Mary Cometh

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

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

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

Happy New Year to you all!

December 30

Well, I started the day about 5am when B woke up and could not be convinced to go back to sleep. It was like torture, but the ever gallant Pat got up with her about 7 and I got to sleep a little bit. After that I went to acupuncture which is about the best thing in the world. I think I got the deluxe treatment because there were needles in my chest, belly, feet, ears and head. I could really feel the chi in my head and feet. To me chi feels like a little electrical shock that goes down my body- sometimes just one side. It's very cool when it happens.

I got a bunch of things done like getting my glasses adjusted and going to the bank, doing the laundry and making up the beds with our new heated mattress pads. I hung out in the new bedroom with B today, so she would be more used to it for when I am recovering there. We played games and puzzles on the floor. It was lovely.

Oh, I also picked up my meds for pre-surgery. The laxative came in a gallon container, I kid you not. The afternoon and evening of Jan 2 are going to interesting.

Then three o'clock came around and Aunt Ruth came over, Bennett fell asleep, our friend Beryl brought over some great take to the hospital gifts (a warm fuzzy blanket and a puzzle book), and Dale and her partner delivered a treadmill for during my recovery. It is just the right basic machine that I need. I spent the rest of the day doing crossword puzzles and playing word games on the Ipad. I think I just needed to escape for awhile.

I feel pretty calm and am grateful. I am more and more choosing this surgery boldly. I am even glad it's happening.  Can you believe it? I hardly can. But I am not going to question it, I am just going to go with the flow and keep it up. You all are helping, I can feel your radiance.

Phew! What a Day!

We got up and got B to Sandy and Avy at 6:30, in the dark, without a hitch. I think just leaving her in her jammies made it work out. Plus Sandy and Brad were there to greet B, and she loves them, so it all was well.

We got to Worcester a little early and it was a madhouse in the pre-op testing area. The nurse told us that people where trying to get procedures done before the end the calendar year for insurance, whatever, it was crazy. We waited and I got a test, we waited some more, and I got another test and blood drawn. Then we waited for about 45 minutes to talk to the anesthesiologist- we'll all him Dr. Smooth. He was calm and reassuring and made me feel sure that the pain is going to managed just right. A very nice feeling.

I am going to have an epidural catheter in my spine for a few days. They put it before the surgery while I am still awake. Dr. Smooth assured me that they are pain management specialists and the epidural will not be anything like the spinal tap I had in the emergency room in NYC about 20 years ago. I think the guy who did it used his boot to get it in between my vertebrae.

SO I am officially cleared for surgery. Now I have to gather all the drugs and special soaps for my trip to Worcester the night before. I am ready to delve into this life saving surgery. I am also looking forward to not having pain all the time where the primary tumor is. It will be a huge relief to have it out and the rest of the gunk they get too. Here's to getting the gunk out!

Pre-op Tests Tomorrow

Pat and I will be getting up very early to get ready, bundling Bennett out of bed and delivering her to Sandy and Avy at the crack of dawn. We need to be in Worcester at 8 for tests. I am nervous and curious. I am sure I am going to pass the tests, but curious about what they will have me do the night before. I know I have to do what they so innocuously call "bowel prep." That's a nice way of saying that I will have to take the most enormous amount of laxative and spend the evening and night pooping my brains out. This will take place at Hope Lodge, where I will be spending the night before surgery. Lucky them.

I had a good day today. Lots of energy, probably from Reiki. Reiki is wonderful. I love it. I love all those therapies where I am attended to and made to relax in a profound way. I have acupuncture on Thursday, then I am on my own until I get back from the hospital. I think they will have other ways to get me to relax in a profound way at the hospital. I decided to cancel my talk therapy this week. I was supposed to go on Friday. I leave there so anxious that I decided it would just be better to do without. I couldn't figure out what my outlet for that anxiety would be. The last two sessions happened before acupuncture, so Nancy helped me deal with my anxiety. This time, there is just me and that is not enough these days.

So I went to Reiki, came home and hung out with Bennett. Bennett's BFF Avy came over to play for a little while and I got to visit with Sandy. It was nice. It felt pretty normal. It would have felt even more normal if we didn't spend half the time talking about cancer and surgery.

