Things Are Different...

Hmm... Blogger is looking very different, and now is not a good time for things to get all different on me. Why do things get more complicated right when the brain is getting beyond figuring out new things?

Frankly, the brain is getting beyond figuring out old things.

Here is what has been happening:

The smallest of the brain tumors turned out to be further down and back in my brain than they thought, and so they were not able to treat it with the Gamma Knife treatment along with the other two tumors.  At the time, they spoke of trying other treatments in May... either a different targeted treatment or whole brain radiation.  Or of course the choice of letting the tumor grow untreated - a quick and unpleasant death to follow.  The plan was to do another brain scan mid-May, which might give us a better idea of what options would be available.

In the meantime, we found out that the steroids that keep brain swelling down also interfere with the effectiveness of the chemo treatment that I am taking.  A PET/CT scan last week showed a mixed pattern of tumor growth and regression.  I also have been suffering from a great deal of pain in the foot and hip, some of which is due to side effects from the chemo, and some of which is due to lymphedema in the hip and leg and foot (which is worsened by the steroids).  Unfortunately because of the huge tumor in my hip, it turns out that I have very few options in treating the lymphedema, which is interfering with both comfort and mobility. So we decided to minimize the steroid as much as possible, and to skip doses of chemo on occasion in order to give my foot and hip a bit of recovery time, while still hopefully getting some slowing of tumor growth from a lower dose of the chemo.

Unfortunately, this past Saturday I woke up with severe dizziness, nausea, vertigo, vomiting - and when I tried to get to the bathroom, I fell and found that I could not walk.

Subsequently, I have been off the chemo for a week and on three days of intensive steroid treatment.  Things have improved somewhat, but I am now using a walker and still suffering from dizziness and nausea, and the combination of chemo and steroid I am now on probably pretty much cancel each other out in terms of effectiveness.  We are definitely in Experimentation Territory at this point.  Dr. Bouncy and I are neither of us happy with the situation, but there are no clear roadmaps as to what would be the best tactics to use, so we are just guessing and compromising and hoping for the best.

In the meantime, we are still not sure what caused the sudden problems described above.  It could be a reaction of brain tissue to the Gamma Knife treatment.  It could be quick growth of the untreated tumor.  It could be a combination of the two.  Or perhaps something else.

The neurologic radiation specialist has (in consultation with another radiologist) decided that our best bet is to treat the smallest tumor via Gamma Knife on the 9th of May.  They will do a scan just before the treatment, which should tell us if part of the trouble is tissue swelling and/or bleeding from the prior treatment, but they feel that the most important thing right now is to try to keep that little tumor from growing any more than is necessary, and that Gamma Knife is our best bet for doing that.

So that is the story at the moment.  Frankly, I feel that so much of this is basically a matter of flying blind and guesswork.  There are so many unknowns, and so many decisions to be made on a dearth of information.

At the same time, we are trying to make a lot of decisions about my living situation and treatments in the near future, also largely to be made on a dearth of information - my quality of life, side effects, treatment effectiveness, insurance and financial situations, all seem to change rapidly and without warning.  None of these decisions are made easier by my brain function and emotional situation being messed up by the various meds and tumors and who knows what else...

So.  I apologize for the lack of focus and clarity in this post.  I hope that things will get a little better with a lowering of steroid dosage, although I cannot make any promises on that front.  I will try to update you as things go along, assuming that I am able to understand anything that is going on, myself!

Awareness Worth Having

My friend Donna is posting some really great information about breast cancer in honor of Breast Cancer Awareness Month.  All the marketing of Pink glitz and glam, all the Pink pies and ribbons and shirts and motorcycles and cars, all the ballyhoo... it can distract us from some of the more important facts that we really need to get across about breast cancer.  It can lead us to underestimate the seriousness about the disease - it can lead us to even believe that breast cancer is curable.

