Oops

Well, we are still here in England. We were supposed to leave today. But I actually booked our flights home for January 31, instead of December 31. Luckily the airline was really nice about it and fixed us up with new tickets the next day. Same flights and everything. I love British Airways. I thought it would be much harder to find flights backs, but I guess no one travels on the first of the year.

Poor Pat. She spent all day yesterday going to the far reaches of every room to find thing Bennett has been leaving everywhere and doing laundry. Bennett basically unpacked us and tonight we have to do it all over again (though I have to say I had nothing to do with the first attempt).

I had a really good conversation with Mary. I decided a couple of things. I am not interested in Phase One trials. I will talk to the guy, but I am pretty sure I am going to pass. I know I should do it for the good of the world of science, but I just can't take the chance that I am going to be too sick to enjoy the rest of my life. I am still open to the Phase 3 - I just have to get my insurance taken care of.

I also decided that I have to see Dr B one more time to take care of the pain that I am in, and I have to get my eyes examined to help with the daily headaches. So I have a lot to do when I get back. Mostly to start taking care of the little things that are dragging me down. If I don't have a headache every day, and my belly is not hurting me everyday, than I should have more energy and be more engaged.

Home tomorrow - and this time I mean it. Our next trip will be to St Lucia in Feb. Can't wait for the helicopter ride.

The Castle at Belsay

Today we were supposed to get an early start, but B came in and said It is 11 A M, and then ran away. Again, I wasn't the only one asleep. So a morning of relxing and an afternoon trip to a fancy house and castle at Belsay. It was the gardens that were spectacular and it was a nice walk. I am getting up my walking mojo again and I like it.

I had a rough night last night, the sneaky thoughts were really ganging up on me. It must be becuase tomorrow is our lst day here and it is back to real life and real life decisions. Shoot. I was hoping to put that off a little while longer.

We all went out to a meal at a pub called the Angel. It was good and fun and there was plenty to drink. I am tired from the wind, the walk and the hard cider.

More tomorrow, I am sure.

The Day in Newcastle

Another day sleeping in until 11, again I thought it was around 9. I am not acclimating to the time change at all. Oh well, at this point it might be a little late.

Today we all bundled into the car and went to the actual New Castle. It's right in the middle of Newcastle and it was beautiful. We all walked up to the top of the tower and looked out over the city. It was a beautiful but windy day. I was pretty proud of myself for walking all the way up the stairs to the top. I had to rest in the middle, but that's okay.

After we went the castle, we went to see the four winners of the Turner Prize. That is Britain's most prestigious award for artists under 50. The show was infuriating in it's lack of craft. I didn't expect much, really, but I didn't expect that level of crappiness. I am still glad I went. The museum is housed in an old grain mill and is very beautiful. Bennett had a blast with Anna and her BFF Christina. All in all it was a nice time.

Mary is making dinner, Pat is reading a book, Bennett is snuggling with Anna in the living room and I am free to do as I please. I actually got hungry today. A rare event when I am around Mary, who is a tremendous cook.  Tomorrow we have a whole day planned. I am not sure what's happening, but all are required to attend. I'll let you know.

Corbridge and Beyond

Today I might be getting back onto schedule. I woke up at 11 - which is earlier than the last few days. And I finally felt rested. What a relief. Mary and I dropped Bennett, Anna and Pat off at an ice skating rink and proceeded to go shopping. We went to a super sweet town called Corbridge. We had cake and tea, looked in the shop that sold all kinds of cookware, a gallery, and generally admired the stone houses and short doors.

It was really nice, then we went to the grocery store. And now we are home and I am pooped. All the walking I've been doing is good for me and exhausting, and I hope I will keep it up when I get home.

I have an appointment with the doc who is in charge of all the Phase One trails as DF on 1/4. The stress of that appointment has been sneaking into my consciousness today. I have a real aversion to the idea of being involved in a Phase One trail. I will know so much more once I talk to the guy, I just have to put it in the realm of the future and, therefore, none of my business. I did tell Mary that I felt like I did my time and that I want to be treated with drugs that are understood and will not make me wildly sick. Pat's theory is they want for the Phase One trial because I am so healthy and have had fairly mild reactions to the other chemo drugs (you'd never know with all the belly-aching I've done).

