Archive for December, 2009

scan tomorrow

Ends up I’m having my ct-scan early tomorrow (Thursday) morning. I also saw my internist and started some blood sugar meds, different ones than I would have used if I wasn’t having the scan as the preferable one interferes with the kidney stress the dye causes. I have to take my regular steroids along with the pre-med steroids (for my iv contrast allergy), have to time my pain meds with the fasting, drink barium, etc. I have a whole page list of times 2 to 3 or so hours apart with what I have to do and take from  about 10pm (actually I started it all at 5pm, my next thing is at 10 pm) till we get there at 7am. Not much sleep for me tonight.

I am hoping to find out the results of the scan tomorrow afternoon, but we’ll see. The issue is my med onc (actually his fellow) is ordering the scan but the dr. is not in this week. Pain management will get the results but can’t be the ones to tell me but they need to consult with me because depending on the results of the scan my medications I take may be changed. The pain management nurse said she’d make sure someone who was authorized to tell me would call me. (I am getting so frustrated, all the meds I am taking is making it hard to type accurately so I have mistyped every other word and I am ready to throw the keyboard across the room). Anyway, hopefully I will know what is going on and hopefully my NY’s will be a lot better than my Xmas was.

Trying to tame the blood sugars is annoying, especially since I am a stress eater so not knowing what to eat (since it seems everything makes them too high but low carb vegetables and yuck, not exactly comfort food). I have to snack constantly as all the different meds (taken at different times) cause me nausea or upset stomach. Fun!

The pain thing has been up and down, but today was tolerable. It’s much harder to deal with all this stuff and pain too, so getting it down to just some discomfort is helpful. I find myself wanting to get things done, organizing, throwing out things, and getting pissy about how much crap we have lying around for what seems like years that no one seems to notice except me. Cranky? Yeah a little 🙂

So, I will find out one of two things from the scan according to the fellow. Either I have had tumor progression (and will need to start chemo) or have inflammation from all the radiation (probably made worse by my previous radiation) in which case I will probably need to try some nerve pain drugs like neurontin as it’s obvious I can’t be on steroids much longer. Good news with the steroids though is like last time I am dropping weight like crazy (6 pounds since Saturday), too bad it doesn’t last and comes back on fast.

Well off to take my blood sugar levels and figure out a snack so I can take my regular steroids.


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So the plan as of today is to see my med onc next Wed the 6th (waiting to be called by scheduling for the exact time, but it will likely be a PITA because of Z.’s getting out school and piano lesson’s that afternoon so A. will have to handle that and won’t be able to come to my appt. with me). Meanwhile continue steroids 3x/day till they call me later this week with instructions to go down to 2x/day. I was told to see my internist asap about my blood sugars. I emailed him with the details of what’s going on but have to call at 7am tomorrow as they only have same day appts. left (A. will probably make that call as I am incoherent that time of morning). Obviously medication will be needed (I am not on any now) but my dad calmed some of my fears about that by telling me of his experiences with levels this high when he was first diagnosed and how quickly the numbers came down with one pill. Let’s hope, I have visions of insulin in my mind, pills are certainly easier, but I will find out more about that tomorrow.

I really hate this whole thing, but my pain is lessening a bit and I just took my 2nd steroid pill for the day and hopefully that will work at lessening it even more. If my pain is low then I handle this all a whole lot better. And Z. is happier because my not having to run off to appts. and scans this week means she can schedule some hang out time with her friend(s) easier this week. So far she’s handling this all well, but it makes me feel a whole lot better if I can keep her life running smoothly and happier.

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Pain and limbo once again

Well it’s another twist on the cancer journey. I had been doing so well, the pain had lessened while on the steroids and had increased a bit after weaning off the steroids. Last week I began to feel some slight pain increase, but barely, until Thursday when it came back strongly. We had spent the day with A.’s parents and brother at the art museum and I began to have a hard time walking around as the pain was in my lower back going into my hip and down to my knee. Xmas day was horrible, pretty much up to the 10 on the pain scale. So when I woke up the following day (Saturday) I called pain management and talked to the nurse on call who called my pain management dr. They put me back on the steroids, told me to put on a 2nd fentanyl patch (so doubled it) and use up to 2 dilaudid’s every 4 hours. It didn’t really kick in too well that day but I had a wonderful day on Sunday. This was great because we had friends over for brunch and I was really able to enjoy myself.

However my blood sugars, which had never gone back down from the previous round of steroids doubled into scary territory. To make matters worse I woke up in a lot of pain again this morning. Granted I don’t think I took enough steroids yesterday, I am trying to keep track of my dosages by writing things down but I still managed to miss a dose as I found a pill sitting on the pad. The steroids make me a bit jittery and so my concentration isn’t the best. Anyway I am in limbo now, waiting to see what the next step is. I talked to the nurse again this morning and she is contacting the rest of my oncologists to see what they want to do now.

