. But the cancer is still there.

I am trying so hard to remember what Julie said to me this afternoon, she really gets into trouble when she is living in the future. The present is not terrifying- it just is what it is. What is my present? Pat is helping Bennett to go to sleep. I am posting and getting ready to lie down for the evening. I should eat some of the soup Kate brought by, but my appetite is nowhere to be found. My present is feeling the physical leftovers of the fear I've been fighting all afternoon. My mouth tastes like dirty socks - that's from the chemo. I have a headache from holding myself together. Zeus needs a bath and it looks like we have a line on a new car.

If I let it, fear will steal my life from me. Honestly, I don't know how long my life will be, why would I give it up to something as useless as fear? As my friend Ruth says, "fear, I scoff at you, Ha Ha!" The thought of saying that right now makes me want to have a break down, so maybe I will leave the scoffing for later, when I am a little less teary and a little more steady on my feet, feelings-wise.

Oh Yuck

That is how I feel. Everything smells terrible and tastes even worse. I have been guzzling Ensure all day just to keep up with calories and try to give myself energy.

The day started off fine. Dropping B at school, walking Z, getting B's winter clothes out and ready. Then that was it. Oh, I made a few phone calls and then needed a nap. I slept way too long because all I want to do is go back to sleep. I crept under the love quilt, after reading a book about God my brother-in-law sent my way, and it was snooze city. I didn't wake up until I heard Pat and Bennett come home - two hours later. Now I feel like a lump of unformed clay with a really bad taste in my mouth. You know everyone talks about getting a metallic taste in their mouths from chemo. Mine is just a really bad taste like I haven't brushed my teeth for about a month and the back of my tongue feels really fuzzy. It's pretty gross.

I have to return my pump tomorrow at 1:30 and see Dr. B. at 2. I would bet money he is late, but he is worth waiting for. My goal is to make sure we are on the same page in terms of my treatment. I feel a little adrift at the moment and need some reassurance that we working toward the same thing - my optimal care. I will feel better after talking to him, I know it in my heart.

Julie rescued me from having to drive myself to Worcester. She hooked me up with her friend Ann, who I have met a few times. I was so happy to hear that I had a ride that I cried. I was a little stressed about the drive on my own. It wouldn't have been bad if it was just returning the pump, but the whole seeing the doc and not knowing how long I am going to have to wait, etc. was making me worried about my stamina. Thank God for good friends and generous souls.

In other news, Pat's car came back from the mechanic with a note recommending "vehicle replacement." So we are on to getting another car. We have Holyoke Auto Center on the lookout for us and I sure they will get us what we want- a no-frills Subaru with all wheel drive. I want to AWD car to get us to Worcester this winter. That is my goal. Let's all pray for a mild winter with no ice storms. Okay!

That's about all I have for today. I am wicked beat and need to do something more restful than this - I can't even think what that could be . Maybe staring into space? Sleep, yeah, that's more like what I need.

I Got It!

Nineteen days after my last treatment, I finally got some chemo. I am so glad to be sitting here with my pump that Bennett says sounds like a kitty meowing. I have been sneezing all evening, and remember the last time the same thing happened. Could it be another strange side effect?

There was a do or die moment - my WBC were only 1300, they usually want them to be 1500 for treatment, but because they turned me away last week, they made an exception. I am prepared to feel slammed down after this treatment, especially staring with lower WBCs. I am hoping not to and have a list of things I would like to get done tomorrow, but if my love quilt calls my name, I will be under it.

I have an appointment with Dr B on Wednesday. I heard the nurse tell him I was asking for Neulasta. Instead he lowered the does of Irinotecan. I cried. I don't like it when they "dose reduce." I know they are trying to find the most effective dose for MY body, but I don't want less medicine, I want this to be big medicine. My sage friend Ruth reminded me that sometimes the biggest tool is not the most effective - sometimes the little hammer is what you need to do the job with the most precision. I will work on adopting that philosophy.

