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.

Apples, Cheese and Cancer

So I just had a really good apple with cheese and sometimes when I do something really fun, or eat something really good, I just forget that I have cancer. Mostly on my off weeks I forget. By off week, I mean the week I don't have chemo. When I am down with chemo yuckies, I can't think of anything else.

On to other news, my eyebrows are coming back. And I can only assume my eyelashes too, but I haven't checked. That and my leg hair. TMI? I don't know. Just information.

I didn't post yesterday. There wasn't much to report. Just got some errands done and felt like a part of the world. What an excellent way to feel. BTW, I got both cars inspected and took B to school. And other things. You know, it was two days ago and I only remember that much.

I had as good a day today I've had in a long time. I took B to school, I sat at the bagel place and read the paper while eating a sesame bagel, went to acupuncture, had a superb nap, and was late to pick B up from school. It doesn't really matter because all she wants to do is hang out at school. She told me she wants to live at school forever. She also told me that she wants to snuggle with me in the big bed forever. She can't really do both, but we can do a little of each.

Pat and Bennett are out buying tickets for the ballet. Aunts Ruth and Theo will be taking her next Sunday to see the Nutcracker. She's going to love it. Knock on wood that I didn't just jinx it...

So, for today, all is well. I might get up and make some banana bread, but maybe I will make it tomorrow. I have an idea to get into the studio tomorrow. I want to make a window. I need to start making things again and Pat made me a really nice place to work. I just need to clean it up and take advantage. It's now or never people, don't any of you forget.

Posting with Popcorn

Just a quickie to let everyone know that all is well. I am hanging out with a nice big bag of cheesy popcorn. B is asleep and P is working. And I am going to bed soon. I didn't schedule my day as well as I could have and now I am pooped. I should have taken a nap, but didn't. But I was out and about in the world and it felt good. I got the oil changed, got my poor abuse glasses adjusted. The one big thing I realized today is that my eyes always hurt and my glasses are out of date. I need to call the eye doc. I am sure it will help to get some new lenses.

Not much else to report. B is lovely and amazing. She is learning so much and will be in kindergarten next year. Can you believe it? Pat is my rock and I am the luckiest person in the world to have her. I am grateful for my life.

A Day of Days

A good one at that. Woke up early with B and the first thing we did was make spiced brown sugar carrot bread. She is an excellent sous chef - peeling the carrots, stirring, breaking eggs. It was really fun. And then it was 10:30 and I realized we hadn't eaten any breakfast. We got up at 7:30. So I had too many slices of carrot bread and B had cream of wheat. Then I had a short nap.

The plan was that we were all going to get dressed and head out to Snow Farm for the last day of the Artist's Sale and then drop B off at Aunt Liz and Julie's. Bennett was not having it. She told me she did not want to leave the house. And all this after I actually put on pants. So Aunties came here and took B to the park (so much for not leaving the house) and it was great to talk to them. It had been way too long.

After Aunties L&J left, I asked B if she wanted to make a delivery to Aunt Ruth's house. We brought her a loaf of carrot bread. It was fun to just drop by and hang out even for just a little while. And B got some good Aunt Ruth time. This morning one of the first things she asked me was what time she was seeing Aunt Ruth today. They have an amazingly special relationship. We should all be so lucky to have so many great aunties close by. Not to mention the fabulous aunts who are far away. B is awash with loving relatives.

So the last thing I will tell you - I was reading B a pop up book and I told her not to yank on the train too hard. She told me not to yell at her. And I said I wasn't yelling, and did she remember what yelling sounds like. She said no, so I demonstrated. Then she said to me "I always want you to speak to me beautiful."

That's my girl. And she deserves to be spoken to beautiful.

Thanksgiving Saturday

Well, I have to say it's been a mixed day. I had a good morning hanging with the family. Bennett spent most of the morning playing with her stuff by herself. A real sign that she needs more time at home. She is a real go go girl. Not a go-go girl, but a girl who likes to be doing a lot of things.

Today Aunt Ruth took her to the toy store and ice cream. Two Aunt Ruth days in a row. How lucky can a girl get? She also hooked up with BFF Avy and Sandy. Judging by the size of the tantrum she is having now, I think she had a very good time. I. of course, had a three hour nap. And it was a very deep nap and I was super grumpy when I woke up. I think there was part of me that just didn't want to wake up for a very long time. But I did, and I am glad I did. Pat made a super dinner and Ruth stayed which was nice.

Now it's just wind down time. I am not sure what I am winding down from, but winding down none-the-less. tomorrow i hope to be more active. Maybe even leave the house. I know I am going to make carrot bread as we have an astonishing number of carrots from the farm. That's about it. I have to check on Bennett and make sure she is okay. And maybe say sorry for not being that nice to her while she was having a tantrum. Oy, the parental guilt. Does it ever get easier?

There Will Always Be a Better Day

That is what my friend TC says. She's right, and I love her for it. I have known TC since we were babies, and now we are old farts. Maybe I should only speak for myself. Plus we are not nearly as old and farty as we could be.

Today was better. I am still tired and have the headache that hangs around for a week or so. But I spent quite a bit of time out of bed, and even made pumpkin custard with B tonight. I took a shower and then took a two hour nap. It's never clear what's going to wipe me out.

B had a great day with wonderful Aunt Ruth. They went to a balloon parade, a puppet show, had lunch out and visited Santa and the Snow Queen. She came home crawled into my napping spot and fell asleep. She has been very attentive while I've been recovering. I think it's stressful for her, I hate that. This time she thought I was going to get more surgery. She was surprised when I came home. I try to be really clear and honest with her, but sometimes she just gets her own ideas. I wish I could just wipe it all from her mind. And while I am atnit, wipe it all from my mind and body.