I am going to end here. I still feel the fighting spirit and hope you all will send me your fighting prayers. Is there such a thing? There is now.

The Countdown Begins

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

What?!?!?!

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

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

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

Happy Boxing Day

I am not really sure what Boxing Day is, but I know my sister, Mary, who lives in England is having a jolly good time about now. I had a good Boxing Day, celebrated by going to church and spending most of the day with Bennett and the Ipad. The storm is here, and it is very quiet except the wind and the plows.

So that means it's up in the air about getting to Worcester for my pre-op testing tomorrow. I will call them in the morning and see if they are up and running, then we will make a decision about safety, etc. I am anxious to get the tests done and then on to what feels like my last week of freedom.

I know I am supposed to keep my head out of the future, that Nancy would say that the future is God's business, but I am anticipating a lot of time healing and having to be still and quiet. I am trying not to think about pain, because I know that those folks at UMASS are expert at pain management and I will not be in pain if they can help it. So let me stay out of god's business and stay in today.

This is what I have today. I have a loving and lovely family - and extended family and friends. I have a beautiful Christmas tree and a funny dog who loves me. I have two cats who are a pain, but are fuzzy and sweet. I have good friends who love me and call every day to see how I am doing. I have a sister who is willing to come to help me for three weeks of her life. What gifts are these? How can my life be so good while I fear losing it?  I just have to remind myself over and over that I am not dead, that my life is still in me. That I am here and the fear is welcome to get the hell out of here.

Merry Christmas

And it was. We all woke up this morning and were having a good cuddle when Bennett realized it was actually Christmas morning. It took a full two seconds for her to run out of the bedroom and start at the presents. She was done pretty quickly and we had fun playing with her stuff all day. She cried really hard when her tribe of Aunties left. She loves her new scooter and rode it back and forth through the house all day. We also watched Willie Wonka and tried to get her to use the potty. It was a BIG day.

I am trying my absolute best to try to stay present and really be in this big day. Nancy, my acupuncturist, says that I cannot fully engage in my life if I am constantly steeling myself against my sadness and anxiety. So I remind myself that I am alive today, that I have to give the future (even the next minute) to God so I can be held through all of this.

We are getting a storm tomorrow. I just looked at weather.gov and it says 9-13 inches possible. Well, that makes up for the lack of snow so far. Snow Monday too. That makes me a little nervous for travelling to Worcester for the pre-op visit, but the MassPike should be okay. And here I am worrying about the future, when I said I was trying not to. Let it go, already, will you?

Merry Christmas Eve

Bennett is going to bed, having a hard time sleeping because we told her that she gets to open all of her presents tomorrow. She was so happy- she actually said "I am so excited!" Me too. I can't wait to watch her open her presents.

It was a beautiful day today. I had therapy (which I am still not sure I like), acupuncture (which I would do everyday if I could), and then we delivered the almond flour-agave sweetened cookies to our friends who are on similar diets to Pat. It was fun and nice to see people. It has been a long time since I was in someone else's house. We had a nice visit from Aunt Ruth, who brought a bag full of presents. It's her birthday, so it was fun to celebrate that too. B got to open one present and now she is off to bed.

Since we have come full circle, and I am bushed from my day, this will be the end of my post. Have a very Merry Christmas tomorrow. We will have a quiet day - after the morning chaos. I can't wait! Good night!

Super Quick

All is well. Lots to do for Christmas. My friend Susan had a baby whom she named Brady. He is super cute and squishy looking. It's nice to know life comes too, when there seems to be so much going these days. Of course it's all in my head-  the going that is.

Here's to a quiet night for us all. And lots of gratitude and blessings for life.

On The Cranky Side

The day started out great. I took Bennett to school, I went to the bank and reflexology. I even got to pick B up from school which I have not done for months. She didn't really notice, I thought she would be surprised, but mostly she just said let's go and we did.