Enough about that. I have a lovely dinner to come, I am going to put on some cozy pants and hunker down for an evening of good conversation and curry.

Happy Boxing Day

We are taking a short break from the feasting to watch Harry Potter (Bennett), gather our Christmas present that have spread all over Mary's house (Pat) and blog (Me). It was been an amazing couple of days. Lots of great presents - probably the most popular being the box of princess dresses that Mary got Bennett (they were from a colleague). The Snow White dress being the most popular. And she looks damn cute in it.

We've been getting out every day to have a walk. I am in terrible shape, but better to move than not. I have been feeling very tumor-y. By that I mean, my liver has been hurting me and it feels swollen and the tumor in the middle of my belly has been really hurting. It is a little bit strange to be between doctors, so I am not sure who to talk about it with. I have another appointment with Dana Farber on 1/4, so maybe I'll bring it up then. It also could be three days of drinking a ton of champagne. That might also have done my liver in. Yesterday I decided it was water only from now on. I think I missed some good wines at the feast we went to yesterday.

Bennett had a classic post- Christmas blow out tantrum last night. It was a doosy. At the end she was able to tell us that she missed Holyoke and all the people who live there that she loves, and all her Aunties, dog and cat. I told her about what homesickness is and she said, yes, I have homesick.

Me too. Though I am so happy to be here with all the activity, beauty and fun and great food.

Merry Christmas Eve

It's been a lovely day so far. I slept until 1 in the afternoon by accident- Alex's room is like a time cave. There is no way to tell what time it is. No clock, no light, nothing. I thought it was about 10, at least I wasn't the last one up.

I went for a gorgeous walk with Mary. Pat went for a jog, Bennett stayed home and played with Cousin Anna. She told Mary that Santa will deliver her presents to her England house. \And when she gets home, she bets that Santa will have left some presents there too. She loves it here so much. I love to see her so happy, right now she is decorating cookies with the boys from next door and Cousin Anna.

Totally awesome so far. We got bumped to business class on the way here. We were very content in out sleeping pods. Boy are we going to have to readjust for the way home. More later.

Not So Fast

Well, my insurance company denied the approval and now will not pay for the appointments. I know! It's like something from an article in a magazine on insurance baddies. Those m-er f-ers said they made a mistake and the approval was for a different patient and that they will not pay. I don't know any other way to put it. I cannot wait to apply to get a different insurance company. The guy I spoke with for more than a half an hour was nice but totally powerless to do anything. It was just about one of the most frustrating half an hours in my life. So I am going to try to work with Dana Farber to appeal, but, as we know, the appeals process takes 180 days. Let's hope I am still here.

That last sentence seems a little stark to me. But it's true - and really true for everyone since we don't ever know what might take us to the other side.

On a lighter note, I feel great. Pat and I got a lot of chores done today. We just had a great feast with Aunt Julie and, I think, Aunt Liz will appear later. It feels good to get lots done, cross things off the list, and just plain make our lives nicer and easier. This is the first year where we have our presents in order for people like Bennett's teachers and our fab cleaning lady. It feel nice to appreciate the people who work so hard for us.

I don't have much else to post. It will all work out. Both Pat and I have acupuncture tomorrow and that will be good for us.

A Sh*tload of Information

I am exhausted. Not the kind of exhausted I used to be coming back from chemo, but the kind of tired you get when a huge weight has been removed. We got a ton of info today. I loved the docs and the people who work with them. The place is efficient and they make it a priority to make everyone feel like a human being. Very cool. I am not going to mention that parking was $18 and my butt was sore from the trip.

There are no clinical trials open at this time for me. But there is one phase-three trial that I am going to be on the list for that starts in January. That is mere weeks away, so I am not worried. Dr. J-Mc told me to call when we get back from England and make sure I am on the list and all. She also making an appointment for me with the doc who is in charge of the phase-one trials. Those are the trials that use drugs that they have only ever used on animals or in test tubes. I am not so psyched about that, but you never know. I am truly trying to use my heart and mind to make decisions that honor quality if life. I feel so much better off chemo - happier and my body feels better.

Oh, I forgot to tell you all, my insurance company changed their minds! I am covered for three appointments - just long enough to change insurance companies.