Thanks for the emails and comments. They really help.

Baseball Bats and Eye Fatigue

I started out the morning feeling horrible. All I can say is it felt like someone had hit me in the upper back with a baseball bat and that I couldn't get my heart to stop racing. That on top of the super sore eyes, really made today a hard one. At one point I started crying and it hurt my eyes too much so I had to stop. It's really not fair to feel so terrible and not be able to cry.

So, I missed Thanksgiving. Well, I was here, and I've had some pie, but Pat and B went to Ruth and Theo's for a quiet celebration. I was supposed to go, but I could not. As a matter of fact, I just got out of bed for the first time today and it's 6:30pm. i thought I would have some granola, but I had pie instead. I am not as nauseous as I was, which is lucky. I am determined that I will feel better tomorrow.

I think this was a double whammy - the CT scan drugs on top of the chemo drugs. It certainly has not helped my intestines in any way. Really yick, super yick.

So that's my day. Nancy said that I had no way of knowing whether this day was going to be my worst, but working with the history of what is usually my worst day - it is the day after I return the pump. And that is today.Or should I say, that was today. Tomorrow here I come.

Chemo, Second Day, Not as Sucky

I am trying something new, every time I think I feel yucky, I ask myself if I really feel yucky or is it just habit. It's been pretty interesting to discover that I often answer that I am not feeling as bad as I have in the past. That is not to say that I don't need naps and that the neuropathy hasn't moved to my lips, but at least I am not stuck in bed. And that is something to be thankful for.

I did my job today and when shopping for shiny clothes for B. I specifically went to get these glitter corduroys and pink satin jeans. Well, of course everything at the Gap was 60% off, so there was plenty of glittery things to get. She liked everything BUT the glittery cords and the satin jeans. She said they are for boys. I think she's been hanging out a gay bar.

Then I went off the get gas, the bank and acupuncture. Acupuncture was awesome is always. Then home for doing the bills and a nap. Why are naps so delicious and hard to wake up from?

That's about it. Tomorrow is my scan and I have to return the pump. I am pretty sure I am going to need a nap after that. I will have to drink the drink and have the drug that makes me have to pee, but at least I know what to expect. Then I will have my freedom back - from the handbag that I cannot put down, my pump.

Like I Said, Chemo Sucks

So does posting on the iPad. So this will be short. I feel like crap rolled in crap. Ruth is here bathing Bennett because Pat is working. The good news is I have an assignment to get B some pants she will wear tomorrow. She has rejected jeans and all manner of pants, so I will be on the look out for shiny and sparkling. I'll keep you posted.

I hope you are all well and content in this crazy world. That's all we can ask for.

See You Soon, Mary

Yep, Mary is gone. She had to go back to her own family. Dang it all. It was a great visit and I did more in that week than I have in a long time. It was good to see that I won't fall to pieces if I go for a day trip somewhere.

Yesterday we all went to Wellesley to visit Libby before dropping M at Logan. Wellesley is the most gorgeous campus I have ever seen. Even her dorm building is something out of a fairy tale. When Bennett saw it she said "oh my moses!" There are plenty of towers to imagine Rapunzel in and, of course, we have always known that Libby is a princess. So happy she is there and having access to so many resources. Totally awesome.

It was really hard to drop M at the airport. I blubbered a lot on the way home. We are all going to St Lucia in February, so we have the next time we are seeing each other all set. And my sister Joanne with be there too. Bennett is already excited. She seems more excited about going to the beach than Christmas.

I have a scan on Wednesday and Ruth is coming with me. She will not break the streak of going to all of the scans I've had. She is a good great friend and I am so happy she will be with me. I am not nervous about the actual scan, since I know how it goes. I am not even worried about the results since the tumor in my belly has shrunk so much. So now I am just curious about what is happening.

I have chemo tomorrow. Blah and double-blah. What else can I say? I think I have said it all. It sucks. I hate it. It's saving my life. I am grateful. It's a panoply of emotions. I will really do anything to have another day with Pat and Bennett.

Great Barrington and Beyond

So I haven't really been posting at all. Mary has been hear all week and I feel good. Today Mary and I took a road trip to Great Barrington to see what was there. We visited a couple of antique shops and had lunch. One of the shops was full of Asian antiques that were fascinating. It was like going to a museum, without the mean guards. I really wanted the 8 foot tall head of Buddah.

We have been eating very well. Pat and Mary arranged it this week so I could sleep in a lot. It was very luxurious. We Skyped my mom and that was fun. Bennett thought it was a blast to see Maily Gramma and took over the conversation. What else did we do this week? This and that and it was good.

BFF Avy spent the day at Bennett's school today. I know Bennett had fun because I took her home in tears, crying for Avy (who had to stay a little later). I wish they could always go to school together.

I got to talk to Jessica for a long time about her good little babes, Stella and Mathilda. We are hooping Mathilda will be coming home from the hospital soon. Saying some fierce prayers for that.

I have chemo on Monday this week. Which means I have to return my pump on Wednesday. Which means my worst feeling day will be Thanksgiving. So much for feasting. I have to make sure this doesn't happen on Christmas week. Don't mess with my Christmas. Oh, and I have a scan on Wednesday morning. I am so curious about what is going on- how well the drugs are working and what is happening  overall.  Please say a little prayer for me, or send good thoughts, whatever you can spare during this season of thanks.

Last Night

A pictorial essay on last night's Auntie dinner. It was total blast:

Aunt Ruth and Me

Aunt Theo, Aunt Ruth and Bennett

Aunt Ruth and Bennett

Aunt Theo. Aunt Ruth, Aunt Mary, and Bennett in Auntie heaven

Bennett upside down

Spooky Bennett

Aunties Julie and Liz

Chocolate Monday

A short post - a good day.

