Archive for November, 2009

feeling good!

I had to write again tonight after writing the tense post because I am feeling so good right now! No tension, tired yes, but in a good way, because I had a full day, and just plain old content. I want to hold onto these feelings as long as I can.

It was just a simple day, but for me lately, simply great. The three of us got up at various points in the morning and somewhere around noontime we went to one of our favorite gift stores. It’s a fair trade non-profit store that has wonderful things from artisans all over the world. They were having a big sale, 20% everything you can get in a shopping bag, so we went gift shopping! I was able to buy some things for Z. for Hanukkah and Xmas, some she picked out, some she didn’t know I got. Also a couple ornaments for her collection (we buy her one or two every year and when she grows up she will have the start of her own collection for her own tree). This year they were carved out of gourds, one a cat and one an owl, her two favorite animals these days. I also got ourselves a couple of pretty wire ornaments, a star and a snowflake. Also Z. was going to a friend’s bday party and she picked out a small organic chocolate bar and a furry kitten tape measure to go with the Target gift card we had already gotten. Then I went and sat in the car while the two of them shopped, for me mostly! My bday is next week and they were also getting Xmas gifts. They also found something for A.’s dad, which was a nice surprise, I was gearing up for a hard time finding the right gift for him this year.

Afterwards we went out to lunch to one of my favorite places in that neighborhood. I had a grilled cheese (fontina cheese, prosciutto di parma and sliced tomato) sandwich with a cup of glorious chunky cream of tomato soup. Z. had the same thing but had it minus the prosciutto (“mom, just call it ham, I can’t pronounce that!” LOL), and A. had a Thai curry crabcake thing. While Z. and A. were in the gift store they were making friends with some women and a child and shortly after we ordered our food, they came into the restaurant and were seated next to us! So we had a little chat with them before getting our food and settling in on the oohing and ahhing of eating our food.

Later that afternoon Z. had her bday party to go to so we drove her there and left her bouncing on the trampoline they hired for the occasion. Then A. drove him and I to Kohl’s which I have been looking forward to all week. I have lost over 40 pounds (I miscalculated when I said 25 last time, at that point it was over 35 pounds) and my tops are all huge. There are some things I can get by with, but I really needed some new things. I just couldn’t handle the trip out there this week by myself and having A. there was good not only for the driving, but helping me maneuver all the clothes I wanted to try on (there were no carts available till we were maybe half way through shopping).

So I found some great stuff on clearance (including a duplicate of a shirt I had bought a while back that I really loved that was now marked down to $4.80 and was my size now), some other great stuff on their regular sale, and used my 20% off coupon on top. I felt like if I had to buy some new things with the chance that I might gain all the weight back (oh please no, but I’ve been up and down enough in my life to know it could happen) that I wanted clothes I like with low prices. I did good!

Later we had dinner (putting together leftovers from a couple different meals) and even later we all sat down to have dessert, each having a sugar cookie we bought at the bread bakery this morning. I drank some sugar free, decaf chai with my lovely Miralax in it (have to get that Miralax down every day with all the pain meds and most days lately that has been a struggle) and just felt content. A feeling that is all the more so after the anxiousness of yesterday. I don’t know if it will last another day, but I’m so happy for it today.


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Oh, I am so tired of this tension in my body. Mostly my chest but when it’s bad it goes into my legs too. I am pretty sure it’s from the steroids, even though I am weaning from them (this the third week) and hopefully will be off them completely next week, they take their toll. I was told today by the pain management nurse it could be another week or so before I am free from their effects (both good and bad, the good being the pain relief they have supported). I have had anxiety issues in the past and feeling this way is especially hard for me. Brings back bad memories. I know this is different, I know it’s really a physical thing, but it still makes me insane. I tried a couple rescue remedy pastilles, way too far gone for those. I tried an ativan and my pain pill with dessert about an hour or so ago. Nothing happening yet. I thought maybe if I came over to the blog and wrote at least my fingers would be busy.

So, since I last wrote, I’ve been weaning off the steroids like I said, and in spite of the occasional anxious bout (and the last couple nights, the inability to fall asleep too because my chest is anxious, and I’m hungry, last night I actually got out of bed at 1am to eat. I never do that.), I have been slogging through mud this week. Tired isn’t even the word. Tired and anxious at the same time? Try it sometime, not a good combination either.

I did get to my support group again this week (two weeks in a row!) and picked up Z. from school or the bus, brought her to piano lessons. The rest of the time at home. Not doing much, laundry, coming up with some ideas for dinners (not necessarily making them, sometimes helping though, but at least coming up with the ideas with the food we have on hand helps sometimes).

