Posting with Star Wars

As you can imagine the fun in England continues. We went to the National Glass Centre and St Andrew's Church to see the stained glass. I have to say, though the church was over 1000 years old, the glass was not. Most of it looked like it was from the 60's. The 1960's, that is. There was one pretty spectacular set of windows that I would say were medium old and very beautiful. We lit some candles and I talked a lot about how we are sending our god wished up to God. Bennett said if we blow out the candles the wishes to God won't come true. It was a nice place to go. After that we went to Costco - it's nice to know that the United States has imported something as useful as a place where you can get a 19" pie for a couple of pounds.

We are waiting for the guests to arrive. We are having burgers and shrimp on the BBQ, lots of wine and some port that I got. I am ready for the feasting to continue. I have been walking around much more than I have been. It makes for a good appetite and good sleep. I've been sleeping in until 10 or later. It's so luxurious. I feel good. It's nice to be so far away from chemo. And I don't have to go back until 7 days after I come home. It's such a nice feeling to have so much time off. Mostly I just pretend that i don't have cancer here. It's very freeing.

I am watching Star Wars, and trying not to fall asleep. I hope it works. I'll keep you posted.

Four Days Here

We've been here for four days now and it's all been good. Lots of good food and day trips. Yesterday we took a rise up to a garden, but it was too windy so we took a road trip to see a super cute town called Rothbury. We did a little grocery shopping and oohed and aahed over the English-ness of everything. It's like my friend Naoki who visited a few weeks ago, he kept saying everything looked so New England. Well, when you are in the place - it really what it looks like. We had lunch at a place called Goats on the Roof, which has a green roof and a staircase for the goats to get up and have a snack. While we were there, two adult goats and one baby where up there napping and noshing.

The day before we went to Aydon's castle, which was inhabited until 1966. Hard to believe, it was incredibly cold and we all wondered where the bathroom might have been. It was a gorgeous day and we went to my sister's friend's cafe called Cafe Vallum. It was delicious and we had luxurious ice cream made from the milk of the cows that live there.

Seeing a pattern? Road trip to someplace beautiful with a delicious meal someplace cool. Today we went to Mary's sister-in-law's house (which looked like a magazine- really) and had a great meal with a lot of interesting, warm people.

Cousins Alex and Anna have been super nice and patient with Bennett even tho this is there week to study for exams.

Next we will go to the Nations Glass Centre in Sunderland. I'll let you know how it is.

The only thing that has been a little weird is the elephant in the room hasn't really been addressed, except by people who Mary knows who are medical professionals. Everyone knows, who knows how to bring it up, I don't know. Maybe it's just enough to get a break from having to tell people and to just be. Just be bald, and everyone pretends that it's not something to be notices. And maybe it's not, maybe it's just me who is conscious of it.

Four Days Past

It's a record, I haven't posted for four days. I have been traveling it's been great. My goal for this trip is to relax and to increase my stamina for things like walking and general activity. I have been feeling a little fatigued after taking B to the park. But that's not what you want to hear about, is it?

My trip has been great. The flights were uneventful and my decade long flying strike is over and I wasn't even scared one bit. Okay maybe just a little bit when we went through some turbulence, but I reminded myself that it's bumpier going down 91S to take B to school then it was in the plane and I was okay. Even though we were on the red eye, and I envisioned B putting on her jammies and conking out, it was pretty much the opposite. She didn't sleep much, Pat didn't sleep much and I didn't sleep a wink. We left Logan at 7pm and got to England at 6am local time, B said ti was just day and then it was night and now it's morning - wow, that was fast. It was a very quick indeed. The 3 hour wait at Heathrow was pretty miserable and we somehow managed to spend $40 on breakfast (it was delicious, but really!). The 1 hour flight from Heathrow to Newcastle was easy and fun to see the land beneath the plane.

So I had a small nap in the afternoon, but mostly stayed up until bedtime. And lucky us, B slept through the night - as did we. Thank God. B woke me up at a reasonable 6am and we decided to make a quest to the area park. We didn't find it, but we went up a gorgeous path along the Tyne river and B said, "I don't know what this path is called, but I am going to call it the flower path." Then we talked to see a baby horse and some cows. It was a really nice to way to start the day.