What am I going to do tomorrow? Pick up meds, work on glass and walk the dog. These are my goals- if I can do them. Try to get enough calories. I must be doing something right because I weighed exactly what I weighed last week - 99kg. That is 217 - I started this process at 245, so I still feel like I need to keep the calories up up up. It's not that easy because I have a weird taste in my mouth, my mouth always feels dry and my belly is so picky. I had to eliminate tuna with mayo (protein and fat galore) because I realized it was the thing that was giving me so much gas that my belly made the bed springs shake. Good news though, is that polenta seems to agree with me and I love polenta. It's so strange what becomes important when you can't really eat. Honestly, I wouldn't eat half what I force down if I didn't have to. The Ensures are becoming my mainstays and that is saying something. I think I already said that I just think of them like medicine and that makes them go down easier. Now I just wish they didn't cost an arm and a leg...

Time for bed. I am praying for an easy sleep, energy for tomorrow, power and courage. Pray with me, will you?

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.

All is Well

Pat is gone for the weekend - or at least she was gone today and I haven't heard when she is planning to come home. There was some talk that she might come home in the wee hours of the night tonight. Of course, that would be my choice, but all and all B&I had a great day.

It started at 6am when Pat left. Bennett did not want to go back to sleep, but was content to play while I lolled around in bed until 8. What a great kid. We painted, we played, we took Zeus for a short walk (we were chilly and had to turn around). Midway through the morning B told me her hair was hurting her eyes, so I asked if she wanted a haircut. She said yes. I told her I would just do her bangs and when I was done with her bangs, she told me to cut the back. Now she looks like Amalie again (from the French movies, that I am sure I spelled wrong). Aunt Julie arrived at 1:30 to save the day and take B to the Eric Carle Museum. I got a nap and did some laundry. It was a good time.

A little tea and Dora and it was time for dinner and bed. B is sound asleep, I feel good. I feel like I accomplished something really big- I took care of B all day and have been diligently keeping my thoughts here, now. Bennett took a tumble today and hurt her lip, I was on the phone with Ruth and yelled into the phone, "I will call you back" and hung up. Five minutes later, Aunt Ruth to the rescue. So I had a lot of help and a lot of love today to get me through, but it hardly felt like something to get through. It just felt like life. My life. What a wonderful way to feel.

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.

No Chemo Today

And I am so mad. I spent the last week feeling great and woke up this morning exhausted and in pain. That was not a good sign, and I knew it. I got to Worcester and the first thing I asked Sue was if I got chemo, could she please give me something to sleep through it. A few moments later, I heard her saying to Dr. B. that I was exhausted and my WBC count was 1000 - the minimum. Then they kicked me out. So technically I am neutropenic again.  This I am not happy about. I did everything right last week. I took it easy, I washed my hands to the bone, Bennett and Pat have been diligently changing their clothes when they come home. I have foregone countless hugs from friends whose clothes were not newly changed. And still I couldn't get chemo.

I am so pissed and a little relieved. I have to say that I was so exhausted this morning, I just didn't know how I was going to get through it. I guess I didn't have to. Pat brought me home and I took at three hour nap. I am still tired, if you can believe it. I am going to help Bennett get ready for bed, do a little getting ready for the house cleaner who is coming tomorrow at 9:15. We have to also take Pat's car in for repair and get Bennett to school. Never mind walking Zeus. Who knows when that will happen?

My next appointment for chemo is Monday at 9. Anyone want to come? I am not sure, but I think I need a ride. I haven't been able to figure out the ride situation yet.

More later, my friends. I need to eat some mushy dinner.

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.

Sorry about that

I've heard from a couple of people that they worry when I don't post. Sorry about that, I just took a break. I think I was watching The Biggest Loser, or some crap. It's actually interesting that I need to learn this lesson again, when I don't post I feel a little bummed out the next day. Like something is not quite right. And if you think about it, so many things are not quite right about now, that I do not need to add another one.

I have two more hats to share with you. This is the winter hat that my sister's friend sent. This friend is a doctor so she knows things...

I look like a skater boy. The hat says Mountain Hard Wear on it. I love it, it's super toasty.

This one is the at I just finished knitting. It is purple with a silver/gray edge. The pattern is from www.knitty.com and designed by a bald guy. It's a hat specifically for bald people.

