Archive for June, 2010


My latest symptom (side effect or whatever) is numbness in my mouth. Mostly on the left side (the opposite side of the tumor, the opposite side of the numbness that I have had and continue to have in my right thigh). It began slowly as I went back on the steroids but really took off over the past week. It feels like I’ve had a shot of novacaine at the dentist. It’s driving me nuts. I hadn’t told any drs. about it until today, not because I was hiding it but because I figured the pain management dr. (who I had an appt. with this afternoon) would be the dr. to mention it to and since I had the appt. scheduled it could wait till I saw him.

He was glad that I don’t show any neurological symptoms with it, just the numbness, but I still need some kind of brain/head scan (ct and/or mri). He’s going to talk to my med onc about it and see what he thinks. Also he is going to work on getting me some extremely heavy duty and hard to get pain med for my mri that I need on my back (and also see whether it’s possible to do the head one at the same time). It’s a type of fentanyl that dissolves in your mouth, works extremely fast and hard and then wears off in an hour. Should solve all the issues I have, but of course it’s very, very strong and because of that has a huge amount of red tape involved. It may take a week to get approval, if I get approval. There is one pharmacy in the whole country that dispenses it and it would be fed-ex’d to me. Kind of a scary, I hope it doesn’t make me sick while I’m in the machine. I’m hoping it just puts me asleep. He would like me to have this for those extreme times that I need it, which unfortunately have been too often these last few months.

He also noticed how badly my pain patches are sticking (or should I say not sticking) to my skin. He allowed me to try to work on that before giving me yet another patch (since I’m not getting the full amount most of the time). The humid and hot weather are what’s making things worse. I may have to do some pharmacy shopping (oh joy, I get to pharmacy shop for narcotics, bleh!) to see if I can find a reliable pharmacy that carries a better patch. Right now I have a very reliable pharmacy, but the patches stink, or a very unreliable pharmacy that carries patches that are smaller and stick better. Neither one is acceptable but I’ve been going for the reliable one because the anxiety of running out of pain meds is too much for me.

Meanwhile one more day to get Z. ready for camp. I’ve barely done anything because I am asleep most of the time lately. It’s a fatigue that is beyond tired. A. seems just as sleepy as me sometimes, in fact at the drs. this afternoon (he went with me because I’m not driving these days) while we waited for the dr. and nurse to come back in with my instructions and scripts we both were dozing in the chairs. I spent the whole evening sitting in front of my computer asleep (and much of the afternoon when I was home). This is why I hardly can respond to emails, label and gather Z.’s clothes or do any research on our potential trips. I sit down and zzzzzzzzzzzzzzzzzz.

Which is where I should be now, but of course now that it’s after midnight I start to wake up. Why is sleep so strange that way? But I think if I go up to bed and put my laptop on my chest and try to do something (or read a book) I’ll be sound a sleep in no time. While not getting sleep at night makes things worse, actually getting sleep at night doesn’t seem to make it much better, I still am sleepy all day. I think it’s all the pain meds, but who knows. Could be all the stress lately. A. and I are both feeling the effects of that. We’d better figure out where to go for our little getaway soon, I think we both really need it!


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scan today

I had my pet scan today and boy, that was a really painful ordeal! I just couldn’t be on my back without being in unbearable pain. Normally a pet is about 45 minutes, something I couldn’t do. But they have a new machine and it was supposed to be cut down to 15 to 20 minutes, but I couldn’t get by a couple minutes, never mind that. The tech called the physicist in and we tried various things, positions were very limited by the test, but he found a one inch pad which helped as the hard board backing of the machine killed me. We also tried my belly but that didn’t work. Then we tried some rolled towels in various places around the small of my back, upper thighs etc. and managed to get it to the point where I thought I could bear it. It was very hard, and mid way through I almost gave up, but I kept myself going, moaned a lot (and got reprimanded by the tech because I think he thought I was moving my mouth/face but I wasn’t) and eventually I got through it and it was done. I am exhausted!

Anyway I got a call from my med onc, who for some reason is the dr the radiologist called even though the rad onc is the one who ordered the scan. The results are that there has been some improvement, but since my pain is getting worse they suggested an MRI to look for nerve damage,edema, some cause of my increased pain (not sure what they will do about it but one step at a time as my med onc told me today). I’m not sure how I will get an MRI (45 minutes or so) without being knocked out completely though, but I see my pain management dr. on Thursday so maybe he has some ideas. I haven’t talked to the rad onc yet, but she’ll call either later today or tomorrow once she gets the report.

So all in all, good news, in that the cancer continues to lessen, albeit slowly, and there is more of an attempt to deal with finding the exact source of the pain. And it looks like we can begin to start planning our summer trips, first a long weekend for A. and I while Z. is in camp (she leaves this Sat. and I have done nothing to get her packed and ready. I’m really just overwhelmed with everything right now) and then our trip to Hawaii for the three of us later this summer.