We did a lot of things. I overdid it a little bit and am now pooped. We all stayed up until 10:30 last night watching the Hangover. I can't remember the last time I laughed so hard. But that really did me in, as I was up at 7:30 to get B to school.

Mary and I had a good day, Pat had most of the day to herself. We went to Costco and bought too many things, and then I had to rest. Then we went to get Bennett. took her to B&N and I overdid it again and had a hugely uncomfortable hot flash. Time to go home. Mary cooked another amazing meal and now I am going to bed. I feel good. Happy that the drugs are working. Feeling like I got a second chance. And am so grateful.

BTW, the chocolate was on the ice cream and it was good.

Post 390

Can you believe it? 390 posts, that is crazy. And you all know I don't post every day, so it's been, well I know how long it's been - 16 months. Well, here's to another 160 months, at least. Right?

A good day today. Hung out in the morning with Aunt Ruth, Libby and Mary and Pat and Bennett, then P took B to swim. Mary and I took L to the lunch at Vihn Chau, our favorite Vietnamese hole-in-the-wall. It was delicious. I was so full, I couldn't really eat dinner. And that is saying something. Then, sadly, we had to take Libby to the bus so she could get back to her studious life. It was wonderful to have her and I am very sorry that we forgot to take a picture so I could post it. Dang. But here is one of me and Mary.

After that Mary and I came home and realized I was bored being in the house. So we went shopping at the mall. It was pretty exhausting - all that noise and stimulus. My goal was to get B a good night gown. It took some doing, but I was able to find a super cute fleece nightie at the Gap. I also found out how rare a good kid's nightie is. And of course I had to get the shoes that have kitty faces on the them. Bennett named them silver and pinkie. They are a little too big, but they will fit soon.

Dinner then bed. That's about it. I am looking forward to a good week ahead, with lots of energy and interesting things to report.

Saturday Night

It's been a lovely day. I still feel like crap, but with all the hoopla of Mary and Libby being here, it's been fun. Pat worked most of the day, I slept, Mary and Libby and Bennett cooked and went to the park. Bennett is definitely in love. I am not sure what it will be like tomorrow when Libby leaves. At least Mary will be here to comfort her.

I didn't do much. My heart has been beating really fast every time I try to do something other than lie down or sit on my butt. I am hoping it will go away tomorrow so I can do something - I am getting a smidge bored of being in the house.

That's about it. I am feel pretty fine emotionally, so no need to rant. Mary and I will continue to work on crossword puzzles and I bet we will continue to eat delicious things. Dinner tonight was a marvel - pork stew, roasted cauliflower and parsnip and fresh mashed potatoes. Yum. Even Bennett dug in.

Tomorrow will be what it is. That's all it can be.

Spare Me

Really what I thought I was doing was sparing you all. I've been in the usual chemo funk. Sleeping, moaning, groaning. Generally being out of it. I am getting better. I am out of bed. I showered, I changed the sheets. These are all things that let me know that I am getting out of the funk.

Jessica had the little Ruthies two days ago. They are no longer the the little Ruthies, but Mathilda and Stella. They are gorgeous, I have seen pictures. I can't wait to meet them in person.

And while we are on the good news part of the post, the once big tumor in my abdomen was described as "tiny" on Tuesday. If the big tumor is now tiny, what has happened to the tiny tumors? Could they be gone? We will find out on the next scan. I'll keep you posted.

Not much else to report - Mary and Libby are on there way. Pat and Bennett are picking them up at the airport and Wellesley. I can't wait to see them.

Chemo Tomorrow, Again

Yep, it's that time again. Chemo tomorrow. And I feel like having a tantrum because I just do not want to go. I know it's saving my life, and I should be grateful and blah blah blah, but I can't stand that just as I am starting feel human again, I have to go to chemo. And then I will feel like shit again and sometimes I just feel like how long can I do this? Every two weeks for the rest of my life, is how long. Ahhhhhh. It just seems so unfair sometimes.  Really most of the time.

That's my rant. I had a pretty nice and full day. We dropped B off to school and went to Home Depot to get a new toilet. Very low-flow and nice. I am sure it will save us a small fortune in water bills. Then P and I came home and cleaned up for the cleaning lady. Pat worked on the bathroom and it's really coming along. I know getting the tub refinished and getting the new toilet is going to make me want to get a new sink. But we really can't go there now.

I cleaned, did the mending, bills, and all the other things I like to get done before chemo. Jessica reminded me today that when we were expecting Bennett, I gathered things like crazy. Supplies to cover us for months. I made sure we had haircuts and tons of dog food and when B finally came, we were pretty set for a long time. That's sort of what I do for chemo. That way I don't have to worry about anything, and Pat doesn't have to worry either. She can just take care of me and B.

So we also checked out and applied for the Holyoke Charter School. It's a pretty nice place with a warm feeling to it. They gave us a tour and answered all of our questions and I think it would be fine for B. A little more structured than she is used to, but I think that would be good for her at this point. I might be saying that because she is the queen of dawdling these days. It drives me crazy.

I am going to watch the Office and then head to bed. I want to be well rested for my day of torture tomorrow. Wow, I really need to work on my attitude...

Pooped

I know, I know, I swore I wouldn't lead with how tired I am, but I can't stop myself. I am so pooped out. I can't really believe. I am not really even sure what happened. I spent the morning cooking with Bennett. We made pumpkin custard and sour cherry crumble (with the sour cherry that thawed out in the freezer during the storm). It was super fun to cook with B, she likes to stir and pour and break eggs. And of course as soon as the pumpkin custard came out of the over she wanted to have some. It was 9:30am, but she had some anyway.

