Archive for October, 2009

Good day so far!


After a rough night (a lot of pain and waking up every few minutes) I am having a really good day so far! I spent most of the night miserable, the pain was all over (really just my back, hip and right thigh, but the way the pain was it felt like it was everywhere, not pinpointed like it can often be) and the steroid was keeping my sleep light so I kept waking up over and over and over again, and the usual night sweats to top it off. But after waking up around 5am crying and turning on the light to sit there and try to figure out what to do, A. suggested I try some ibuprofen with the dilaudid, so I took two. It must have done the trick because I woke up at 7:30am (had to, or believe me, I would have slept in) feeling pretty good!

I think the steroid finally kicked in. Not only is my back pain better, but there’s a big difference in my energy level. So far today I have sewed Z.’s Halloween costume, hot glued feathers on her costume’s angel wings, done 4 loads of wash, gone through the stack of mail that needed going through for over a week, wrote sympathy cards that I’ve been trying to right for over a week, sent a memorial donation that I’ve been meaning to do for a month, washed Z.’s old sneakers so A. can spray paint them silver tonight (for TOTing this weekend, she’ll wear her silver sandals for the middle school party on Friday), amongst other things. But probably the most fun was I ordered myself some purple shoes (this is from the person who has a zillion different pairs of black shoes). I live in Merrell fuzzy clogs in the winter and have them in black suede and black leather, brown suede, and blue suede, but I mostly wear the black ones. I found they have a new color this year and since I’m a purple fan I decided that I had to treat myself to them. Today seemed a great day to do that, it’s cold and rainy outside, and I’m feeling good inside!


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I had my last cyberknife treatment yesterday, but it almost didn’t happen. I was scheduled for it to be at 11am but they called around 8:30am and said the machine wasn’t working and the tech would be in shortly to work on it. They kept us informed throughout the day and about 1:30pm called to say it was fixed if I wanted to come in that afternoon, or I could wait and do it the next day. No way was I waiting, so I went in at 3pm and did it.

It was probably for the best that it was postponed till 3pm though, I had started having problems with pain Sunday night and I had the pain under better control that afternoon then I did in the morning. I wasn’t able to see the dr. when I was done with the treatment yesterday as it was late and she had to leave before I was done to get her daughter, but I spoke to her on the phone this afternoon. I told her about the pain, which has continued today and asked if it was the “radiation pain flare up” that she had told me I would get and she said, yes, it did sound like that might be it. So she called in a script for steroids (Dexamethasone) for me to take for the next couple of weeks. The pain flare up is because of the inflammation the cyberknife causes to the tumor. The steroids should relieve the inflammation, thereby lessening the pain, and they also have some pain relieving aspects on their own. It’s not a high dose, and hopefully only for 2 or 3 weeks, so shouldn’t be too bad on my blood sugars (hopefully, I’ll monitor them as usual).

I asked her for a rough timeline in terms of pain and relief. She expected that in a couple of weeks I wouldn’t feel all that much different from how I do know (except for the added pain relief of the steroids) but that in about 4 weeks I should start to see a difference. If I am to get full pain relief (her goal and mine too) that would probably take about 3 months. So, it’s a bit more of being patient, and hopefully continuing to see improvement as time goes by. I am most looking forward to when I feel good enough to start driving again. That has been the hardest thing (besides the pain itself), losing my independence that way.


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Only one more left

I had my 4th cyberknife treatment today. It went okay but sure was long. I was laying (somewhat) motionless on that table for 2 hours! But let me start from the beginning of my day, waking up at 6:50am. Now I know this is a perfectly civilized hour for many people, particularly working people, but it’s an hour that my body rebels against, always has and probably always will.

So I get up, eat a cracker to settle my stomach (part of my new morning routine) and continue on with my showering, grooming and dressing routines. My back is bothering me a bit here and there along the way, normal for me in the morning, so I take a few moments here and there to sit on a chair in the dressing room and try to get it to relax. By the time I am putting my shirt on and all I have left is selecting and putting on my earrings my back is really starting to rebel. I quickly finish and head for my bed and lay down, quickly realizing that I have to get back up and put the heating pad under me first. Oww, this movement is really hard and I know I am in for trouble. I get back down and start calling for A. who is downstairs and can’t hear me (sound does not carry well from floor to floor in our house) and eventually I manage to get Z.’s attention who gets A. for me.