Then I got the mail and in it was a lot of information about my pre-op appointment and Hope Lodge. Hope Lodge is the house sponsored by the American Cancer Society where cancer patients and their caregivers can stay when they need to. My surgeon's secretary arranged for Mary and Pat to have access to a room for the week I will be in the hospital. I will stay there the night before surgery with either Pat or Mary. We all have to decide what makes the most sense and what is best for Bennett who is not allow to come to Hope Lodge. They host bone marrow transplant folks, so there is a ban on kids and pets. I am not sure what about all this information made me so anxious and cranky, it's probably just the reality of it all. And I feel so good, so normal physically, better than I have in months. It is really hard to think that I am going to have to give it up. Not just for chemo, which I now realize is like being hungover all the time, but for surgery. Yikes. And I mean really yikes.

Pat reminded me that the recovery time is finite, that she and Mary will be here to help and that I am a fast healer. Bennett will be fine. But what about me? I have been so worried about how Bennett is going to miss me, that I forgot that I am going to miss her. And Pat. I am going to miss my ne'er do well dog and attention seeking kitties, and my cozy house. I've already spent two weeks in the hospital in 2010, I remember how hard it is to get any sleep, how loud everything is, how there is no place to walk but they want you to walk to build strength. Those walks are like walking through everyone's business while showing everyone your business.

I have to find a way to dread this less. I was going to say, I have to find a way to look forward to this. And now that I write that, it doesn't seem so weird, I am going to leave the hospital with far less cancer in my body than I have now. That's a great thing to look forward to. I will also stop having pain from the primary tumor - which is a low constant presence. That's pretty good. And maybe I will have a nice roommate. Who knows. Maybe I can start looking at the bright side tonight.

Pat reminded me that I never posted pictures of our stained glass awning. Here it is.

Two Weeks From Today

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

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

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

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

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

The waiting

Is the hardest part. That's what they say, and I can tell you it's flipping true. I am posting on my iPad, which is a pain, so this will be short.

Had a good day energy-wise, scared a lot of the time, worried about being scared, tried my darnedest not to scared or worried. I miss my old life so much. I miss the things I used to worry about. What were they? I am not sure I remember. I couldn't think of one thing to ask for Christmas. I don't really need anything and all I want is to live a long long healthy life.

Short Sunday

It was a quiet day around here. We had a nice visit from our very pregnant friend, Susan. She was glowing and it's nice to know there will be a new baby around soon. She made me a very handsome hat, see above. Boy, do I love babies. All this cancer stuff made me forget that. Pat and Liz wrangled an elliptical trainer into the house and we have a line on a treadmill. Pat insisted on tackling Walmart the Sunday before Christmas to get B a scooter. She is going to love it.

I mostly stayed on the couch. B is still getting over a cold and I wanted her to be a quiet as possible. You know that means lots of Ipad and a few rousing games of Hi Ho Cherri-o.

While on the couch, I mostly fretted and did more crossword puzzles and a little knitting. I am not quite right and I think it's because mortality is a bitch. I know that I can't just give my life over to fear, that if my life is going to be shorter than I'd expected, do I really want to sit around and worry about dying? And all the grief around that? No. But that seems to be what I am doing. I have just got to stop. I get moments of real clarity, of feeling connected to the world and life, but mostly I feel half shut down. And I know that is no way to live.

I have big plans for tomorrow. I am going to Trader Joe's then I will listen to my tapes and have a nap. I have not been grocery shopping for months. We are really trying to get ready for January. I got the sleeping stuff I needed and ordered two big bags of dog food. When will Holyoke get grocery delivery?I can't wait.

Next we are going to arrange the beds so there are plenty of places to sleep and agreed to heat the house at whatever temperature we need it to be - and not worry about the bill. My valiant sister Mary is coming to help for three weeks. I am so blessed to have such resources.

That reminds me, I went to church with Ruth this morning. It was good. St Paul's is such a sweet place, I heard someone say it was the little church that could. I believe that.

I am off for the night, I am going to try to work on the blue doggy hat that B has been asking for. I am pretty sure she is going to ask why it's not pink the moment she sees it. But that's okay, I think she will like the ears enough to live with the blue.

The Hard Poop

Yes, it's true. Last night I think I was in some sort of God induced calmness. Today, not as much. I haven't be suffering from the anxiety that I expect, but I have been a little out of sorts. Bennett is still a little sick and since she was out for so long yesterday, I thought it would be prudent to keep her indoors today. It was fun to just do puzzles, and I tried to teach her dominoes. She is so close to understanding taking turns and following the rules of the game. We played two successful hands then she wanted to build houses with the dominoes. Fine with me.