I might be pooped because of the time change. I haven't slept well the past two nights. I did four loads of laundry in the past two days and I also made a big pot of stew. But then again, I took a nap this afternoon. Pat took B swimming for an hour and half, then to the part. Needless to say, B was starving and tired when she got home. She fell asleep in about 10 seconds.

I have been having some anxiety about this week's chemo appt. I have to see Dr. B's assistant who is very nice. What I am worried about is we are going to schedule a scan. I know we have to have one to prove that this drug is working, but I have high high anxiety that it might not be. I never really worried this hard with the old drugs, because I thought Dr. B had a bunch of other options for me. But now that I know that this is the last one, I am totally freaked out. If I stay in the moment, I am okay, but if I move out to the big picture, it's not pretty. I am just going to have to believe Dr B when he told me that he believed that the drug was working and that he has seen it work for people for a year or more. Please God give me that year.

I am going to go now. I need to delve into the alternate reality of my book. It's safer there then in my own head tonight.

Saturday Night

So it's Saturday night and I am fighting the urge for sugary things - cupcakes, ice cream especially. I miss ice cream so much, I nearly plotzed when I saw they had pumpkin ice cream at Trader Joe's the other day. None for me. Even holding bottled water today hurt my thumb.

There's not much new. That's not entirely true. I finished Bennett's sweater, and it is too small. It's a good thing she always calls it Avy's sweater because that is who will be wearing it - if she likes it, of course. I am just about to start on Mary's sleeping hat. I hope it works, because it is mighty cold in our house at night. Mary is coming this Friday. It's a like a bright light in the fog of chemo week coming up. My fab niece Libby is coming for the weekend too. Another bright light.

The three of us went to check out the Pioneer Valley Chinese Language Immersion School. Though the presentation was mind numbingly boring, and the anxiety from the other parents a little off-putting, we all thought it was a really cool place. B kept asking who would be her teacher and if this was her new school. We put in an application and we have less than a 50% chance of getting B in there.  Pat and I believe that B will end up where she is supposed to. We have chosen three options, the PVCIS, the Holyoke Charter School and the local elementary. Even though so many people are afraid of the Holyoke public schools, I think it would be a fine choice. Like I said she will end up where she is supposed to be and we will support her no matter what.

We went out to lunch and after that we were all totally wiped out. B fell asleep in the car and I got a little grumpy. I just wanted to get home and put on my cozy clothes and not think about anything. Not schools, not cancer, not whether I will be here to see B go to Kindergarten. It's just too much to deal with - so I knitted. That helped a little.

Pat is doing a great job on the old bathroom and we are both looking at the house and finding things that are just too dirty for words. It's like we haven't looked around for awhile - a year maybe. It's always nice to have people come to visit, because the house gets clean - well, as clean as we are willing to get it.

Life in the Slow Lane

It's amazing how quick we forgot about not having power. This morning after I dropped B off at school, I dropped a few hundred dollars at Trader Joe's to refill the freezer. There were two others in line doing the same thing. B also had the idea to bring these little ice cream cones from TJ's for her whole class, so we had to get some of those. So now the freezer is refilled, we are stocked with fresh food and heat and lights. It's all good.

Today I also got four out of five doors fixed. They are all wonky in their own way, but hey they close and open freely now. I picked up B from school and carried her all the way from her classroom to the car. It was what I used to do all the time, but haven't had the energy or maybe nerve to do it for awhile. So I did it and it was fine. While B and P went to swim, I made banana bread and a hug batch of jam with the berries that defrosted in the freezer. I just put the jam in quart jars, with the faith that B and I would eat it fast enough.

Then I just sort of hung out with B and P, and now I am here in the living room thinking that I am living a good life. It's been a very hard month or so, but it's now in the past. And I have a good future. Ah, what a concept.

Tomorrow I will fix door number 5, and do some knitting. Who knows what else. I won't know until tomorrow. By the way, the banana bread is luscious.

Posting with Power

Yep, the lights are back on, the heat is up, the dishwasher is running and the freezer is empty. We had to throw out 90% of the contents of the freezer. Luckily I called our insurance agent before we cleaned  it out and we are able to claim up to $500 in losses. That should just about cover it - we lost lots from the fridge too.

We are all relieved. Bennett is, right now, having a huge tantrum about wanting something. I can't even remember what, but I believe she is really getting all the stress out from the last four nights. It was weird for all of us to be in the dark, constantly cold and not really knowing what to do. Pat did a heck of a job getting us as warm as possible, she made us good food from the fridge so we didn't lose as much as we could have, she heated water on the camp stove to keep the kitchen clean. Amazing really.

Thank God that adventure is over. I tried to be a good sport, but I felt like what else could possibly befall me? I suppose I should be grateful that it wasn't a chemo week and that we got power back. There are still 1000s without it. When I called our power company to find out when we might expect the power back on, they said people on oxygen and babies with feeding tubes were the priority. That put me pretty much back in my place and thanking God I didn't have either.

So today was a good day. We got power back, I got acupuncture and Nancy helped me remember that I am living and that my being as tired as I am, is exactly how tired I am supposed to be. I had been talking to myself that being tired all the time was the new sign of dying. She reminded me that I am often looking for signs of dying, but that until I draw my last breath I am living. And that is a very good thing. She also talked to me about the good in being tired, the pleasure of a good nap, the nature of a good slow conversation, that I can take the time to be truly intimate with people because I am not all pepped up and doing too many things is one day. What a miracle to have that reassurance.

I also got to have a nice long talk with Jessica, who is keeping those little Ruthies safe and sound. I heard from Ruth, who is always great to hear from and just generally had a nice day. Tomorrow my plan to tackle the five doors we have that do not close. Pat is going to be dealing with the guy who is refinishing out bathtub. Today she took down all the rotten tile and wood so she can put up new wall and a tub surround. We are also getting a new toilet. Yay. Our current one is huge and certainly nowhere near a low-flow. Again, it's all Pat.

