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Archive for October, 2008

better?

After at least a couple of weeks of too much pain, my back feels fine today (with medication of course, I’ve taken 3 ibuprofen and 1 ex tylenol this morning). So of course this morning is my appt. at the osteopath, where he will do his manipulations and I’ll probably feel worse tomorrow. I can’t win. It’s why I don’t know what to do, none of this makes any sense. I was in progressively worse pain for days and days and then boom, I feel fine (granted I’ve been taking 10 ibuprofen and 2 ex tylenol each day for the last week). Don’t get me wrong, I am thrilled to be feeling good finally. Yesterday I felt pretty good too, although I could feel the pain just beneath the surface ready to jump back out the minute I moved the wrong way or looked cross eyed. Today it feels more stable. I feel like I’ve been holding my body in check for so long that it’s an odd feeling to almost feel like I can move more freely (almost, I’m still not trusting it, that pain is always lingering beneath the surface).

Well, I’ll take the good while I can get it but I do wish that I could make more sense out of this. It makes me nervous about making plans, will I be feeling okay that day (or night) or will I be a complete mess? No way to know. Well, keep your fingers crossed that this lull is a long one.

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More of the same

What is it about Mondays? I had another relentless back (and hip and thigh) pain day today (in fact it’s almost 6pm and it’s still not let up) and missed Open Studio again. But every day has been a bad day to some degree for the last couple weeks. I go see the osteopath on Wednesday, I really hope he can help me. This level of pain day after day is too much. I’m not functioning like I need to and it’s exhausting me. I don’t know how much more ibuprofen I can take before I start bleeding out of all my orifices. I’m beginning to think that I won’t be able to do anything that I have planned, like taking Z. trick or treating on Halloween (or the small party we’ve been invited to afterwards), go to my support group, even go to the grocery store. I couldn’t get out to the post office to mail packages today either, but I did get out to pick up Z. from soccer practice (it didn’t require getting out of the car which helped). Sitting hurts, but standing and walking are worse. It really stinks and I am really sick of it. I don’t know how to fix this. Let’s hope the osteopath does.

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Back pain- again

OMG this morning was one of the worst back pain mornings (or afternoons or evenings or nights) ever! I have no idea why. I’ve been in a lot of pain the last few days in general, but I slept fine last night and woke up with just a bit of pain. But by the time I got in the shower I was moaning and that continued through getting dressed and trying to make breakfast (which I have to eat to get the pain meds to work better and also for the whole blood sugar thing, so I moaned through that too). After I finished eating I dragged myself and my tea to my iJoy shiatsu chair (which we bought when I was first diagnosed with endo cancer back in 2004) and did three cycles (one lower back, one full back, and another lower back) for 45 minutes and drank my tea and looked through catalogs. Thankfully it took the edge off and while it still hurts I am able to breathe normally and not moan (good thing I was alone in the house this morning). I am unfortunately skipping my Open Studio class this afternoon as I am feeling precariously on the edge with this pain and afraid that the driving will set me right over it.

Days like this are completely exhausting (and it’s only 12:30pm- I’ve got a long day and evening ahead of me still- later this evening I’m babysitting a friend of Z.’s and her little brother). I am already ready to go back to bed for the rest of the day, but I won’t. Although I’ll probably end up falling asleep sitting up in a chair at some point this afternoon. I’ve promised myself that after lunch I will sit down and do some little artwork thing. If I can’t be there at least I can be doing art at the same time as the others.

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(The first post on our trip is below this one.)

So Sunday morning the plan was to try and get to the National Zoo as soon as we could, so we could see the Giant Panda’s while they were awake. A. went out and got our breakfast while I was getting ready so that saved us a lot of time, but we still had a long Metro ride (with a transfer) and longish walk from the stop to the zoo so it was around 10am by the time we got there. Luckily for us the panda’s were awake and eating. The daddy panda was the most sociable, sitting out and eating bamboo in an area that lots of people could see him. We took a ton of photos of him. The mama panda was hiding behind some bushes so we barely got a look at her. The baby (I think it’s 18 months old now) was in a separate area and spent most of the time we watched hidden (but we could hear it) but came out once or twice for a quick viewing. We spent a long time with the pandas since that was really our main reason for going to the zoo. Z. was very happy to have seen them.

