The Good, The Bad, And The Ugly

So. Dr. Bouncy called today - not a good sign. When the news was good, his nurse called.

The good news, such as it is, is that the tumors in my chest and etc. have not advanced - at least, not significantly. Some have even regressed further.

The bad news is that the tumors in my hips have advanced a lot in the last three months. They are not responding to the hormonal treatment, and are destroying bone at a very fast pace. To the point where Dr. Bouncy says my femurs and/or hips are likely to break if we don't stop the tumors very, very quickly.

Tomorrow he and the radiation oncologist will be giving us their opinion, and on Friday I'll be seeing an oncological orthopedic specialist, and we'll go from there.

It's pretty depressing that so much damage can have happened so quickly, and that the bone tumors are not responding the way the other ones are... almost like having to treat two different cancers, really. Although I suppose it's likely that the other ones will get resistant to the hormone treatment soon, too...

Good thing I got that vacation right when I did. I wouldn't have been able to do Hearst Castle even a week or two later.

I have a feeling that I am not going to be the least bit happy with any of my options, and that my doctors are not going to be the least bit happy with me. More struggles, more arguments, more rotten lose/lose decisions.



Cancer is a nasty parody of an illness. As it eats away at our bodies, the cancer eats our ability to be ourselves - to act and live and think as we did before it invaded our inner territory. And our bodies won't even fight it, because our internal forces can't see the cancer cells as being Other.

To have terminal cancer is to be the ultimate victim of identity theft.

"We have met the Enemy, and He is Us."*

So we are forced to watch as our internal doppelgänger gradually steals one bit of our life after another, knowing we are unlikely to ever get it back again. Goodbye, goodbye...

My dear friend Roberta, who is dearer to me each day that I get to know her better, is struggling with this particular issue. She expresses it very well in her blog, which I hope you will visit as soon as you are done here (she also has a fascinating blog about sea glass, which you should also check out). I wish I had a satisfactory answer for her complaint. Unfortunately, I can only echo her sentiments, in empathy and solidarity.

Being me, I will probably echo them less gracefully, and most certainly I will echo them less succinctly. I am still that much myself, I guess!

Having rosacea and being way past what anyone could charitably call 'on the sturdy side', I am hardly the gaunt and pallid picture that people have in their heads when they think of someone in our position. They can't see the cancer, and they can't see what it has done, what it has stolen. So few people are inspired to give me their seat or to lift heavy things from the shelves for me or to slow their pace to accommodate my Hips-of-Swiss-Cheese.

It's a struggle to keep up, sometimes. Sometimes I just can't manage it, and I fall behind.

And that's just one of the many things that suck about this situation. Not only do other people expect me to be the Me I Was, I all too often expect myself to be the Me I Was. I get frustrated and tend to beat myself up when I'm not able to do the things I want to do. The things I could do just a few short years or months or weeks ago.

Little by little this damned monster steals it all, and it's not inclined to give anything back.

It's not that we're not grateful for the time we've gotten. It's that we resent the time we won't get. And we resent being forced to watch as it's taken away from us.

We resent being forced to watch as we are taken away from us.


*Walt Kelly, from his comic, 'Pogo', among other things

*This is not intended as whining in the traditional sense; I am not looking for attention, sympathy, or advice. Although I understand the urge to give advice - I am as prone as the next person to give unasked-for advice (more so, probably). But my intention at the beginning of this thing was to give as honest a reflection of my life with cancer as possible, and this is part of that journey.


I'll Soon Be Glowing. Again.

Well, there's just no way of getting around it; the hip pain and the Amazing Bouncing Tumor is going to make me anxious until I know whether or not it's something I should be changing treatments for. And the only way to find that out is to get scanned.

I don't want to do it. I mean, I really, really don't want to do it. I think it's a bad thing to irradiate myself so much. Which I think seems strange to Dr. Bouncy, when I'm so relatively doggedly realistic and fatalistic in other ways.

I talked to my counselor about it, and it turns out that part of my hesitation to do another scan is that in some ways holding on to the idea that I don't want to do something that is likely to encourage the cancer down the road several years , that is my one act of optimism about the future. I feel that by giving in to the fear and irradiating myself again, I am admitting that I suspect that things are going to keep sliding downhill fast, that it won't matter very much if I keep irradiating myself. It's basically saying that I probably won't live long enough to suffer the consequences.

So I don't want to do it. But the fact is that the anxiety is getting to me, and it's not going to stop keeping me up at night until I know what is really going on. Hope is warring with my need to know what is going on, my need to take action, my need for control (however illusory that sense of control might be). Optimism not being my strong suit, hope is not winning this particular battle.

So. Scan on Monday, results probably at the end of the week.

Wish me luck. My optimism may be wimpy, but I gratefully accept donations.


Low Dose Naltrexone. Yes, Again.

