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Archive for September, 2009

still nothing

I called the radiation center this afternoon as it’s been a week since my MRI and I still hadn’t heard from them. Ends up that my dr. has been/is out a few days this week, so the planning isn’t finished yet. The nurse spoke with the tech who said that they hope to finish so that I can start treatment next week. So, the wait continues.

I am trying to be patient but it is getting hard because I just don’t feel well and I am tired of it. The pain meds aren’t working as well as they were and I don’t want to take more since I’m already nauseous enough, I don’t want it to be worse. Each week I feel less and less functional, and that is making me nuts. Lately my back goes into spasms when I am standing, that makes life a little difficult. I am eating Tums like crazy, it’s a delicate balance but I’ve found that if I have one after eating I am less likely to get nauseous afterwards, or at least less nauseous.

I miss chocolate! It’s too hard on my stomach, in fact most sweets are, but occasionally I throw caution to the wind and have something.  Three m&m’s with a Tums chaser is a decadent sweet treat these days. Sigh…

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nothing yet

I still haven’t heard from my rad onc about setting up my cyberknife appts. (which means that they aren’t finished with the planning yet). Arghh! I am trying to be patient, and I certainly want them to take their time and get everything right, but I am also really ready to get started. Because the sooner I get started, the sooner I will feel better. I am so tired of being tired, tired of hurting (my newest thing are these awful spasms in my back that I am getting when standing), tired of feeling queasy (which I am thinking is probably from the long acting pain meds). Just tired of it all and there is this carrot dangling out on a stick just out of reach, the possibility that this treatment could actually get rid of this tumor and that I could feel a whole lot better.

Hopefully I will hear on Monday. I just have a really busy week next week so scheduling the sessions will be hard and Monday was a free day. It’s not just my schedule but A.’s too since I really need him to drive me. It’s become really apparent to me over the last week or two that I can’t drive too far from home, I just don’t feel well enough, and the rad facility is way too long a drive for me right now.

Oh well, I will try to enjoy my weekend and stop thinking about it all until Monday. Yeah, right 🙂

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Survived the MRI

It was a long day and I am so sleepy that I won’t be surprised if I nod off a few times while writing this post. The original plan was to get to the hospital a half hour early (10:45am) for my MRI so that they could give me the ativan to help keep me calm during the claustrophobic procedure. But as I was finishing my breakfast (maybe around 9:15) I got a call from the nurse saying that my blood work wasn’t up to date and in order to get the contrast I needed up to date kidney functions (this is because I have high blood pressure and has only happened the last few scans so hasn’t really gotten into my consciousness yet). It had been 8 weeks since my bloodwork had been done and the limit was 6 weeks.

So this meant getting to the hospital earlier which meant I had just a few minutes to get myself together to go. I was to go to the Infusion Lab (where they do chemo) and have it done there. It was a zoo there as usual. I’ve never had chemo at this hospital but see the waiting area whenever I go there and it’s always overflowing. I ran into a friend from my weekly support group, I seem to be there on Weds. lately which is his infusion day and we often run into each other in the hallways somewhere.

As I waited I realized that because we left home early I hadn’t taken my long term morphine pills (due to be taken with food at 10:30am, my plan had been to take them earlier before we left home). I checked my purse and I didn’t have any with me, but did have two half pills of the short acting morphine. I ate half of a granola bar and took the two half pills and hoped for the best.

I waited and waited for someone to call me to get my blood drawn, it was about 10:45am (the time I was supposed to be downstairs getting my ativan) when I was called in. It took two sticks but she was finally able to get a good stick in my hand, practically between the knuckles. I was steering her towards my worse arm though, in order to keep my better arm good for the contrast IV which is a different and more important stick.

So downstairs to the radiation dept, waited a short time up front and then we (A. came with me) were brought inside the maze of hallways (they are doing construction so it’s all truly a maze with arrow signs posted all over the place) to another waiting room. We waited another 20 minutes or so before my ativan was brought to me along with some papers to fill out. Then we waited and waited, periodically being told that they were waiting for my bloodwork and that it was spinning. Eventually, around noon I think a tech came to get me, saying the bloodwork was still spinning but that she was going to have me change into a gown. After a short wait outside the changing room the bloodwork was finally ready and we went into the MRI room.