Lunch was spent at the local dairy farm, with fantastic ice cream.

All and all it has been a great trip, super fun with Mary and all the people who live with her (that's what B says), and nice weather. More later.

Shop 'Til You Drop

Well, I didn't really drop, but I might in about 20 minutes. I hung out with B this morning then P met me at the dentist. We were early so I sat with P&B while they had lunch and I had a grapefruit soda. I didn't want to get anything in my teeth. Anyway, I had to go to the dentist because my tooth broke for the third time. Dr. B. (the dentist) spackled it all up and that's all we can do. Dental work still being forbidden and all.

After the dentist I did as many things on the list that P&I made last night. Made a million calls, changed chemo, begged the unfeeling lady from British Airways to allow my to book my seats ahead of time without the $30 per seat fee (are they kidding?). I even played the cancer card. All I can say is I hope the rest of the people in England are nicer than that woman. I am pretty sure her karma is not in very good shape. Anyway, after all that, I went shopping. New pants and rain coat, a TSA friendly cover for the computer, a new magenta with white dots suitcase (Mary said to get something easy to spot), you get the idea. I forgot a few things that I will get tomorrow - like coffee and a new rain coat for Pat, some Dramamine for me and some gum and goodies for B.

I feel good. I don't have much to complain about. I still feel a little hungover from the chemo, but it's lessening. My feet heeled, no pun intended. My tooth is fixed. All is well.

I should tell you that B had an excellent day at a play date with her friend Spence from school. He asked her to come live with his family. Pat had to take her from the house literally kicking and screaming. Maybe she wanted to live with them, who knows. I do know that I want to live with her and I am pretty sure Spence's moms are not ready for all of us to move in (though, full disclosure, he only asked Bennett to move in).

Another great God given day. What more can I ask for?

Brown Sweater, Check

I finished the complicated brown sweater.

I don't actually have it on and have a weirdly small head, I am holding it up. There's a cable up each arm and down the back. I didn't notice until it was all done that the pattern down the back is not centered and looks a little lame, but I will call it artistically placed and called it my own. 

I am feeling rather human today. I had a nice nice day. Play date with Sandy and Avy in the morning, I made something called Dutch Baby that my niece told me about - it's like a giant eggy crepes that you bake and eat with powdered sugar and lemon. It was good. A&S left when Pat took Bennett for her weekly Auntie visit, and I had the place to myself for about 4 hours. I didn't do much of anything. I mended Bennett's mini-mouse costume, started knitting an rusty orange cardigan for myself, and caught up on some TV. It was post-chemo bliss. It was just what I needed to really feel better. 

I have a list of things to do tomorrow. I am going to change my chemo schedule around so that I get a four week break and my off chemo week will consider with my travel/visitors schedule. Some part of me feels like it is a tiny bit irresponsible to put off chemo one more week, but I truly need a break. I have been really really good for that past 6 cycles, and since I am not off anytime soon, I am just going to take my chances and make my life a little nicer. Then I will get back on the cycle like a good girl.

Anansi the Spider

This morning we all trooped over to B's school to see a performance of Anansi the Spider. Bennett (and all the kids) had to arrive wearing all black for their costumes. Boy, did she look cute. We got there in plenty of time, dropped her off at the staging area and sat patiently in the first row. Out the kids came, looking super adorable and excited - everyone except B. She started crying the moment she got on the stage. The director asked who in the audience was Bennett's mom - up shot two hands. B ran to us and we all watched the performance together. She loved the practice in class, but woe to the person who makes her perform in front of an audience. We don't really care, she is only just about four years old and that's a lot of pressure. She will or won't want to perform later. At least she likes to participate in class.

After the non-performance, we went to the school's annual Musical Roots festival and had mango lassi, curry veg and pizza for B. B played on the drums, got balloons, and we bought a Celtic music CD. It was pretty fun - a gorgeous day. I got tired and we went home.

I have had terrible chemo toots all day. I am afraid the entire house might smell foul. I think it might be the Indian food - it was advertised as nine nuts and nine veggies. That could do it - don't you think?

Pat is dismantling an old typewriter, B is asleep and I am sipping on my 4 oz. of wine that I get to drink only on special occasions. Today is one. I am alive. That is enough of a reason to celebrate - though next time I am going to splurge on much better wine...

