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Archive for August, 2009

pain meds

I had hoped for a magic bullet but of course there isn’t such a thing. I’m sitting here this morning dozing in and out of sleepiness because I ended up having to take a muscle relaxant last night to sleep.

I took the long acting morphine pills Wed. night and had the best nights sleep I’ve had in ages. I thought woohooo, this is great! The next morning I didn’t need the ibuprofen/tylenol that I usually take before even getting out of bed. I took my next dose of the long acting stuff mid morning (they are supposed to be 12 hours apart so I’ve decided on 10:30am/10:30pm). Around 12:30pm I started feeling some pain so took the ibuprofen/tylenol. Did pretty good the rest of the afternoon although I had a bit of a woozy feeling around the eyes (hard to explain, kind of like drinking a little wine) but the pain while not 100% gone, was very livable.

We took Z. to the children’s hospital for her pre-op appt. (for her teeth/wisdom teeth extractions she’s having in a few weeks, because of the wisdom teeth being attached to the bone at this age, it’s an OR thing with general anesthesia. This is all orthodontia stuff.) It all went fine but we were there a long time and got out at rush hour. On the way home we decided to go out for dinner near our house, a microbrewery with incredible flatbread pizzas (which is a no-no for my blood sugars but once in a while I say screw it, but if I am going to eat pizza I am going to eat really good pizza). We had a really lovely dinner, I had some wine, A. had a beer, Z. had a black cherry soda. A. and I split a spinach salad which Z. actually tried a bite of (didn’t like it but you could have knocked me over with a feather that she even wanted to try it). Z. had a small tomato sauce and mozz. cheese pizza and A. and I split the large flatbread special of the night, purple basil pesto, some kind of smoked cheese that I can’t remember, mozz. cheese, heirloom tomatoes marinated in olive oil and herbs, and that’s all I can remember. It was so delicious! Z. had a big bowl of locally made vanilla ice cream (which she graciously let me take about 4 spoonfuls of) and A. had some sweet potato cheesecake (which I also got a few spoonfuls of). I felt great and commented on it.

So then we get up to leave and as I am walking down the street my hip and thigh start to hurt. So when we get home I took a 1/2 a morphine (the regular kind) and my other vitamins and pills I usually take with dinner. The pain didn’t really go away. So at 10:30pm I took the long acting morphine and an ibuprofen/tylenol. Again, the pain didn’t really go away. By the time I was in bed (after midnight) I was in a huge amount of pain so I took a muscle relaxant and put on a Lidocaine patch and laid on my heating pad. It took a while but eventually the pain subsided enough and the pills made me sleepy enough that I was able to sleep. I woke up feeling fine and so far this morning am okay, although I can feel the pain starting up a little again.

So, no magic bullet like I said. The new pills can work great, or it can be like I have taken nothing, just like before. Sigh. I know that this pain management thing is a constant up and down thing, tweaking this and that, trying this and that. I am just glad that what I ended up taking last night finally worked but geez, I couldn’t do that during the day and still be able to pick up Z. from camp or school or bring her to piano lessons, etc. Even yesterday I wasn’t feeling so comfortable about driving with that wooziness (which should go away after my body adjusts, in fact today, while I’m sleepy from the muscle relaxant hangover, I don’t have the woozy feeling). When you add chemo side effects to all this it’s going to be so much fun!

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my drs. appts. today

So I saw my med onc today who wants me to see the radiation oncologist to get a final determination as to whether or not I can get any more radiation. I suspect not, but we’ll see what he says. The last time that I saw him he didn’t have the one piece of information that would tell him exactly how much radiation I have had where (the other hospital faxed it to him, but when you fax a color graphic it comes out as one big black blob so was completely useless to him) but since I was stable at the time he said to wait till things changed to revisit it. It doesn’t matter how pinpointed the radiation is there is always some overflow, so therein lies the risk. The tumor is in a really tight spot with important organs and aortas next to it. So I will see him in a week.

If the radiation is no go, then I will have to start chemo. Ugh. It will be the same chemo I did when I was first diagnosed (back then it was a preventative measure, I had no measurable tumor), taxol and carboplatin. I’ll lose my hair again, be sick the first week, feel better for two weeks and then back for another chemo. I’d do two cycles and then get rescanned to see if it is working or not. Then we’ll take it from there. My med onc prefers to do a localized treatment, like radiation (surgery would be another local option, except that it’s not an option in my case as it would likely kill me) rather than a systemic treatment like chemo, but there’s only so many options we have.