I realize that I am spasming big time and that if I can’t get this thing under control I probably won’t be able to have my cyberknife treatment today. This does not help me relax. I tell A. which pills and which amounts to get for me, which he does and then helps me to get them down by using that move that nurses helping you up off a table use where you both grab each others elbow to pull me up enough get the water down my throat instead of all over my chest. Ugh, I am trying not to get upset but I am struggling with the fact that I can’t move a muscle without extreme pain. So A. gets Z. off to school and I lay in bed, probably almost an hour all told. The medications all started to kick in about 45 minutes into it and while I can still feel my back pain source it’s so much better than I was an hour ago that I get up and the two of us try to get me ready to go (have to eat something, take more pills, get my heat pack ready, etc.) and out of the house in 15 minutes.

By the time we get to the rad center I am sufficiently loopy as usual, even though I have taken most of my pills about an hour earlier than usual. So I get settled in on the cyberknife table and we begin. I am listening to my newest version of my radiation playlist and laying there quietly with my eyes closed. You know how when you are kind of drowsy and about to nod off to sleep and your body does this involuntary jerk thing? Well my body kept doing this. I never fell asleep but this jerk thing just kept happening. Every time it did the machine would reset, which took more time. At one point the machine itself needed resetting (not my fault, but this required the tech having to come in the room to manually reset it). About 10 minutes to the end the tech came in and said they had to take more films (and she had to manually do something with the machine). Finally, after my playlist looped back around to the first song (my playlist on iTunes says it is 1.9 hours long), she comes in and says we’re done and I look at my watch and see that 2 hours has gone by. No wonder it felt so excruciatingly long, it WAS excruciatingly long! I felt bad too because the next person was delayed a half hour for his treatment because of me (his first treatment so I imagine that extra half hour of waiting was hard). And poor A. was getting worried as to what was taking so long and whether I was in pain or having an anxiety attack or what.

Oh, and when I got off the table and was sitting there waiting for the blood in my head to equalize I look down at my shoes sitting on the floor. I notice that the insoles of my shoes are two different colors, one is black and one is bright blue. Hmm, how did the blue fade away so much from the other shoe? Oh, because they are two different shoes of course! Both are black leather clogs, one Merrell and one Softspots, similar in look, but not the same height. I said something and the nurse said she had noticed but didn’t want to say anything. Apparently she sees this a lot, I guess us radiation patients have a problem with our footwear. I told her that when A. and I were first dating he had worn two completely different shoes one day (very obviously different, two different colors and completely different styles) and hadn’t noticed until I saw him after work and pointed it out. I told her that I married him anyway.

So the little drama of cyberknife today. I am so glad I only have one more left. I’m exhausted.

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2 down three to go

I’m feeling very tired and queasy so this will be a short post as I head up to bed. I had my 2nd treatment today and it was like night and day compared to last Friday. I woke up queasy this morning and had some pain also. The first hour or two of the day I was shaky and really didn’t feel well at all, but as I started taking various meds at their appointed times I began to feel better. By the time I got to the rad center I was doing well.

The treatment was pretty easy in terms of pain today. In fact the most pain I really felt was the back of my head which was hurting from lying on the hard mold surface. The hardest part of the whole thing is the time. Lying there for an hour and a quarter without moving isn’t easy. I couldn’t sleep, but I was really tired. I was just too aware of myself and the machine (even though I had my eyes closed almost the whole time) to be able to let go. I don’t know how to explain it exactly but I just kept having this feeling that I wanted to get off the table. I had that feeling last time but I was in pain, this time I think it was from boredom, or just the odd sensation of lying still and not moving for so long.