Posting with Seltzer

It might not seem like a big deal to post with seltzer, but for a long time I couldn't drink anything with bubbles. So now when I drink it, I am reminded about how much better my digestive system is than it used to be.  Yay for that.

Libby and her Dad, Uncle Dave, just left. We all went out for Vietnamese dinner and had a nice evening. When we told B that Libby was leaving she was bereft. I don't blame her. Libby is a wonderful cousin and super attentive. I don't even need to tell you the crepe breakfast was delicious. I told Pat that the crepes were great but that I still felt like crepe.

That's pretty much been my day - sort of going in and out of feeling  okay and then really crappy. My heart is beating too fast for my comfort and I feel scared in a way I haven't felt in a while. The fear is a response to the chemo. It always makes me feel like I am dying - not literally but something like literally. It's just a mean reminder of the cancer and I can tell you I am sick of having cancer. It's been 9 months of chemo, so far. No end in sight and I feel just shitty about it. I know that I should be more grateful, that I know some people who have such a terrible time with chemo that they don't really every recover between treatments. I am lucky that I get at least 9 or 10 days of feeling pretty good to great out of every 14 day cycle. But sometimes I just need to pause to feel shitty. And that is what I am doing right now. Just for this moment, not forever, maybe not even five minutes from now, but I need the freedom to just be in the mire right now.

It's a pretty stinky place to be. Don't stick around. I am not going to either.

After Chemo Tiredness

Boy, am I tired. I came home from dropping B at school and went right back to bed and slept until my pump beeped to let me know that it was empty - that was 12:15. I quickly got up and told Libby it was time to go. She was excellent company and the appointment went quickly.

Our visit with cousin L has been great. Bennett loves her so much, and L is kind enough to play her whenever she calls. Tomorrow morning Pat will go to work and L, B and I will have a crepe breakfast. I am really looking forward to that. The first thing I need to do it go to bed.

I have a three-week break from chemo, thanks to our trip. I am really looking forward to feeling good while traveling. I don't really have anything else to say. I think I covered it all. Oh, except Nancy told me that I should post about my on-going dreams about being chased by Nazis. I think the Nazis are the cancer. They are always around me, threatening but not deadly. I don't wake up scared, it's more like the Nazis are super unpleasant, rather than horribly dangerous (like they were in real life). Nancy thinks that if I post about these dreams it might help them go away. That would be nice. It would be nice for the cancer to go away too.

I had a really strange experience this morning. This woman who is subbing at B's school came up to me and said "having a little chemo as we?" She then told me that she had breast and bone cancer and that she was so happy with how her hair grew back. She leaned over and told me to touch it, I didn't really want to, but I did and it was soft. B then took off my hat and offered my head to this woman. She gave my head and good pet and said that soon I will have my hair back. I am pretty sure she is wrong - though there is no way of really knowing. I don't mind being bald at all, I miss my eyebrows more than my hair.

Good night all you good folks.

Libby is Here!

Here is cousin Libby, here to visit and play. It is great to see her and have her here. Who knows what we will do. So far we have covered the Tuskegee Study, syphilis, WWII, skin heads, Jonestown, oh and school and Bennett. See, I told you she is interesting. More tomorrow.

Monday, Monday, So Good to Me

It was a day of ease. B&I walked Zeus, we had a Madeline film festival, ate snacks, played on the bed, had a "fillow pight," and generally hung out. It was lovely. I can tell that B liked it too, because she was super attached to me by the end of the day. There isn't much to say, I had an excellent dinner with Pat that was highlighted with the ramp pesto and these delicious tofu patties that Naoki introduced us to.

I have chemo tomorrow. Blah is all I can say about that. Cousin Libby is coming tomorrow and Bennett is totally psyched (we all are). So that is a good antidote to the chemo. My feet are just healing and I am worried that the chemo will make them crack again. All I can do is continue to slather them in all the ointments I have and hope for the best.

Well, that's about it my friends. I don't have anything really interesting or harrowing going on. I suppose that is a blessing. It is a blessing. And I will count it as the ending to a really good day.