Not all the news was good. The cancer is now in my uterus and my abdominal lymph nodes. So now it is in my bowels, liver, lungs, abdomen, lymph nodes and uterus. That is quite a list. I didn't get all freaked out because at this point it's sort of like, where is the cancer now? There are a lot places it is not, and that's is where I try keep my mind. Not my bones, not my brain, not my pancreas, bladder or kidneys. You get the idea.

I gave some blood - through my wrist. I have super crappy veins and they wouldn't use the port because it was inserted at a different institution. They took the blood because I volunteered to be part of a study for GI cancers. It will not affect my care, it's all for science. I thought it would be a nice thing to do and I know that my Dad, who died from cancer, never got to be in a study and know he wanted to. So I am trying to keep his spirit close to me.

So now it's just a waiting game. I won't know anything until January. That gives me so much freedom. I felt elated on the way home - like I was given a reprieve. It's not really true, because I still have some big freaking cancer, but at least I can have some fun while I feel good and am chemo free.

Thanks for the good vibes. They were well used.

What Will Tomorrow Bring?

Nancy would say it's none of my business. That it is the future, and it's only God's business and we only have this one moment. And this one moment. And so on. It's a much more peaceful way to live. I have been trying to do that all day, but I can tell by the way I stink that I am stressed out. I just hope I can keep the stink away during my two hour appointment tomorrow.

I did virtually nothing today. Bennett and I had a PJ and TV day. We watched a lot of Princess Tutu and read books. She is a wonderful distraction and so much fun that I can honestly say that I enjoyed myself. There's nothing wrong with that!

I will have much more to report tomorrow. I hope. Any and all good vibes you can spare would be appreciated.

The Great Christmas Tree Chase

Here's me and Pat after a day of merriment. Pooped out and happy. 

First I got to sleep in until 10 - which I really needed. Then we left about noon to get a tree. We were sure we would able to find one in Easthampton. They were sold out - well, really they had three very sad trees left. So we decided to follow a promising sign that said $10 trees. They were about 2 ft high and looked like they might have been stolen from the nearby Mt. Tom. So we were sure that if we went to a local orchard they would have trees. We pulled up, no tree. I went in to buy some apples anyway and asked if they knew of a tree farm. The guy said I live around the corner and I am selling trees. They are not perfect. I said we are not perfect people, so we would like to see your trees. He said I will meet you at my place. So we drove the two blocks and followed him around his property until P&B found just the right tree. We had $31 and the tree was $30. It was kismet. 

We brought Spingey home and decorated her. Bennett did a great job decorating the lower branches (this is wear the vast majority of ornaments ended up) and was super excited to see some ornaments that she made last year and the year before. 

Then we went to Aunt Ruth and Aunt Theo's house to make merry. And that is just what we did. Theo created a feast, Ruth tried to get Bennett interested in making sugar plums - she really liked rolling them in sugar and gold hearts, then we decorated the tree and, again, Bennett was excellent at decorated the bottom branch. We had so much fun. It was just the perfect day of holiday spirit. 

Now we are home, with our feet up and the smell the tree. Thank God for days like this.

A Smidgen of Hope

What a day. I am depleted. I talked to everyone except the person who could do anything about my insurance. There is a ray of hope because there are so many people who are fighting for me. I felt so bereft and alone yesterday, but no so much today.

That is not to say that I have been feeling like my normal self. I mostly feel like I am at the end of my tether. I have been ultra patient with Bennett, because I feel like I am on the verge of losing my temper. I spent the afternoon knitting to keep myself occupied. Pat and I went Christmas shopping today. We are very efficient and only had to go to three places.

Tomorrow we get a tree and hang around with Aunties in the afternoon. We had real live carolers at our house tonight. It was a real treat. I am going to have a bowl of granola,  watch something on TV and go to bed. Farewell to this day, lived but not savored. I will try harder tomorrow.

No Shopping Today

Today was a pretty shitty day. I got a call from the insurance company telling me that they denied my request for them to cover the out-of-network clinical trail. Their only response was that the same care was available in network. They could not tell who or where, but they were sure I didn't need to go out of network. Their appeal process is 180 days. Criminal.