Meanwhile I get to go off the Megace (the hormonal treatment- a pill- that I’ve been taking for over a year and a half now) so we’ll see if my blood sugars lower, my appetite decreases and I actually can lose any weight. It’s an easy treatment in many ways but it has it’s side effects.

I also saw the pain dr. and he’s put me on a long acting morphine, with the short acting morphine for breakthrough pain. The pain has been getting pretty intense and having a big effect on my daily life. He’s sure that I won’t have as much sleepiness with the long acting kind because of my pain level (and because it’s a slow release) so hopefully he is right. I’ve only been able to get three hours of pain relief at a time (when it works, which is crap shoot) and then it’s back again, so I’m really hoping this will help. I’ve got things to do and it’s making it hard to get anything done. I am very frugal with my pain medication though, the dr. says I’m barely taking enough to do anything. He’s hoping the long acting type will help keep me at a more even level as now I have these peaks and valleys all day long and it’s truly exhausting.

So, that’s pretty much it for now. I’m disappointed of course that the tumor is back and that I am dealing with the likelihood of chemo. I knew it would happen sooner or later, but I sure had hoped for much later. The good news is that the cancer has stayed confined to the one tumor, it hasn’t spread to other organs which is a really big deal. On the other hand this thing has been awfully tenacious, refusing to leave. While chemo is a bit like setting off an atom bomb when you’re talking about one tumor, maybe it will be the thing to finally get rid of it. Let’s hope.

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Telling Z.

It went okay, better than I expected and so far at least she seems fine. A. and I both picked her up from zoo camp and she knew something was up so asked what we were doing. I said we were going to donut day (our name for the Amish Festival they do once a year where they make these amazing fresh donuts, we try to go every year) but we had something to talk to her about. She said “oh great, am I in trouble?” No, you’re not, and then I told her about my scan results. Her first reaction was a moan and then said “when I’m 40 am I going to get it too?” We said we hoped not and that was why we tried so hard to keep her healthy (even though we were bringing her to eat donuts!). She said that maybe by then they’d have something they could do about it. We said maybe they would, we hoped so. So then she moaned again and said “does this mean we can’t go on vacations anymore?” and we said of course not. We have a road trip planned soon and we assured her that we would still be doing that. We explained to her that we didn’t know what treatment might lay ahead for me, but that we would do our best to live our lives as normally as possible throughout it. Then she said she thought it was ironic that we were going to donut day, which is a kind of celebrating kind of thing to do, after getting news like that. We said, that’s the point, we’re not going to let it stop us from having fun.

So she seemed good with it all and I thought her reactions were good too. She expressed her unhappiness with it, instead of withdrawing, asked some questions about immediate concerns, and then put it in perspective and allowed some humor. Since then we have been going on with life as usual, so she has too.

I see the med onc on Wed. so no news there but I did get a voicemail from my gyn onc’s nurse (I had called and left a message late Friday afternoon that I had had the scan and what the results were. This dr. is in the same hospital where I had the scan so he can pull up the results on the computer, my med onc maybe has the fax by now, but I bring in the cd disk and report that they put in the computer with me). Anyway, she said she talked to him quickly before he left for his vacation (I always get cancer things in August, it’s the worst time as everyone is on vacation). He said to talk to my med onc and that the two of them would talk when he got back from vacation and discuss what if anything needed to be done. Interesting choice of words, not sure if they are hers or his. In any event, we’ll see on Wed.

Meanwhile, pain, it’s been pretty bad, however I started taking a sedative kind of relaxant thing before bed the last few nights and it has helped (at least I am sleeping well). I am also taking a 1/2 a pain pill at lunch (in addition to dinnertime, I take a full one at bedtime), which helps. But there is still pain and it’s particularly bothering me in my front thigh (my back and hip too, but the leg has been particularly pesky). I get worried because it’s all on my right side, and that is my driving leg. If the pain is too strong it’s hard to drive. I have also developed some numbness in the thigh above my knee on the right side. If that gets worse than it also will affect my ability to drive. Driving is my connection to functionality. I need to drive Z. here and there and everywhere and A. can do some but not all of it. I dread the day when I lose that, life will be so much more difficult for us. So hopefully whatever the heck is going on they can reduce the thing so it stops pressing on things, that’s what’s causing not only the pain but the numbness I am sure.

I played manicurist with Z. yesterday, that was fun. I painted her fingernails red and we put white rose decals put on top (we went to the drugstore and found a package of 400 nail stickers). I’m not the best at this stuff but I can do a whole lot better than what she could do herself so she’s happy with it. If you’d asked me last year if I’d be doing my daughter’s nails I would have laughed in your face, she was sooooo not like that. So much has changed.