Everyone was so relieved that I did so well today. The tech and the dr. told me they were worrying about me over the weekend. I got another script for zofran (anti-nausea) as that seems to be my worst symptom right now. She told me to take it round the clock (once every 8 hours). Unfortunately it doesn’t always work. Like tonight I took it at 5:30pm and the good part is that I was able to eat some dinner (which hasn’t happened much lately) but around 8 the nausea came back. I just ate a piece of crystallized ginger and am sipping a little bit of Perrier (the bubbles go down easier than regular water). I plan to bring some crackers and a glass of water to my bedroom tonight and then treat myself like I’m pregnant tomorrow morning (eating some crackers before getting out of bed and letting my stomach settle a bit).

All in all not too bad compared to what I went through last week. Still I realize that I can’t expect much out of myself this week and a half (and maybe longer). I can’t drive, I can’t walk very far and sometimes I can barely put two thoughts together between the side effects of the drugs and the radiation. We will figure out each day as it comes.

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One down, 4 to go!

I had my 1st cyberknife treatment yesterday and I survived. It was an extremely difficult day for me because of my pain. My pain had been getting worse and worse over the month I was waiting for treatment to start. On Wed. I saw my pain management dr. and he changed my pain meds from oral long and short acting morphine to a Fentanyl patch and dilaudid pills for breakthrough pain. It takes at least 12 hours for the patch to get in your system but he compensated for this by my also taking the long acting morphine with it for one dose. Only problem is it wasn’t enough and my pain was getting worse and worse. On Thursday I began to feel some relief when the patch kicked in, but by late afternoon was dealing with a lot of pain again. By the time I woke up Friday morning I was in the worst pain I’d ever had, or at least until that moment because it did get worse. I called pain management and they told me to put a 2nd Fentanyl patch on (but it was going to take 12 hours for that 2d patch to get in my system) and up the diluadid from 2 pills to 3 pills every 4 hours (although I got the okay to take them every 3 hours if need be). I also took a muscle relaxant mid morning.

By the time we got to the radiation appt. around 2 or so I was wiped out, still in pain but on the 1 to 10 scale it was around a 6 instead of the 10 it had been earlier. So they get me onto the table and position me and immediately my back started hurting from the position. I figured there was nothing I could do but bear it since they can’t change my position or the mold (which is hard as a rock). The treatment itself is about 45 minutes, but there was a good 15 minutes or so of scanning before that started. They stopped about midway (or maybe more, she said I had 15 more minutes left) to see if I needed a break but I was lying there with tears streaming out of my eyes and when they told me there was that much time I just lost it. So they stopped and got me up. At this point changing position wasn’t helping, I was just a complete mess and no matter what I did it was hurting bad. I got some water and eventually it was about 2 hours from my last dilaudid so we decided to go ahead and take the next dose. It wasn’t going to help me during the rad part, there wasn’t that much time left, but I was hoping it would kick in for my ride home. The only thing they had that they could give me was Tordal (an anti-inflammatory) but I’m allergic to it.

So I explained to them that the worst pain was in my groin and I thought that it was because my body was flexing (hips up and upper back and legs down). So they tried to position my legs up higher. It helped a lot but there was still pain, but it helped lessen the groin pain. The tech said she wasn’t sure they could keep my legs up so high for the rest of the treatments though, but they can at least make them higher than they were initially. The other problem I was having was my left foot kept cramping but they were able to prop something up under it that helped a bit.

Also it was a good thing that I made a radiation playlist for my iPhone as having those songs to concentrate on helped keep me from jumping (well, I wasn’t capable of jumping, maybe rolling off) the table because believe me I felt like doing that very often. Some of the songs were old favorites of mine and others were new things that I didn’t know so well. If I have time (and the ability to concentrate, I can’t tell you how difficult it is to concentrate right now, it’s pretty amazing I am writing this with some sense of coherence as I keep zoning out and wondering what the heck I am doing when I zone back in).

When I finished the pain was so bad I could barely walk and at this point the dilaudid should have kicked in, but there was nothing. I was there for a while after as they tried to help me, hot towels, an ativan (sedative, which also helps with nausea which I was feeling from the extreme pain) but there was really nothing that helped at all. The dr. said that hopefully when the 2nd Fentanyl patch started working that I would be much better, but said that if I didn’t feel better that she didn’t want me to be like that all weekend and that I was to call the hospital and get admitted. That was a scary thought.