It's nice to be back. I miss the candlelight a little bit. But I am so happy to be warm.

No Power No Posts

We have no power, so I haven't been able to post. I am at Aunt Ruth and Theo's house to post. We are charging all of our stuff- phones, computer, iPad. Pat made it the last camp stove at Target yesterday. The entire mall was closed, Target was running on emergency power only and Pat said it was hard to read prices. She bought a ton of batteries, flashlights, and two lanterns. We were set for last night - all snugged up with plenty of light and hot soup. Pat also got the gas powered stove going about half power. She is going to try again this afternoon so that it can really heat things up.

It's a little weird not knowing what to do. There's been a run on gas and cash. So there is no place to refuel either way. There are a million trees down, literally at least one big limb for every tree. I called our power company this morning and they said there are 800 people in Holyoke without power and that the transformers are all okay. It's going to be a house by house fix. We might be out of power for a while. I asked them if they could do our house soon as I have a little kid and cancer. They said the people with oxygen and babies with feeding tubes come first. Stark reality that made me cry and feel grateful at the same time.

So if you don't hear from me for a couple of days, you know why.

Post 381

Fourth try. Still alive. Will post more later.

Getting Through the Super Ugh

I not much better, I have to say. I am working through it and that's all I can do. I had a list of chores to do, which I punctuated with a cheering call with Mary. I went to the yarn store to get some more yarn for the sweater I am making for Bennett - I was one ball short. Then I picked up a super soft, gorgeous yarn for a sleeping hat for Mary. I am hoping the neuropathy in my fingers settles down so I can knit comfortably. I went to the local Coop to get some whole wheat pastry flour for the homemade pancake mix I keep in the freezer- of course I ended up getting things like freeze dried cherries and garlic to plant. I don't make there very often, but they have great stuff.

My fingers were hurting so much I decided to go to the Mtn Goat (a clothing store for outdoors people) to get some gloves. My favorite gloves are fingerless and that will not do this year - so I got some very technical looking gloves that are very thin and warm. I also couldn't resist some cute socks for B. Then to a mind bending acupuncture session.

I am convinced the chemo makes me have feary thoughts. Last night I figured out that I needed to go shopping for black dresses for Bennett - and that I would have to get a series of sizes just in case I hold out longer than Dr. B. says I am going to. And I also need to get a black shirt for Pat. So they would be ready for my funeral. Hey, I don't even really believe in funerals, but that is were my mind took me. And it wasn't pretty. Nancy really helped me see that A. I was being controlling (me, controlling, huh?) and B. Pat and Bennett will be fine. That the sadness, anger and crying are out of love and that there is nothing that I can do about it. My spirit will be somewhere else. And maybe Bennett would like to wear a purple dress, and maybe Pat would not like to wear a black shirt. And it's none of my business. I felt better, then I cried through the amazing acupuncture session.

So right now I am very tired. I had a two hour nap this afternoon, it was heavenly. Pat made me a delicious and healthy dinner and I am luck that I had an appetite for it. I will put B to bed and try not fall asleep with her. Tomorrow to Worcester - hopefully before the snow comes.

Super Ugh

Right now I have a high ugh factor. I am queasy, I have a headache, the tumor in my abdomen is so tender that I can say that I am in pain, the neuropathy started in my right hand -so everything is tingly, and even room temperature water is too cold for my throat.

Hideous. Absolutely hideous.

Chemo Tomorrow

After all the colds and coughs and hardly feeling like a human being, I finally feel better. I had a great day. I hung out with Pat and Bennett, we went to do our last pick up at our farm. We have a winter share, but that's only once a month. Bennett and I spent most of the time throwing the ball to the farmers' dog, Zoe, while Pat picked the last of the raspberries. Bennett was in heaven and I felt guilty that Zeus doesn't know what the heck to with a ball. That maybe she would have more fun with Z if he did.

Z is at his summer house with Marsha. I think I posted this, but I will again. Our friend Marsha's dog died, so now we share Zeus with M and her family. They have a house on a lake in CT and a house on the beach on the Cape. He comes here to rest - we are his touch stones.

I am making sweet potato fries for dinner. Pat is gone teaching and had a quick bowl of the chicken leek soup we made yesterday. Bennett had pancakes and jello, I will have the fries and maybe some granola. I am not sure what's gotten into me, but I can't seem to get enough granola or oatmeal.  We are not the ideal family when it comes to sit down dinners with four squares and all. Oh well.

I really really really hate that I have to have chemo tomorrow, but as Julie says damn them for trying to save your life. Okay I get the picture. I sort of forgot that is what we are all doing. It just felt like they were torturing me for no reason. Not so. Gotta keep my eye on the prize. We just re upped for  a farm share for next summer. That seems hopeful to me. For awhile there I wasn't sure about anything. Not that I am now, but I feel more hopeful. That's good, right?

Almost Human

As it happens, it is the Sunday before chemo. That means I have tomorrow to enjoy my new found humanity. I am still tired and coughing, but I have more energy today than I have in weeks. I took a shower, I made some soup, made some pumpkin custard with B, it was mayhem. I am tired from the effort, but happy to have done it all.

And the stress level of the house is totally different. I forget that Pat and Bennett worry about me, and that when I am down they are a little down too. I haven't been out of my PJs since Wednesday, and on that day I wore sweats. This recovery has been long long long - too long. But I have turned a corner, I am alive, I will get over this cold and cough and I will have chemo. I will also get over that.