Likely they will want to move up my scan (scheduled for the end of the month) to see why the pain came back. Needless to say I am scared right now. Is the tumor growing? Or as A. in his non-medical opinion right that maybe the fact that the area has been re-radiated that there is nerve damage? Will they even be able to tell with a scan right now? The radiation mucks up the scans for a bit as it is still doing it’s thing.

I haven’t sent out any holiday cards, we were late to begin with as we were so busy this month. I did print out a hundred photos of Zoe so will likely send out some kind of note with them in the next week or two. So if you’re someone who normally gets cards from us don’t feel personally neglected, I’ve neglected everyone 🙂

I’m sitting here with my microwave heating pad on top of my lumbar massage roll thingy which is making my pain manageable until I eat lunch and can take more pain pills (which is about now actually, so I will sign off here).

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Snow, snow, snow

Best laid plans and all that. It’s been snowing all day since before we got up this morning. I think we’re supposed to get a foot to a foot and a half, although honestly I haven’t checked the weather since before going to bed last night. We found out yesterday afternoon that our friends decided to cancel the holiday party tonight. Z. still wanted to go to her grandparents house for an overnight, but once we found it out wasn’t going to be 3 to 6 inches we said no way. A.’s father called a little while ago worried that we wouldn’t be able to make it tomorrow afternoon for our Hanukkah celebration but A. said that he was sure we’d be dug out by then and that it wasn’t supposed to snow tomorrow. We’ll see how it goes.

Meanwhile A. and I just finished part one of the brisket making (it’s in the oven now, for many hours). It’ll be in the fridge overnight and assuming we get out of here tomorrow we’ll bring it with us and finish part two (or is it part three? part two being the overnight in the refrigerator?) to his parents house and finish it up there (a little warming of the sauce, slicing the brisket and putting the whole thing in the oven). Hopefully this will be good but from the smells so far I think it’s going to be. It’s a new recipe for us, from America’s Test Kitchen, and should be much less sweet than the recipe we’ve been using for years. It has a ton of gorgeous onion slices, herbs and red wine. Yum!

So we had a great time with my friend from out of town yesterday. First we picked her up at her hotel and then went to our old neighborhood for lunch at a Vietnamese restaurant. We decided to try a different one from our usual and it was very good. In fact I like it better than the other one. We had a lunch with lots of skinny rice noodles and grilled pork slices and grilled pork meatballs, basil and other greens, and spring rolls. A. had a giant bowl of noodle soup. We took enough home for A. and I to have lunch today (actually there’s enough for another small lunch for one I think).

Then we moved the car about a block (I was worried about the 2 hour parking spot we had) and walked to the “Italian” market (much more multi-cultural these days with many Asian and Mexican vendors). We stopped at the cheese shop we used to go to all the time and got a big round of fresh smoked mozzarella and a tub of gorganzola cheese spread. Then on to the pasta shop for some cheese ravioli, both the regular and the whole wheat kinds. We then went to a coffee shop for coffee, hot chocolate and cute tiny biscotti half dipped in chocolate, yum! From there we walked through the produce stands and went to the butcher to buy our 6 1/2 pound brisket (they only sell it as a whole piece, this was the smallest one they had but there is nothing wrong with leftover brisket!). Such a good deal, about $22, when I was at Whole Foods it was $6 a pound so would have been almost $40. As we headed back to the car we stopped and picked up some pomegranates, 3 for $2 (again at Whole Foods they were $2.99 each).

Back to the car to drive to our house. My friend and I hung out (and toured the house) while A. went to get Z. at the bus stop. We hung out talking some more until we were all hungry for dinner. We went to the place up the street that is a micro brewery and serves wood fired oven “flatbreads”, pizza is what I call it but with that really nice thin crispy crust and lots of very interesting toppings. In fact you have to order off the menu to get a normal cheese and tomato sauce (with or without pepperoni) pizza. The kinds kid like (and many grownups do too, but we never order it for ourselves). It’s called a Little Joe or a Big Joe (depending on what size you want). We got one of those with pepperoni for Z., and then ordered three different ones for the three of us to share. One was a special that night, fig spread, goat cheese, proscuitto and a bit of fresh arugula with vinaigrette thrown into the center of it  after it came out of the oven. The second was a seed pizza, a white pizza with garlic paste, cheese, various seeds like pumpkin (I can’t remember the others, it was really good and was my favorite of the three). The third was a Mexican style, with peppers and a side of guacamole and salsa. I put a little of the guacamole on my slice which I thought was good, it tamed the heat a bit. I usually get red wine but decided to get a small beer (one of theirs, some kind of ale) instead. I enjoyed it but didn’t finish it all (it was a 13 oz glass). What with the pain pills I take  I have to be careful not to drink too much, but it sure tasted good with the pizzas.