They had me lay down to do the iv stick. Two problems, my back started spasming like crazy. Then they could not find a vein, did one stick in my hand and nothing happened at all. So they let me sit up and called the iv team person, the experts. She came down and thankfully had no problem getting it with one stick. I was thankful for that, but also thankful that the previous nurses/techs didn’t keep sticking me and called her in right away.

So back to laying down on the table while they positioned me using my tattoo’s and the permanent marker X’s. Since the purpose of this scan was to fuse with the PET scan they needed to be able to find the markers. Thankfully, while my back still hurt, the spasms weren’t as intense as they had been shortly before.

The good news was that I was going into the machine feet first instead of head first. That made a big difference in my claustrophobic anxiety reactions. The ativan helped a lot also as I would find myself tensing up and only getting to a certain point and then relaxing and my mind would wander somewhere else. I had earplugs on (that they supplied), no headphones or music like my previous scan. I could hardly hear the techs talking to me with the earplugs in, but could hear the machine quite well (which makes me think that without them it would probably have hurt my ears). My back and hip and thigh and even my knee was hurting a lot throughout the initial part of the scan. When they pulled me out to put the IV contrast in for some reason my back pain lessened a lot. Maybe I was finally relaxing, I don’t know. But after the IV contrast went in my hand (both my hands were up on my upper chest, not down by my side, I think this also helped me feel less confined) began to fall asleep and hurt. It was an uncomfortable feeling that was freaking me out a bit, but the ativan did help keep me from getting too anxious.

I don’t know how long I was in there but even though the tech said that it wouldn’t be as long as a diagnostic MRI, it was still a long, long time. When they pulled me out I was able to get my hand un-numbed quickly thankfully but when I took the earplugs out I still couldn’t hear as the plugs had pushed earwax into my ears. I am still walking around with clogged ears, one of them more than the other and it is driving me nuts.

It was around 1:45 I think when I got out to the waiting room where A. was. A long day of medical torture. I was exhausted, drug tired, and needed to get back home and eat something so I could take my now very late long acting morphine pill. I’ve spent the rest of the day in a fog. I went to pick up Z. from school and almost fell asleep at a stop light. We went from school to piano lessons and I spent the whole time in the car in the parking lot nodding off (usually I go in the building with her and wait outside the room). I would go to bed now but I have to get up in a couple of hours, eat something and then take my pain meds. I’ve just begun to feel queasy, but I think it’s pretty good that I got through the whole day till now without being queasy.

So, I survived the MRI, no mean feat, that’s for sure! I (oops, nodded off for a few moments there) guess the next part is the radiation itself. It won’t be claustrophobic at all but I will have to lay still for an hour with what will likely be a lot of back spasming. I could try taking a muscle relaxant beforehand, but I really don’t want to spend my day doped up like I felt today. Okay, I’m nodding off again so I’ll end this now.

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MRI aackkk!

I got a call from my rad onc this afternoon. They are working on the planning of my cyberknife treatments and she felt that they really need an MRI to get as accurate a view of exactly where the tumor is as possible. They had fused the PET and the CT I just had done last week together and she felt that it was still too rough an image for the kind of accuracy she needs for me since I’ve had previous radiation before. She felt that if we didn’t get the MRI she would have to underestimate where the tumor was in order to be sure to stay within it’s borders. This wouldn’t be so good if the goal is to get rid of it. I think this may have been part of the problem the first radiation I had on it and could be why it didn’t get rid of the tumor. She was emailing back and forth with my rad onc who just left the hospital a couple weeks ago. He’s the one who trained her actually, but she seems even more conscientious in her approach than even he was. That’s a good thing. I also liked that she called me herself, a rarity these days I find, most drs. have their nurses call you for almost everything.

Only problem is, the MRI, omg, the MRI! I have only had one done and it was one of the worst experiences I’ve ever had. She said that the MRI machine was in the radiation dept., not the imaging dept. and that while it was not an Open MRI, it was more open than a regular MRI. She’s also calling in some ativan for me to take once I get there (I’ll go a half hour early). Because of the ativan I’ll need A. to drive me back and forth.

I’ll also be getting contrast, but luckily it’s a different contrast than the one they use for a CT, that one I am allergic to. So I don’t need to do the steroid prep. That’s good since I don’t know how well the ativan would work if I’m all hyped up on steroids. I don’t have to fast so that part is good at least.