Needless to say I have been on the phone all day. I've left a million messages and figured out how to change my insurance, promised DF that we would pay out of pocket for the appointment I have on Monday. I have to pay that day - before the exam. Of all the groups of people I have talked to, DF have been the nicest and most helpful. I just got a call back and it's almost 6:30 pm. She gave me three new phone numbers to try tomorrow. All in the clinical trail department.  Pat reminded me that sometimes our lives are thrown up into what feels like disarray, but we always get through it. That was a good thing to hear. I just have to figure out what the best way to maneuver this situation is. I will keep you all posted.

All of this crap happened before noon. When I got into the kitchen to make some lunch, I just took myself to bed instead. I turned on the electric bed warmer and stayed in bed the rest of the day until I had to pick up Bennett.

On the way home from picking up B, I called my mom. I just needed my mother. She was super generous and encouraging. I was bawling. Giving me advice and tut-tutting when I needed it. She is a good mother and I am so glad I have her.

That's all I can do for tonight. Please give the Universe a shout out for me and insurance and patience.

I'm Radioactive

Okay, this is how a PET scan works, or how it seems to work from my point of view. The 36 hours before that scan you are not supposed to run or walk anywhere and take it was easy as possible. This is so your muscles are all at the same point of tiredness? I don't really know, what I do know is it makes it so the stuff they inject is evenly absorbed into my muscles. So I took it easy yesterday, as you know, and didn't do anything more strenuous that going to acupuncture today, so I think I was good. I got there and they didn't make me wait too long.

Another thing that is important to know is the PET scanner is in the back of a giant truck. Three hospitals use it, so they just drive it from place to place as needed. So there is this giant truck parked in a giant (and very clean and well appointed) garage. So they call me to the truck and put me in this tiny room with one chair and a lot of metal. They checked my blood sugar to make sure it wasn't over 180 (I don't know why they do this), and mine was 70. Then they opened a metal box, took some tongs to remove the syringe from the metal box and took the filled syringe behind a very thick wall of glass, where they then popped the syringe into a thick metal casing. The metal casing is to protect the staff from the radioactive material in the shot.

Then the shot goes into my wrist because they couldn't find a vein in my arm. It doesn't feel like anything so bad as radiation, but I am not allowed to hold Bennett until tomorrow. She has come up to pet me few times, and it's heartbreaking to not be able to be with her. I am not allowed to be around her because she is still developing and the radiation might effect her development. How freaking scary is that?

If that's not enough, after the shot I had to stay still for an hour so the stuff could adsorb into my muscles evenly - I wasn't even allowed to talk so the stuff would not pool into my jaw area. I quietly read a People magazine and closed my eyes for a few minutes. Then they took me into a room with a giant tube in it. That's were I spent the next 25 minutes. Last time I was so claustrophobic that I was crying, this time I fell asleep. I had a bet with myself - how relaxed could I be while in the tube?

So now I am home and have a headache and a little nauseous. I am tired and want to go to bed but Bennett needs attending (by Pat) in our bedroom. I will wait a little while and then crash out.

Nothing on for tomorrow except some Christmas shopping. That seems good.

Happy Cancer Christmas

Oh, I am feeling very cynical about now. I have been having the hardest time getting into Christmas. I don't want or need anything, and it sort of seems dumb to get anything like clothes because I don't know how long I will be here. And I really have enough clothes. Though some people might be getting sick of all my orange shirts (me included). We got Pat scaffolding for Christmas and it has been in use for at least a few weeks. I think my big gift will be my $700 consult with the docs at DF. No that does not include labs or scans. I happen to know that the PET scan I am having tomorrow costs the insurance company more that $5k. Please let the out-of-network referral work for my consult.

I had to call back my PCP because while I was falling asleep last night I realized the she was writing a referral so I could see Dr. B NOT a referral for me to go to DF and see Dr. J-Mc. Dumb, dumb, dumb, and I couldn't sleep for worrying about it last night. So I called her this morning and she just laughed at her mistake and said she would fix it. I didn't really trust her to, so I called the referral department later in the day and they did exactly what I asked and what the folks at DF told me to do.