When we got into the car I told A. that I was going to be moaning and screaming and talking and saying things but not to take any of it personally or worry, it’s just what I had to do (poor thing, his having to drive for almost an hour with a lunatic next to him in the front seat). And I did all those things, holding a blue plastic hospital tub in front of me just in case. We managed to get home and the first things we did was get me a muscle relaxant, my microwave heating pad, and put me in my office chair with the full vibration pad. Helped a little, but not much, mostly it made me feel better not to be confined by a seat belt in the car.

So it was 6pm and we were supposed to go to see Cirque du Soleil that evening at 7:30pm. Obviously I wasn’t going, but A. didn’t want to leave me alone and I realized that I didn’t want to be alone either. Z. was at a friends house and was supposed to be picked up at 6pm. I really wanted the tickets to be used if possible, A. was ready to give up on them but I wasn’t. So I had him calling one of Z.’s friend’s father to see if they could use the tickets and take her, but they were busy. Meanwhile the friend’s mom she was at called and said she could stay for dinner and a bit longer if we wanted so we said yes. The tickets were in pdf file format so I knew I could email them to someone and thought of two friends of ours (J & R) who, if they weren’t busy, could probably manage the last minute arrangement and sure enough they weren’t busy, could get to a computer to print out the emailed tickets and got there in time. That made me extremely happy for some reason. When A. was talking to them on the phone I told him to tell them Merry Christmas!

So I decided to go upstairs and see if I could find a good position laying down. I was exhausted and dozing in and out but the position wasn’t working. We went into the dressing room and A. helped me get undressed and into night clothes. I remembered that we had this big chair pillow thingamagig that you could sit up and read in bed with. So we tried that and after a few attempts to get positioned right with the heating pad in between me and the pillow I was good to go and felt pretty good. I think the 2nd Fentanyl patch was beginning to kick in. I remember going in and out of sleeping/wakefulness and talking, I had enough presence of mind to realize that I was making no sense and talking the stuff that I was dreaming or was going through my not quite conscious mind. A. was taking very good care of me, getting me water and medicine (we started writing down the times and doses for everything I was talking yesterday as it was getting hard to remember it all), etc. He made me dinner in bed on one of those breakfast in bed trays. It actually was breakfast, a scrambled egg and a waffle with mint tea.

Z. got home around 9:30pm and was very happy from her time spent with an old friend (someone who doesn’t go to her school anymore). We told her about missing Cirque du Soleil and she was fine with it, she was actually happier to be with her friend and was glad that our friends J & R got to go instead. So I asked her if she wanted to watch Project Runway (on On Demand, we hadn’t watched it yet that week, it was on the dvr downstairs) in bed with me and she said yes. So Calvin the cat, myself and Z. watched in bed and later A. joined us in a chair near the bed and we all watched. Only I was so doped up that I was mostly sleeping through the whole thing, waking up every few minutes to take sips of my tea (I had to drink it all as it had my Miralax in it, which I absolutely had to drink because all the meds I was taking are extremely constipating) and to see who was voted out. It was funny this morning when Zoe mentioned Project Runway and I said, oh, we’ll have to watch that on the dvr together this weekend. Her and A. were like, huh? we watched it last night, looking at me like I was crazy. Then when A. said we were in bed I put it together. Ohhhh, now I remember. Wow, I was pretty drugged up last night.

I had a good nights sleep, the meds kept me sleeping and almost pain free. It was the best nights sleep I have had in a long time. Z. had a performance (to play one piano piece) at her music school this morning which I thought was at 11 but it was really at 10am (I think it’s a miracle I even remembered it at all). I got up at 9am and had to really rush to get ready but we made it. I felt queasy and took a zofran with my dilaudid. I took a little less dilaudid and will have to feel out what I need as I go along, and will need more right before each radiation session. Her performance was wonderful, she was relaxed and played well. We didn’t stay for the whole thing, Z. went on 2nd and we stayed for about 5 more performers and then left. I’m feeling kind of tired and kind of anxious at the same time. I took my bp this morning which was good but my heart rate was high. When it’s gotten like that before (usually from meds) I get jittery so I will avoid caffeine until I feel better.