You've read on earlier posts about the benefit in energy, mood and pain levels I've gotten from LDN. Here is a video that explains, in part, how LDN works in terms of cell growth through its influence on production of several types of endorphins in your body, and also on the opioid receptors in your cells:

And here is one study of how OGF (which you learn a little bit about in the above video) affects growth of some cancers - in this study's case, pancreatic.

I will have more to say in the future about how studies get done, and how treatments get approved (or do not) by the FDA - but in the meantime, I'm trying to get the word out there about LDN. It's not perfect, and it won't help everyone... but it does help some people who haven't been helped by other treatments, so I want to make sure the information is out there. Because people deserve to decide for themselves - especially when their condition is serious and incurable by 'standard of care' methods - and they can't make a reasonable choice if they don't know that the options are there.


Reporting In


First of all, for my dear Violet Hoarder and anyone else interested in matters sartorial and/or artistic: you can find my report on my shoe shopping expedition here, including the all-important Photographic Evidence. Enjoy!

Okay. Now to the other stuff.

I did see Dr. Bouncy. I can't say he was particularly happy with me, but such is life - especially mine. Did I mention that I am Difficult?

Anyway, the upshot is this:

1. My liver enzymes have gone only very slightly up, not enough to be statistically significant. Which I suppose is good news of a sort, since they've been rising a bit more rapidly in previous visits. We'll take good news where we can get it.

2. We won't know whether the current symptoms are caused by the medication or the cancer, unless we do a scan. Which I'd rather avoid. But I may have little choice, if current symptoms continue. So we are sticking with the Arimidex for the rest of this cycle, then will decide whether I will switch back to the Aromasin or not. I have a scan scheduled for August, which I can cancel or move up if I feel it's warranted, and another appt. with Dr. Bouncy at that point to see what I want to do next.

If I have a scan and it turns out that I'm progressing again (in cancer, Progress is bad; it means the cancer is growing and/or spreading), I'll have a few options: I can try going back to the Aromasin, I can switch to Tamoxifen (unlikely to work, but possible), or I can move on to Faslodex, which in treatment terms is sort of like the other hormonals, but a bit stronger - it not only blocks the estrogen receptors, it sort of kills them off. Which means that it might work for a while, but is likely to more quickly make the cells completely immune to hormonal treatments.

If I switch to the Tamoxifen, and even if that works, eventually that will fail and I'll end up on the Faslodex. Which might work for a little bit, if I'm lucky, but eventually that will fail. Then the options will be the various types of kill-cells-generally chemo*, until the point at which I decide to stop treatment. Everything will stop working, sooner or later. Mostly sooner - the usual curve is that each treatment works for a shorter time than the last. And my particular cancer is a relatively rare grade 4, which means it is very, very aggressive. So it's not particularly surprising, I guess, that my positive response has been relatively short.

Sometimes you chance across something that for some reason works particularly well for you as an individual, and that occurance is what you and your doctor hope for. If you stumble over that particularly effective treatment early on, when there are fewer cancer cells to kill, you could even luck out and put yourself into remission for a significant period of time (even permanently, if you are very lucky - not common for those of us with metastatic breast cancer, but there is a lucky 3% or so, and you never know).

Unfortunately they don't yet type individual tumors** so that you can target your unique cancer with the treatments that would specifically be most effective for you, although the technology is there for at least some of the known markers. For instance, they know two particular markers that are very indicative for good reaction to Faslodex, but most centers/clinics don't have access to the tests necessary to check this out. It's easier for them to just give you the drug and let you suffer the side effects and possible progression while waiting to see if you are among the 30-40% of hormonally positive patients for whom the drug works at all (slowed or stalled progression for an average of 3-5 months).***

This is, IMO, criminal****, but although doing that testing would benefit the patient, it would also hugely cut down on the profit Big Pharma makes on the current scattershot process, so this typing somehow has not made it into standard practice and is thus not available to most of us.

So. Anyway. Kind of sucks that the hormonals are possibly losing effectiveness this soon. Dr. Bouncy mentioned that for people who react well to hormonals, the chemo tends to be less effective, and vise versa. But I find that less than comforting - I suspect I am a person whose cancer reacted relatively well to hormonals, which means that chemo is likely to be less effective. Less effective than 5 months is not particularly heartening, especially when the cost in side effects/quality of life and dollars is so much greater.

Plus evidence tends to lead to the conclusion that I am not going to be one of those people who get through chemo with relatively few nasty side effects. I get the unusual and nasty side effects to just about everything, including the hormonals, so why should chemo be any different?

I don't particularly care about the hair - I lost a good amount of it 15 years ago through alopecia, so I've already dealt with that, and it's been a long time since I had any reason to be vain about any part of my body. I expect I'd have a day or two of trauma, less as an aesthetic matter per se, and more of a reaction to the fact that it marks you publicly as a person who is sick and probably dying, and I prefer being invisible. And then I'd get over it. But the whole brain fog thing is scary for me - I suppose what I am vain about is my mind, and more importantly, I've always depended on being reasonably bright to get me along in a world where my (lack of) social skills and survival instincts cause me significant problems. And nausea - well, I'd rather be in a lot of pain, frankly. Not that I like pain, and the thought of even more skin problems is not the least bit appealing. And raising my level of already systemic fungal problems is a big issue - not only does it raise the level of difficult side effects possible, but it also makes me more likely to actually die from the chemo, rather than the cancer. I don't know which type of death is worse, but they aren't either of them a walk in the park, and the cancer might give me a little more functional/quality time, which I would prefer.