So while all this was going on, I got my teeth cleaned, and that is all I really did today. Like I said we are all really tired from being super stressed. I hope it goes away soon. Tomorrow is acupuncture and the PET scan. That seems like enough. I will tell you all about how a PET scan works tomorrow. It's pretty intense.

Posting with More Gratitude

A little more. Not a lot, but I am getting there. I had a very nice day and took care of some scary business - calls to Dr B, calls about scans, I got a dentist's appt for tomorrow for my first teeth cleaning in over a year. I still have other calls to make tomorrow, but I think getting those things done helped. I also have my PET scan this Wednesday - I thought it was going to be in Jan. So, luckily Ruth could rearrange her schedule and keep up her scan-accompanying record.

My primary care physician called today. The one who missed the man's hand sized tumor in my abdomen at my check up 2 weeks before my colon perforated for the first time. She wanted to find out how I was doing. I said fine and got off the phone as fast I could. She asked how my son was doing. I didn't even correct her - I just don't have the willingness to do anything for her. I have been trying to forgive her, but it's hard. Super hard. So I hung up and called her evil devil's spawn. If Bennett wasn't around, it would have been something far more descriptive.

I had a great afternoon with Pat and Bennett. Bennett and I just spent a long time on the couch looking at funny things on the computer and cracking up. That is the most wonderful way for me to spend my moments- laughing with B and looking up to see Pat happy that we are having fun. She's a rock.

A Bone to Pick

I have a bone to pick with God. How can He give me such a good and sweet life, after so many years of struggling, then take it away? And what about Bennett? And what about Pat? And what about me? I don't want to die. That's it, plain and simple. I don't want to be in pain, I don't want to die and I don't want to put all the people who love me through this terrible thing. Alas, there is nothing to do until we meet with the folks at Dana Farber. And maybe, just maybe, they will have a clinical trial for me. I am praying with all my might that they will.

Today I didn't get out of my jammies. Not a particularly good sign. I hung out with B until fab Aunties Ruth and Theo took B to the Nutcracker. I was in charge of getting her dressed. She looked so cute in her pink, cream and black satin party dress. And she would NOT let me take her picture. She is in a no picture stage. So, you'll just have to take it from me that she looked dreamy. Theo made a madly good pie to have with tea after the performance and we all were merry. Even me. I got to knit while B was gone and be a couch potato. I also decided that I need to get moving a little bit - that I am tired because I don't exercise enough and because I am scared to death.

Tonight we let B put in her own bubbles and her bath was full to the brim with bubbles. She had a blast putting on beards and mustaches and hats. Even tasting the bubbles, she said they tasted like fuzz. Good thing? I don't know.

So, to recap, it's a sweet and wonderful life with lots of love and tenderness. And right now it is mixed with blazing fear. I'll keep you posted on how it goes.

Post 410

That's a high number. Higher than I thought. And higher than I want it to be. I have been feeling very mortal today. And super grumpy. I slept in late and that didn't help. Going to see B's school's performance helped a little. It was nice to see all the little kids dressed up with bow ties and flowers in their hair. The best part was the little girl who needed to pee and held herself the whole time, the boy who picked his nose and the other little boy who crossed his arms and sort of gave the audience a dirty look the entire time. I am sure I am supposed to think the singing was the best part, but those glimpses into humanity really reminded me to lighten up a little.

We came home and all B wanted to do was hang out in her jammies. I was totally in on that with her. So we watched some Christmas movies, ate snacks and cuddled. She asked me to marry her again. It's hard to break the news to her that I am already married and that moms don't usually marry their kids. I appreciate the sentiment though - she said it would be a good thing because we are so alike and like each other so much. How sweet is that?

And how can that not get me out of my bad mood? I don't know. I think I am just having an angry day and part of that looks like wanting to just be alone on the top bunk, not looking at anyone. Because the story I have made up in my head is that everyone has more time to live than I do. And that is hard for me to take. Of course we don't really know how long we will live. But I have been having abdominal pain for the past three days, and it's a little harder to breathe than it used to be. Either the tumors are growing or I am getting too fat. I guess we will find out.

It's a pretty scary time for me. I am not going to pretend that it's not. The fear makes it hard to do things that I want to do. So then I feel bad for wasting my precious time. It's really shitty. That's all I can say.

An On Day

The fam last Christmas.