This is how much hair I have now. That's a big forehead. I am grateful to have any hair and I am sure you all are pretty tired of me posting about me hair. It's still there, that hair. And when it's gone, I'll let you know. Until then, you all can just assume I am keeping it for a little while longer.

My sister, Janna, is coming to visit tomorrow. Just for the day, and I can't wait to see her. I haven't seen her in 11 years. I am not sure how that happened, but it will be a huge treat to see her and just be with her.

I am having a very nice day. Pat worked her butt off trying to get a big window put in, she will finish tomorrow and I can't wait to see it. It will let is lots of light that will effect the new bedroom, the old bedroom and a room we used to call The Rotten Pink Room. It was rotten and pink, now it's not. We have to find a new name for it. The Gallery. Now we just need to get it drywalled and painted...ugh, so many things I can't do. I can call workpeople and hire them. As long as the money holds out.

Last I want to mention the incredible gorgeous handmade quilt my sis-in-law sent. It is so incredible and she made it too! I can feel the love coming from it. I can't take a picture right now because Bennett is asleep and I don't want to wake her up. I did want to mention how touching it is to get something so lovely and loving. It's like getting cancer was the only way I was going to ever understand how truly good people are. I just didn't know and now I do and I can't believe the humanity around me. I am so lucky. Praise be.

Great Story

Pat just got home from work with a great story of a friend's father who had stage-four colon cancer six years ago and is doing fine. That makes me feel great. Hopeful. Really really hopeful. The doctor who diagnosed me told me he had a patient who was diagnosed later than I, and that was 10 years ago. I hold that close to my heart. Every once and awhile I wonder if he was just trying to make me feel better, but why would he? He had no reason to lie. I will think the best and believe my goal of seeing Bennett graduate from high school is a realistic one. That was my secret goal, but now you all know and you will all help me get there - and beyond.

I had a good day today. Another pain free one. Maybe, at this point, I can just report when I have pain. Or why not, I like to say that it was a pain free day. It makes all the water drinking, soup slurping and yogurt eating worth it. I can tell you that this food lover is still struggling with the limitations. That's okay, I have really grown fond of peanut butter from the spoon and cream in everything. I almost can't wait to see what my weight is next week - just to see if this Ensure/cream regimen is working.

Bennett and I spent most of the day at home. I should clarify - I spent the entire day at home, Bennett had an afternoon at the farm with Aunties Ruth and Theo. They all looked like they had a blast when they came home. I really miss going to the farm - all that dirt and bacteria is not good for me. Next year, I tell myself, I will be able to not only go to the farm, but I will be able to touch the veggies and eat them. That will be a good time.

I can see the difference in B since she started her new school. She doesn't really care as much for TV and wants book after book. We must have spent three hours reading books and finding ebooks to download and read. I know they've been working on maps at school and today she brought me a book with a picture of a globe on it and said "where do we live?" It was really cool. I am so happy she is so happy at her school. Because I am a worrier, I am now worried that we have to find her an elementary school that will be just as stimulating. Yikes!

It's pretty nice to worry about something else other than my health. I am praying that chemo goes okay next week, that every chemo treatment is one step closer to surgery which I am psyched about and dreading at the same time. I don't know when it will be, but it's in my mind. Oh, my mind, so many things stewing. But that is another post. Tomorrow, more hats, more rants, more calls for prayers and light. See you then.

Not Yet

So the razor is not here, and the comb was kinder to me than I thought it would be. We will wait for the weekend to do the deed. Until then, I will model some hats that have come my way. This one from Linda at Plumdinger Studios in Pittsfield. I love it and it's lined with fleece!

This one from the lovely Deanna, who is an awesome knitter and spinner. Check out the incredible cable pattern on this one. The yarn is super soft and it's a great color.

Here is a scarf from Libby. It's got lots of great things about it - not only is it from my wonderful niece, but it's orange, and it has the words "confidence, wisdom, grace" printed all over it. What more could you ask for?

Last for tonight's posting is a hat from my friend, Elizabeth, who lives in Vermont. I think the fashion sense in VT wilder than Mass. At least Western Mass. 