Ugh. I am more than willing to do this if it will allow them to be more precise, get more radiation to the tumor, so we can get rid of the damn thing. But I don’t have to like it!

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met the new dr.

I just wrote up a nice post about meeting my new rad onc today and clicked on save draft and the whole thing just disappeared! Arrghhh! I can’t possibly recreate it so I will just start from scratch.

So A. and I went to the new satellite radiation facility that houses our hospital’s cyberknife machine. We met with my new radonc and I also had my 2nd ct simulation (having had one at the main hospital when they were thinking I was going to have stereotactic radiation before they changed the treatment plan). I really like my new dr. a lot which is saying a lot since she had a hard act to follow with my previous rad onc who was great. She was very easy to talk to and explained a lot of information to us very well.

One thing that made us both feel more optimistic is that she talked about “eradicating” the tumor. I like that word, it sounds forceful. She showed us the PET scan on the cool computer monitors mounted to the wall of the examining rooms so the dr. can show you and talk to you at the same time (when the computers are on the counters they can tend to focus on the computers instead of you sometimes). She said that there was plenty of room between the tumor and the spinal cavity (and that the actual cord is even smaller inside the cavity) so that the likelihood of spinal damage was very small (however it’s still on the consent form as possible late effects, along with a slew of other fun things).

The main reason for using the cyberknife machine (which is actually a robot, you lay on a table and the machine rotates around you, almost being able to go around 360 degrees so they are much more able to avoid radiating healthy tissue) is to protect the bowel. Besides wanting to avoid a bowel perforation (which is not likely) there is the risk of adhesions causing a blockage later on. I am already at risk for bowel obstructions because of my hysterectomy and previous radiations, and while this increases the risk of something I really don’t want to have to deal with, it sounds like one of those, either you’ll get it or you won’t and there’s no way to know who is more prone to adhesions and who isn’t.

She also said that the spinal bone that has been eroded by the tumor will regenerate itself over time. Cool! She felt that all the pain I described was consistent with the tumor pressing on the L2 so there’s a really good chance that when the tumor is “eradicated” (love to use that word again) that my pain will go away too. That’s almost too much to hope for, the tumor gone and the pain too! It won’t happen right away, in fact the pain will likely get worse at first but in the weeks and months after treatment it should get better and better. Keep your fingers crossed for all of that!

She gave me a script for zofran (for nausea) that I am to take an hour before each session. She gave me extra to take in between sessions if I need it and also to take between now and when treatment starts if I need it since I have been having problems with feeling queasy off and on the last few weeks or so. The tech also suggested I premedicate with my pain meds before sessions. The dr. told A. that each session will probably last about an hour or so, a long time to lay on your back on a metal table (the tech said it could be as long as an hour and a half, depends on my treatment plan which is what they did the ct for today). They made a form so they don’t have to move me around so much positioning me in the right place for treatment but it doesn’t help my back much. There is a wedge thing under my knees, but the small of my back is kind of in the air in a way, and the table is hard. I was lying still for a half an hour today and could never get my body to relax because of it. Tempurpedic it is NOT!

There will probably be about 5 sessions, I’ll know for sure by the middle to end of next week when the plan is finished. I will either start at the end of next week or the beginning of the week before. They only have a few cyberknife patients right now so (it’s mostly used on brain and spinal cancers) I will pretty much have my choice of times and dates. There needs to be a few days in between sessions. The dr. explained that since the tissues have already been radiated they need more time to bounce back so that’s the reason for the time in between (usually radiation is done every day, 5 days a week with a break on weekends).

I think I won’t push my luck and will stop here and press publish instead of preview or draft. I don’t want to write this all again a third time!

ETA

In writing this a 2nd time I forgot to mention music. The rad tech told me I could bring in my iPod and that the sound system was excellent. So I’m thinking of making some radiation playlists. I’ve got a ton of music to choose from, it’ll be fun.