My radiation sessions are scheduled for next week on M, W and F and the following week on M. We were able to schedule them for late morning which I think will work out for us timing wise and picking up Z. at school at the normal times. I don’t know that I will be very dependable for the next week or so as I suspect that even with better pain control that the act of laying on that hard table on my back for an hour or more will send my back into spasms no matter what I am taking. But I think we’ll work it out. Some of you may get phone calls with help requests but as of now I think we’re okay. I am hoping that now that I seem to have better pain control that it won’t be quite the excruciating process it was on Friday, but I suspect that lying on that hard table on my back will cause me pain no matter how much pain meds I have in me. Hopefully just not as much pain.

We woke up this morning to find that the refrigerator door hadn’t been closed the night before and having to throw out a lot of stuff (Miss  Z. got up to get a drink of water and assumed it shut behind her but recently it must have changed it’s balance somehow as you often have to double check that it’s shut). Luckily because we have the fridge and freezer in the basement we had extra milk and eggs down there and we could keep most of the veggies, fruits,cheese, jams, pb, tortillas, oils etc. so it wasn’t too bad. I think I’ll be up for a shopping trip to the supermarket that is a half block away to replace most of the things that we threw out (not alone, I definitely can’t drive right now and I need a bit of help with the heavy bags, but I so much prefer shopping myself than giving someone a list. Except for a few certain things I don’t know what I want till I get there. Impulse shopper? Who me?). It gave us a chance to clear out all the crap that ends up in the back of the fridge for 2 years too, so since we are so lazy about that it was a good thing!

Mostly today I feel pretty good. I am feeling out the pain meds (I took 1 pill less of the breakthrough pain meds this morning, but did feel ready for more at the 3 hour mark). If I continue to feel so edgy I may take a 1/2 a pill of a sedative and take a nap this afternoon. Z. was asked over a friend’s house for the day so it’ll be quiet. Compared to yesterday I feel almost 100% better and am able to see the world in small pieces right now. This is a good thing, it helps to keep me from awfulizing.

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dare I say it?

I’m afraid I might jinx this by posting this, but I got a call yesterday scheduling my first cyberknife session for Friday afternoon!! So let’s hope it actually happens this time.

Yesterday I say my pain dr. and he was concerned about all the gastric upset I was having and felt that the pain meds weren’t really working very well, so he changed my meds. Instead of the long and short acting morphine he gave me a fentanyl patch and dilaudid. The patch is in place of the long acting morphine and the dilaudid in place of the short acting. He said that it could take 12 hours for the patch to start working so had me take the long acting morphine along with it last night and told me to switch to the dilaudid as soon as I got it filled. So far I am in a lot of pain, I don’t think the dilaudid is doing anything. It’s too early for the fentanyl patch to be working yet, so I’ll have to wait and see how it goes today. If it doesn’t get any better then I’ll call them and see what they want me to do. Right now the only way I can be semi comfortable (not moaning in pain) is sitting with a vibrating pad. It diffuses the pain enough that while it doesn’t go away, it’s not as intense.

Ugh, this is all getting very hard. I am just hoping this patch kicks in soon. The dr. said 12 hours but the package insert said it could take 24 hours. Right now it’s 11 hours and it’s like I didn’t take (or do) anything. I have a friend coming over for tea shortly and I hope that it will be a pleasant diversion. I had to ask her to come here rather than meeting in a coffee shop because I need all my little tricks to get comfortable enough to socialize (microwave heating pad and the vibrating pad).

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catching up

Still waiting to start radiation, talked to the nurse yesterday and she said the dr. was hoping to be finished so that I could start on Friday. Well, we’ll see, I’ll believe it when it actually happens.