Super Saturday II

A quiet and great day. I feel really good, B&I had a nice morning and Aunt Ruth came over and stayed for dinner. Pat and I made a wicked good batch of ramp pesto. We had it with roasted chicken and mashed potatoes (for me and B) and broccoli and asparagus for us all. What more can you ask for?

Not much. Pat is reading to Bennett and I can hear them through the monitor. It is the sound of love and it makes my heart beat and beat. Tomorrow a rainy and quiet day. I am grateful for this lovely day and looking forward to tomorrow.

Another Hello Visit

Here we are with my old (not in age, but in number of years we have known each other), dear friend Naoki. Contrary to Bennett's forlorn look, she loved N and started calling him "cousin Noaki" right away. She also wanted to have him snuggle her in bed, the ultimate compliment. 

N and I had a great visit and it was like we had just seen each other last week - it had been about 10 years. It's so fun to hear about his kids and husband and their world travels and other adventures. We had a day together while B was in school and didn't do much but go from eatery to coffee house to other spots to chat and chat. It was a blast. 

I am beat from all the fun. N left this morning and as soon as he left B burst into tears and said she wanted to watch a movie. She must get that from me - watching movies to help her when she feels sad. P and I got some time to spend together which was a gift. We just don't have enough time together - just the two of us. When her job at Snow Farm ends, we will have much more. I can't wait. 

Next week cousin Libby comes to visit which will be awesome. She is coming during a chemo week and I am trying to tell myself that I don't know for sure that I will be tired and queasy because I want to be a good and fun host. Libby is one of the most interesting people I know, so it will be a fun visit. And, boy, does Bennett love love love her. 

This weekend Pat is teaching all weekend so it will be a mom-o and B weekend. I think it will be fun. I hope the weather holds and we can make it to the park both days. I'll keep you posted.

Late Posting Lameness

Last night I stayed up until 11:00 before I figured out that my friend, Naoki, is coming TONIGHT. So I am going to have another late night, but that's okay. I had a good day with plenty of energy and didn't really miss all that extra sleep I've been getting. Let's see if it holds true for two nights in a row.

Today I got paint for the bathroom trim, talked to Mary and had a great laughing time, went to acupuncture and the best thing of the day was picking up Bennett and going to park with her. Another best thing was when Pat surprised at the park to come and play. The weather was gorgeous and so is my family. I had a little heart pang this afternoon when Bennett didn't ask me to take her to the park, she asked me if I had enough energy to take her to the park. It took some effort for her little mouth to get around the word "energy," but she did it and it just about broke my heart. Nothing gets by her.

Oh, and then at the park we ran into a neighbor who I try my best to avoid, you see why. He walked up to me and said "man you look sick, what's up?" I told him I have cancer. He then told me both his sister and brother in law died last year from cancer and it was very painful and just awful, etc etc. Bennett was sitting next to me and grabbed my hand and said in a very confident voice, "Mom-o goes to the doctor." Which I took to mean F-you, asshole, shut up. My almost four year old daughter has got it going on. I then told this guy that the doctors and medicine were helping me and that I was good. Let's see if I can avoid him some more. Yick.

Nancy, the great acupuncturist, gave me some Chinese medicine for my feet. It's sort of stinky according to B, but it instantly makes my feet feel better and cooler. Not like menthol cool, but in a way that made me realize that my feet have been hot for days and I didn't really notice. So let's all cross our fingers that it works.

That's the story and I am sticking to it. Have a great night, comment me tonight. I will be up to see them!

Up Late

I am up late waiting for an old friend to arrive, so I can show him his bed and I can go to bed myself. I don't think he'll be here much before midnight, and I can't tell you the last time I was up at midnight on purpose. Pat agreed to take Bennett to school tomorrow, so I don't have to really worry about getting up. Again, she makes my life so easy (and wonderful).

I don't have that much to report. I feel fine except my cracking feet. It's like walking on spikes. I can't figure out what to do, the skin on my feet is the texture of paper bags. My fingers too. It's weird. I will just keep working on it. I have to because every step I take reminds me to try to figure out how to fix this.

I had a good day. Nice to have a day, any day. Shopping, hanging out at the park with Sandy and BFF Avy. It was a lovely day. I bought every light we need to finish the bathroom and the balcony. I also got the medicine chest and picked the color of paint for the trim. I think we are on our way. So much to do, not enough hours in the day. You know what I mean?