Bennett has been running around so much lately that she flatly refused to go to Aunties house today. She only wanted to be home (which, apparently include the YMCA, because she was willing to go swimming). So super flexible Aunt Julie came over to play for a while, then Aunt Ruth came over for soup and fixins'. She also brought Bennett a new book about how we sometimes have two feelings at once. She totally got it. She said to me "like when I was at the (Ashfield Fall) festival and I climbed up the ladder after Avy, I was brave and scared." That's my girl.

So tomorrow I will try to get my butt out of bed before 10, but I can't promise anything. I will have fun with Pat and Bennett and I hope to cough even less than I did today. God willing.

Mucus-ville

Bennett missed the paper - just a little.

That's where I live, in the land of mucus. Last night was misery, no one slept and it was my fault. Not even nyquil knocked me out. I am going to sleep in the back room tonight and I am hoping the new "supreme strength" medicine that Pat got will do the trick. I am so tired of being in the house. I want to be someone other than the one with the wicked cough. Pat said sadly, we didn't get our good week together. And that's a fact. And that means she didn't really get a break and has been doing the heavy lifting for weeks, and will have to next week too, after chemo. I got some good news, Dr. B. didn't think I needed to do anything but make sure I don't get a fever - so I am not allowed to take anything with tylenol in it. It would mask the fever. I working on day four or five of this stupid cold, so I think I am good.

Tanta Di called on Skype and we all got to have a little time with her. It was good to hear from her. I did some knitting while Pat took B to the farm. I heard they ran into Aunties there and dug a hole. Sounds good. Out dirty daughter is in the bath right now- she needed it too because she dropped a spoonful of chocolate mousse down her shirt. The mousse was good and made me less sad about not being able to have ice cream

The best news I got today was Mary is coming to visit the second-ish weekend on November. And on top of that Cousin Libby will be coming for the weekend. Lots of good to look forward to.

My goal for tomorrow is to get out of the house. I am not sure what that means, but by God I am going to do something that doesn't involve sitting on the couch and coughing my brains out. I reserve the right to bring tissue.

A Little of Everything

My first thought about the title for today was A Whole Lot of Nothing, but with some thought I decided that wasn't true. I am still sick, which is a big fat bummer. I decided that today I would stay in and get better. I stayed in, but I am not really better. My chest is very heavy and my cough is deep. I just want to get though this virus, so I can get through the next chemo so I can be done feeling crappy for awhile.

So, getting back to today. I did a little of a lot of things, I read, I tidied, I supported Pat while she replaced the broken garbage disposal and Sandy and Avy came of visit. It was great to talk to Sandy and of Bennett was is Avy heaven. It was, all in all, a good day.

That's about it. I am a little worried that is lung thing is going to land me the hospital. I have a goal of not going to the hospital for a least a year - and that started on Jan 3 (the date of my surgery). Of course I've been worried about pneumonia and all those other scary things. That is why I am staying close to home (hah! I haven't left in days) and trying to take it easy. Right now I am making chocolate mousse. I'll let you know how it is.

The Adventures of Fred and Vring

and me. We all had a pretty good day. I have been struck by a cold - on top of the cough, so I am a miserable coughing cuss. We had to cancel our trip to NYC to see Bob and Jim this weekend. That is a huge bummer and Bennett is the one who is the most disappointed.

I got to stay in bed reading until 10 this morning. It was a nice luxury. I had a shower and acupuncture, went grocery shopping and picked Bennett up from school. Bennett was sad that I showed up so we hung out and chatted with the teachers and worked on the growth chart they were making. We then went to the bookstore and I had to say no 1000 times. Why does the bookstore have expensive toys at kids eye level? Why does my daughter want dolly things that have a million little pieces? Luckily I steered to some paper dolls and then we left. Oh, we also had creme puffs for a snack. It was pretty deluxe.

Then home to watch Toy Story and soon I will put B to bed and read her some new books. I am such a sucker for book and all things printed. It's dangerous for me to go in the book store. I might have to join AA - Amazon anonymous.

Pat worked hard today. She took apart our broken stove and fixed it. She also found mouse nests - yuck. They're gone now and we lock the kitty in the kitchen overnight and tell her that we expect some mouse corpses in the morning.  I kicked five mice out in 2 days. It's the time of year. They are all coming in from the cemetery behind the house, looking for a warm place for the summer.

Tomorrow I will rest rest rest. I have to kick this crud no matter what before chemo next week. I just can't do these new drugs and have a cold at the same time. That sounds awful. But not to worry, at this moment I don't have to worry, I just have to be.

On Naps and the Easy Life

Yeah, it's true. I took it very easy today as a way to maybe get over this cough. I was up in the wee hours of the night without a drop of cough syrup in the house. I tried water, honey, anything. The only thing that worked was sleeping propped up on huge pillows. It, unfortunately, reminded me of being in the hospital. Needless to say the first thing Pat and I did this morning after dropping a very reluctant Bennett off at school was to go to the drug store and get five kinds of cough medicine. I guess I took some kind of step back. I hope I am not getting new virus.

After the drug store, Pat and I decided to go back to bed. I promptly fell asleep for three hours. Pat read. It was a shameful 1 pm before I got out of bed to make it to the couch so I could do only chores that required sitting and the computer. I wrote a few letters (yes, actual letters), did the bills, balanced the check book and stuff like that. Pat took Bennett swimming and to the park after school, so I had a chunk of time by myself. It was pretty nice. So, not a day necessarily lived to the fullest - I wasn't out seeing the Sphinx or on the canals in Venice, but a good day none-the-less.

