Archive for February, 2009

I never really did get around to posting about the pain management appts. and what I was doing. I’ve been three times now since November. The first appt. was the week after Thanksgiving and the dr. prescribed the tricyclic anti-depressant desipramine which works well for some people with chronic back pain. I started it slowly, adding another pill each week till I was at 4 pills (100mg). Over that month I noticed a few things, my blood sugars were going up and my heart rate was going up. I was having problems breathing after going up the stairs (not while I was walking up the stairs, or in the immediate seconds after I got to the top, but after a few seconds I would then be hit with breathlessness. If I sat down it would pass very quickly, if I stayed standing it took longer and sometimes I would feel nauseous). The other side effect was constipation but that didn’t kick in till I was taking 3 pills a day. The pain wasn’t any better but they told me it would take at least a few weeks.

The next appt. was New Years Eve day which also happened to be the day I found out about my clean scan. The dr. felt I needed a bit more time on the meds to see if they were really working. He also ordered a blood test to check the levels of the drug in my system (which turned out to be quite low but they weren’t rechecked again after that). Since one of the bigger concerns was getting me off of such high amounts of ibuprofen (at this point I was taking about 1600mg/day) he gave me a low dose narcotic (short acting morphine- he felt this was actually safer than taking so much ibuprofen, but he also felt that I would probably need some ibuprofen each day for it’s anti-inflammatory action). So, off I went to see how that would work. I spent much of the next month trying to deal with all the side effects of the drugs. I have to admit that it put a damper on my good news because I just didn’t feel right all the time. I did however find that the next day (after my scan report and pain dr. appt.) that my pain decreased significantly (not a surprise as stress does increase it however it usually takes longer to ease back down). I didn’t start trying out the morphine till the day after that. I had a few days of nothing much scheduled so I could deal with the initial side effects it would cause (loopeyness, tiredness, and the long term effect of even more constipation).

So, I had been told to take it once or twice a day. I quickly realized that taking it at bedtime was good. The anti-depressant was seriously screwing up my sleep, I felt like I was awake all night, even though I did actually sleep (sometimes). The morphine neutralized that most of the time and it was heaven to be able to enjoy my sleep. I still woke up a lot, but it was much easier to fall back asleep. I also realized that there was no way I could take the morphine when I had to really function, even after I got used to it. So at first I would take one in the late afternoon/early evening and one before bed (they only last 4 hours, although in my case it would often take an hour or so to kick in and then last for about 2 hours, except for sleeping where it seemed to last longer- generally I got 5 to 6 hours of relief from the ibuprofen/tylenol combo). After a while I realized that I didn’t like that, except for the fact that it calmed me down, my heart rate being higher from the anti-depressant was making me jumpy. Some nights it actually made it harder to sleep as my head was being all weird. Hard to explain but I had weird images and thoughts darting in and out of my head as I was trying to drift off. I didn’t like it at all, so I decided to only take one at night and skip the earlier one (I did try cutting it in half for a bit, but it didn’t help the pain so what was the point).

One day, after speaking to my support group leader about my jumpiness I realized that the caffeine I was getting from my beloved mugs of green tea was not helping matters, so I switched to decaf (yuck!). It helped a lot, but after a week I found I could handle one mug of regular green tea a day if it was in the morning.

Over the course of the 6 weeks from the NY’s Eve day appt. I found my pain was in general not too bad. I took about 400-600mg of ibuprofen a day (and 1000 to 1500mg of tylenol with it) and one morphine tablet at bedtime. But I still had my usual ups and downs, with some days being really difficult. After getting some time with it I realized that while it was a “good period” it was not really different from my usual ups and downs of pain during any given period. The breathlessness was driving me insane, not only with things like stairs, but something like getting out of the car, walking a few steps up the porch, a couple more steps to the front door, unlocking the door (which takes strength, the lock is really fussy and the door is this huge 3 inch solid wood thing that you have to push with your whole body to get in) and do the alarm pad, was also getting me breathless, especially if I was talking at all during that time. Crazy! I was extra careful with my eating but my blood sugars were still higher than they had been. The constipation wasn’t fun, it ran cycles of about 2 or 3 days of not much to 1 day of spending a lot of time in the bathroom, ugh. Plus the side effects from the meds for that were making me uncomfortable (gas, crampiness). I was feeling like I was taking meds on top of meds to help with side effects from each other.