A - Alligators All Around

B- Bursting Balloons, a Carol King song that is stuck in my head. I sing it to Bennett a lot and I really love it. I think it helps me cope. I know that when I am trying to get through a particularly hard moment, I sing the whole song, A through Z, and it makes me feel better. Carol King is good for getting through things with.

I had an excellent day today - and I mean excellent. B and I had a day on the town, shopping, going out for lunch and ice cream, and the toy store. It was so much fun and I got a great hat the color of red poppies. Bennett got some purple shoes and it was a total pleasure to share ice cream with such a nice kid.

I feel good but have a little stress. That stress is from reading all the rules and regulations about disability payments. There are a LOT of rules about how I have to keep track of the money and how it can't be mixed in with other money in joint accounts. The bank account has to be titled a very specific way, and they can audit us at any time. So, tomorrow I go to the bank to open a new account so I can be all legal and everything and get rid of the stress. I told Pat this is another reason not to die - I have to keep track of the paperwork. I have a long, long list of reasons to stay alive. Not to worry, not dying anytime soon. I keep hearing the surgeon, Dr W, say to me when I asked him what it would be like to die and the best part of his response was "you are nowhere near that, nowhere near that at all." I keep that close to my heart and it keeps me sane.

So now you know a couple of ways I keep myself from running screaming in the street, which was the way I felt when I was first diagnosed. Now I just feel pretty fine on such a fine day.

The Big Reveal

Now is that a fine looking head or what? Nice and round, no weird bumps, no horns. Not bad. I feel much better. I think it has to do with control, I couldn't take it when it was just falling out and looking all patchy. As soon as Pat put the clippers to my head, I knew I would be okay-er than I had been in a while. And I got a lot of good bald-headed love, included an e-mail from a woman I have known since I was a tiny kid, which included a tear-inducing photo of her bald self with a huge smile and Yellowstone in the background. It is all about life, this thing we are in. I forgot that in my worry about my hair. It's all about giving Bennett her five kisses so she doesn't get bad dreams, or kissing Pat on Ruth and Theo's lawn during the Mom and Aunt's Day BBQ they threw today. Or really believing that beauty is everywhere, even when we forgot to notice. 

Squeaking By

I feel a bit better. Rereading my last blogpost was like finding dirty undies on the floor after guests leave - mortifying. I fell asleep at 6pm last night and did not wake until after 7am this morning. I did get up once to get B a small glass of milk, but that's it. I guess I needed it. I have residual bad attitude, but actually had a very nice day.

The day was like this, hung out with B this morning while Pat worked. Aunties Liz and Julie took B to the zoo (lucky lucky) in the afternoon so I got to hang out with Sandy for a little while then go buy some pillowcases. I decided this morning while changing the sheets that I can no longer live with stained pillowcases. Life is just too short for that. I also got some red velvet cupcakes for me and B for dessert. They were excellent. I helped Pat pickle a quart of ramps (wild leeks) she foraged this afternoon and had a very nice dinner.

I noticed that when I was shopping I was very self-conscious and embarrassed about my hair. Everyone kept calling me sir, but that happens a lot anyway. I can't get the idea that being almost bald pegs me as cancer-person. I know there are lots of reasons why people are bald, and it's even chic for men to shave their heads, but really no hair? No eyelashes? No eyebrows? Okay, the last vestiges are still there, but not much. I am beginning to believe this is the kernel of my problem. The only way to get over this problem is to accept that I am going bald, will be bald for some time and that I have a really nicely shaped head. I will post tomorrow, with or without hair.

I need you all to send me some bald headed love. Seriously, I need it more now than ever.

What is it with Cancer Anyway?

It's so hard. It's so depressing. It makes me tired and bald and tired again. Looking into the mirror is the most depressing of all. I had no idea how much my self-esteem was caught up in my hair. At least in the winter I could just toss on a hat, but when I got my hair back I thought I would get to keep it. This is most likely the weekend, if we can find time, to shave the noggin. No more fuzzy noggin, just a noggin noggin.

I am wicked tired and can hardly find anything cheerful to write about. I should remember that I had a delightful conversation with my mom today, got to talk to Ruth a couple of times, and I returned my pump which always makes me feel free. But I have a nagging bad attitude tonight, so perhaps I should sign off.