Been having a tough time with the pain lately. I was told by the pain management people to take more of the short acting morphine, 2 pills every 4 hours instead of 1. But the nurse said I could try taking 1 and then if the pain came back before the 4 hours I could take another one. So for the last few days I was basically taking one pill every 2 hours, which was working okay for the most part, except I had a bad night Monday night. I was up till 4:30am trying to get the pain away so I could sleep (lately I’ve had a hard time because lying down on my back hurts, and that was the only position I had left to sleep in, so without that there’s no sleeping). So last night at dinner I decided to try taking 2 pills after eating and see if that might help make the night better. So after dinner as the pills kick in I’m feeling a bit queasy and as time goes on I’m starting to feel kind of woozy headed too. I decided to take a zofran (anti-nausea pill) and head upstairs to lay down in bed for a bit. I get up the stairs and walk two steps when I think, uh oh, and luckily Z.’s bathroom was right there. I threw up a few times, ugh (so there goes the zofran, it couldn’t have been in my stomach more than a minute) while Z. was saying, “what’s going on in there?” from her bedroom. Ugh! I really wasn’t able to explain at that moment. Afterwards I went right to bed while A. explained to her that my pain meds made me sick. I laid there feeling tired and woozy and dozed in and out till 10:30 when I had to get up to eat something so I could take the next round of pain meds. Ugh. After that I got undressed, washed my stockings and brushed my teeth and got back in bed and slept till about 7:30am when I had to get up for various things going on this morning.

Now I am feeling kind of icky. I’m still tired and while eating breakfast I had a kind of gagging feeling like I was going to throw up again. I think it was psychological in that I had been thinking about throwing up last night. I would love to go back to bed but have people working in the house all morning. Then I have to go to the pain management dr. for a 1pm appt. I’ve hardly been driving lately, hopefully I’ll do okay driving out there and back.

In other fun, I went out to my car yesterday as I wanted to go to my support group meeting (which I had missed the week before because I felt lousy) and my car wouldn’t start. This is my 4 year old new car! I called AAA and sure enough, the battery needed a charge. Since it seemed like it might be the original battery and I didn’t want to get stuck again I had them put in a new battery. For some weird reason now I can’t get the driver’s side window controls to put down the windows on the right side of the car (they will go down with the individual controls for each window). Weird. So I never made it to group. I’m glad I was at home when it happened at least.

We had our “catch up” (or something like that) appt. with our therapist yesterday. It’s an appt. a few months after therapy ends to just catch up and make sure everything is going well. Z. was happy and chatty and we are “caught up” now, with the open invitation to come back if we ever need to.

I had my routine mammogram last week and all is well but of course I did have to have a 2nd smoosh on the left breast (they read them right then so at least it wasn’t a call back) so left there feeling like my breasts had been terrorized. Ouch!

We went to our first concert of the chamber music series we have with the orchestra this year. I wasn’t sure how I would do, but other than some back spasms when I first sat down (from walking the few blocks from the parking garage and up the steps in the theater to our seats) I did pretty well. The spasms went away in about 5 or 10 minutes and after that I enjoyed the concert except for the fact that I was doing that dozing in and out thing the whole time. My eyes would close, but I could still hear and never actually slept, but it was making me nervous. We were on the 1st balcony, 2nd row, and I kept having this irrational fear that if I fell asleep that I would fall off of the balcony. Anyway, we even managed to go out to dinner afterwards. I was feeling queasy on the way back home though, restaurant food isn’t sitting too well with me these days.

Not much food sits well with me lately. You’d think I’d be losing weight, and I have lost some, but not much when you consider how much (or little) I am eating. The problem is that I am eating mostly carbs (comfort carbs, like crackers, oatmeal, cereal, etc.) which isn’t good for my blood sugar. Then there is the issue of having to eat when I am not hungry so I can take a pain pill. I love food, and it’s been pretty depressing not loving food anymore. I have been trying to get some things that I like to help make it easier. Like normally I wouldn’t eat raisin toast (not good for the blood sugars) but I found a couple healthier types, one is whole wheat and the other is spelt flour. It’s more enjoyable so much easier to get down and seems to be okay with my stomach.

Well, I’ve got to get myself feeling better and together for my trip to the hospital to see my pain management dr. I really am doing my best to hang in there these days. But as always in life, there are good days and there are bad days. I’m trying to take it one day at a time and not think too far ahead.

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