Next we spent time in the bird house, another favorite with Z. From there we stopped and had a quick lunch before heading on to the Amazonia exhibit. Z. wanted to see this because recently in a geography/persuasive argument project she did in school her group had picked the Amazon Jungle as the “Best Place on Earth” (this was based on being dropped down into a place pre-civilization). We also were trying to pick some things that we didn’t have in our own zoo as there was no way we were going to see the whole zoo that day as we had to leave by 2pm to get to the Kennedy Center for a concert at 3pm. We stopped for some gelato and rested (the whole walk back from Amazonia to the entrance to the zoo is uphill. Then Z. wanted to go into the Invertebrate house, so we spent a while in there. We kept walking up the hill and got to the entrance at about 2, so hoped we’d make it to the concert (we were just guessing on time as we had no idea really).

We walked another longish walk to the Metro, transferred trains (with a long wait at the transfer) and when we finally got out of the Metro stop at Foggy Bottom walked right onto the Kennedy Center shuttle bus. Yeah, such good timing! We got there with enough time to use the restrooms and get into our seats with a minute or two to breathe before the show started. We have had a subscription to the Family Orchestra concerts at home for years and had to miss the first one in the series on Saturday because of our trip. So when searching around the internet for things going on in DC for that weekend I found that the National Symphony Orchestra had a family concert that weekend too. I’d never been to the Kennedy Center (A. had been once, but not for the orchestra) nor seen the NSO, so we figured why not. We all enjoyed the concert (it had a couple mime’s playing aliens from space who came in and out throughout the concert, the music was mostly modern American, some Copeland and the last song was the theme to the movie ET), which is only an hour. Z. got a free pencil as we left which said “I went to a concert of the National Symphony Orchestra” or something like that.

So back on the shuttle to go back to Metro and back to the hotel. We were meeting some friends for the evening. This is someone from a mom’s list online that I’ve been on since I was pregnant with Z. We have met this family a number of times over the years, but never on their home turf. Their daughter MZ is basically Z.’s age (a few months younger since Z. was the first one on the list to be born, 11 weeks prematurely). They get along great (they both are avid Pokemon fans) and A. and I really enjoy both the mom M. and dad F’s company.

We went out for dinner first which gave everyone a chance to talk and catch up a bit. After dinner we got into their van and they drove us into DC to the Lincoln Memorial. I had wanted to take a bus tour of the monuments at night while we were there but after realizing that they were really long (2 1/2 or 3 1/2 hours) decided against it, feeling that we’d be way too tired at night to deal with that. So they offered to bring us to some of the memorials instead. The Lincoln Memorial is really beautiful at night. From there we were also able to see the Washington Monument (which we had seen during the day on the Mall). We also saw the WWII monument while driving around. We drove by the Jefferson but it was dark, some problem with the lighting that night I think. We spent a fair amount of time at the Lincoln, including going downstairs into the small exhibition space that I didn’t know existed.

They offered to bring us to some other monuments if we liked but I was happy with having seen the Lincoln (which I had really wanted Z. to see also). We had promised the girls that they could go swimming at the hotel so I wanted to get back in time for them to do that. So back to the hotel where the girls got into their suits and we hung out on the lounge chairs talking while they swam. They closed the pool at 11pm. so we got directions to their house for the next day and went our separate ways.

Monday we slept a bit later (not a whole lot, but enough to make it feel like we did) and got ourselves packed up. We took a long walk to The Corner Bakery (via the underground hallways) for breakfast. It was okay, I was kind of disappointed that it wasn’t better though. After breakfast we went back to our room and got our stuff together and checked out and then drove to our friend’s house in Falls Church, VA.

We had never been to their house, although I had seen some pictures as they had done a big addition a few years back. The girls immediately went off to Pokemon land (MZ probably has more Pokemon stuff than Z., which is no easy feat!). They also played on the WiiFit and took a walk along a creek. A. and I got the tour of the house and the backyard. F. was making Frito pie for lunch (yum!) which is a dish we’ve had in New Mexico. It’s Fritos on the bottom with meat chili and cheese on top. The girls had sandwiches instead. We had a real nice time visiting with them and left to drive home somewhere around 2pm.

So, that’s our trip! It was a nice combination of tourist stuff and friend visiting stuff. Z. really enjoyed both! We’ve been wanting to make this trip for the last three years and I’m really glad that we finally did it. I think we’ll be doing it again as it’s really pretty easy and there is so much to do there and we barely scratched the surface.

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We went on our 4 day trip to DC this past weekend. I am feeling much better than I was with the last post, getting away, a change of scenery and focusing on other things really helped I think. So without the benefit of notes (I forgot my travel journal this trip) I will try to remember our trip.