So I woke up this morning and decided I was not going to wallow like yesterday. I will allow for some wallowing, but it sure takes up a lot to time if you keep doing it. And time is not some I have in excess.

So I took B to school and came home to work on Mary's hat. I also made an appt for the car, which has been recalled for some part or another. I got bored knitting so I went to Osgood fabrics to get a little something for someone on my list. I had never been there, it was the size of a football field. The next time my sis-in-law comes to visit I am going to take her for sure. Now that I know what it has to offer.

Anyway, I picked up B from school. She is allowed to bring toys to school because she is such a good sharer. Today we packed up all the princesses and ponies, the map of their land and their castle. She walked into the classroom and all the kids were on her like bees to honey. When I picked her up, she had a little kingdom set up and Miss Erin said it was like that all day. Super cute.

Then we were lucky enough to have a play date with BFF Avy. It was great to see Sandy and catch up. It has been too long and it was great to talk about somethings other than cancer (though we did talk about it a little). I feel fine today. My body is very sore for some reason - like I've been working out. It may be that I am doing a little more than usual, but I don't know. It could be residual chemo working its way out. Whatever it is, it is very tiring.

Overall I would rate myself as OK today. Better than yesterday, for sure, but not super excellent. That is to achieved another day. Tomorrow, perhaps?

An Off Day

It didn't start well. I couldn't get out of bed, I cried a lot, poor Pat had to help me pull myself together. We made a list of things for me to do today and that's what I did. When I felt like I was going to break down again, I just looked at the list. I got all the mending done, changed the sheets, did some laundry - like that, not too taxing. I picked up B from school and took her to Nick's Nest. I got to talk to one of the guys who works there that I like a lot, Teddy. He is newly in love and that is wonderful to witness.

There is some good news here. Other than I am alive, have lots of love around me, and I am not in pain. Those are all good. I have an appointment at Dana Farber on the 19th. I have a PET scan on Jan 10th. I am very interested to meet the doctor that Dr B referred me to. I am also praying to God that DF takes my insurance. We shall see.

I am also so happy to be off chemo. I feel like the poison is leaving my system. I know it was good, saving my life, blah blah blah, but it feels good. I think the next thing I need is a massage to help the rest of it out.

Tomorrow the only thing I know I am doing is taking B to school. Pat is working her butt off on the basement - studding out new walls. What a stud. I keep you posted on what else happens.

No More 'Mo

At least for the time being. The Oxaliplatin stopped working and so I am off chemo until Dr B can find a clinical trial for me. That should be within the next couple of weeks and until then, I am free. That's what it feels like- that I am free from traveling to Worcester, free from feeling like crap for days on end, alas not free from cancer.

What happened is the obvious tumor in my belly (the one I can feel) got much smaller, while the tumors in my lungs stayed the same and the tumors in my liver grew considerably. Enough to let Dr. B know that the drugs were not effective. Who knew that cancer grows in each organ differently? I sure didn't. That is why I was so positive that it was working, because the tumor that I can feel is tiny (instead of the size of a golf ball-ish).

So we will work as hard as we can to get a clinical trial, and Dr B was uncharacteristically positive about my chances of succeeding in the trials. He also said that I am no where near dying, and it was nice to hear that from a professional. I still feel scared and liking bawling my head off and stamping my feet. I think I will - a little later.

We are going to England for the holidays thanks to Mary's (solicited) invitation and my mother's generosity. I am worried about the trip to St lucia in Feb. I hope that the trial doesn't get in the way. It's nice to worry about something other than cancer. I can't wait to see Nancy tomorrow to get a new perspective. A warrior perspective.

'Mo

You know what I am saying, I have chemo tomorrow. I am trying not to write how I really feel which is something along the lines of, yuck, blah, no, I don't want to go, you can't make me, I am not doing it. But I am going to do it and I am going to get my scan results and I am going to be as fine as I can be.

'Nuff said. 

Had a great day today. I did not sleep well, so Pat was a mensch and took B to school so I could sleep in - until 11! The only reason she woke me was so I wouldn't miss Bennett parent/teacher conference. I am glad I didn't miss it, because she is a well-loved kid in a great school. I just they had a kindergarten, that would be the pinnacle of greatness for us. Alas, we are still waiting to see what school she is going to attend. I digress. The conference helped me know that sending her 5 days a week was a good decision. Her confidence is building every day. She is a great sharer and she is totally on track in every other way. They even told us we were really good parents and that was nice to hear.

