Waiting ...

... for the cedar waxwings. There are so many berries in our mountain ash trees. Usually the cedar waxwings swoop through en masse and clear the berries away. Last year they didn't. I hope they do this year, otherwise those berries end up all over our sidewalks and deck. Plus, it's a spectacular sight to see the cedar waxwings in action. The downside of the cedar waxwings coming through is that on their way out of the yard, they dump big (no ... GINORMOUS), lumpy, orange splotches on the cars and unless removed immediately, they can be mighty hard to remove. If you want to look for a positive in that, you have to imagine the snickering I did last time it happened, which was just after Kevin had so diligently washed his white car and had only just been home moments before it got orange-bombed! My car, parked right by his, didn't get a single orange dollop! It was pretty funny ... or at least I thought so. Kevin? Not so much.

Well. Yesterday. It got off to a good start. I felt good. I tracked Luke's lacrosse game. I went to work. That was good. I started to feel VERY tired around 4:00 but ... oh well. I had an appointment at 5:00 for a BIA (Bioelectric Impedance Analysis), which assessed my body composition and will help my naturopathic doctor and me map out a plan for improving my overall health and for measuring progress as we go. It only takes a few moments to complete the test ... as easy as stepping on the bathroom scale ... and bingo! There's a print-out of the results. My naturopathic doctor will go over them with me when we next meet.

When I got home, I was thoroughly and deeply exhausted. I was a lump for the rest of the evening and probably should have gone to sleep but was afraid sleeping so early would cause me trouble sleeping at night. It was just a useless night. I was too tired to move ... too tired to quilt ... too tired to blog. I did sleep a little better than usual last night, though. That's the upside of being exhausted during the day, I guess.

I did my best yesterday to avoid using my left arm any more than necessary. It's hard. Just try it. Even taking lids off jars, grinding pepper, adjusting blankets ... all those things cause little painful twinges under my arm. Not bad pain, mind you. Minor pain but I'm shooting for NO pain at all. Of course, in avoiding use of my left arm, I've increased use of my right arm and between that and a very painful, reactive attempt to catch a glass of water before it tipped over, my right shoulder is now VERY sore. It's okay if I keep it still or move it in a limited range ... no pain at all ... but even the slightest "twisting" motion with it causes a lot of pain. Just try getting dressed without twisting your arm or bending it back even slightly. Not easy. In fact, I haven't found a way yet and so I keep reinjuring my shoulder again and again, which leads to more inflammation and more sensitivity. I'm doing as the physical therapist recommended last fall and letting my arm hang loosely every now and then, which really does feel better, but I also need to stop reinjuring it. If only I could get dressed and undressed without moving my arm. That would make the biggest difference. Not wearing a coat would help. Soon. Soon.

So, just in case I haven't complained enough, there's more. If you can believe it! I tell you, it's positively demoralizing.

So ... this morning ... I wake up. I slept well. I still don't feel very "bouncy", though. I go to the bathroom. And great. There's blood. Not much. Just a bit of spotting. Not pink. Not dark red. That bright, orangy-red. I'm not supposed to be having any of that anymore. And this is where I gave a little prayer of thanks to my friend who warned me of a similar experience she had shortly after starting Tamoxifen. For her it turned out to be nothing she needed to immediately worry about but it is a sign of something that can be potentially nasty so I suppose I have to have it checked out.

I grabbed my sheet of information about Tamoxifen side effects and there, under "rare side effects" is:

"Increased risk of cancer of the endometrium (unusual vaginal bleeding may be a sign) - tell your doctor or nurse as soon as possible if you notice any unusual vaginal bleeding".

And here, from the U.S. National Cancer Institute:

Abnormal vaginal bleeding and lower abdominal (pelvic) pain are symptoms of cancers of the uterus. Women who are taking tamoxifen should talk with their doctor about having regular pelvic examinations and should be checked promptly if they have any abnormal vaginal bleeding or pelvic pain between scheduled exams.