Here's to a better day tomorrow and a change in attitude. Really, what is my problem anyway?

Posting with Chocolate Covered Pretzels

I am in the living room, a little weepy from who knows what, listening through the monitor to Pat read Madelaine to Bennett, eating chocolate covered pretzels. We have so much going on I am not sure how we are going to get it all done. The drywall guy starts tomorrow, the electrician coming to get the electricity going in the bathroom and balcony, Pat is swamped at work and is feeling pressure at home to get a lot done. I have the need to do and do and do. It keeps me going and I think it sometimes exhausts the people around me - including myself.

Take today for example. Pat let me sleep in, which makes her an angel, I worked on paperwork for a couple of hours (and did not get it done), went to the bank, acupuncture, the health food store for some foot cream with calendula in it (I just cannot put deodorant on my feet), and I got home just in time for the drywall guys to come to do some more measuring and drop off the scaffolding. By this time it was time for me to get B at school. She was covered in bells when I got there and slowly dancing and jingling. It was so sweet, I couldn't bear to interrupt. She didn't want to leave school and all her friends and the bells. I hate to be the one to pull her away from all that goodness.

We got home and did puzzles and I called Pat to ask her to come home early. I was pooped. Somehow, though, the evening was filled with activity and Pat and I ended up having out first fight in front of Bennett. It was a small one, as P&I rarely fight. Bennett was totally freaked out and cried and cried. Pat was genius and talked her through it while we all cuddled in the bed. She rolled over and hugged Pat and said I feel "muched" better. Me too.

Pretty Good News

Hello everyone. The news today was pretty good. No new cancer, some tumors stayed the same and some got smaller. For the type of cancer I have (KRAS Mutant), this very good news. Of course we were hoping for all the tumors to have disappeared, but since Dumbledore is not my oncologist, that was unlikely. I have something called foot and hand syndrome. Dr B says anything that has syndrome following it means that they don't have any idea what causes it or what to do about it. What it means to me is really dry hand and cracking feet. The weird cure for my feet is Gillette roll-on deodorant. I haven't tried it yet, but I will let you know. Another, more conventional treatment is some super lotion applied 6 times a day and sleeping with gloves and socks. I might try that over the roll-on.

So the scan is over and now starts the spring and summer activities, which will still include chemo every two weeks. Oh well. We are having tons of visitors and going good places. Lots to look forward to. I feel pretty good tonight, though I have that nagging thirst that only grapefruit juice can satisfy (thank you to Sally for telling me about it, and thanks to Ruth for sending me a case). I have a big day tomorrow. I am going to take B to school, I must go through the papers piles on the desk and the drywall guy comes at 1 to deliver the sheetrock. He calls is rock, so I might too. I am trying my best to get the electrician here too, but it looks like he'll be here Friday.

We live near Westover AFB, the planes are either taking off or coming in every few minutes. It's kind of freaky. Here's to a night of peace for us all, and a deep hope for peace everywhere. That and spontaneous complete remission. I had to throw that in.

The Monday Before the Tuesday

Yep, it's the Monday before the Tuesday when I get the scan results. I haven't been nervous all day, when I think about it I just think that I am supposed to know what I am going to find out. That's really all there is to it.

I had a very nice day today with Bennett. A little shopping, playing, goofing around and watching Dora. Tonight before she fell asleep, she kissed me on the forehead and said I love you momo. I almost cried it was so sweet. What a good life I have.

It's time to send out those warrior prayers and thoughts. I will let you know what happens tomorrow. Eek.

A Nice Quiet Sunday

After all of yesterday's hullaballu, it was nice to have a nice quiet day at home. It was sad to see Elizabeth go this morning, Bennett flatly refused to say goodbye. And after Pat and Eliz. left (Pat had to got to work), Bennett said she was already having a bad day. Too many goodbyes. Luckily there is Alice in Wonderland, which we watched two times in a row. I knitted, Bennett sort of farted around while the TV was on, and then Aunt Ruth suddenly appeared. Thank God. She took B to the park, I got to finish my book, do some online shopping, and generally recoup after yesterday.

My day was good. I got to have it and that's a really great thing. And I get tomorrow, you too. What luck.