And speaking of music, Mary Travers of Peter, Paul and Mary fame died from leukemia yesterday. I have a stuffed animal turtle that was supposedly originally bought by her. In high school in CT I was friends with her daughter Erika (she went to our private school for one year, I was only there for 2 years, my jr. and sr. years). She was a few years younger than me, but back then I had a little group of younger girls (the school started at 7th grade and went to 12th) that followed me around and liked to hang out with me (I have no idea why I was so appealing to them). A number of them gave me little gifts for my birthday and Erika gave me this turtle. She told me her mother bought it while on tour in Japan. Funny I still have it after all these years and I think of Mary Travers whenever I notice it on my vanity. My memory of Mary is of my standing on the sidelines of the soccer field with her cheering Erika on. When celebrities die of cancer there’s this weird combination of disconnect (after all I don’t know these people personally) and sadness (we shared the same awful disease). In this case there’s also this connection and while I haven’t had any contact with Erika since high school I send my good thoughts out to her anyway. I wish no one had to lose someone they love to this disease.

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new dr.

I finally heard from the hospital about my upcoming cyberknife treatment. I’ll be going there on Thursday to meet with the rad onc there who will explain to me all about cyberknife. I guess she is my new rad onc now that my original rad onc has left (last Friday was his last day). I will also have another ct simulation (I had one a couple of weeks ago, but they need a new one since the treatment has changed I guess). This is where you lay in the radiation machine for a long while and they do ct scans so they can plot your treatment. It’s also when they tattoo you, and I am wondering if they will have to do that again or not (they did it 2 weeks ago). I have so many tiny tattoo dots on my stomach and side that I don’t know how they can tell which is which. Maybe they should use different colors for repeaters like me 🙂 Then I could play connect the dots on my belly when I am bored.

I’m guessing they’ll need another week, give or take, to do the planning so I’ll either start the treatments the end of next week or the week after. It sure is dragging out, I am ready to get this show on the road already.

I’ve been kind of queasy lately off and on and not very hungry as I think I’ve mentioned before. It is so weird not to be hungry and not to care about food, even chocolate! I feel hungry right now which is so great, but often times what happens is once I start eating I get full very fast and can’t finish more than half of my dinner. I’ve barely eaten any dessert type foods in a while, and I live for dessert! It’s all very weird and I don’t like it. I’ve lost a few pounds (but barely any considering how little I am eating) but I’d rather be fat and enjoying my food! I am thinking maybe this is anxiety, although that’s not my usual response to anxiety (I’m an emotional/stress eater). The good news is my blood sugar has come down a bit, but considering what I am eating and how little of it, the numbers are still high. I’m beginning to think the only way for me to have normal numbers is to either lose 50 pounds or go on medication. Well, I’ll worry about that later, right now I’ve just got to get through each day.

So, hopefully Thursday I will have a better idea of when my radiation appts. will be so I can plan my life. I’ve been avoiding making plans and appts. when I can because of not knowing. One thing I’m hoping is that I’ll be able to get a late morning radiation appt. (they give you the same time each day usually). That will allow me to sleep later, get up there and back (the traveling back and forth will probably take close to two hours, I’ll know better when we drive up there on Thursday), eat a little lunch and then go pick up Zoe from school. I’m glad this will probably only be a couple of weeks.

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long time

Somehow I managed to go almost a month without blogging, when this has been a very eventful month. I think that is part of the problem. When a lot is happening I get overwhelmed and tired and can’t get myself to sit down and write. Then the more time that goes by the harder it is to jump back in as I don’t want to backtrack. But some backtracking is necessary.

So in the last month the stuff that has happened:

Met with the rad onc who said I could have more radiation. Had radiation simulation and was set to have radiation setup and treatment but was called at the last minute and told they wanted more time to go over my stuff. Got a call today that in weighing all my options (including proton beam with the drs. at U of FL) that they felt my best option is cyberknife. I’ll get another call next week to see about getting started on that.

Z. had her oral surgery, removing 4 permanent teeth and two wisdom teeth. Not fun but she managed okay. She woke up in recovery all pissed off about her mouth being numb and the pain in her throat (the tube used during general anesthesia) but after a couple doses of narcotics was all “happy” and “serene” (her words) but to us she was just extremely talkative (and this is a talkative girl to begin with, A. said it was like Z. on steroids!). She didn’t mind eating ice cream and pudding the first couple days and discovered something new that she likes, plain yogurt with maple syrup swirled in.

