Archive for March, 2010

soda bread

Last week I made soda bread, not once but twice! I made a semi-traditional loaf on Wed. for St. Patrick’s Day. It was a combo of white flour, white whole wheat flour and a little oat flour (for moisture) with caraway seeds and raisins. On Friday I made a less traditional loaf with spelt flour and muesil (pictured above). Both loaves used buttermilk, but the spelt loaf also had butter and egg. The first loaf came out really good, moist and the combo of caraway and raisin flavor was really good (it also called for a little bit of brown sugar which I substituted with agave nectar). Slathered with butter (a must for soda breads) it was yummy and was gobbled up quickly. The 2nd loaf came out somewhat dry and not sweet. It tasted very good, but was a bit crumbly and did well to not only have the slathering of butter but also a dollop of mild preserves like apricot preserves or orange marmalade. I love making soda breads as they are so easy and taste so good. I think I am going to work on some kind of hybrid of the two loaves so that I can get the benefit of the whole grain and muesli but with a moister and maybe slightly sweeter bread.

Here are links to the original recipes I used which I got from various blogs online.

Irish Soda Bread with Raisins (I used Nic’s flour combination)

Muesli Soda Bread (I have made it with spelt, or with whole wheat, with buttermilk or with yogurt, I usually used Bob’s Mill’s Muesli)


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crazy afternoon

Yesterday afternoon was an example of how crazy the whole narcotics prescription rules can get for me at times. I had to get a new script for my breakthrough pain meds because my previous script was for when I was taking one pill at a time and in the last couple weeks that has gone up to three at a time. I can only get one script at a time, no refills, no calling in so I either have to go pick up the script or have it mailed to me and this time I needed to pick it up because I was within a couple days of running out. Running out is a complete disaster. I need these pills, not because I am addicted to them (it doesn’t work quite the same way when you are using narcotics for cancer pain) but because I can not survive without the pain relief. I would have to be admitted into the hospital most likely.

So thankfully I was doing pretty well yesterday, drove myself to my support group in the afternoon and then went from there to pick up Z. at school. Then we drove to the hospital to pick up the script. After that we stopped at Target to make a return and do a little shopping. Z. needed some new bras and we had some fun mother daughter moments in the dressing room. She is very private and insists that I close my eyes so that I don’t see her private parts. I insist that I can divert my eyes without actually having to close them. She fusses and I say it’s okay, I can’t see you. LOL. So Z. says to me, I hope that when I am 50 years old I won’t look like you. Now you might think this was an insult, but I know it wasn’t meant to be. It’s more her concern that she be like me, have my health concerns and the more negative physical attributes in her mind (like weight and being short) and wanting to be her own person. I assured her that she was not going to look just like me, that I didn’t look just like my own mother etc. I found the whole exchange kind of sweet actually (I know, I’m weird).

We had fun roaming around the store picking up little things here and there. We left to go fill my dilaudid prescription and that is when the afternoon got really long. I stopped at the first CVS on the way home. I needed 240 4mg pills, but I would take a partial script because I had only enough to get through the next day, barely. The problem with a partial script is that I can’t get the rest of the pills without a new script. So that means waiting until the time frame (something like one week ahead is the most I can fill it, this is a law thing, plus then the insurance company has their own rules about timing) and getting a new script and either driving back out there (about a 25 minute drive one way) and picking it up, or if I want to take the extra few days do the postal service gamble of having it mailed. But for right now, I didn’t have any time to wait for the pharmacy to order it, so needed at least something. So, they don’t have it and they won’t call the other pharmacy I usually go to to check.

So Z. and I drive to the next one and they don’t have it. They are much nicer and more helpful there and they tell me that if I order it I won’t get it till next week. Obviously that won’t work. They very nicely offered to call around and she called 3 other local CVS pharmacies for me, all of them are out, none of them have partials. She suggest I try some other pharmacies like Rite Aid. So we get back in the car and drive to the nearest Rite Aid. They don’t have any either and he says they aren’t allowed to call their other pharmacies for narcotics and gives me the address of the nearest Rite Aid.

Meanwhile now it’s getting late. I am getting way past due my next pain pill, have no food or snacks left to eat so that I can take any. Now from here I realize that I could have stopped and bought a snack and some water and done so, but it honestly didn’t cross my mind at the time. I was completely focused on the fact that I needed to find these damn pills. I decided that I would try one more place and if they didn’t have it we would go home, have dinner and then spend the rest of the night driving around the state until we found the damn things!