Another reason I might be out of sorts, I discovered the NYTimes crossword puzzle app for my Ipad. I never considered myself a crosswords puzzle doer. I am hooked. I have done about six puzzles since last night, and would have done more but the battery needed recharging. I will admit I have been choosing Monday puzzles- the easiest, but for me to complete a puzzle when I've never been able to finish even one in People magazine, it feels pretty good. And it keeps me from thinking about being cut open and death.

I have to say, also, that I have not had time to listen to my visualization tapes for two days. I think this is not good for me. I will listen tonight before bed. I will fall asleep to them, but that's okay, it still going into my brain.

We are looking to borrow a treadmill for Jan and Feb - to aid in my recovery. Anyone have one that is collecting dust that we can use?

I am signing off now, I just don't have it in me to get into how I am feeling. Resigned and a little crappy - need I say more?

The Straight Poop

Today was the day that I met with the surgeon. We'll call him Dr.W. He is very charismatic and confident. I like him a lot and trust that he is going to do a good job. Here is what he is going to do. He is going to remove 1/2 to 1/3 of my colon - called a Right Hemi Colonectomy. He is also going to get out as much of the cancer as he can. There's a lot in there, so he is going to get what he can (let's pray that he can get it all) without putting my overall health at risk. The idea is if they leave some cancer in there, it will be gotten or controlled by the new chemo drugs.

One thing to know - they are not doing anything to my liver. My liver is still too full of tumors to operate on, so they are banking on the new chemo drugs to clean it up.

It's strange that I thought surgery was the answer, but two things have been revealed, 1. they are pretty sure they are not going to be able to cure this cancer.  2. they are relying on chemo to do the big work. I thought it would be the surgery that would do the big work. But they think the chemo is going to do the big work.

The primary goal of this surgery is to take out the primary site - big tumor blocking my colon and lymph nodes and other junk around it. They will give me a epidural catheter to control the pain. That way the pain can be controlled from whichever vertebra they use and down, and my brain won't have to be bathed in pain meds for the week. Dr. W. says they are brilliant when they work properly. If it doesn't work, it will be some sort of morphine drip for me. They expect I will be in the hospital for 5-7 days - more likely 7. I can only get out after the pain is controlled, I am eating and tooting. He did not mention pooping, but I imagine they are going to want to make sure everything is in order.

That is what I found out. I also asked if this cancer was going to kill me. Dr. W's answer was yes, very likely. That if I was 70, his answer would be different, but because I am so young, unless I get into some sort of accident, it's the cancer that will likely get me. He reminded me of some of his cases where he was wrong, people living a long time, cancers being cured that they were sure wouldn't be. He also reminded me there is so much cancer research going on right now that something new might come along in the next year. They just don't know.

How can I be so calm? I am not sure. I am pretty sure it's because I didn't really find out anything I didn't know and there is no way to know that it is absolutely true that this cancer will get me. I am just going to go on the assumption that all will be well.

By the way, my recovery time is 6 weeks or so, so I expect lots of visiting from you all.

Feeling Good with Trepidation

That's the only way I can describe how I feel. I feel very good, almost normal but with the understanding that I will not have this luxury for very long. I am truly trying to savor every minute, and I am doing okay at that. But what did I just do? I went onto Wikipedia and read all about this drug Avastin that Dr. B is hot to use on me. Well, now I am not feeling normal, I am freaked out. This is a drug used to prolong life, not cure cancer. Okay, I have to remind myself that it is only one drug that we will be using, the other drugs are for curing, I suppose. Dr. B did say at our last meeting the his goal was not a cure but control. I thought that was shooting too low. Now I am sweating and my hands are tingling from fear.

I actually thought that if I read information about Avastin, I would feel better, reassured. What was I thinking? I never feel better or reassured by the Internet. I don't go on the Internet just for this very reason. I was feeling great and now I feel like I am going to die tomorrow and there is no hope. Nancy, the acupuncturist, says that I need to welcome my fear, take a step back from it and examine it. Was I afraid when I first started posting? No, I felt great. What did I do next? Went online and found out information that really has nothing to do with me. It's all just studies and stats that may or may not be relevant to me.