Before our trip to FL to pick up my “new” car (my late mom’s car) our microwave died. Literally in the middle of dinner (thawing out the tortillas went fine and then when I stuck my heating pad in, poof, nothing!). We can’t live without the microwave mainly because of my microwave heating pad, so off to buy a new one after dinner. 5 stores (and two repeat trips) later we found something that worked for us and bought it.

Our trip to FL and drive home again went well. My pain meds and the very comfy seats in my new car helped. We had dinner at Paula Deen’s restaurant in Savannah, and spent a couple nights in Colonial Williamsburg. Z. loved the bawdy 18th century play we saw and the spooky night time witch trial (we got to sit in the jury benches). She also got to swim a bunch of times. We also stopped at my mom’s place in FL and I came home with even more Vera Bradley bags (my mom had a lot of them) and other odds and ends.

When we got back from our trip we found our internet wasn’t working. First we got a new router as it was completely dead but discovered that the cable modem had also died. Spent most of Sunday out buying new equipment and talking on the phone to the ISP before finally getting it up and running in the afternoon. We needed it working because A. had to work from home some days the coming week with Z. still home from school, her surgery, my radiation simulation appt. etc.

A couple days after being home we discovered that the big freezer in the basement was warming up. We pushed the temp all the way down and it cooled off but we decided to buy a new one as we didn’t want an emergency freezer failure on our hands. Got a really great deal at Lowes but emptying it and putting things in coolers in the morning it was delivered was rough on my back. We thought we saved the food but I was finding myself nauseous off and on. Yesterday I had full fledged full poisoning (with A. out of town on business and Z. needing to get to school and back it was a really rough day for me) and we traced it to the older food in the freezer. So tonight we threw out all the things we thought could make us sick (saved the bread, flours and frozen veggies, but threw out the chicken, meat and frozen meals). So we ended up losing a lot of food anyway, in spite of all we did to try and save it. But after yesterday there was no way I was risking eating any of that again. Ugh.

Last Sat. night our cat Calvin walked into the office with one eye closed. Luckily our vet has hours on weekends so the next day we brought him in and he had conjunctivitis. So a week of ointment in his eyes, three times a day. Thankfully he is a patient and sweet cat so he has let us put the goop in. Some of our previous cats (for those who remember him I’m thinking of Sidney in particular) would have clawed us to pieces before letting us do that to him!

Z. came downstairs a little while ago to get some water to bring up to bed and says “uh oh”. Not a good sign. Ends up the ceiling in the kitchen is leaking (we’ve had a couple days of rain). We have an estimate to get it fixed but A. wasn’t sure that the roof really needed all the work the roofers said it did. Well, apparently it does, he just went up and checked and sure enough, the parts he thought were dry, were wet. Drip, drip, drip, drip….

Oh there’s other stuff too but those are the highlights. My back pain is still an up and down thing, still good days and bad days, but in general I would say that it is better than it was. But when it’s bad, it’s just as bad as it ever was. My thigh is the worst in a way, it hurts and is numb and itches all at the same time and makes me crazy. I still get spasms in my back daily but I’m managing. I am really hoping that the radiation will help. The dr. I spoke to last week said that it might hurt worse initially as it will get inflamed, but by the end of the treatment it should be starting to feel better. Let’s hope. I am really ready for my life back.

Z.’s back in school and happy. I am happy too, glad to have a little time to myself again. The next few weeks is filled with dentist and oral surgeon and orthodontist appts. for Z. and of course my radiation appts. I did have an appt. with my new lymphedema dr. but that was the food poisoning day so I postponed it. I may have to reschedule it again though as my radiation schedule has been pushed out.

My blood pressure is back to normal but my blood sugars went sky high. They might be coming down, but I need a few more days to know for sure. I’ve lost 5 pounds in the last week or so as my appetite has decreased lately. Could be from stopping the Megace (which increased my appetite), I’m not sure but I don’t mind the weight loss. 5 more to go to be where I was about a year or so ago. We won’t talk about how much in total I really need to lose, let’s just say that 5 pounds is fairly meaningless, but I’m just glad to have the scale moving in the right direction. I don’t mind the lack of appetite, but it does make it hard sometimes when I need to eat to take my pain meds. Like I need to right now actually.

So all the catching up is done now and maybe I can just write about whatever strikes me and not have such long silences.

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