Of some comfort, along with the "warning" my friend already provided, I found this information:

"Cancer of the womb occurs more commonly in women over the age of 50. In most cases, it presents early with vaginal bleeding. This is why it is most important to report to your doctor early any instance of unusual vaginal bleeding. What do I mean by unusual? Well, in women who are past the menopause, any instance of vaginal bleeding is unusual ... However, it is most important not to panic if you do develop vaginal bleeding while taking tamoxifen. The reason is, because tamoxifen acts like oestrogen on the lining of the womb, it is very common for it to cause a build-up of the normal lining of the womb, which occasionally is shed, a bit like a normal period. In more than 90 per cent of cases,vaginal bleeding in women taking tamoxifen is completely benign. However, the only way to be absolutely certain is to see your doctor, who will probably arrange for a uterine biopsy to be performed. Nowadays, this is a simple rooms procedure which does not require a general anaesthetic. There are occasions, though, when your doctor may wish to perform a dilatation and curette under general anaesthetic."

So ... Great. Just great. Cancer isn't for everyone, you know.

Am I winning yet?

Waiting ...

The Not Quite Incredible Shrinking Woman

Speaking of weight, I'm surprised and cautiously optimistic about my recent slow but steady weight loss! I'm almost afraid to mention it in case I jinx it!

While I lost weight with some of my chemo drugs (FEC, to be specific), I gained weight on the other (taxotere). Overall, I gained 10 to 15 pounds during the course of my cancer treatments ... caused by a combination of chemo, steroids, inactivity. Fifteen pounds is considered the average weight gain one might expect during cancer treatments. Now that cancer treatments are over, I have the responsibility for losing what I gained. Oh joy! It's important for many reasons to maintain a healthy body weight. Women who maintain a healthy body weight are less likely to have their cancers recur. That's one of several incentives.

I have been struggling against weight gain for the past 7 years. It just slowly started creeping up on me after never having had to worry about it before. I've never had any particular problems with overeating or eating too much high-calorie junk. When I made concerted efforts to lose weight, I found it very hard. I could muster the will power and stick to it for a good, long time but even then, I could only lose a little weight and then I would plateau and it seemed like no matter what I did, I couldn't lose any more. This was one of the reasons I was seeing my doctor at the time I was diagnosed with breast cancer. He told me to "get more exercise", which was frustrating to hear and I knew that wasn't the complete answer.

Since having breast cancer and learning a little more about hormones, I've learned that weight gain and a drop in metabolism can be symptoms of estrogen dominance. That explains some of the problem if not all of the problem. I learned about estrogen dominance when I was researching my breast cancer, after getting the pathology report that indicated that my tumour was very high in estrogen and low in progesterone. In other words, I had an estrogen-fed tumour and had too much estrogen in my system, which is why I will now take estrogen blockers for the next 5 or more years. Read this short article about estrogen dominance and weight and how balancing your estrogen can not only help you manage your weight, it might also save your life (from breast cancer ); something I wish I had known a few years ago. If I had, I might not have developed breast cancer at all. I should also say that estrogen dominance isn't typically recognized by mainstream medicine and is more in the realm of the naturopathic doctors. I haven't met any mainstream doctors that give a hoot about balancing hormones, except for cutting my estrogen AFTER breast cancer, but from the personal experience of being a woman, I know hormones figure into almost everything. I do believe it's a fine balance. I believe that recognizing and treating estrogen dominance in the first place can prevent some breast cancers.

Since there's no turning back the clock to "prevention", here I am in treatment and doing what I have to do to live. Maybe someone out there will see themselves in my symptoms prior to breast cancer and perhaps prevent themselves from getting breast cancer. That would make me very happy.

Back to weighty things ... I was dismayed to learn that the drug I'm to take for the next 5 years (tamoxifen) can cause weight gain in much the same way that birth control pills can. It felt like just another kick in the boob. But so far that hasn't been the case for me. Not yet anyway. In fact, I've been slowly and steadily losing weight, which is making me SO happy! I can hardly believe it! I've lost at least 5 pounds in the past two or three weeks. And I'm not even trying! That's the surprising part! Previously I would have gained weight drinking water and eating celery! This is too good to be true! I haven't been cutting out breads ... or mayo ... or cheese ... or butter on my potatoes ... or chips and dip on special occasions (such as Olympic hockey games) ... What's going on?! How can this be?

I have no explanation. Maybe if I understood more about estrogen and my other hormones but from what I'm reading, even though estrogen dominance can cause weight gain, so can decreasing estrogen (as happens during menopause, which is where cancer treatments have put me). I find all the hormone information just too difficult to understand. It seems very complex.

