Ain't No Sunshine

Not in my little world today, that's for sure. I just felt crappy all day and so I didn't go to work on what woulda coulda shoulda been work day number 2. I was so disappointed! I didn't stray far from the sofa all day and just watched Olympics and slipped in and out of naps.

My joints actually ached today. My stomach was a little upset all day and during the night last night. I had a headache. I was tired from not sleeping well. For the first time in a long time even the place where my PICC-line was inserted hurt a little, too! What's with that?! I must say, though, that I've noticed some correlation between my feeling tired and my joints hurting more. I have no idea why that would be so but it seems so nonetheless. It's not just that I have less tolerance for pain when I'm tired, my joints are actually more stiff and sore. My fingers were so stiff today I had trouble doing some things that I can usually do without any problems ... such as opening the container I keep carrots in.

Instead of staying in bed and sleeping longer in the morning I got up hoping that once I was up I would feel okay but it didn't work that way. I had hoped to get to work a little earlier today ... say, around 10:00 ... and then I planned on going in at 1:00, but that didn't happen and by 1:20 I gave up any thought of it.

So I've been a little bummed all day and I still don't feel quite right.

All I can say is that I hope I feel good tomorrow and I plan on being in my office at some point.

After reading today's post, please don't send me any cheery notes or suggestions of ways to improve my lot. Just think a little wish to me for a better day tomorrow ... and the next day ... and the next day, which is what I know you are all doing anyway (thank you so much ... it means so much to me).

I became cranky (and I almost NEVER get cranky) as the day progressed and I don't have much capacity for cheer tonight. Tomorrow. Tomorrow I will. I do know that there will still be tough days to come and that returning to "real life" won't happen over night. After everything going so well yesterday, though, I didn't think I'd feel so lousy today already. No wonder I'm a little bummed. But don't worry. I'll get over it. I've already started making adjustments in my mind. I do think the way I feel today is an anomaly. So let's all try to forget that today happened for me.

It is also in the back of my mind that Tamoxifen can cause depression. Many women on Tamoxifen are also taking an antidepressant (to treat depression and/or hot flashes). Several women stop taking Tamoxifen entirely because of this particular side effect. And, just to throw another kink into the mix, new research indicates that some of the most common antidepressants being prescribed interfere with the effectiveness of Tamoxifen (Here's a link to information about that). Why I mention the link between Tamoxafin and depression is because it's uncommon for me to feel the way I do today, though I think I thoroughly deserve to feel this way from time to time. That said, if feeling this way becomes commonplace for me, I will be on high alert to it being a possible side effect of the drug. I have never in my life felt depressed and for me to feel that way more often now would strongly suggest to me that it's a chemically-induced feeling.

And you can bet I've been contemplating my joint and drug issues and as much as possible I have plans, back-up plans and personal deadlines for signs of improvements. I think about it a lot. I follow the status of current research a lot. A lot. A lot. I bet I know more about the research than most (and maybe all) of my doctors. As much as I wish there was some way to make this joint problem go away NOW, trust me ... I have done my research and I have set my own limits as to how long I will let this last before seeking further consideration from doctors. There is no magic pill I can pop to make all this go away. I'm not being ridiculously patient. I think I'm being as patient as I'm required to be based on what I've been told by doctors and what I've learned from my research. And I know I have to wait a little longer before trying to get some medical answers and, from what I've learned, there may be no answers. There aren't always answers. I know that and stamping my feet and having tantrums won't make one iota of difference so I might as well keep calm and carry on.

Here's to a better day tomorrow!

Ain't No Sunshine

Guinea Heather

Last night I could feel anger rising and even though I fell asleep exhausted by 11:30, I was awake at 3:00 a.m. thinking and getting angrier with every minute. I finally got out of bed and did some research on Arimidex and its side effects. Again.

I don't get angry very often so I allow myself these rare moments and believe they're good for me and will help me in the long run even if it's just to motivate myself. I'm sure we can all stand to get fired up a bit every now and then.

I found a discussion on Arimidex that started in 2006 and still carries on. I read the whole thing, which took more than 4 hours (all 450+ comments). It was so comforting to know that there are so many others that share these awful side effects from the Arimidex.

I had fully expected, based on what my oncologist suggested, that my side effects would have subsided by now but I see no real improvements. In fact, some days lately my fingers in particular seem worse. It helped me to read that some women didn't feel improvements until even 3 or 4 months after quitting Arimidex. Then again, there were a couple who after 5 and 6 months hadn't seen any improvements and there were some who felt some improvements but had some lingering side effects as well.

There were a lot of questions about the possibility of permanent damage from the drug and a lot of frustration expressed with doctors and the manufacturer of the drug (AstraZeneca) who do not warn patients about these relatively common and debilitating side effects. In fact, it seems that AstraZeneca really doesn't know about long term effects and how to best manage the side effects that are being reported.

I feel like a Guinea Pig! That wouldn't be so bad if I had CHOSEN to be a Guinea Pig! It makes me angry.

Still, I feel better after having read more about other people's experiences and having learned that it might just take a little longer yet for me to feel some relief. So many people's descriptions of their symptoms and frustrations echo my own ... like the woman who can hardly get herself up off the floor or in and out of the tub ... the women who try, try, try to get exercise but find it such a struggle ... and the many women who report that they feel ancient and crippled ... the women who report their hands feeling like claws ... those whose doctors tell them the joint problems aren't their concern - go see someone else. So many. So similar.

All of that aside, it's worth saying that some people are able to handle the drug very well and so it's worth trying based on its potential benefits. It's supposed to be better than Tamoxifen (for post-menopausal women) in preventing recurrences. But for many of us, I see, it becomes a quality of life issue and many choose to stop taking the drug. I'm one of those, though I will try Tamoxifen. I read that many women who had trouble with Arimidex were able to better tolerate Tamoxifen. I'm still waiting a little longer before starting it, though, hoping that my joint problems will subside first so I'll be able to distinguish the side effects of one from those of the other.

I have my moments of frustration and anger with these side effects. I had fully expected to be well on my way to recovery by now but these joint and muscle problems make recovery seem like such a distant possibility. I so want my life back and this is the only thing that really seems to stand in the way of that. I expected full recovery from treatments to take time but I hadn't counted on this. It only makes me angrier that I wasn't given a head's up about it. I expect full disclosure from doctors and pharmaceutical companies so that I can be making informed decisions. I wouldn't be so angry about this if my decision to try Arimidex had been a fully informed one. I feel duped!

I also feel pretty tired. No yoga for me this morning. I think I have to go back to bed now that I've researched, read and now vented to my team! I'd better take myself out of the game for a while because I feel like I might otherwise get myself kicked out. Go ahead, though, and slam some cancer baddies into the boards for me while I'm on the bench cooling down.

Sorry for not having anything more positive to report this otherwise fine Monday morning.

Guinea Heather