Z. has been extremely patient with all of this. She has been talking to me the entire afternoon about school, friends, her feelings, her writing, etc. and has been perfectly delightful. Thank god or I would have been a complete mess at this point otherwise. I just don’t have the energy for all of this, I’m not sure I could have handled all the driving around the city, shopping at Target and then going to various drugstores and getting in and out of the car and dealing with lines and pharmacists if I had been by myself. Her energy made it easier for me. At one point though towards the end she did ask me if I was interested in what she was saying (she was talking pretty much non-stop at this point) and I explained to her that I was, but that I was distracted by all that I was doing and why it was so important that I get the pills.

So after Rite Aid I’m thinking that going to city pharmacies might be making this harder. For example I know from experience that the nearest CVS to my house never has narcotics in stock, which is why I don’t even bother going there anymore and go to the next neighborhood store first (a “nicer” neighborhood). So I decide to drive to a Walgreens that is over the city line in the burbs and try that. They end up having 104 pills and I say that’s great, I’ll take it! Initially the pharmacist was a little cautious and skeptical about me, it’s a lot of pain meds, could kill a horse and all that, but it’s what my body needs to deal with the level of pain I have. He called me back to talk to him about it and after talking to me to make sure I was used to this level started to warm up. I explained to him about my problem finding the pills and he told me about a pharmacist near my hospital that deals with the drs. there all the time. He said, not that he didn’t want my business but that I might have better luck getting narcotics there. So I will have to check it out and see if my insurance pays there (they seem to pay at all the major places, this one is something called a Medicine Shoppe I think, not something I’m familiar with). I also have to call pain management later this week and explain the pill count situation and find out exactly when I can call for another script and hope that I am not going through this again next time. I get new scripts for two narcotics (pills and the patches) 1 to 2 or sometimes more times a month and I never know when I’m going to be stuck not being able to get them. Just adds to the anxiety loop.

We got home around 7:30pm I think, exhausted, thankfully I was calling A. while we were out and he had dinner almost ready to eat when we got in the door. Z. had started her homework in the car and was really good about getting it done and doing her piano practice without complaining. I was really tired and spent the evening on the couch watching tv. I stayed up fairly late though so I could have my last round of pain pills before bed and both A. and I were so tired that we forgot that it was the night to change my pain patches. Oops!

I woke up at 6am this morning in a lot of pain, got up and made breakfast, took my pills, took a shower and got dressed, realized that I needed new patches and that was why I was moaning so loud and couldn’t get any pain relief. A. came up and helped me put the patches on (we find it goes much smoother with two people, otherwise it’s very easy to screw up the edges of both the pain patches and the Tegaderm bandage that goes over them). Then I went up to the 3rd floor guest room and got on top of the bed with a blanket, my electric heating pad, some pillows and my laptop and laid there playing computer games until the pain receded enough that I could fall back asleep (I did all this because we had someone coming to clean this morning and I needed to be out of the bedroom and master bathroom). I’ve been going back to bed like this (minus the showering and dressing part and I go into my own bed instead) almost every morning the last week or so. I just really need the sleep but if I try to sleep through the pain forget it (if I can even do it, it has to be fairly low to be able to sleep through it at all), I can’t get a handle on it when I get up. I have found that just getting up and showering and dressing before eating (which is my normal routine) sends me into the stratosphere of pain by the time I get to breakfast. The reason that I normally shower and dress immediately upon rising is because of the lymphedema in my legs. I need to get my compression stockings on asap once I stand up, so if I do get up and eat breakfast I have to lay down for at least 15 minutes with my feet up before putting the stockings on. Easier to just get up and get them on as soon as I am able.

Anyway, the point of my post wasn’t really to be about my morning routines, but more about the crazy afternoon and how I got through it. A week ago I just wouldn’t have been able to do this. So while I am still taking a lot of pain pills and not “myself” yet it’s good to know that I have more energy and could handle what I needed to do. I also really enjoyed my time with Z. throughout the whole thing. I think we’re into another nice period together again and I really love when we can talk. I treated her to some makeup items at a couple of the pharmacies (initially telling her that she could pay for them with her allowance, but later after telling her how appreciative I was that she was so patient with all that we had to do that I was treating her to them). I will admit that while seeing her with eye shadow, eyeliner and mascara is a bit much for me, I would much rather be a part of it. She asks me for advice, how to apply, if it looks good etc. so I can try to get a little of my two cents on how to tone it down a bit in there 🙂 Even though I never wore make up in public at her age I was very much into experimenting with it at home. So I can totally relate to the fascination 🙂