Bennett, Pat and I had a discussion about imaginary friends. You see, Bennett has four - Flower, Nico, Angua, and Jane. Nico and Jane are boys who are five, Flower is a girl who is five, and Angua is two. Angua has been around the longest - well over a year. Flower just appeared maybe two weeks ago. While we were giving B medicine for growing pains, Pat told her that she had a very good imaginary friend named Dunkle when she was little. That they did everything together. B looked at me and asked me the names of my imaginary friends. I told her I didn't have any. She said I could have some now and gave me two - Fred and Vring. Our family is getting bigger by the day. So who knows what Fred, Vring and I will do tomorrow. It will be another easy day, but it will be better with my new friends along.

Posting with Mashed Potatoes

You'd think after all those months of eating mashed potato soup, I would never touch the stuff again, but who doesn't love mashed potatoes? I also started eating soup again. It sort of snuck up on me.

It's been a so-so day. I started strong by making B pancakes, taking her to swimming and playing with her. Around 12:30 I pooped out and went to rest. Two hours later I woke up. Ooops. I told Pat I was going to be 20 minutes. She's a mensch, and took B to the back room and played with her quietly the whole time. I love her for that - and so many other things.

That's about it. No sneaky bad thoughts, no pain, just me and the B and P and the goodness of the universe. Hokey? Maybe, but that's okay. I'll take it.

Getting There

I am pretty much back, but am still working on my energy and strength. I hauled Bennett around the house for awhile today and that totally wiped me out. But it was worth is, she is so much happier when I can really pay attention to her.

This morning she woke up at around 8, I was sleeping in her bed. She crawled into bed with me and told me about her dreams, introduced me to her new huge stuffed Tigger (that Aunt Dori sent), and we just chatted. It was fun. We had a quiet morning of this and that, then off with Aunties for a fun afternoon. Pat took a long hike and I got to finish a book that Aunt Ruth gave me - If Jack's in Love. It was really good - I read it in one day-ish. It's a book written by the boyfriend of one of Ruth's best friends. I was sceptical at first, but it was a great read.

A nice dinner of kale and sausage soup made by Pat and all is pretty much well. I tried to help with the chopping of veggies, but the veggies right out of the fridge hurt the tips of my fingers. Like the feeling you get after being in the snow too long and your fingers start to thaw out. It hurt. So Dr B is right (damn him!) that the effects of Oxaliplatin are cumulative. I am going to have to get some kitchen gloves. As it is Pat has to get Bennett her Fudgicals.

I hoping for a good night's sleep and lots of energy in the morning. It's time to leave this house - cozy as it is. I need some new scenery.

Eaking My Way Back

I haven't posted the last few days because all I would have posted was "ugh." I am still a little bit ugh-y, but at least I took a shower and did a few (very minor) chores today. Dr B was right, this time wasn't as hard as last time, because I wasn't getting a virus, but really it pretty much sucked. My eyes hurt all day yesterday and it feels like getting the flu every two weeks and having to get over it in three days.

Ruth and I hatched a devilish plan for a reality TV show called "the oncologist gets the chemo." I propose that Dr. B. be the first contestant.

Pat had been her usual rock self. The laundry is done, the house is pretty tidy and we are stocked with foods that are supposed to entice me. Ugh. I only want pizza, cinnamon toast and oatmeal. And tea.

I don't have much to report. Bennett has been great. A little heartbreaking at moments. Last night while we were putting her to bed she told us that we were allowed to die after she was grown up, that she needed us to stay alive to take care of her while she was little. Pat and I both were in tears. I told her we would do the best we could, but there was no way to know when someone was going to die. Then today she asked me where heaven was. Well, I lamely told her it was in the clouds. I need a better answer. Anyone got a good answer for where heaven is? I told her it was the coziest place and that angels and God lived there, and when people went to heaven they never came back. Then I told her it was not a scary thing, but a beautiful place to be. It was very hard not to cry, like right now.

In other news, my friend Jessica fell and broke her shoulder 6 weeks before her twins are due. It's a good thing she has a get-it-done attitude, because even a brave single mom would find this situation a little daunting. I told her she should write a book about her journey to having those kids. Personally, I can't wait to meet the little Ruthies.

I am going to spend the rest of the evening reading to B and helping her to bed. Hanging with Pat and going to bed. I am still fighting the coughing crud, but tonight I will brave the night without cough medicine. We'll see how long I last. I could use some words of encouragement, if you have some to spare.

Wednesday, Wednesday So Good to Me

We all woke up early because Bennett did. 6:30 and it was still pitch dark. She was in a gabby mood so while Pat slumbered, B and had some time to talk. It was fun, she is so interesting. She has gotten into the habit of telling me her dreams. They are mostly about school and her friends there. Pat had jury duty, so we all had to get up and make sure P&B had everything they needed for the day. I was planning on sleeping in, but I helped B put on her new party dress (another tag sale find) so she could wear it to school. She looked darling and very fancy.

A sort of non-sequitir, Pat and me in CA in front of cacti.

I left the house at 9, when Laureen arrived to clean the house. I have the family guilt thing - I just can't sit around while someone else is working. That is not entirely true anymore, but it's still there. So I did all the errands I could think of before acupuncture- bank, gas, goodwill drop off and I found a nightie for B and some Levi's, talked to Mary, then I talked to Ruth, then it was time for acupuncture. Nancy never ceases to amaze me. She really helps me live in the moment and stay in my own business. I just feel more alive after I talk to her.

Of course that was this morning, so many hours have past that I am going a smidge downhill. Oh well. I am grateful for this day. And that Pat didn't get picked for a jury. I have to drop my pump off tomorrow, which means I will be free again for another 12 days. Yay.

A Little Good News

So I went to chemo today and before my treatment I had a appointment with Dr B. He was very serious and talked again about the clinical trials, hooking up with an oncologist in Boston, etc. I am open to all that. Then he palpitated my abdomen and told me the main tumor there was smaller and softer. Both signs that the new drugs are working. Yay. He also told me he felt comfortable putting off the CT scan for another 2 cycles - so that is 6 cycles instead of 4. That's also good news. Pat says his mood changed after the palpitation, I didn't notice because I was so relieved.