Today I sorted (again) through my mom’s jewelry. I need to sort them into who gets what eventually, but I decided that I would go through first and see what I wanted. Our tastes are not the same, so I figured there wouldn’t be much, but was surprised when I sat down in front of a mirror and tried things on that some things I probably would have passed by actually look good on me. Since I’m the only daughter left I figure it’s okay to chose first. Z. will eventually get everything of mine, so she will probably mainly get some nice pearls (her birthstone) and then fun things, bangles and beads that she can have fun with, and maybe some nice gold charm necklaces. My niece (sorry V.) loses everything, always has, so any nice pieces she gets will have to be put into safe keeping with my SIL. The cheaper stuff she can also play around with and it doesn’t matter if she loses something. Then there are other people to give this or that too (including my SIL N. who probably has the closest taste to my mom’s, and my MIL, I found a few things I think she would like). There’s really nothing super special, no family heirlooms (I already have my grandmother’s jewelry and it was all fake cheap but fun stuff), and my dad has the pieces he finds special. I’m not sure what to do about the boys (my brother and my two nephews), I can’t really see anything at the moment that would have any meaning for them but I’ll keep thinking. It’s not a project that I have to get done by a certain time or anything, so can revisit it as often as I want. That’s how I’ve approached it so far, kind of waves of just sorting and waves of looking more carefully.

Feeling a bit better now. Maybe the ativan is kicking in, maybe talking about the jewelry helped. Who knows?

Patience, I keep telling myself patience. Eventually I will have enough energy to get out of the house and do things. Eventually I’ll have enough energy to do things IN the house too! Eventually my stomach will feel more normal, I’ll be able to drink a glass of water and it will taste good, and eventually my body will be able to handle the caffeine of a couple of mugs of green tea again. Eventually I will not be sitting in the middle of my morning wondering what it is I am doing and why because I’m in this amorphous place that loses meaning sometimes. Eventually I will figure out what normal is, because it has been so long, living with chronic pain for so, so long, and being incapacitated by that and the post radiation and pain med effects that I have no clue what normal is anymore. Eventually things will come together and I will feel more at peace. Patience, I keep telling myself patience.

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This last week has been ones of ups and downs, getting used to the fact that my recuperation from the cyberknife treatment and the slow weaning of pain meds and all will not be a skip in the park. But it’s not bad either, it’s most definitely better than where I was before, not being in such pain all the time is hugely relieving. I also can feel that there is a progression forward. But (I know you’re not supposed to start sentences with “but”, but I can’t help it, it always seems to fit and I am too brain weary to work it out another way) I think I’m a little lost about how to handle the ins and outs sometimes.

So this past week I had a few really good days, energy, positiveness and optimism, stuff like that. I have also had some ick days, sour stomach, a couple of anxiety attacks, being too tired, being too awake, feeling depressed and dreary, etc. So it’s both, and I completely know that this is understandable at this stage and am doing my best to accept where I am at the time. Enjoy when I feel good, and try to cut myself a break when I don’t.

Some of the good stuff. Lots of wonderful mom/daughter bonding moments with Z. I am finding myself so in love with the girl she is right now. Meaning different from the usual strong mom love I always have, it’s like a flirtation (not in a icky way, in an innocent way) as we do girlie mom things together. Like going shoe shopping and her trying on shoes that are too old for her, but give her such a delight (very high-heeled strappy Chinese Laundry sandals which she didn’t get, and very high-heeled more squared heeled and toed black boots on clearance that she did get). She delighted in finding me in the aisles of DSW with another fun pair of purple pointed toe high-heeled boots (a no go, but that wasn’t the point). Then later on in Target she quietly told me she was ready to “move up” a bit in the intimate apparel area. With lack of time and dad being there we only ventured forth a little bit, but will have a girl shop later on together to make that step.

The point was that it just filled my heart to be able to do this with her, for a few reasons. A big one, is I am here to do this with her, I’m alive and while I have had my challenges with mobility lately, I am still working it out with her. She’s open to me, I would never have been this open with my own mother at her age. And after a couple years of such hard-core boy clothes obsession, to have her enjoying her femaleness so much is wonderful. I always hesitate in saying this, because honestly it would be okay if she wasn’t girlie, it really would, but her boy obsession did not feel genuine to me, and this does, so it makes me feel calm and happy to have her exploring something that feels good to her.

There is definitely some issues for her right now about growing up, and some of them came out last week with Halloween and hormonal issues. She had some meltdowns after school and piano lessons, had some worries about this being her last year TOTing for Halloween, stuff like that. (We did talk about how a lot of the middle school kids continued to dress up and go TOTing, they just did it together in groups, not with their parents.) OTOH, she was talking to me about how exciting it was that she was growing up. She also allowed me to express that while I have excitement about that for her too, I’m still her mom, she’ll still always be my baby, so there’s a little sadness mixed in there too. Maybe that helped, I don’t know, for her to know that it’s okay to feel both ways.

Anyway, there’s no question that Z. has been a big part of my happiness lately. Also A., although he is clearly very stressed lately with all that we have been going through, he does seem happy to “have me back” as he puts it. I am trying to balance my needs right now (like some days I just have to get out of this house and into the world, and unfortunately I’m somewhat dependent on him for that if it’s more than a couple blocks from my house) with his. I am making an effort to give him some comfort, while at the same time I may be asking him for some for me.