And I ask myself, what is wrong with a prolonged life? Isn't that what all these treatments are about?

Maybe I should just start over. I had a good day, I listened to my visualization tape and had an amazing session with Magic Maryann. I made sure she made house calls so she can come over while I am recuperating. I made calls to folks I haven't talked to in a while and generally took advantage of the good feelings.

Okay, I took some time off from this post to think. I did what Nancy taught me which is to identify the fear - the drugs would not work. Did I know this to be true. No. What is the turnaround? The drugs will work. This is what I believed until I read that stupid Wikipedia entry. I am no longer sweating and tingling. But I feel the echo of the fear.

Getting Ready

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

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

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

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

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

Three Hours on the Ipad

That is what I did with B today and now I have an eye-ache. B is sick so when I got home form acupuncture I thought we would take a nap together. Ha! We took the Ipad for a spin and didn't stop. B is completely obsessed with puzzles. I think we have every free kid's puzzle available on our Ipad. I even bought a few. The ones that cost are a lot better - I have to say. I even broke down and got her a dress your princess paper doll-like game. She was enthralled for an hour. I was shocked at how slutty the clothes were.

Acupuncture was amazing today. The session lasts an hour, the actual acupuncture only takes about half that time. The rest is talking. I feel like I get so much out of that time, like maybe she should be my therapist. She works through this belief system based on The Work. I don't know much about it, but it certainly makes me feel better. She helped me understand that if I believe I will be in pain after the surgery, then I will. If I take the next three weeks and remember that I am a fast healer, and have a high tolerance for pain (both of these things are true), then I don't have to be in so much pain. That I will be in the pain I am in, and that it that. It was very freeing. What happened to me, is that I have been listening to other people's stories about the pain they were in and making it mine. It's not mine. Mine has not happened yet and you will know what it's like in the most minute detail. I will see how I feel Jan 3rd or 4th to see how I can get a post up.

In case you are wondering, the needles went into my head, feet, ears and hands today. I also realized that my ears don't blow anymore and the neuropathy I was starting to feel in three of my left hand fingers is gone. These are things we've been working on. I don't know if it's that I am getting a break from chemo or if it's the acupuncture, I don't care. It's just so much better.

The Cancer Connection is closed the week between Christmas and New Year's, so I lined up Reiki and acupuncture on my own. I want to make sure to continue to get all the help I can until my surgery, then I have lined everyone up to make house calls. I also got some homeopathic arnica to help me heal. I will tell my surgeon of course, but I am psyched to have all the help I can get.

I have a touch of a headache so I am going to get to bed early. Good night everyone. Sweet dreams.

Why Didn't I Post?

I don't know. I could feel the difference in my mood today and I attribute part of it to not posting last night. The rest I give to the dreary weather and my general Monday anxiety. We had a home day, which we both sorely needed. Not that I get out that much, but it was nice not to go anywhere and have B stay in her PJs all day long. She had a slight fever, so it was good to be home so I could coax her into taking her tylenol and drinking tons of fluids.

Today she added containers of Playdoh to the Christmas tree. Not under, but on the tree. I think this tree is just going to end up with lots of weird decorations. We have two bags of presents under the tree. Both bags were left at the front door with no way to tell who they are from. So, if it was one of you guys, thanks. Really, it's nice to be the recipients of such generosity. I just truly wish I knew who to thank.

I am incredibly anxious about the surgery today. I had to take extra Atavan. As an aside, I had an interesting conversation with my acupuncturist about Atavan. She told me of this woman she admired who had cancer, terrible anxiety and a lot of clarity about how important it was to take her anti-anxiety meds. She was just really accepting of the fact that they made her life a whole lot easier and better and she didn't have any qualms about taking them. I have been trying to channel that kind of ease around my meds. So today when my now 5am half an Atavan stopped working around 2, I took another half and my life was so much better.

Did I write about the 5am Atavan? I don't think so. My therapist told me that the key to anxiety, pain and nausea is to stay ahead of them. If you get too far into any one of them, it's hard for the meds to catch up. So she suggested that since I wake at around 5 every morning anyway, to not wait until I felt the anxiety, but to just take half an Atavan under my tongue and go back to bed. It works like a charm. Now I can actually go back to sleep and wake up not anxious. I think my therapist knows a lot of tricks about drugs. I like that.