Friday

We left home by 9am and got to Mt. Vernon (George Washington’s family home) by around noon. Our first stop was lunch at the Mt Vernon Inn. Z. had that famous dish ye olde chicken fingers and fries. A. and I shared a mug of peanut chestnut soup (yum, the creamy peanut soup with the crunch of the chestnuts was really nice). A. ordered a duck cassoulet for his entree and I had the turkey pot pye (sp.) (the inside was good but the “biscuit” on top was horrible, dry, chewy, and pretty much inedible so I left it, but they brought out a couple of corn muffins that were good). We told Z. that later in the afternoon we’d get some ice cream at the food court so no dessert for now.

Off to the Education center where we saw wax models of Washington at different ages (made from using a bust that was supposed to be a very good likeness and computer programs to vary the age). Kind of wax museum like but cool. We saw a short film about George and Martha’s relationship and a multimedia presentation on the Battles of Boston and Trenton that was pretty informative. Lots of stuff to look at but we decided time was getting short and we wanted to move along and see the mansion.

We “stole” a Southern Magnolia leaf from a tree outside the mansion. Z.’s doing a leaf identification project in science and needed a couple more leaves to finish it. She thought it would be pretty cool to have a leaf from Mt. Vernon in her collection.

The line for the mansion tour was very long (I think an entire high school was ahead of us), but we went all the way down there to see it so we waited. After the tour and some pictures on the back lawn (which looks out over the Potomac) and touring most of the outbuildings we headed over to the food court for ice cream. We stopped in the museum for a quick spin before heading out to our hotel in Crystal City (Arlington VA).

The hotel was nice, one of those big convention hotels, and was attached to an underground walkway that connected to underground shops and restaurants and the Metro stop. We had a little snafu as I had gotten the AAA rate online but hadn’t brought my AAA card. I had asked A. as we were leaving the house if he had his and he said yes. Well, at the check-in counter he discovered that what he had was his American Red Cross card not his AAA card. The rack rate was $86 more per night than the AAA rate, but she gave us a discount rate that was $46 more per night. Needless to say I was not happy, but A. made some calls and ended up getting the Roadside Assistance person (the only number that he could get through to since it wasn’t business hours) to give the hotel clerk our number so we got our discount.  

After getting our bags into the room and getting the room rate settled we went to the underground mall and had dinner at the Hamburger Hamlet restaurant. We went back to the room afterwards and watched some show about not forgetting lyrics and the weather on tv and then went to sleep.

Saturday

We got up around 7:30am, got ourselves together and headed back to the underground mall for breakfast. Not much was open (it being the weekend and early) so we ended up with egg sandwiches (and a bagel for Z.) at Dunkin Donuts (whoopee! but A. and I wanted some protein and there were no other choices). Then we took the Metro to the Smithsonian stop in DC.

First we headed into the Smithsonian Castle (which is the information center). I had joined the Smithsonian online a couple weeks earlier but didn’t have a card yet (and there were 10% discounts at the shops and restaurants) so I got a temporary card. Then we went next door to the Ripley Center to see an exhibit called Green Light: A Juried Exhibition of Artists with Disabilities. It was interesting as many of the disabilities were learning types, ADHD, Crohn’s Disease, hearing, etc. Z. was interested in both the work and finding out what each person’s disability was (I did have to explain what some of they where). From there we left to walk across the mall to the Natural History museum, our main destination for the day.

We went right to the new Sant Ocean Hall exhibit which had opened maybe a week or two before. We spent a long time in there as there was a whole lot to look at (but we still didn’t see it all). After a while Z. and I were like, hey, this is kind of weird because everything here is dead! Going to a Natural History museum is a different experience than going to an aquarium or zoo obviously, but for some reason the ocean thing just made it stand out more for us. There was a great movie about taking this special pressurized contraption down to the bottom of the sea where they photographed the sea life down there. Really cool stuff like an octupus they dubbed Dumbo because it had these two fins that looked like Dumbo ears flapping when it swam, and some rainbow light and neon light creatures.

This trip Z. took my camera a lot and took a lot of pictures. In fact much of the trip she was the one wearing the camera case. I think I will have to dig out my old digital next trip for her. It was a little frustrating for me at times not being able to photograph when I wanted, but I want her to have that same freedom. I could always take my digital slr, but when trudging all day it’s often too heavy for me. (My back was bothering me as it was and A. spent much of the day carrying around my backpack purse- in his hands, he didn’t wear it- as it made the pain worse when I wore it. It seemed to ease up a bit by mid afternoon most days though, but mornings were rough.)