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I called the pain management drs. yesterday and spoke to the nurse late yesterday afternoon. She then spoke to the dr. and called me right back. So he said I was to go back on the steroids, only a short boost to start, two 2mg doses per day for 4 days and then one 2mg dose thereafter until my appt. in 2 weeks where we’ll see how I am doing and see what to do next. He also said to add another pain patch (that makes 4, two on my upper arm, two on my upper back). I started this all last night and woke up this morning feeling much better, but it will take at least a couple of days or so to really feel the effects of the pain patch and probably at least the same maybe longer to feel the steroids effect.

I’m frustrated, I really wanted to get off the damn steroids this time, I was determined to make it through the pain and ill effects, but I just couldn’t. Not only was it bad, really bad, it’s also the last weekend before the closing on my mom’s condo next week and I’m really busy with that. I couldn’t deal not only with the physical work I need to do, but the mental work. Just writing an email was truly exhausting and at times impossible. Working at the computer at all made me nauseous.

Well hopefully I will continue to feel better and better over the next few days. Next week, besides the closing is also Z.’s bday and her sleepover bday party. I have a lot of stuff to do involving making dr. and test appts. and having various dr. and test appts. over the 2nd half of June and beginning of July, besides a lot of other things, but the medical stuff always drags me down. I HATE making and attending medical appts., just hate it. Ugh.

Now I think I should go lay down and take a nap, or maybe wait and eat lunch with A. and then go. I need to get as much rest as I can so I can get as much energy as I can for the clearing and closing.

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As in I’ve been feeling like lately. I have been weaning off the steroids, guaranteed to make me feel awful in many ways, fatigue, weight gain, other worldly, more than fatigue, it’s falling asleep while eating dinner kind of tired, nausea, oh,┬áthe pain just gets so much worse, which is why I am weaning off of them again. I always end up back on them because of the pain increase. I also have had a bad case of lymphedema flaring up in my right leg, which is the other leg when it comes to lymphedema, but the same leg as my pain (which travels from my lower back around my hip and into the front of my thigh down to my knee, but not below).

I saw my lymphedema dr. last week and she sent me off with a handful of prescriptions for tests and physical therapy including being fitted for a nighttime compression garment because I refuse to wrap. Think of wrapping your entire leg from your toe to your waist in something similar to an ace bandage every night before bed. Not gonna happen, so I will pay whatever it costs, regardless of insurance coverage for a garment that while still be difficult to get on and off, won’t be wrapping myself like a mummy every night.

I have started the every weekend trek to my mom’s condo three plus hours away till the closing to clear out the condo and of course there are big glitches coming up that our lawyer swears will not delay the closing. He’d better be right, I can’t take the anxiety already, never mind if it screws things up. I have also got myself into a volunteer situation for Z.’s school for a fundraiser for her 7th grade trip to Costa Rica which blindsided me with a ton of emails from this that and the other with things to sign and decisions to be made when I haven’t a clue what is going on.

Meanwhile I can barely function. Driving is hard as I get sleepy at stop lights and the pain makes it hard to move my leg (right leg, the driving leg). I managed to get to my support group on Tuesday but that’s it, I haven’t been out since and haven’t gotten any of my errands done and tomorrow we are off to the condo for the weekend. Mostly just sleeping and getting out of bed and eating breakfast is a struggle enough for the day. Maybe by afternoon I start to get some pain relief but it doesn’t last. I did get laundry done, about 13 or so loads over the last three days. I don’t carry the laundry baskets up and down the stairs (well, sometimes I drag them down, okay, most times, and I also drag them up the stairs too, then I pay for it the next day with more pain, but it’s just about the only thing I feel like I get accomplished and I need that feeling of accomplishment or I will get depressed).

Good stuff, we did manage to get to Cirque du Soleil on Sat. night to see Ovo. Wow, it was so good, it was definitely up there with my favorite shows. It was especially wonderful to get to stay for the Q & A after the show where the ladybug lead the discussion. She is so cute!! We got there quite early so had a parking space about as close as one could to the entrance which was helpful as walking has become very difficult because of pain lately. The other thing is my ears have this pounding thing that happens when I stand up from sitting, especially if I’ve sat a while. It’s like sinus, like when you can feel your heart beat in your ears and it makes you dizzy. I think I am going to need a cane for those times if this doesn’t go away. It got better for a few days and then started up again today. A. said that a storm is coming, he thinks it’s changes in barometric pressure. I have had this problem in the past but it’s been years.

All this stuff is making me feel like my health is deteriorating and it’s scary. It’s hard not to think it’s cancer related, but I am trying to take this all one day at a time. But that’s hard. But I try.

Life is just been a struggle lately. I try to focus on the good stuff. Like we want to take some of the proceeds of the condo sale and go to Hawaii this summer, so I am spending some time reading guide books and on airline sites figuring out multi-city flights. I can’t book anything till I get my scan results later in June, but in between nodding off while reading the books or the computer (I can barely stay awake while reading these days) I enjoy the research.

Okay, now I really have to get some sleep, it’s almost 3am.

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