Unfortunately, breast cancer is not curable.  Not even the most 'mild' case is curable.  The best we have achieved, with all our research and our advances in treatment, is remission.  Remission means that the cancer in your body is not currently detectable by our current technology... but it does not mean the cancer is gone.  Breast cancer tends to recur, and more often than not when it recurs, it does so in its deadly form.
And there is nothing pinkly pretty about metastatic breast cancer.

So let's get ourselves truly educated about breast cancer.  Let's be aware about its realities.

Donna's posts are a good place to start.  Here are links to her most recent Awareness Points:

Breast Cancer Subtypes

10 Truths About Breast Cancer

Breast Cancer Remission

Estrogen As a Risk Factor


* My thanks to Donna, whose blog is a constant source of inspiration and information, and whose person is a blessing, indeed!

That's What I Said...

There's an excellent article on the Huffington Post website, written by Mark Hyman, MD, regarding the reliability of medical studies and the resulting supposedly 'Evidence Based Medicine'. It not only warns against trusting media reportage of health and science, but also tells you why you should do your own homework when it comes to trusting recommendations regarding prescriptions and treatments, and how you can better assess whether a particular treatment is one you want.

This information applies to everyone, whether they have cancer, diabetes, heart disease, a sinus infection, or are considering whether or not they want to take the highly marketed Seasonal Flu/H1N1 combination vaccine. So please go read it, and mark it in your Bookmarks folder for future reference.

While you are at it, read the article mentioned (and linked) therein, written by Marcia Angell, former editor-in-chief of the New England Journal of Medicine. It's a somewhat more technical explanation of the issue, and very enlightening.

Q&A: La Vida Loca?

The delightful Delighted Hands asks this question:

My family discuss this and we have very differing views; if facing a serious and probably terminal illness, what would we do-savor 'normal' life or explore a frenzy of activity before it's too late?

That is an excellent question! (And thank you very much for asking - it's hard for me to think of things to write about at the best of times, and at this frenzied moment creativity is at a low point.)

The answer is a little tricky; I can't give a definitive answer from a perfectly objective point of view, because I don't think there is a consensus among a board of experts from which to draw a conclusion. So I can only speak from my own experience and my own heart.

Let's start with a tricky aspect of the question in the first place: what I - and probably other people who have not directly cared for a loved one with terminal illness - did not know is that to a large degree, getting the diagnosis of a serious/terminal illness tends to carry with it a certain degree of lack of control over how we spend our time.

We don't get told, "You've got a year or so, go home and do what you need to do to make peace with your life."

Nope. When we are diagnosed with a serious illness, we suddenly find our calendars filled up with doctor appointments, treatment dates, medication schedules, nutrition requirements, all sorts of lifestyle changes. And if you are like me, you spend a lot of time in research. All of which take up a lot of time, energy, time, finances, time, patience, more energy... and time.

On top of this, we end up dealing with not only the energy drain and pain levels inherent in the progression of the disease itself, but we also have to deal with the energy drain and pain levels that the treatments for the various conditions cause. So we tend to move slower and sleep more (even though our sleep is rarely what you'd call refreshing), which limits our free time even more.

So not only are the number of days in which we are going to be breathing on this earth limited, but the number of hours we are able to spend as we would like are limited, as well. And our ability to do the things we'd like to do is often limited by our physical issues - sometimes severely limited.

But let's set all those considerations aside for a moment, and assume that somewhere in all those scheduling issues and treatment issues and physical limitations, you are able to make some time for yourself, to do what you want to do (within your physical limitations). How are you going to spend it?

Well, first of all, understand that for many of us, the demands of Real Life do not stop when we get sick. Just because our spouse and our kids know that we might not be there next year, they do not stop eating or working or going to school, they still have to see doctors and pay bills and do their homework, and of course the pets and the house do not suddenly start taking care of themselves.

And yes, everyone knows that eventually those things will have to be taken care of by someone else, when you are no longer there to do them. But habit is habit, and hardship is hardship, and nobody wants to start living without you before you are even gone. That eventuality is scary, and everyone wants to put it off as long as possible - so you all tend to hang on to the habits that you have developed over your lifetimes together. It's convenient, and it's comforting in the face of the dark unknown.