So I decided I wanted off of the anti-depressant (which takes time to taper off of, so I couldn’t just stop). I felt like I could probably get a similar baseline of pain relief from acupuncture (but I need to find a new acupuncturist and actually call and make an appt.). A couple days before the appt. with the pain dr. (which was earlier this week) my back started acting up badly, so it reinforced my opinion that the a/d wasn’t helping much. The dr. agreed with me and gave me instructions for tapering (cutting out one pill every 3 or 4 days). If I find I have an increase in pain then I call him. He gave me a new script for morphine (enough to take one pill a day if I want to take it) and told me to come back in three months, but to call if I needed anything.

So I’m tapering, tonight I will go down to 2 pills for the next three days. I feel no different at this point (well except that after a couple days my pain lessened back to the baseline I had during the last month or so). I don’t know how long it will take to get the drug completely out of my system once I finish with it. I’ll have to wait and see if the heart rate and blood sugar things resolve themselves.

When I initially made the appt. for the pain management center I thought that my pain was cancer related (both by the tumor and by the side effects caused by cancer treatments). Since the tumor is gone and it hasn’t really changed the pain both the dr. and I think that it’s not likely caused by the tumor (although there is evidence that tumors, once gone, can still continue to cause pain), but more likely caused by the long term effects of the radiation and surgery. And stress, that’s definitely a factor in my case. I don’t think it’s the cause, but it certainly can make things worse. I read a book by Dr. John Sarno, Healing Back Pain, which talks about how much chronic pain (regardless of physical things like herniated disks and the like) is a tension muscle thing (he has a much more medical sounding term for this) that is caused by suppressing emotions and believes that once one is aware of this, the pain will go away. I tried real hard to believe this idea and work with this and ended up with some of the worst pain I’ve ever had. Not sure what that means. But I then realized that he never mentioned backs that were screwed up by radiation damage and surgical adhesions. So maybe this concept doesn’t apply to me. I go back and forth between wanting to deal with finding the actual cause (and if it truly is what we believe it is, it doesn’t really help matters because there is nothing to “fix”) and just wanting relief. I’m in the just wanting relief phase right now. Just let me get on with my life thank you. But I have also realized that this is my life, I have good days and I have bad days and I can’t predict when they will be. Sometimes the bad days will be when my life is relatively quiet and I can lay low to some extent, and sometimes they’ll be in the middle of a vacation or very busy time in my life and I will have to medicate like crazy, wear heat packs around my waist constantly, and just get through it.

So that is my foray into pain management. Not exactly a success, but at least I tried, and I really liked the dr. a lot. At the time I made the appt. I was at my wits end and needed to do something. One good thing that came out of all this was that I was again able to sleep on my “good” side for at least part of the night (I hadn’t been able to in months and it’s hard for me to sleep deeply on my back, or fall back asleep if I wake up). I’m hoping I won’t lose that, but it’s not worth all the side effects to stay on the a/d if that’s the reason I could. We’ll see how it all goes.


Read Full Post »


Lately there’s been discussion around our house about Z. and what kind of camps she may want to do this summer. She’s already signed up for 3 weeks of zoo camp again, this time she’s doing it with a friend. She’s got her eye on a couple nature camps and possibly a week at an overnight camp. Usually she does about 6 weeks of camp in the summer. A. and I were talking about possibly taking a week this summer for the three of us to go on a vacation (no ideas where yet).

The thing I realized this morning is that I am making plans. I am not thinking, “well I can’t really make plans because I don’t know if I’ll be doing chemo then”. I am making summer plans as if I am a normal person who can make plans 6 months in advance.

Wow, it really hit me that I am starting to process the news that the tumor is gone. It’s there on the surface, but this is deeper down. The making plans thing has been a big issue with me since my first cancer diagnosis in 1998. So maybe I am beginning to relax a bit more into this.

Read Full Post »