I think I will be less anxious about the surgery after my appointment with the surgeon on Friday. I keep reminding myself that these guys are experts at pain management. My mom, who had her hips replaced, said that she felt very well taken care of pain-wise. She also mentioned that the pre-op is handled very well, very gently. I hope that will be true at UMASS too.

I have to go now. All of this is making me want to cry. Crying without eyelashes is very messy. You wouldn't believe how big tears really are until they are no longer filtered through lashes. I hope you never have to find this out.

No Post

I called my mom instead of posting. No worries, please. I will post tomorrow- so keep looking. I promise is will be good.

Post 111

This is my 111th post. I can't believe it. I think 110 posts ago, I thought I would be dead by now. Cancer has such a bad reputation, that it's hard not to think you are going to drop dead at any moment. I supposed that might be true if you had a bad heart or something, but my guess is if I am going to die, they will let me know a few weeks or months ahead of time.

My God how did I get onto that subject. I have had a worrying day. Not for you to worry about, but I have been worrying. What about? Mostly silly things like is my head going to be cold while I am in the hospital? My hair looks so bad, I am worried about not being in control of having a hat on all the time. This strange vanity is also a bit worrying, now that I think about it. I just have to give it all up to God. That's the answer, and I know it. I have to give up the parts that I can't control - like how Pat is going to manage. She totally will, but I hate to think of all she is going to have to do. I am worried that Bennett is going to accidentally hurt me while I am healing. I am afraid that Pat will get snowed in while visiting me at the hospital, I am worried that I am going to have to spend so many hours alone at the hospital, I am worried that they will open me up and find something they didn't know about and just have to sew me back up. This is just the tip of the worry-berg.

It's funny to go from one day of feeling groovy, to the next of not feeling that groovy at all. I feel like saying that fear is a fickle friend, but I am not sure that makes any sense. I guess it means that today fear was a visiting, and yesterday he must have been at someone else's house.

On the brighter side. We got our tree today. It's little- only just over 5 ft. Bennett was more interested in playing on the playground where we got the tree than getting the tree, but once we got the box of ornaments out, she was totally into it. She hung most of the ornaments- luckily most of them are plastic.

No one else is up right now, so here I am with the tree. Take a moment to notice just by my right (to you) ear the sock hanging on the tree. When we ran out of ornaments, B decided she would start hanging the laundry on the tree. We stopped her at two socks.

B also found two of her presents today and does not believe me that Santa took all of the Amazon.com boxes with him to wrap the presents and will bring them back on Christmas morning. Boy, it is hard to wait for Christmas when the concept of time is so abstract.

That's all for today. I am going to go with my intuition and not ask the surgeon to say affirmations. I am going to believe with all my heart that God and you all will be watching over me that day and the he (the surgeon) needs to do his job unhindered.  It just seems like the experts should be doing what they are supposed to be doing. You guys praying and sending light, the surgeon operating. Right? Right.

Feeling Groovy

Today was a good day. Yes, I have to say, a very good day. I almost feel like myself. I have been eating more things - like cookies, and have not had a bad reaction to them. The only thing is my teeth are not used to anything crunchy, so they are a little sore. I know that sounds weird to me too.  Tonight Pat made me little polenta pizzas. They were delicious and I am going to have pumpkin custard (a mainstay) for dessert. I have cut back to only two Ensures a day- I still want to maintain my/gain weight. They may taste terrible, but those 350 calories go down in about six gulps.

We went to Barnes and Noble to hang out and I splurged on the original Grinch movie. We spent the afternoon watching the Grinch, I also finished another hat using up all the yarns from the other caps I've recently made. This is from yarn that Mary sent me (really she sent a gift certificate, but I think of it as from Mary). I have very little hair left and am wearing caps all the time, for looks and warmth. I like the kind of cap that fit snugly and this pattern is pretty perfect. Next I am going to make a blue doggy hat Bennett has been asking for. I hope she really wants it, as her pink kitty hat met its demise in the washing machine.