There are others, including a great winter hat from my sister Joanne's doctor. She said it's the only hat that kept her head warm when she was bald. I am knitting a purple hat and I am sure has the winter progresses, I will acquire more head gear.

My day has been a good one. A nice session of reflexology. It is so good for my soul. My belly is a little sore today, but seeing as I've been pain-free for 10 days, I can deal with a little bit of soreness. This is nothing like the other belly pain. I don't even want to use that word, since I am not in pain, just a little ow-y, as Bennett says. I am grateful for the gift of today. The light is really coming my way.

Going, Going, Not Gone

Just a super quick post tonight. I am pooped after a full day of feeling pretty good. Pat stayed home this morning and we did a lot of cleaning. This time with me pitching in much more than last time. I organized the recycling, which is a mound the pile of a small car. We keep missing recycling day and we are pretty good recyclers. P&B also got flu shots, B and half dose. The second half in 30 days.

More to the point, the hair is coming out fast and furious. I asked Pat to get me an electric razor on the way home from work tomorrow. It is falling  out so fast I have been afraid to comb my hair since two days ago. Tomorrow I will wield the comb and come what may. If I have a razor, then I can just be done with it. It's been a pretty tough day coming to the conclusion that the time for baldness is now. Why is everything such a process? Why do I have to grieve every change? My friend Jim says none of this is normal, so why do I expect to have normal feelings? I am quoting what I heard, probably not what he actually said. Sorry, Jim.

So, tomorrow reflexology and possible head shaving. What does your day look like?

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.

Different Day. Thank God.

I have to use that old cliche - what a difference a day makes. I feel good, strong(ish) and with the exception of an hour or two of bad thoughts, I had a great day. An easy day with Bennett who is still getting over a cold. Pat came home early and took B to the park with BFF Avy. I had a few hours alone which I thought I would use to take a nap. I didn't need one, or my fear didn't want me to have one because all I did was lie there and think of scary scenarios.

I have to admit that I was online today. I was doing some surfing about canning (which I still want to do, but am banned from touching produce, so can't) and came upon an interesting site. As I was reading, it became clear the blogger's mom was in the midst of chemo and before I could look away, I was reading stats about life expectancy etc. It totally freaked me out. I am grateful for every day and I pray that I will read the archives of this blog when I am 80, but 2.4 years or 7.5 years or whatever this study said completely fed my fear's voice and that was that. I basically spent my nap time crying and worrying about Bennett liking her new mom better than me, or worse not remembering me at all. It was b. a. d. bad.

Yesterday, when I was prone all afternoon and talking to my mom, she told me I needed a project. I whined a lot about how the projects I used to do are not compelling and the sweater I started knitting last winter is going to be too big now, etc etc. Just thank your lucky stars you are not my mom, the conversation was pretty pathetic on my part. So...my mom sent me an encouraging e-mail and I have spent the evening knitting while watching Top Chef. I even repaired a sweater that a friend gave me to fix last year. Ahhhh, that feels good. I am definitely knitting tighter than I have in the past - pulling that yarn a little too hard while making a cap to cover what will be my shiny pate.

I thought I was going to miss the losing of the hair, but Pat informed me that I have a bald spot on the top of my head. Oh man. I knew the front was getting pretty thin, but a bald spot? I better knit fast! Now I just have to figure out what the markers will be for the big shave. How big a bald spot? How many bald spots? Just how thin and dead does my hair have to look before I can get the nerve to shave it? And why does it have to be in winter? I should have planned this better.

That's some painful irony there.

On that note, I will say goodnight. I will ask outright for prayers and good, right thoughts. I really need them tonight to chase the fear away. Together our voices and thoughts will drown out that wily, unwelcome fear and bring in the light.

Mind Full, Body Blank

What a shift today. I woke up fully aware this morning, but so tired. Tired is not even in the same league as how I felt. Exhausted, fatigued? None of it is right. I heard the voice of Sue the chemo nurse, don't spend all day in bed. So I got up and walked the dog. My ears were blown and that makes me feel like I can't really see or hear, so that was pretty uncomfortable. Plus, the walk was brief. I got home and played with B for about an hour and had to take a two hour nap. Pat took B to Aunt Julie's while I continued to spend the day in bed. Mostly giving myself a hard time for being in bed. I wrenched myself out for about 30 minutes, which I spent shakily cutting glass in the studio. That sent me back to bed for another nap. At that point I called my mom and spent the rest of the time in bed, reading, chatting and feeling like it just had to be okay that I needed to be there, in the damn bed.