It’s November, which has been a difficult month for me in recent years. It’s my late sister’s birthday on the 10th, my birthday on the 18th, Thanksgiving, and then the anniversary of my sister’s death the day after (technically the 28th, but the year she died it was the day after Thanksgiving). I used to always get stuck with my mammogram in Nov. too, but this year I discovered that my insurance would let me push it up, just had to be the next calendar year, not a whole year from the last one, so I moved it to October. I think that will help. Halloween day and night was a dreary, wet mess, so while Z. and A. got to go TOTing with umbrellas and Z.’s friends, I stayed home and watched the last couple weeks of Dexter on On Demand (figured a show about a serial killer would be plenty creepy for me) and the after TOTing party I was so looking forward to was washed out. I think I could really have used the socializing, it’s been a long time.

So the medications are the other part of all this. I was put on steroids last week to deal with the radiation flare pain and after a day they kicked in and worked well. I had a lot of energy and clearness at first, which I think was from those. My blood sugars, since I am diabetic, were not happy though. Friday morning and Sunday night I had anxiety attacks, which I am sure have come from the combination of the steroids, and the fact that because I am using the steroids my pain medicine (the oral pills, I still am on the patch) have lessened (they were kind of counteracting the steroid effects by sedating me a bit). I ended up having to take an ativan (sedative) last night to help calm down, but it was not a whole lot of help. Eventually I was able to crawl into bed with the heating pad (I was so cold and couldn’t warm up) and A.’s arm around me and fall asleep and am okay today.

Yesterday, by mistake I ended up decreasing my steroid use to twice a day instead of three as I missed a dose when we went out shopping in the afternoon. This was good or I think I would still be sticking to the ceiling this morning! I talked to the nurse today and the dr. said to wean back to twice a day this week. The nurse said to call earlier though if I felt the need to, otherwise call back next week. My blood sugars were too high this morning, so I can’t wait to get off of the steroids. On the amazing but true side, I have been losing weight like crazy. The nurse was a bit confused because normally steroids have you gain weight. But I do think that sometimes with these things opposite things can happen, metabolism can get wonky. Maybe it’s the high fasting sugars (nothing dangerous mind you, just high, and definitely not my normal numbers), but I have lost almost 10 pounds in the last week or so.  All together it’s been about 25 pounds I think, since early Sept.  Believe me, I really love it! In fact I just hope it stays. Unfortunately about 2 months ago I got rid of any last remaining lower weight clothes, so except for a few things (a few 3/4 length sleeve shirts and a couple yoga pants) I have nothing that really fits well. I am not ready to go buy a whole new wardrobe by any means yet as I have no idea if this will stick. I may gain it all back when the pain meds get weaned, (or the steroids) who knows. My body is just as capable of gaining weight for no particular reason as it is for doing this, in fact more so. Don’t worry though, I have plenty of reserves, so am in no danger of wasting away LOL! Not by a long shot. I am still quite overweight, probably still obese if you look at those stupid charts, but I don’t care. I am happy here and if I could just stay this weight I would not complain! Not to mention that it’s better for my bp (which has been great lately), bs (if I’m not taking steroids of course), and lymphedema.

The last couple things are my vision and the roofers. I’m finding when we got out these last couple of days, that my distance vision is a bit blurry, particularly in low light, and there’s been very little sun. Granted, I’ve been home so much that most of my vision is used with close up and middle distance work (books, computer) not distance. Not completely weird, my old eyes don’t adjust quickly anymore, but I’m wondering about any relation to meds and radiation. I’ve definitely had vision changes with chemo before. Still way too soon to worry, and with our new insurance picking up vision in January I will probably wait till then to get an exam and new glasses, since this could very well be temporary (and would save a whole bunch of money using the insurance than not). So we’ll play that one by ear.

Roofers, those people we seem to keep on a retainer, are here this week. We have been having a roof leak, water dripping in through the kitchen ceiling pretty much through this whole radiation process (and the wait to get to the radiation treatments). It’s a gloomy drag having icky moldy water and plaster and insulation and paint plopping down. A. was trying to avoid ripping the ceiling down, but inevitably the ceiling won out and bonked him in the head the other night, so he had to  pull a big hole down. We’d been on the list for the roofers for a long time and finally we cued up today. So while they are outside and I am inside, it still sounds like I have a crew of roofers in my house, banging away and climbing etc. The area is very close to our bedroom but I still managed to stay in bed for an hour or so while they worked, too tired to get out, but not really sleeping either of course because of the noise. Not sure how long they will be here (and there are other areas of the roof that need work, plus they have some siding on order that they will come back and put on when this is all done) but I’ll probably be dealing with it most of the week. I don’t particularly care for having contractors around the house, especially unglamorous ones like roofers. Are there any glamorous contractors? Naw, just glamorous after effects, like marble bathrooms, definitely not dry roofs, but I will most definitely take a non-leaky kitchen ceiling right now! Only problem is that it will be A. who will have to fix the ceiling afterwards, and that will take time to even begin because we have to let all the joists and such inside the ceiling dry out completely first.

Life goes on!

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