We went back to our house and hung out for hours more talking. By the time A. brought my friend back to her hotel I was losing my voice LOL! I stayed up a bit and then got ready for bed. A. got back and of course was into bed and practically asleep before I even was ready. That’s what I get for being nice and waiting for him, I should have gotten started right away, but I didn’t want him to come home to me snoring away 🙂

I’m so tired today, but I did get my voice back. I finished sewing Z.’s pillow and stuffed it and it looked really cute. Then I decided to take some fabric paint and squeezes lines around the fabric pieces I had glued. They needed something to keep them down and from fraying. I am not sure I like the results, I think I may have ruined it. We’ll see. It ends up that the paint I used it puff paint. If I put some heat to it tomorrow it will puff up. I’m not sure if that will make it look better or worse. Well, it is what it is I guess. It really was cute before I put the paint on. I’ll take some photos, I should have done a before paint one, but I’ll do one before I puff it (if I decide to puff it).

Well, A.’s sound asleep on the chair in the office while Z. and I click and clack on our computer keyboards. Next A. and I have to get upstairs and wrap presents, mostly for Hanukkah for his family tomorrow, but we also have all of Z.’s (and also the gifts for each other) to do. I think I need a slice of that smoked mozzarella for sustenance first!!

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Pillows and pie

I finally got to making the owl pillow for Z. today. I have been wanting to give Z. a homemade gift for Xmas but time has really been getting away from me this year (I still haven’t done holiday cards but they are coming, eventually). I had a few hours this afternoon and it’s pretty much my last chance to get it done while she’s in school. She has school tomorrow but I am busy with a friend from out of town. Starting Monday Z. is off school for a couple of weeks.

So I am really not much of a seamstress, but I’d been seeing these cute owl pillows on etsy.com. I printed out a page of my favorites and used it as a guide, taking a little from this or that one and putting it together with my own ideas to create the design. I cut out all the fabric and began with the thought of sewing the various pieces onto the fabric I had cut out in the owl shape when I realized that I would be sewing for days. So I scrounged up an ancient bottle of Sew No More fabric glue and glued the pieces instead. First I had to put glue on the backs and let it dry a half hour. Then I put on more glue and glued them down to the main fabric. Now I am supposed to leave it be for 24 hours. Since I am busy tomorrow anyway that brings me to Saturday. I should have a couple hours when A. brings Z. to his parents house for a sleepover. We’re going to a grown up party Saturday night so this is our babysitting.

We are going to spend the afternoon on Saturday making brisket for our Hanukkah celebration with his family on Sunday (late I know, but it was what worked best for everyone). Normally A.’s mom makes the brisket, with a recipe I had found on the internet years ago. It’s a crockpot version of a Coca-Cola brisket. It tastes great, but has a lot of sugary ingredients. I found a video recipe on America’s Test Kitchen (which appears to be premium content now, when we saw it was free) for a brisket that doesn’t have all that sugar in it and A. and I decided we wanted to try it. So we’ll make it Saturday afternoon and then bring it on Sunday and reheat it there. It requires an overnight sit but we do that with brisket anyway.

Monday we have a Solstice party to go to and I am going to make a Maple Pecan Pie (Ken Haedrich’s recipe). I made one last weekend for a party we went to last Saturday night and A. and I got a tiny piece, about 2 bites worth. It was eaten up so quickly that most people didn’t get a piece or a bite at all. It’s pretty easy to make but I don’t like to make it for the three of us because it’s so calorie intensive, so making it for a party is the only way I make it (usually only once a year at that).

I’m really enjoying all the socializing this holiday season, probably because I have spent so much time by myself these last few months. It feels really good to be with people. Even though all the baking and cooking and gift shopping and gift making can be exhausting I am still enjoying it. I’m glad that I am feeling well enough to do all these things. I just have to make sure I get enough sleep and I’m okay. Sleep is super important for me these days.

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When in doubt reboot!

I went to my 2 month check in (I mean up?) with my pain management dr. today. It was my first dr. appt. since finishing the cyberknife I think. He was happy, said I looked a whole lot better than the last time I saw him, which was a couple days before starting cyberknife and a couple days before feeling the worst pain I have felt so far in my life. I was telling him that I was trying not to worry that I wasn’t feeling better than I do by now, and he told me that compared to where I was before the cyberknife I really am doing a lot better. So, it was a good perspective kind of thing for me.