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It’s been a bit rough these last few weeks. It started with going off the steroids completely. I did pretty well the first week however my pain was increasing and I was taking more breakthrough pain meds. Then when I hit the 2nd week and the pain increased *a lot* which I think was also exacerbated by the fact that I had my “big” scan coming up and the anxiety that that brings. So at the end of week 2 of being off the steroids I got the news that my scan was pretty good and started back up on the steroids again. Not at a high dose, in fact there was some messing up on my part with the dose. My dr. initially prescribed me to take the lowest dose (2mg) that I been taking when I stopped 2 weeks before (I had only been taking that dose for a week though, the previous 3 or so weeks I had been taking 4 mg and that was the size pills I had). Because of some empty-headed confusion on my part having to do with full pills and half pills and a having an old prescription of 4mg pills and getting a new prescription of 2mg pills (are you totally confused yet?) I ended up taking 4mg that first day. This was okay with the dr. and I was given permission to decide for myself what dose (4 or 2) I needed, as long I as kept them informed of course. I ended up continuing at the 4mg dose and at this point plan to for at least another week or so.

That first night was rough, in fact I was up till the wee hours of the morning in pain again (I’ve had a handful of really bad nights like this over the last few weeks). Somewhere in the midst of all this, and I think it was actually the weekend before the scan but my memory is fluff right now, A. was on the phone in the middle of the night with pain management when I was still moaning and getting no relief from a level 10 pain at 2am and their response was to take one more pill and if it didn’t work I was to go to the ER. But I refused to go to the ER because waking Z. up and dragging her there was not an option (and I was not going to wake up a neighbor or friend to watch her either) and I did not want to call an ambulance to take me by myself either so I just waited and took more pills at the next allowed time and somewhere around 5am or so the meds finally kicked in. I’ve had some not too bad days, but in general the pain is getting in the way of my daily life and functionality more than not. In addition as I am on the steroids longer the side effects from those are coming back. Nothing terrible but it’s there, that feeling of not being quite myself and the heavy legged sensation also. Sometimes my head is foggy, which I think is also from having to use so much more pain meds than usual, but the good thing is the steroids combat the sleepiness. I had been barely able to keep my eyes open in the 2 weeks I was off the steroids, nodding out off and on all day, and now I am much more alert. Just it’s not so fun to be alert when you are in pain, then I’d rather be sleeping!

I had not called pain management or my rad onc’s office since last Thursday, partly because I can’t always tell how my body will react a few hours from now based on how I feel now, so I need some time (days) to have passed to get a sense of what path I am on. Then I didn’t want to call on the weekend because unless the on call pain management nurse is one of my regulars who knows my history, they are not really that helpful (like the ER advice from that nurse. I was pretty sure I was allowed to take another pain pill, which was confirmed today when I talked to one of my regulars, so maybe that would have been enough to avoid an ER visit and give me a few hours of relief earlier.) I have an issue with calling drs. and medical people both for advice and for appts. and checking in. I just have to work myself up to doing it, it often causes anxiety, and I will do anything to put it off. I think it’s my way of being in denial about the absurdity my health situation. I feel like an 80 year old with cancer not a 50+ year old when I look at all the medications and things I have to do/use every day. It’s depressing if I really look at it and corresponding with medical people makes me really have to look at it.

Well today I made my calls like a good little patient. I spoke to the rad onc’s nurse who I really like (I am lucky in that I like most everyone I deal with, which at least takes the anxiety down a notch). My rad onc was out sick (a stomach virus making it’s way through the family, ugh) but we discussed where I was, what my plan was and she’ll give her the info tomorrow. Then I put in the call to pain management, which meant waiting for the call back (I am so lucky that I can usually speak to the rad onc nurse right away and at worst within an half hour, this is practically unheard of I find in medical practices these days). So maybe 4 or 5 hours later I get the call back, thankfully with one of my favorite pain management nurses (who ironically I didn’t like at all the first couple times I spoke with her, but I realized that what I was mistaking for being overbearing and annoying was actually just thoroughness and her desire to educate me on the ins and outs of narcotic rules and regs). I got her up to speed and she said I could take one more pain pill if needed each time (see, I knew it!). She also said I could try adding one more pain patch but I already wear two and finding another spot on my body for these things and the Tegaderm patches I use to help keep them on is not too easy so I said I’d give it another week and see if I could manage with the pills for now. My hope is that the steroids will begin to work better in the coming week as they build back up in my system.