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I got my scan report this morning, but have not spoken to the dr. I will see him next Wed. Anyway, the report showed the tumor was still there and has grown since the last scan. You remember the last scan, the one where there was supposedly no tumor? Well apparently the tumor was 3.0 cm in Sept. and 3.7 cm in December (when it wasn’t there) and is now 5.2 cm. This is what the summary says:

1. Increase in size (since 12/29/08) of enlarged retrocaval lymph node/paraspinal soft tissue, now eroding cortex of adjacent L2 vertebral body, consistent with progression of metastatic disease. No additional metastatic disease identified in chest, abdomen or pelvis.

2. Further decrease in size of small cul-de-sac fluid collection since 12/29/08.

Later on in the report they mention there is no ascites or free air in the pelvic fluid which is good. They also mention when discussing the tumor later in the report in more detail “The adjacent IVC remains compressed or atrophic at this level. No new enlarged retroperitoneal lymph nodes are seen.” I don’t know what the IVC is or what that means, but the gist of this report does explain my back pain and the increase in pain over the last year.

So, not good news in that I still have cancer and it’s grown. But honestly, the fact that the last scan said it was gone made no sense to me either, and I kept mentioning that, but chalked it up to a possible miracle and figured I’d wait for confirmation on the next scan to truly believe it. I guess my instincts were right. I am however really perplexed as to how 2 radiologists and the med onc could not see the tumor on that Dec 08 scan. I know ct works in slices, but still it was big enough to be seen, and how come this radiologist(s) can see it on that scan now? The attending radiologist who reviewed my scan this time is really good (he’s the one who did my u/s guided biopsy on the original tumor and who my gyn onc has asked to review my scans at various points during this journey) so I trust that this one is right more than the last one. But  I still don’t understand how this all happened.

In any event, I will see the med onc next week and see what he thinks about all this. The good news is that it has not spread, this is really important as spread to other organs is really bad. The bad news (besides the fact that I still have the damn thing) is that it continues to grow. So we’ll see what he suggests we do about that. I am not a candidate for surgery, and radiation is extremely unlikely and risky at this point (I’ve had too much we think and could end up with very serious complications) so that probably leaves chemo. Ugh! I’m trying not to think about that, yet mentally prepare for that possibility at the same time, no easy feat.

My ca-125 stayed about the same so I guess that is good. My kidney functions are still a bit off, but just a little (they had a bit of a dip last time but now they are back where they had been before) but the good news is my liver functions were completely normal (they had been hovering above normal, now they are smack in the middle of the normal range so that is good news). My A1C has reached the level of diabetic, so my internist suggests medication, however I will hold off on this till I find out if I am staying on the Megace or not, since going off that could lower it.

So I am still processing all of this. Obviously this changes a lot of things. First and foremost is I have to tell Z. what is going on and I am of course very concerned with how she will take all of this. She’s been doing so well these last 7 months and my hope is that she’s gained enough strength and skills to deal with this and not shut down or shut me out. We’ve gotten so much closer and I hate to see that change. I don’t want her retreating too far inward either. This is the worst part of all of this. I just need to be here for her to help her grow up, not just be alive but not be sick (or not appear sick, you know, like I need to function as her mom).

I have so much I need to do in the coming months, including finishing getting my mom’s condo ready for sale. I think one more trip in Sept. should do it, for me at least. I’ll probably have to leave what’s left for my brother to deal with when he comes up to sell it. I have to get Z. through her oral surgery at the beginning of Sept. and her braces being put on at the beginning of October. We’ve got a trip to FL, flying there and driving back with my mom’s car in August also. The busy stuff of life that things like medical tests and treatments can really mess up.

Back on the roller coaster. Not that I ever really got off.

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Scanxiety again

I had my ct-scan this morning, not one of my favorite activities in life. It’s been about 7 months since my last scan, the one that showed the tumor was gone. Since then my ca-125, which has never been below normal limits, went up slightly, but otherwise I feel about the same. Same back pain, same old everything.

Now that I am allergic to the IV contrast dye I have to take steroids and benadryl 12 hours and 2 hours before the scan. Since I’m fasting it makes pain relief difficult, but I just take my ibuprofen/tylenol without food as it’s better than nothing. Kind of, it really doesn’t work as well without food in general I find and between that and the stress I was hurting pretty badly all morning and some of the afternoon till I could eat (lunchtime) something and also take a half a morphine pill. I usually get a headache from the fasting, but this time was worse than usual and lasted through most of the day. It’s still under there, you know how you can feel that it’s not totally gone, but it’s okay because it’s not throbbing. It’s the kind over and under my eye/eyebrow/cheekbone, ugh, I hate that kind. And now my neck hurts, I think from having my arms over my head during the scan, I must have moved too quickly and pulled something a little. But physically I am feeling a whole lot better now than I was this morning.