So it was lunch time and we were all hungry but we wanted to wait and have lunch somewhere else so we went outside and got a bag of popcorn from a vendor and shared it on the steps to the museum. Afterwards we went back in to the places Z. wanted to see most. First was the Hope diamond. Then we went to the early Western Cultures section that had some Egyptian stuff (including a mummy). Then it was off to lunch.

We walked maybe 5 blocks or so to Rosa Mexicano, a restaurant my SIL had been to in NYC recently and enjoyed. We had a fabulous lunch! Z. had a kid’s cheese quesadilla plate which didn’t have enough quesadillas but it was okay as it left more room for her three scoops of ice cream for dessert. We skipped the chips and guacamole (which was made fresh at each table when ordered) and went right to the meal. I had a chicken taco that was so good. It came separated so you made it yourself and each part of the fixings was excellent, including the somewhat mini corn tortillas. A. had a mole dish that I can’t remember (and the menu portion of their website is not working at the moment) which he said was really good. For dessert A. and Z. had the three scoops of ice cream, Z. had 2 vanilla’s and 1 peanut crunch. A. had 1 raspberry rosa (which tasted like it had rose in it- really good), Mexican chocolate (oh my, yum!) and vanilla mole. I had apple empanadas which had two small apple filled empanadas with a scoop of vanilla mole ice cream and and a small dish with the most incredible chocolate sauce in it (it must have been Ibarra chocolate- cinnamon, sugar, chocolate- plus maybe a smidge of chile? but not enough to make it hot). I practically licked the little bowl to get every last drop of sauce LOL.

They had individually wrapped small circles of Ibarra chocolate near the door so as we left Z. made sure that we all got some. I didn’t think she’d like it (although these circles are sweeter, meant for eating not baking or making hot chocolate with like the table chocolate, it’s grainy in texture) and sure enough, one bite and she handed it back to us. I put them all in my purse and we went across the street to the National Portrait Gallery.

There were two shows there that I was interested in seeing. One was a Georgia O’Keefe & Ansel Adams show which we went to first. It was really wonderful, I saw a number of O’Keefe’s that I have never seen before (and some Adams for that matter). We bought the expensive hardcover book from the show (with my temporary Smithsonian member card discount of course) as I really want to spend some time looking at the paintings (and photographs) again. I think the show has since closed, so our timing was good.

Then we went upstairs to see Women of Our Time- 20th Century photographs (that one had just opened on Friday, so again we had good timing). I wanted Z. to see this, and it struck me as we went through it how A. and I knew who pretty much every woman photographed was but Z. probably knew less than 25% of them. She did spend time reading the info cards next to the photographs (not every one, but a lot of them, she loves reading the info cards next to any kind of museum exhibit) and I noticed her spending some extra time at some (Rosa Parks and the nurse who developed the Apgar score system for newborns- later we told her how even though she was born 11 weeks early she actually had good Apgar scores). As we made our way through the museum towards the exit we found an interesting piece. It took us a while to figure it out (eventually A. read the info card, always helps). It was a big wall piece that had license plates from all 50 states. At first it made no sense as each plate had what seemed like a random assortment of letters and numbers. But then when A. read the info card we realized that it was the preamble to the Constitution. Very cool!

At this point all of us had sore feet, in fact I was having some kind of weird cramping thing in one heel (which bothered me on and off for the rest of the trip). We walked what seemed like a long walk back to the Natural History museum as we promised Z. a trip to the museum store. What she decided she wanted was a small replica of the Rosetta Stone so we got that and then went across the hall for a small shared snack and a drink in the museum cafe. Then we walked back to the Metro and went back to our hotel where we all collapsed on the beds, happy to put our feet up.

Eventually hunger won out and we got ourselves off the beds and walked through a maze of underground hallways to another underground mall looking for a decent restaurant that was open. It ended up being a very long walk but eventually we found ourselves at Ted’s Montana Grill (we’d never eaten at one before) and even though it was a 45 minute wait we sat ourselves down and waited as we were too tired to move. The place was packed and noisy but we got a booth in the back that made us feel a bit removed from the activity so that was nice. A. had a steak, I had a Cobb salad with grilled chicken and Z. had chicken fingers (again, seems like that is what she always orders- although the night before she did have a burger, mainly at my urging since we were at a burger restaurant). Z. had a big snickerdoodle cookie for dessert, which we had to wait 10 minutes for because they baked it to order. We trudged back to the hotel (somehow it seemed a little bit easier going back, maybe because we were fed).