I would be there now but Bennett is sleeping there. I have been spending the nights in the back room because Bennett has a cold - and Pat is working is that room. 4000 square feet and no place to go. No, really, I am being melodramatic. I want to post. I want to post to a blog called "My Cancer Year." The premise being I tried having cancer for a year, then gave it up or adopted some parts of my experience into my life, but cut some of the harder bits out. Like this is voluntary - and at the end I get a fat book contract.

No such luck. This business has been going on for only about 2.5 months and I am already pretty sure what bits I would cut out. The cancer would go, for sure. The chemo right after that. I would keep the people at UMASS Memorial because they are so nice and attentive. I would also keep all of the reflexology and the ways people are super nice to me. I would also make sure not to keep the fatigue and all the millions of pills.

Oh, and the Ensure would have to go. My god, how gross is that stuff? I have been drinking two a day to up my calories. It tastes like a bad milkshake with a multivitamin crushed in there. I am very thin, at least for me. My smallest pants fall off me and I need to get a belt soon or the world will see the state of my sad sad huge underpants. Am I getting too personal?

Tomorrow is Monday. Pat will be home in the afternoon, so I don't have to worry about the long day with B on my own. We need someone to come live with us. Why, I ask, are all of my nieces and nephews so responsible and stable? If only there was one who needed a place to be for a few months, who would be willing to help out and just be part of this craziness? Any ideas?

I am going to pray for tomorrow to be filled with light, enough physical and mental strength to get me through the day, and a good appetite. Pray with me, will you?

A Blank Mind

It's uncanny how today my mind had been utterly blank. Not one bit of inspiration or idea to be had. I can't even muster a scary scenario. Oh, maybe I could do that if I really tried. It's as if all of what has happened in the past week has gone underground and has left me with nothing.

Today I did very little. Took a shower, played with B, folded the laundry and napped. That's the sum total of the gift of today. My friend Ruth assures me that my mind is working things out at a very deep level. That's a pretty nice way to let me off the hook for being either total spaced out, in denial or disengaged - or all three. I will take it, though, because I try so hard to stay present and real that sometimes I just need a day of blankness. Of course the fear is I will be blank forever.

I did fall asleep to the thoughts of working on my stained glass project. That could be seen as a good sign. Or maybe I should just stop questioning and let myself be. Alright.

I feel a little weak and tired today, like I don't really have the energy to do much. It's hard because I don't want to use too many calories to, say, take a walk. What if not taking a walk means I am giving in to being weak? It's such a hard balance. I have to remind myself that I am one day post chemo and that it is normal to feel kicked to the curb. Maybe this entire post has been a way to make myself feel like the way that I am feeling is not just normal but okay.

A Little Nutella Never Hurt Anyone

I hope. In my quest for mushy foods, and my need from something other than protein shakes and yogurt, I have taken to eating Nutella from a spoon. Can you blame me? Last night I nearly licked the computer when I saw an image of sushi. The hard part is not getting enough tasty food, it's that I can't really prepare things from fresh veg and fruit, so I go for the easy soup packets from the pantry and a fab mashed potato soup from potato flakes that Mary taught me. But really, this gal needs a slice of pizza and some sushi. I will, I suppose, have to wait until my colon is repaired. Until then, send willingness to eat soft foods my way. I will continue to cultivate gratitude for being able to eat without pain now for 5 days!

Now, that's something to celebrate. That and dropping off my pump today. Julie drove in her snazzy car with heated seats - my butt has never been so cozy. I got a chance to talk about some of my fears (ad naseum, poor Julie) and feel much better. Thank goodness.

I will make this a short one, lots of love to everyone. Bennett has a cold, Pat is working on the torch, I am going to watch a little TV on the computer and hit the sack early. Let's all pray for a nice quiet weekend, with lots of good health and healing light.