So there is a line beyond which I will not go on the chemo end of things. I'm not sure where that is, but I suspect it will be a lot sooner than Dr. Bouncy and my mom will be happy with. Faslodex, I'm sure I will take. Beyond that, I'm not sure. I'll have to keep weighing things out as I go along, which is not going to be the least bit fun. And then after I decide to stop, things will get even more not fun.

But we did get that five months, at least. And Mom, we got that time together. That was a great gift. Totally worth the stupid side effects.

*And yes, I find the whole chemo vs. hormonal thing confusing, too. Some doctors will call the hormonals 'chemo', because they are a chemical interference that is specifically aimed at cancer. Technically, this means that hormonals fall under the official definition of 'chemotherapy'. Others do not consider it chemo, because it doesn't (theoretically) mess with your immune system or cause your hair to fall out (at least not all of it) or kill off cells per se. The hormonals simply starve your hormonally-driven cells of estrogen, which means that they aren't given super-fuel that spurs them on to grow as rapidly... if they die faster than they reproduce, that shrinks your tumors or even kills them off. Which is great (well, not really, since the side effects kind of suck. They just don't suck as much as some of the other chemo treatments do), but eventually the cancer figures this trick out; the cells drop the useless hormone receptors and find other ways to fuel themselves.

**The two things they do type for is hormone sensitivity and HER-2 status, which are both very general markers - useful to some extent, but it's rather like grouping dogs into being either Big or Small and either Long Tailed or Short Tailed. There are a lot of variations within those groups, and the useful applications are seriously limited where application is most needed.

***This is important, because cancer grows exponentially. At first it grows slowly, because 2 cancer cells only double to 4 cancer cells. So if you can kill a few cells off every day at that point, it's pretty effective. But by the time you have multiple tumors, that means you have thousands and then millions of cells doubling rapidly, and redoubling, and redoubling... killing a few cells off every day doesn't make a significant dent. So if you can get to the most effective treatments early on, this would give you a much better chance of putting a serious dent in the disease, even curing it. The reason metastatic breast cancer is considered incurable (for now) is because by the time the cancer has spread that much, you have too many cells reproducing for the current treatments to wipe them all out - and as long as the cells are there, they are mutating and figuring out how to work around the treatments.

****What, does this sound like a Bad Attitude? A little Bitter, perhaps even cynical? Gee, how unlike Me.
~koff, koff~


Weekend Blues

Yesterday night I realized that I couldn't remember whether I'd taken my LDN or not. It's a bad idea to take more than my regular dose, so I decided not to risk it. This morning I discovered that I probably had not taken it at all. I've been waking up reasonably rested at 5:30 this past couple weeks, but today I woke up groggy and still exhausted at 9:30, feeling a bit beaten up and not at all ready to face the day.

I took my LDN very consciously tonight. Good plan.

Monday is the day I go in to see Dr. Bouncy. I had blood labs drawn last Monday, so I'll get the results of that, talk to him about the symptoms I've been having lately, and see whether he thinks I need to change back to the original aromatase inhibitor, stick with the one I'm on and see him again in a month, or perhaps even do another scan (not an option I like at all).

The rotten thing about the hip pain is that it could be progression, it could be arthritis, it could be a temporary flareup from the new AI, or it could even be a side-effect indicating that it and/or the LDN is working - you can get pain from the regression of the tumor from the bone, leaving a sort of empty hole. The bit of liver pain could be from progression, or it could be from whatever problem the AI is causing that makes my liver enzymes go up. The tumors in my chest wall... well, I have NO idea what is going on there. It's weird, but that doesn't necessarily translate into something identifiable.

Anyway. Hopefully Dr. Bouncy can help me sort this stuff out, but in the meantime I just feel apprehensive. It doesn't help that my blood tests from my other doctor show that my cholesterol is up (also a side effect of the AI), that my blood sugar is slightly up (not surprising, as I've been eating wheat again lately), and of course I'm gaining weight again (I'd finally stabilized, I think, with the old AI, but started gaining again as soon as I started the new one). All of which makes me suspect that the test results are unlikely to be positive.

Cancer is such a bugger. You can't just sit and watch it eat away at you - you have to deal with all your other systems wigging out, too. What the cancer doesn't get, the treatment for the cancer is happy to muck up.

Anyway. I'll report back on Monday or so. In the meantime, I've got the weekend of fear and loathing to get through.

So I'm doing what any rational, right-thinking person would do.

I'm going shoe shopping.