Now I’m just left with my scanxiety. Oh how I hate this part of my life. Most of us, at least women my age, go through some anxiety every year with tests like mammograms and pap smears as do I (although pap smears don’t phase me in the least, I’ve had so much radiation in that area that I would be shocked if cancer ever returned there). So I think at least on some level most can relate to the anxiety, just imagine it intensified by the reality that one knows that ones body does cancer, and that ones body has done recurrent cancer, which means that regardless of what the scan says it’s likely that I have cancer cells in my body somewhere all the time. It’s just a matter of whether they want to get active or not, and then multiply enough to be seen on a scan.

I am really trying hard to put my mind into the “everything will be the same as before, no cancer will show up on the scan” frame of mind, instead of the “oh my god, they are going to find the cancer has not only returned but spread all over my body” frame of mind. It’s really easy to go from 0 to 60 when one is facing the unknown.

Here’s the monkey wrench, that stupid ca-125 test. I had bloodwork done on Monday and in the past it’s taken about 4 or 5 days to get the results back (when I add the ca-125 and some other tests the onc orders to my regular bloodwork my internist orders. The stuff my internist orders usually comes back the next day.). My internist emails me my results. So, if I get the email before I get the ct-scan results (which I am hoping will be Friday morning), do I open it and look at them? If my ca-125 has gone up it will completely freak me out, even though I feel stronger about the accuracy of the scan results than the blood results. So far I have had three done, the first one 10 points above normal (40’s, normal is below 32) and the next two going up 10 points each time (last one in the low 60’s). So far the docs aren’t concerned, however they said if it doubles they will be. But 20 more points and it will have doubled from the original test. At this point it’s double the normal limits. So far they say the points raised can be just variations from arm to arm or a tough blood draw (which I pretty much always have). So I am really hoping that I don’t get the email before the scan results. Maybe I should stop reading email for a few days, but I think I am too addicted to do that when I am at home. Hmmm, I suppose I could just disable that particular email address in my mail program, the one they use is not one I use often, mostly shopping. That’s what I will do, it will lessen my stress before the scan results and then I can put off finding out how bad my blood sugar, kidney and liver function tests are too 🙂

I often feel like the week I have a scan is a lost week. Life goes on as normal, but it doesn’t. I can’t focus well and can’t see beyond the day I find out the results. I lose my luster so to speak and feel drained and tired. It’s all normal reactions to the stress, but I still hate it. I was first diagnosed with cancer 11 years ago this month. I’ve been having scans every 3 to 9 months since then. Wouldn’t you think it would get easier, that somehow I’d become a pro at this? It hasn’t, in fact in many ways it has gotten harder. I know so much more now is part of it I think. That makes it easier to awfulize and awfulizing is one of my specialties (and some of you have been fooled into thinking I am such a positive person, and I can be, when I am feeling good and not having a scan that week).

Okay, so I’ll end on some positive things happening this week. Z. started zoo camp and is having fun. She was supposed to be with a friend of hers who is 11 (Z. is 12) even though the age groupings for the different camp sections are 10/11 and 12/13. I had it okayed with the camp director back in January when we signed up. So the first day she gets there and they say, hmm she’s 12, she belongs in this other group and move her. She never even saw her friend, in fact so far this week she’s only seen him from afar and waved a couple of times. They both decided it was okay so she stayed put, and in all honesty the group she is in is the one she really wanted to do anyway. Her friend’s group is the camp she did last year, and this one is a different camp experience. They are helping to raise terrapins and releasing them into the water at the shore the last week of camp. They also take one field trip each week. She made a friend the first day and is happy, so in spite of the fact that she won’t get to spend some time with her friend (who changed schools last year so she rarely gets to see him), it’s still good so I’m happy.

And we have a ton of ripe cherry tomatoes in our garden. They are delicious but there are only so many raw cherry tomatoes we (only A. and I as Z. hates raw tomatoes) can eat on our salad every day. I’m trying to decide if cherry tomatoes will make a good sauce as I could put them through my tomato press. Probably not, they are mostly skin and seeds when it comes down to it. We can cook with them too (they are good sauteed with shallots or mixed in with other sauteed vegetables) but I still don’t think we can keep up with them, so will probably have a lot of them rotting in the beds soon. Maybe cherry tomato gazpacho? Hmmm.

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