It's a little odd to be feeling this good. It's almost hard to enjoy it knowing what's coming, but I have to take advantage because they are going to change up the chemo drugs and they might not be as nice to me. I didn't even have a nap today.

Oh, I met with the woman from Prepare for Surgery, Heal Faster. I am not really sure about it. It's a program of visualization (I can get behind that), but I am supposed to ask the surgeon and anesthesiologist to say affirmations to me while I am under. It just seems like too much to ask. I just want them to pay attention to my guts and getting the cancer out of there. It seems reasonable to ask the anesthesiologist to say nice things to me while putting me under and maybe even holding my hand, but I just don't know. I am also supposed to listen to the visualization tape on repeat the entire surgery. What do you think? I will ask the surgeon what the atmosphere in the OR is like. It's a teaching hospital so God knows what they will be talking about, so it might be a good idea not to hear what's going on. I just don't know. I don't even know how to put my Ipod on repeat.

Time to relax and not get too crazy about the surgery. I just want to normal night to go with my normalish day.

Therapy, Therapy, Therapy

Today I decided that I don't find therapy to be that satisfying. I think it's because I find the other therapies so soul satisfying, that a non-touch, all-talk therapy session just seems like no relief at all. Don't get me wrong, I am pleased to have someone to talk to that knows about cancer and can give me some good tips, but what I need is relief. Stress, anxiety, whatever is all over my body and having acupuncture and Reiki and reflexology help so much with my mind and my body.

I had therapy today and actually left feeling more anxious than when I arrived. I told her and she suggested I choose to leave the anxiety with her in her office. I thought that seemed like a great idea. Maybe next time I will ask her if I can leave the cancer there as well.

I am getting ready to get ready for surgery. I am going to order some more of the ugly but extremely comfortable sleep hats. I have been reading a book on what to ask the surgeon and anesthesiologist. I am working out with house calls for after the surgery for Reiki, etc. I like to be prepared.

I am trying to remain as relaxed as possible. The mediation recordings really help. Hanging with Pat and Bennett help too. The one really great thing my therapist told me today was we all need to touch each other more. That physical contact can greatly relieve anxiety. I totally agree, but have to point out the irony that her chair is no less than 10 feet from the couch where I sit. And why are therapist couches always so low and cheap? I have never in all my many years of therapy had a good place to sit.

I will leave it at that. Tomorrow meeting with the Prepare for Surgery person. I will let you know how it goes. I took a look at the book and it's pretty interesting. As always, I will keep you posted.

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.

Not Much To Say

That's the truth. It took forever for Bennett to fall asleep. I am feeling a little antsy, and my mind is a little blank. The good news is I feel pretty good and if this continues I might feel normal by the time the surgery happens. I have an appointment with the surgeon on Friday, December 17 with a feeling the surgery will not be until the first week in January. I guess that will have to do. I guess they don't do much surgery between Christmas and New Year's. Even surgeons need a holiday break, I guess.

I was diagnosed in the summer. So many things were closed, doctors on vacation etc, that it was frustrating and scary. So it seems fitting that my surgery would fall at a time - almost 6 months later - when things are closed and doctors are on vacation.  It seems my fate to wait until everyone is rested and relaxed. That is me trying to look at the silver lining.

Other than that, all is okay. I will keep dreaming of getting through the surgery to the other side where there will be a BLT waiting for me. Not BLT soup, which I would be more than happy to try, but a real BLT. Have one for me, will you?

I Want a Sandwich

A nice crusty panini with bacon, a fat slice of tomato and some mayo. I can have some mayo, and I had some bacon in the last of the really good sweet potato soup Sandy brought over. I also want a bowl full of spicy shrimp, pad thai, pho, or just a humble burrito. Soon, I hope. I hope with this surgery that I will be able to eat, just eat. I know it depends on how much of my colon they take - that can mean serious digestive issues. This is not the time to worry, just to dream. Right now I am dreaming of a steaming bowl of red curry coconut with sticky rice and a nice spring roll on the side.

Sleepy Sunday

Yep, another day with the vast majority of time in bed. I made it to church, came home and played with Bennett until Aunt Ruth came over. Then I passed out - not literally, but went to bed and slept for an hour and a half. I qualified the passing out part, because I have been very light-headed all day. Several times today I had to quickly sit back down. Not a great feeling.