I found myself feeling body anxiety today before going. I realized that it was the first dr. appt. in a long time (ha! 1 1/2 months, but for me lately that’s a LONG time) and even though it wasn’t a scan or results or to talk about treatment or anything like that, it was still going to the dr. and going to the cancer hospital and seeing an oncologist (which he is, in addition to being the pain dr.). It just triggers the anxiety thing. Like my blood pressure, which has been in the 100’s (averaging about 105) over 70 (high 60’s to mid 70’s) for a while now when I take it at home, was 150 over 84. Whatever!

So after the appt. I went to Walgreen’s to use my $5 off of $5 coupon I got last time I was there and bought my darling Z. a nail polish writing thing-a-ma-gig. She  has been trying to write letters (one letter on each nail to spell words, like “I love my cat”) with the really thin brush nail polishes she got from my SIL, but even those are hard sometimes to get clear letters. This thing is more like a marker with a pointy tip, should work well I think. And there was no way I was paying $8 for it, so for $3 it was worth a try.

Then off to Whole Foods to pick up a few things that turned into 5 bags of course. Then to the drugstore to fill my three prescriptions. Then home. When at the hospital and when I left the drugstore I tried to call A. on my iphone but was getting no service. At the hospital I chalked it up to it being the hospital, but it was weird not to have service in the neighborhood. I got home and called AT&T and he had me shut the phone off completely and back on again and voila, I had service. So the computer mantra, when in doubt reboot, applies to iphones too (and dishwashers, once in a blue moon we have to turn the circuit breaker off to our dishwasher for a little while and then back on to get it to work properly).

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Been awhile

I don’t know why I haven’t posted in ages, time just seems to get away from me. Since the last post I’ve turned 52, gone off the steroids, had a wonderful Thanksgiving (and early Xmas) with my family, had an increase in pain as the steroids wore off, gained 10 pounds back that I had lost very quickly while on the steroids, got my normal vision back about 5 days after stopping the steroids, figured out a pain med combo that has gotten me back to hardly feeling any pain (whew!), done almost all of my Xmas and Hanukkah shopping, and a lot of other things but those are the headlines. I don’t really feel like going back and writing about the past so I’ll just write about the present.

A. is out tonight playing the piano accompaniment for Z.’s school’s Lower School winter concert (he plays the piano for the concerts twice a year, sometimes for musicals although in recent years they have tried using recorded accompaniments, and various little performances that crop up during the school year). Z. and I are both at the computer listening to Allison Iraheta’s debut album on iTunes on my computer (Z. bought the deluxe album on pre-order with some of her iTunes gift cards she has gotten as gifts). I am also printing out the digital booklet for her (it’s the thing she would have gotten in the cd if she had bought the hard copy- a bonus for pre-ordering the deluxe version). While I would not have bought the album myself I have to say I am enjoying it. Right now we are listening to the Spanish version of Friday I’ll Be Over U (El Viernes Te Olvido Yo), another deluxe pre-order bonus (another is a short video).

I went to my Wellness Community support group today. I have really been getting a lot out of going lately. It doesn’t really matter if I talk much, (I always talk LOL, just not always about myself) it just gives me strength.

I am glad I have pretty much all of my holiday shopping done. I have done most of it online as I have not been up to driving to stores and shopping by myself yet. I still don’t have the stamina. Add the holiday crowds to that and forget about it. There have been some really good coupon codes and deals online so I’ve managed pretty well. In fact I just ordered something tonight from amazon and have gotten an email that it’s shipped already! Z. and I were looking at snail mail catalogs tonight and found something she wanted to give her dad and amazon had it for almost half the price of the pricey catalog. I love saving money!

One thing that is beginning to happen now that my head is clearing (and my vision too!) and my body is feeling better (although I am still quite tired and sleepy, probably from the pain meds) is that I can start to feel my ability to concentrate coming back. While I have pretty much finished shopping for Z., I am seriously  thinking about making her a gift. Last year I did two watercolor crayon drawings of owls for her. She’s still very much into owls (and is getting a lot of cool owl stuff that I found) so I was thinking of making her an owl shaped throw pillow. I am not much of a seamstress, but I think I might be able to handle this. I have seen a lot of owl pillows on etsy.com and while I won’t copy any of them, I do think I will use them for inspiration and any technical knowledge I can glean from looking at them. I have loads of odds and ends fabric that I can chose from so I don’t think I’ll even need to go fabric shopping. Now I just need to get myself started on it!

Okay, now that I have jumped in and posted after a few weeks of meaning to, hopefully I will just jump in and post more often!

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