And really, you want to hang on to 'normal life'. Partly as a denial mechanism, partly as a way of retaining your lifestyle (and life, if you need to work in order to pay those doctor bills and do those silly eating-and-shelter things) - and partly as a way of retaining your independence and feeling of being part of the world for as long as possible. Who of us wants to be useless and a burden to our loved ones, a lump that everyone else has to step over or move around in order to get on with their own lives? Not to mention that sitting around doing nothing is incredibly boring.

Add to that the fact that sometimes the everyday stuff is pretty darned sweet, but that sweetness only happens with the everyday investments that come with it. Your kid rarely sits down with you and says, "Look, mom, we have some free Quality Time now, so let's have a heart-to-heart about what's going on in my life." Instead, she usually confides in you whilst wolfing down the eggs and toast you just made for yourself, after wheedling you into ironing her favorite awful t-shirt.

So you want to savor the everyday things. It's important, especially if you have a family.

On the other hand, many of us have put off the things we always wanted to do until we were more financially stable, or until we had more time, or until the kids were grown, or until work got less harried, or until we retired... and somehow, between all the everyday demands and the occasional crises and the economy, that Us Time never quite happened. So when our doctors suddenly inform us that it's unlikely that we're going to get to that imagined future, we realize that if we don't do it now, we are just never going to do it at all.

Do we take that little window between the time we learn of our impending doom and the time that we become bedridden to run around trying to do all the things we thought we'd get around to Some Day?

Well, it depends. Just because you are sick, you don't suddenly gain more time, fewer demands on your time and energy, or more money (see above)... so it may just not be possible to run around putting check marks on your Bucket List.

But if you can manage it, it can be very satisfying to go on that trip you always wanted to go on, to build that classic car you always wanted, to go up in an air balloon at sunrise, to see a Broadway Musical or go to Disneyland. If you can do these things in the company of someone who you love, it can be comforting - if bittersweet - to know that you are building a happy memory to sustain them when you are gone.

If you don't have kids, and if you have the resources, you can do both the everyday and the special Big Experience stuff at the same time. You can do laundry and argue with your spouse about proper handling of whites vs. colors and what constitutes a 'delicate' while traveling on exotic shores. Sounds like fun!

If you have the resources, but you are limited by the needs of kids or of an employer, then you can trade off between the comforts of 'normal life' and the satisfaction of experiencing some of those longed-for adventures and accomplishments.

I think that either would be the ideal, that combination of both the sweet mundane joys of everyday life and the ability to experience more of the outside world. I think if there is any possible way of arranging for both, it's worth the sacrifices that might be involved. I'm incredibly grateful to my mom and dad for making sacrifices in order to help me to do a bit of that while it was still possible. I suppose it would be stupid to say that I will never forget it, under the circumstances, but I do hope that they understand how much it has meant to me, and that it will bring them some comfort to be able to remember that in the future.

But if your resources are scant, as ours generally are, there is still a lot of satisfaction available in noting the beauty in a flying wedge of migrating geese, the lacy tracings of leafless branches against a steely winter sky, the sleepy twittering of finches at sunrise, the tender curve of a grandchild's cheek, the clean lines of a newly finished quilt or a nearly perfect golf shot. There is still joy to be celebrated in the graduation of a child from one stage of life to another, another family gathering peacefully managed, a career milestone accomplished, a new skill gained. There is still sweetness in the small moments with friends, family, and children that can be caught between all the everyday demands and crises of 'normal life'... and between the not-so-everyday demands and crises of a dwindling life.

So what do we do when faced with a terminal illness? We make do with what we've got. Life is rarely ideal, and certainly the end of life is even less so. Knowing at a visceral level how very limited our own time is really going to be sharpens our vision to some degree. It forces us to prioritize. It forces us to pay attention whenever we can, and to appreciate the small things as well as the grand. If we are lucky, we can experience both in our last days or years.