Interestingly, you'd think I'd be happier with the good news and all. But I have quickly moved on to worrying about the surgery. Actually the after part, the pain, how to manage Bennett not elbowing me in the gut like she does a million times as day. And who is going to help Pat? I feel such a deep sense of guilt about it all, I can't make it go away. Keeping Pat from work, not being able to carry the laundry. Mostly I wonder what I am good for these days. Pat keeps reminding me that my job is to go to therapies and heal, and I know that's true, it's just hard for me. As you know.

You know it's all really about trying to figure out who I am as a person with cancer. I didn't think it would change me quite as much as it has. I have to say that I am pretty sure it has not brought out the best in me. At least not yet, I hope that will happen soon. It's hard to feel like my old self when I feel so crappy and the world seems so foreign.  I am an expert at so many things that I can't do anymore, and a novice at the things I am supposed to do.

I will just keep praying for a nice clear pink liver and a golden clean abdomen so I can get back to those things. The praying is good in so many ways, and thanks for yours. I appreciate them so much.

Change of Plans

Just a super quick post tonight. Stayed in bed most of the day and only got out of bed to go to Barnes and Noble to watch B perform with her school. We may have been the only parents there without a camera. Luckily Aunt Julie saved the day and took this picture of B with Curious G.

They look a lot alike - curious...

The change of plan is the surgery is not until after Christmas. Still don't know the date, but Dr B called last night to say there was a misunderstanding between him and the surgeon about when my last chemo was. We have to wait a little longer until my WBC recover and the chemo is not so fresh. I sort of feel like I am going to get a nice break- then I remember that surgery part.

The timing change is good in some ways and bad in others. I like to get things done, so was happy to think it might happen in the next week or two. It gives us more time to prepare and arrange for help. We are going to be calling on all of you - 4-6 weeks recovery is a long time. Postponing also gives me more time to worry about what it's going to be like.

I have had a good experience at that hospital, so I am happy about that. I am worried about the pain, getting snowed in, all kinds of things.

I am not going to get into it, it's just the game fear is playing with me. Screw you, fear, get out.

Tonight an early night to bed and hopefully deep deep sleep. That is what I need.

Today was the Day

Thank God we got some good news today. No new cancer, some tumors shrunk and everything else stayed the same. The next step is surgery. And soon. They want to do it before Christmas. I will know more on Monday when I call to schedule a consultation with the surgeon.  They want to move quickly because if it is not done within the next few weeks, I will have to have another chemo blast and that will delay the surgery and on and on. So Merry Christmas to me.

This is why the surgery is a good thing. It will take out the primary tumor, the parts of my colon that perforated, the cancerous lymph nodes and peritoneum. The idea is to get all of this out, especially the part of my colon that perforated, so they can use more aggressive drugs on my liver. This surgery will not touch the liver. Another good thing is I might be able to eat more normally, and will be in less pain (after the big giant pain of surgery).

Dr B. is hot to use a drug called Avastin. It is supposed to be a super tumor shrinker. So fast, in fact, that colons that have perforated will rip if it used. That is why they have to get that section of colon out of there. Chemo will start again as soon as 6 weeks after surgery- depending on how quickly I heal. That seems a little mean, but I am going to believe this is the best course of action to get this unwelcome crap out of my body.

I am not afraid of surgery. I am afraid of the pain, how Pat and Bennett will cope, what chemo might be like after surgery but these are all things that can wait. For tonight I am just going to revel in the fact that I have less cancer in me than I did four months ago and that makes me pretty happy. Oh, it was almost hard to use that word. It's been a long time since I've had any good news about this process, and now I have some. Yay.

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.

Chemo Today

Well, the Neulasta did its job - my WBC were 4700. That is 4300 more than the first time I did this dose without Neulasta. I was pretty out of it then. I feel completely wiped out tonight so only  a short post.

Chemo went fine, I have my pump. Ruth drove me and Liz took care of Bennett. Sandy brought soup for me and lollies for Bennett. The sunroof on the new car leaked all over Pat while she was driving home from work and that will need to get fixed ASAP.

I am going to bed. Goodnight and thanks for all the good wishes. They are working.