I also asked if I can fly with the embolism in my lung. He said yes. It's not a blood clot, but a piece of a tumor. That is so gross, I don't even want to know. That means I get to go to St Lucia in February. Thank goodness. I am looking so forward to a week in a villa with Pat, Bennett, Mary and Anna.

It's funny I didn't know how worried I was. I know now because I am so relieved. And Pat too. We were a little testy with each other last night and even a little this morning. On the way home from Worcester, we talked about how stressed out we were. Even though I know that even if this drug stops working, I won't fall down dead from the news, I still don't want to die. Steve Jobs said that even people who want to get to heaven don't want to die. I can totally relate. Speaking of Steve Jobs, this is going to sound weird but his death, while very sad, is comforting to me. I think it's because if he can do it, I can too. I don't know why I feel this way, but I do.

So that's the news. I feel headachy and Dr B. said that this cycle shouldn't be as hard as last time, because last time I was getting this terrible virus. And it lingers on even after a round of antibiotics. At least the infection is gone, now I have to get rid of the cough.

I have to give you all a big thank you for your prayers and good thoughts and wishes. I couldn't do it without you all.

F-ing Chemo Tomorrow

You know what I mean. I have been nervous and half-crabby all day about it. I feel great, and the idea that I will be pumped full of drugs that alter my body and mind really bums me out. And I have to see Dr. B. tomorrow and I am sure he's going to give me shit for something. Getting a virus, not losing weight, something.

I am not going to go on and on, but I am tempted...

I had a great day. Park, Sandy, Avy, good snacks, Pat. It was nice. Now I am to bed. Wish me luck for tomorrow.

Report on Sunday

A great good day. Full and lovely. I took B back to the Y tag sale because she was sorry we didn't buy the ugly 3 ft high doll that was there yesterday. Thank goodness someone else bought it. Yikes. B found more clothes that she liked, and like yesterday I felt like we scored. A few weeks ago she didn't have one winter dress - now she has plenty and I can officially stop shopping and worrying. Of course it was 85 degrees today and I put all her summer clothes away last week.

Pat took B to see Aunties Liz and Julie, where I heard they spent most of their time together digging in the dirt. B had a bath afterward and came home in her underpants because both the pair of pants we sent her in and the emergency pair got dirty. Sounds like fun. I spent that time to myself. My first plan was to plant my butt firmly on the couch and knit and watch a movie. Instead I made some chili, finished the laundry, talked to Mary, knitted the right half of the front of the sweater I am knitting B, and cleaned the kitchen. That includes breaking my boycott on emptying the dishwasher. I think that's it. It was nice to have the house to myself while I feel good. Usually I am in the house by myself when I feel crappy. Nice change.

Pat brought B home after going back to the tag sale that had all the good metal stuff and came back with a few things. B and I snuggled on the couch and watched a movie and now P is getting B to bed.

I feel so good that I can't even remember feeling bad. I can, but it's really far away. I am so lucky that I get these times when I feel good. I know there are people who feel like crap all the time. I am thanking my lucky stars right now.

A Report on Three Days

I am just going to give a synopsis on the past three days. They have all been busy and good. I feel great and already feel sorry that I have to have chemo on Tuesday. Nancy would say that I don't know that the chemo is going to knock me down, but I pretty much do. And I am going to be sad to miss the days I am recovering from it. Blah blah blah cancer.

Thursday Pat and I hung out and it was fun. We met Sandy and Avy at the park and had a blast. The day was gorgeous.

Friday we went to the farm and it was a beautiful day and that was fun. We went to an Amenorrhea party at Liz and Julie's and we ate like queens. Bennett had blast because all her MA aunties were there.

Today Pat went to work out at the Y and called to tell me there was a big tag sale there. I asked B if she wanted to go buy some new clothes and off we went. She picked out some very pink and very cute things and I left there feeling like we scored in a big way for very little money. After that we picked up Pat and Aunt Ruth and had an adventure at the Ashfield Fall Festival. We spent the whole day there - even closed the place down. We were lucky enough to hook up with Sandy and Avy. We said we were going to meet and to call each other when we got there - not knowing there was no phone reception. We saw good music, ate treats, I got a new spoon, looked at really good old junk at tag sales, and we all bought apples. The weather was in the 80s and the leaves have not turned yet, so it was a little hard to get that fall feeling, but it was a lot of fun.

Tomorrow, who knows? Lots of laundry and cleaning up after these busy days. Or maybe we will all sleep in a laze about. It's hard to know.

Tired, in a Good Way

Okay, I know I said that I wouldn't start a post with how tired I am, but, hey I am bushed. I had a great day, thank God, and I am tired from it. Not tired from being sick, not tired from chemo, tired from living life. What a blessing.

Today the best things I did today were hanging out with Bennett for about 25 minutes at school in the afternoon. Her teachers are so awesome and B spent the time making me playdoh cookies. All the kids were staring at me as I pretended to eat each cookie and at the end pretended I had a tummy ache. B got a little worried and whispered to me, do you have a tummy ache or is it pretend. I was super happy to report to her that I pretending. She see me sick way too much. I also had to tell her teacher that I have cancer - she didn't know. I was surprised, but it was good to tell her so that she knows that B is dealing with something big at home.

The other great time I had was a challenge Pat gave me - to make her a sausage, mushroom and leek stew. I have to say it came out great and reminded me that I am a really good off-the cuff-cook. I realized that I miss cooking and am planning on making some nice beany chili tomorrow.

That's about it. I am saying that I had a great day - did you?  I hope so.