January 3

That's the date of the surgery. Monday, January 3. I have some tests the week before and I am sure there will be some at home prep before the surgery, but there it is. I have such conflicting feelings about it. I am happy that I am in the right place health-wise to get the surgery, but I know it's going to hurt like a mother f'er. I can do it, I know I can. I am going to do every thing that I can to heal as fast as I can. I have an appointment with someone who is going to help me through something called Prepare for Surgery Heal Faster. From what I understand it is a custom visualization tape and process that will help me heal faster. I like that. I've also asked my acupuncturist if she will come to my house after the surgery and she said yes. Tomorrow I will ask Magical Maryann if she will come too. Knowing that these powerful healers are coming will also help.

I had acupuncture today. I can't really say why, but I love it. I love how subtle it is and how ancient it is. I came home and my intention was to listen to my mediation tape and then do some things around the house. Two hours later, I woke up. I am just going to call this a healing day. Because that is what I did, acupuncture then a nap, next thing I know Bennett is home and we are hanging out. What a lovely soul she is to have around. Don't get me wrong, three and a half is a hard age, so many questions and so much observation that it can be exhausting. But she is so fun.

She has a pretend grandma who lives in Springfield who is sick and has to go to the doctor a lot to get shots in her stomach. She is very sick and sleeps all the time. We talk about this grandma and every time it takes all of my strength to ask her more questions so she can talk about how she is really feeling about me. I know it's not fake-grandma she talking about, I know it's me. I try not to let it break my heart, and know that it's just her process and I have to honor it the best I can. I just wish with my whole heart that she didn't have to go through this. I wish I didn't have to go through this. I have to ask my therapist how to talk to her about being gone for surgery and coming back in whatever shape I come back in. I was going to say I was going to come back in fragile shape, but I am really coming to believe that my mindset has tons to do with how I feel. Okay, the light headedness is not really something I can control, but I think part of the reason I don't feel nausea is because I don't think this chemo makes me nauseous. I stopped taking about half of the medicine because it was making me drowsy and I feel fine. I even ate an Oreo cookie tonight. That is not soup. I hope I haven't done something terribly wrong.

Thank God I feel fine. I am going to try my best to make this break from chemo as good and productive as possible, with a little Christmas cheer mixed in.

Tomorrow's The Day

And I have been wigged out all day. I couldn't even relax during reflexology. The music was wrong, I had terrible thoughts zooming in and out of my mind, it was a bad scene. I called my mom who told me to find something distracting and hard. So I downloaded some puzzles on my Ipad and spent the evening with Bennett doing puzzles. They weren't hard, but they were distracting - as was Bennett and her lovely way.

Aunt Julie will have B while we travel the miles to get to Worcester, return the pump then wait for Dr B. I keep trying to picture him as a saint to help me see him as a benevolent force, but it's hard. Pat and I decided we don't need to know the details of the scans, we just need to know what we are going to do moving forward. If this chemo is not working, then what? If it is, how long do we do it until the next scan or whatever kind of check I am supposed to get?

I have friends who have loved their oncologists. I really wanted that to be true for me too. I want to love Dr B. I want to connect with him and feel like we are working on this project together. I don't know what's missing. I think it must be my aching fear that I suffer from every time I see him. Our very first meeting I had to put my head between my legs to not hyperventilate. I think of myself as pretty tough, but in this case I need softer delivery of information. But really how can this kind of information be delivered any way but how I hear it through the fear-filter.

So I will know a lot more tomorrow and hopefully I will feel like posting it. If I need to hide under the covers and not post, I know you will understand. I am actually doing more stewing than posting, so I should stop soon. I want to be a braver more graceful person. I want to write a post about how we are going to Worcester and are sure we are going to get good news. It's hard to feel that way, when most often it hasn't been true. Maybe tomorrow will be my day where it all turns around and I start to love my oncologist.

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?

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.

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.

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.

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.

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?

Still Pumping

Imagine my surprise when I looked up at the title and it said "still pimping." I fixed it, but I might use it another day...

Quiet, rainy day filled with a lot of nothing much. Took B to school, tried to walk Zeus but he wasn't interested in a walk in the rain. Watched some TV on the computer while trying to take it easy. I will not go into another diatribe about how hard it is for me not to do much. Cleaned up a little and did the bills. I am ashamed to say I hadn't paid them the slighted attention since the first of the month. Thank goodness for auto bill pay!

The big activity, if you can call it an activity, was my weekly heavenly reflexology appointment with the magical Marianne. I am on the list of folks who can have reflexology every week at the Cancer Connection. Usually folks are only allowed to come every two weeks. I finally got up the nerve to ask why I am on the list. I was afraid it was that they knew more about my prognosis than I, that they knew something terrible was happening, and all that paranoid stuff. Pat handily reminded me that they don't know anything more than what I've told them and they do no have access to my medical records. So, Marianne said I am on the list because I am actively receiving treatment and that I respond so well to reflexology that she would like to see me every week to help work through some of the symptoms as she can. I love her for that. She is so attentive during the session, because I cry a lot, she tells me different ways to breathe so I can be calm and still have my feelings. It's just such a relief to be touched in a non-medical way, in a room that smells really good and there's always soothing music. And at the end, she puts my socks back on my feet. I can't tell you what a humbling experience that is for me.

Pat has been picking up B at school this week because I can't visit that pool of germs. So I had a few lonely minutes alone before my family came home and it was so good to see them. I have been meaning to write a little more about being lonely. I am lonely these days not because I don't have stellar people around, calling me, sending care packages and books. I am lonely because I finally realized that no matter who is around me, I have to do this journey myself. Not by myself, but myself. It hit me in the hospital when the oncology nurse looked me in the eye and said, "and infection for you is a big deal, life and death, so don't mess around." This was when I was complaining about getting rid of the houseplants and not being able to pick up and drop off Bennett.

At that moment it made sense to me how tenuous things are at the moment. Life and death seemed really abstract, but hooked up to three IV antibiotics in an isolated room with warning labels on the door is nothing to mess with. When I took walks around the hospital I had to wear a mask, when I was in the ER, I had to wear and mask the entire time I was there, even while I was asleep. It sort of put things in perspective for me. Okay, Mary and Libby were wearing masks too, troopers that they were (and are), but it was my body fighting the war. It did a good job and I will do everything I can to protect it from another fight like that, because I want every ounce of energy that I can muster for the bigger fight. For my life.