They asked how we handle cancer with B. A very good question. I told them we are honest with her, but do not mention death. I tell her I have tumors in my belly, that the pumped medicine makes me feel bad and tired, and most times I have the pump we take it out and look at it and explore the tubes and port site, etc. And that B plays a lot of hospital games and pretends her dolls are dead a lot. She, apparently, does not do this at school. I also told them they can call anytime to ask question about something that is going on with B. I think her school is her safe haven from all the cancer crap. She loves it there and I hope that she loves her new school as much. 

That is pretty much the happenings for today. Wish me luck for tomorrow.

A Bit of Scanxiety

Yes, it's true, I've been having a little bit of anxiety today about the scan. I don't really know why. I am pretty sure that Dr B is going to tell me the drugs are working and I'll have another scan in 6 more cycles (3 months). At least that is what I am hoping for. That and complete remission. Ah, wouldn't that be great?

The anxiety has made me very tired and lethargic. The only thing I really did today was go to the grocery store. I also made dinner with Pat tag teaming me while I took care of Bennett. If you call helping her write her letter taking care of her. It was a blast.

Bennett had a nice day with Aunties Liz and Julie. They got a tree and decorated it and she was pooped out. Fell asleep in about 3 minutes. So there are so many good things going on around me. So much love and wonder. I want to be there, with not even a tinge of anxiety. I suppose it's normal, and I have to remember that even if Dr B doesn't have the news I want to hear, I am not going to drop down dead right there. For some reason that is hard for me to remember. Even after these drugs stop working, and the clinical trial stop working, I will not fall down dead. I will still be alive and living until that last breath. I can do that. And how.

Posting with Granola on My Mind

What a day. We had another good one. Bennett and I woke up early and chatted, then I woke Pat up to remind her that she was going to let me sleep in. So I dreamily went back to bed. It was such a luxurious thing to do. The morning was spent making black bean and goat tagine. For those who don't know, goat is one of my favorite meats - so I make it quite a bit. Then off to the open studios. We really only stopped at Theo's. Her work was fascinating and we bought a woodcut print. I've been trying to get my hands on one of her prints for a long time, so I was a very happy shopper. Lunch with Ruth and a stop at Mt Tom's ice cream for a lolly for B and some ice cream for Ruth. I got some kind of candy that was called vanilla cupcake malt balls. That sounds good, right? They were nasty and I threw them away. And I love candy, they must have been bad.

Then I had another nap. And woke up to watch Barbie's Princess Charm School with B. It was about as good as it sounds. She loved every minute. As Barbie says, there is a princess in every girl. Well, we certainly have one living here.

And that's about it. Tomorrow we are planning to get our tree, but I am not sure we will be able to. We have a lot of other things going on. All good.

Not Exhausted

Huh?!? Not tired, exhausted or pooped? I know, I hardly believe it myself. I had a very lovely and full day and just put Bennett to bed and I am not drooping like I usually am. I am so lucky! And I have three more days until chemo to enjoy the energy. Tomorrow we are going to see Theo's amazing work at her studio at Cottage St. in Easthampton. Don't miss the open studios - the work is always incredible. They are open on Sunday too.

Today I got my first haircut in a long time. Well, since Pat shaved my head at the beginning of summer. But this was a real haircut - to make my hair shorter and give it a little style. As much style as you can give 1/2" long hair. I do have a little anxiety about having my hair grow back in. Last time that happened it meant that the drugs stopped working. I will know more when I get the scan results on Tuesday. The funny thing is, though I have some anxiety, I am not that worried. Based on what the docs have said, it seems to be working. And if not, we will find a clinical trial. There is a tiny part of me that just wants to be given the option to not be on chemo anymore. Ah, thinking about it, I have that option every two weeks. And every two weeks, I make the choice to have chemo. So there the answer, I guess. And I bet when these drugs stop working (which I hope will be a long time from now), I will not be so blase about it.

So, I have tonight to be happily not tired, and tomorrow's activities to look forward to. What luck.