With all the ups and downs and unknowns in how I am am and will be feeling in the coming weeks I decided that a real vacation for spring break is too much. That and the very high airfares to any place I’d like to go right now. So maybe we’ll see if we can do a family weekend visit instead for the 2nd weekend, maybe also have Z. visit with her grandparents the first weekend, giving A. and I a chance to do some things together (plus Z. really would like an overnight or two with her grandparents). Passover is the beginning of that week also, so we could connect that with the grandparent visit and Easter the following weekend with my family. I really need to talk to my family and see if they are even available that weekend or not.

I did however make some plans for May. We had gotten tickets at the end of last year for a Cirque du Soleil show this spring and they end up canceling the run here and were having it in NYC instead. At the time we just took the credit on the tickets as going to NY while not impossible was certainly much more of a production to deal with than local, especially planning so far ahead which one can see is a running theme in my life these days. But after getting the good news about my scan and puttering around online looking at vacation plans and then just happening to get an email from the Cirque du Soleil club about a special performance around Memorial day for members where you got to have a Q & A with the performers after the show (and the tickets were actually discounted from the regular prices) we decided what the heck, let’s go for it. The way my schedule looks I’ll be having my next scan in early June, so it should work out timing wise. We’re thinking that we’ll get a hotel room for at least one, probably two nights and make a little vacation out of it.

Another thing we’re planning is our orchestra subscription series tickets for next year, another leap of faith in special event ticket scheduling. Previous years we did the Family Concert series and had changed this year to the orchestra’s Chamber Music series. The chamber series is more low-key than the regular full orchestra series with 2 to 7 musicians per piece (roughly 3 or 4 pieces per performance), in the smaller theater on Sunday afternoons. A. and I have been enjoying the intimacy, although Z. tends to complain she is bored (roll your eyes in that tween/teen sort of way here). This next season we have decided we are going to do the “Create your Own Series” tickets and do 2 chamber performances, and some things from their special performance series for the other 4. One is a multimedia performance series with contemporary composers who conduct their own works. The other is a kind of grown up family series in that there is an educational component to it. The first half of the performance has the creative performance director narrating a visual documentary of the score (more traditional classical pieces, one is Shostakovich, the other is Holst). After the intermission the orchestra plays the score in it’s entirety and after the performance is over there is a meet and mingle with the orchestra members. All of these performances are on Friday evenings and are less expensive than the regular orchestra concerts which means we can either save some money, or just get better seats than we might have otherwise.

It’s good to plan something. I feel so boxed in by my body these days. Just running errands can be difficult for me these days, it’s depressing at times. I try not to let it take me over and I do much better at that if my pain is subdued. It’s like the over 5 pain and the under 5 pain. When it’s over 5 it’s much harder to make plans, and when I get over 6 or 7 I get downright depressed about everything, everything seems so overwhelming to me. When it’s under 5 I can see the light, and when it’s under 3 I can be downright giddy with excitement about things, even simple things like being able to run errands easily. Like yesterday, I was pretty good in the afternoon and the three of us did some shopping. One of our shops was going to Marshall’s where Z. was looking at dresses for events coming up in the next few months, her bday, a bat mitzvah, and just wanting to be girlie and have a dress to wear. I had a blast helping her try on and pick out the dresses (and with Marshall’s having so many to chose from at $20 a pop she got to pick out three much to her delight and a pair of strappy black sandals with heels that satisfied her (high enough) and me (low enough)). It kind of brought me back to those moments when she was a little girl and I would buy her cute little dresses at places like H & M for her bday or a holiday. This was different in that it was a much more shared experience, not to mention the fact that I was also experiencing seeing her in a much more grown up fashion physically. Two of the dresses were quite short (but not too short and one was full length) and all of them needed to be “tested” to make sure that nothing fell out when bending over (more like nothing was visible as there’s not really enough to actually fall out at this point). I know she’s almost a teenager (she’ll be 13 in June) but it can be a little shocking when the growing up changes are so visually apparent. I don’t find myself resisting them at all, for the most part I am not trying to keep her a little girl, but I am also not jumping whole hog into teen-dom either. I’m trying to find the balance between allowing the growth and freedom but keeping safe and tasteful too. So far I think we’ve been doing pretty well with it, and she does let me know if she thinks I’m being too conservative. When Zoe was young I got some advice from a mom of 6 kids about kid’s freedom to dress and adorn themselves. She said that she let them be with their own sense of style as long as there was not a safety issue. I think I am more conservative than that, however I do keep that in mind and have tried to let Z. be when it comes to those things as much as possible. I have had a lot of practice as we’ve been through the only boys clothes (literally down to the underwear and socks) phase so that by the time she got to the tween girl phase it was easy since the clothes are a lot more fun LOL! The place I have to usually bite my tongue is makeup, in particular the blue eye shadow (I am of the blue eye shadow should be illegal generation). She can wear it but we do have some rules about where she can wear it and how much is applied. But mostly I just smile and keep my mouth shut!