Here's a possible theory for my new ability to lost weight. Vitamin D. Was I previously unable to lose weight because I was Vitamin D deficient? Read this article that links increased Vitamin D levels to weight loss. Could it be that just upping my Vitamin D is allowing my body to shed some weight? At last? Remember (I find this hard to keep in mind) ... Vitamin D3 is not actually a vitamin. It's a hormone. Then why do they call it "Vitamin D" instead of "Hormone D"? I don't get it! Well now I do, because I looked it up and found it here. It seems that it was in the early 70's that scientists discovered that Vitamin D is a hormone and not a vitamin:

"One of the reasons vitamin D was a puzzle to scientists for so many years was that it was initially misidentified as a true vitamin, that is an essential substance that our bodies cannot manufacture and which therefore, can only be obtained from our food. But, unlike essential dietary trace elements, such as vitamins A, B, and C, which humans must get directly from food, vitamin D can be produced in the body through a photosynthetic reaction when the skin is exposed to sunlight. The resulting substance is only a precursor, however, which must then undergo two transformations--first in the liver and then in the kidney--to become the biologically active substance the body uses. This active form of vitamin D is a hormone, chemically akin to familiar steroid hormones, such as the sex regulators testosterone and estrogen and the stress regulator cortisol."

Whatever the reason for my recent miracle weight loss, I don't understand it and I'm afraid to get too excited! It's too bizarre! I just hope it continues for a while longer! I would so love to feel like my smaller self again! If I figure it out, I'll let you know. If you have any ideas, please share.

Just think ... if I start adding more exercise to the mix, at this rate I would be slimmish again before next fall! That would be too much to hope for. I know it.

The Not Quite Incredible Shrinking Woman

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

Tamoxifen - Day 1

This morning I start my Tamoxifen. It's the drug I'm to take for the next 5 years ... replacing the more effective (for my circumstances) Arimidex that I started but was unable to tolerate. Do your best, Tamoxifen! As for your worst ... please have mercy! I do fully expect the return of hot flashes, though. I hope they're no worse than previously, which were merely annoying and slightly disruptive. I know some people have worse experiences. I know they're a lot easier to manage if you're in the comfort and privacy of your own home and if you can whip off your hair whenever one strikes.

I'm happy to say that my skin tags were dropping like flies yesterday! I only have one of 6 left. I wonder where they go? I think I'll sweep, vacuum, and wash our sheets today. There are just little red spots where the 5 missing skin tags were and all but one of those are completely flat and look like they'll heal with nary a mark to show where they'd been. That's good.

Joints ... the same stiffness I've come to expect, though I wake up every day hoping to be more limber. It's too early to say for sure how they'll be for the day.

Last night I thought I felt a slight cold starting. This morning, it's hard to tell. I hope it's nothing. I've been so lucky in that department all considered. I haven't had a cold or a flu for over a year now. When you consider how vulnerable my health has been off an on during the year, it's amazing really!

Yesterday I was so tired. We went to Don and Syl's for a lovely dinner and then, after we were home, I tried to stay awake for the Grammy's but couldn't do it. Pink's performance was freakin' amazing! I wanted to see Elton John and Lady GaGa perform but I can probably catch it on YouTube. Of course, I could have PVR'd it but that didn't occur to me at the time. DUH!!

I had a nice, long, thought-provoking chat with Hannah last night. She always has interesting thoughts and ideas to share. Her brain must be stretched to capacity inside her skull for all the interesting stuff going on in it. She's so inspired by theoretical thinking ... and memory ... and knowledge ... and history ... and visual arts ... and writing ... and the art of printed formats ... and ... well ... lots of things ... and yet she's firmly pragmatic. It's a wonder she sleeps. She's doing just fine and is so looking forward to her trip to New York on the 12th.

We talked to Luke briefly, too. His team, the Bellarmine Knights, had their first exhibition game on Sunday. It didn't go as good for them as they had hoped. He said the team didn't play very good in general and his hip pointer injury made it hard for him to pivot. Pivoting is important in lacrosse, especially for an attacker, which is his position. He needs to do some healing yet. He would have gotten home at 4 or 5 this morning. A long, late bus ride.

Tamoxifen - Day 1

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