We went to bed pretty quickly once we got back. The beds were so comfy, down pillows and comforters, comfortable mattresses, so it felt really good to get in them. Not quite as good as home, but close!

(I’ll post about Sunday & Monday in a separate post.)

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Blogger’s block

It’s been a while since I’ve written here. Not that I haven’t thought about it, but I have not had anything I felt I really wanted to say. I’ve been in a weird state of mind since my test results. Not depressed exactly, but certainly not happy either. You’d think I’d be happy, I got another 3 month reprieve. But I’m weary I think. Weary of these quarterly scans and the anxiety they provoke for me and A. Weary of the damn back pain which ebbs and flows but has been bothering me more lately. Weary of all the other health issues which I am reminded of every day as I take various readings. Weary of some issues that Z. is having (that I have chosen not to write about here for her privacy’s sake- she’s doing very well in most ways right now though).

Life goes on though. We are busy with school activities and volunteering, projects around the house, planning our upcoming trip to DC, etc. But in between I find myself feeling kind of flat. I’m not thinking bad thoughts or anything like that, but I’m not thinking good ones either. It kind of feels like I’m on pause. I’ve been trying to wrap my head around this living with cancer thing, and not doing very well with it. It’s like I think there is actually an answer, a way to live this way, but I’m stymied as to how, except to just do it of course. One foot in front of the other has always been my way, but for some reason that doesn’t seem good enough right now.

I think I need to get a different perspective on this. You know when you are first diagnosed with cancer it’s terrifying and all that, but you also go into fight mode. You energize yourself to get through the treatments because you are being fueled by the hope that you will beat it, that the cancer will go away and that you might get your life back. When you have a recurrence the rug is pulled out from under that hope. Basically the medical world says to you, okay, now that you have had a recurrence there is no hope of a “cure” (a very loaded word of which I have some issues with but will use for the sake of this discussion). Your best hope now is to live with the disease. The drs. are happy with my stable reports because that means I am not getting worse right now. But dammit I want it gone! My intellect can understand the realities all it wants, but my spirit wants to be free of this disease and all that it brings to our family.

The likelihood is that it won’t be gone, or even if it does go for a while, it will come back and eventually get worse. I guess what I feel that this recurrence has taken from me is some hope. Not all hope, but that big hope that I can beat this, like I did with my first cancer (and don’t write and tell me that because I’ve done it once I can do it again, it’s a whole different thing beating a primary cancer than beating a recurrence that is not in the same place as the original cancer). Both A. and I are having a hard time with this. It’s our reality, we have to come to terms with it, but it’s hitting us in a different way (this whole hoping for stable thing, and what it means if it’s not) than it did when the recurrence was first diagnosed.

In the meantime I am frustrated with how I have been feeling because I am wasting time! I am not doing chemo and besides the back pain I am basically functional (the back pain does take away some of my functionality but I can still do a lot). So sitting around feeling blue about not having a remission is a waste of precious time. What has gotten me through all these years (it’s been 10 years now since my first cancer diagnosis) has been the ability to see the good things in my life, really see them (I know them of course, but it’s different than a daily awareness of them). Feeling that slip, even a little, has me upset.

The reality is though that I have felt this way before, after my initial treatment for this cancer was finished I went through a fairly long funk, feeling betrayed by my body and gaining a lot of weight because I figured what was the point. A lot of people like to hold me up as being so strong and positive, but I’m not really. I struggle with this stuff every day, it’s just some days I’m better at projecting those qualities. I guess this isn’t one of them.

I think partly I’ve just been holding all this stuff inside. Who do I talk to about it? I did bring it up a little in my support group yesterday, but with a group of people it’s hard to get more than a minute or two to talk if you’re lucky so it’s more like a statement than a discussion. And how can anyone else I know understand? Thankfully they are not in this position and hopefully never will understand how I feel. They all have their own busy lives. I don’t think they understand the urgency I feel when months go by without seeing them. People think they have all the time in the world ahead of them. I know that I don’t.

Well, I guess I’m unblocked! Maybe writing all this down will help me get past it faster. It usually helps, which is why I have this blog. Cyber therapy!

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