So, life has been a bit rough lately in terms of my health and it’s been a struggle to keep my spirits up at times, but in general I am doing my best to focus on the better moments, like bonding in the dressing room of Marshall’s with Z. and working on various house and garden projects with A. (we’re planning our garden and also making a big bulletin board for Z.’s bedroom, to replace the giant wooden lightening bolt she had us put up when we first redid her bedroom a ways back). I don’t have to look too far in the future, but I need to keep planning, even if it’s only dinner later that day, in order for me to keep going. One foot in front of the other.

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The good news is that the PET/CT scan I had on Monday morning and got the results of this afternoon from my rad onc shows that there is a good reduction in the metabolic uptake numbers (from 11 back in Sept. to 6.2 now). This means that the cancer’s metabolic activity has lessened by almost half, so the cyberknife treatment is working. Now, you might think, of course it is working, you had five 1 1/2 to 2 hour sessions of super whammy radiation last October so how could you even think that it hasn’t shrunk the tumor, even a little? Well, mainly because of the PAIN, the pain in my back that my rad onc had hoped would be gone, completely gone by the end of January. No such luck, in fact the pain is worse in many ways. I have doubled up my fentanyl patches and have discovered that I can’t be without at least some daily steroid use without being in non-functional whining and moaning pain, at least for now. At least that’s what this last week or so has been like, in particular this past weekend and the days since. I sit here writing this now with having already taken more pain meds than I would normally by this time (this post is being written over the course of the evening and it was about 6pm at this point) and have not gotten any real relief from this all day. It’s not a number 10 pain (although I have had some 9 or 10 moments in the last few days) but it’s at least a 6 and the fact that it won’t ease up makes it feel worse. Ugh!

But, I am very happy, happy enough to celebrate by having A. pick up take-out from our local Mexican restaurant for dinner tonight and ordered my favorite chorizo sopes (this link is not the ones we get, but you get the general idea, a thick corn pancake with crumbled chorizo and other stuff with a grated cheese on top that looks like Parmesan but isn’t) that I haven’t ordered in the months that I have been being super careful about my blood sugars. I even had some of their wonderful crispy tortilla chips and mango salsa (I dare anyone to resist eating them when their husband couldn’t resist buying them even though he knows that you can’t resist eating them because he had to be in the restaurant to pick up the order which meant that he couldn’t resist buying them).

Dinner was good (I’m back to finish writing at 9pm), the pain is still persistent but maybe tomorrow will be a better day. I hope so as I have a couple of appts. in the morning and early afternoon to get through, but luckily A. will be with me. It’s always a bit easier when I don’t have to worry about the driving and can be dropped off closer to where I need to be as this pain makes walking more difficult. In fact the other day I understood both handicapped parking spaces for those without wheelchairs (I mean I did understand them before as my mom used them for years, but this was different in that I really understood the necessity) and how one of those mobility walkers might come in handy when walking around museums or shopping. It’s not that I have any fears of falling, my balance is fine, but I find that I can walk better and hurt less when pushing (and leaning into) a shopping cart. Yet again an instance where I have become like my mother. My mom lived with chronic pain for many years and while I thought I was sympathetic it’s only when I began dealing with my own chronic pain that I truly understood how she felt and what she had to deal with. You want to do things, you want to be mobile, you don’t want to be crabby, but it’s hard and sometimes there is just no energy left to push yourself through it. Sometimes you know it’s just not safe for you to be behind the wheel of the car (not because of pain meds, which can make me tired but generally don’t make me dopey, but because ones reaction time is not the same when in a lot of pain, it’s hard to move your leg fast from the gas to the brake pedal if that’s the thigh/hip/backside that is hurting), sometimes you just can’t focus on anything, some days are just not productive at all. This last week brought it all back to me and made me realize that while I was still dealing with pain these last couple of months, I was functional and had more good days than bad days and that I would give a lot to have a day without continuous pain. My rad onc promised me that I would get back there and even better and I am holding her to that promise!

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