Fleshing things out

Last week I posted about the new drug, Navelbine, that Marye has been taking since the new year.  As I mentioned, it is treating her much better than the Gemcitabine or Xeloda that she was taking the last few months of last year.  While it's true that she hasn't suffered the debilitating nausea that she had before, it's still not a panacea.  After all, it's chemotherapy.  This week, Marye's blood counts were too low for her to take treatment.  Her white blood cells were 1.6, and the neutrophils were 0.8.  Far too low.  Moreover, her red blood cells and hemoglobin were also depleted.  This accounts for her really excessive fatigue lately.  That has been an issue for months, but it's gotten more pronounced since she's been on the navelbine.  Another concern is the aching back that she's been experiencing recently.  As you recall, she does have metastasis to her spine.  This is not a life-threatening condition, but it can be painful.  I'm worried that her backaches might be related.  But this brings us to a reality of chemo.  Because it's very mild (nausea inducing-wise), the navelbine can be given weekly.  This is very good to fight cancer, but it takes a toll on the rest of the body.  Since her body doesn't have a chance to bounce back, each treatment just beats her blood counts down a little more.  By skipping treatment this week (out of necessity), her body should get a break and recover on its own.  As we do like the idea of frequent chemo (to fight the cancer), we're hoping she can get back on schedule and take treatment next week.

This also brings me to some other issues that I've been contemplating lately.  Nearly every day, someone asks me how Marye is doing.  This comes from across the spectrum of people who barely know me and only that my wife has cancer, to those close friends and family members who are intimately familiar with every aspect of her disease and treatment.  This is a good thing.  Most people are genuinely concerned with how she is doing and care very much about her.  Those who only know me are interested in her well-being and how it is affecting me.  Many people have very little experience with a serious illness and the realities of caring for someone in her condition.  Again, this is ok.  Even I am constantly learning something.  Just when I think I've got a handle on how to deal with this, something new comes up and forces me to readjust.  As Donald Rumsfeld said, you have to recognize that we don't know what we don't know.

My point is this: when someone asks me how Marye is doing, my brain instantly starts evaluating how I'm going to answer.  It's not that I am reluctant or trying to withhold information.  But I have to figure out a coherent answer taking into account several factors, including what this person knows already, and, very importantly, how much they really want to know.  Sometimes, people are not really prepared for the realities of cancer.  I try to take that into account when figuring out how much I want to gloss over the details while still imparting an accurate picture of how she is doing.  If you are reading this blog, you are most likely aware of how difficult it is to watch someone whom you care about go through a protracted illness, either through reading this, or your own life experiences.  But for many people, this is something that they haven't even considered in the course of their lives.  Cancer is something that Marye lives with every minute of every day.  And although I am not in her shoes, I live with it, too.  I can put it aside for brief periods when I'm doing something else.  But it's a major part of my life, every single day.  So, I try to respond to questions about her by putting it into a context that I believe and hope will make sense.

Finally, I'd like to talk about what is actually the very first thing that comes into my head when someones asks "how's Marye doing?"  Before I even try to phrase the answer into a very personalized response depending on who is asking, I need to figure out, simply, how she is doing.  Again, if you're reading this, you probably have a good sense of the complexity of treatment.  There is a balance to be struck between the side-effects and efficacy of chemotherapy.  So, it's really a multi-part question.  1) How is she feeling (based on side-effects of treatment, complications of cancer, emotionally, etc.), and 2) how is the cancer doing (the efficacy of the treatment)?  These factors often have no relation to each other.  For instance, she might be enjoying a period of very few (or manageable) side-effects, as with the Taxol.  But if the chemo is ineffective, it's not accurate to say that she's doing well.  Likewise, if the the chemo is really kicking her butt, but it's shrinking the tumors, it's hard to say things are looking good.  Also, she can feel really lousy for days on end, then have a brief reprieve from the nausea.  If you ask me how she's doing, I could answer that she's feeling lousy, but right now, she's feeling pretty good.  There is also an emotional aspect to this, and that adds another layer of complexity to the seemingly simple question, "how is Marye doing?"

I hope that makes sense.  As the name of this blog is "Marye Update", I try to give an accurate sense of how she is doing.  Hopefully, you can understand the factors that go into trying to answer that question.  Having said all that, please don't stop asking about her.  It is both uplifting and humbling to know that there are so many people who care enough to read this blog and ask about her.  But, when you do ask, just understand that it's not always an easy question to answer, and you might get more than you expected.

So, with all that in mind, here's how she is doing: she has been feeling pretty weak, most likely due to the weekly chemotherapy treatments.  Hopefully, the break this week will give her a chance to recover a bit.  Also, she has been somewhat achy, and I'm concerned that that may be from the tumors on her spine.  As for efficacy, she is scheduled for a CT and bone scan in February, so we won't know anything about that until then.  The fact that she's taken 4 treatments in a row gives us hope that the cancer is shrinking.  And although she is not suffering the severe side-effects of the gemcitabine, she never really feels great.  That said, she does have good days and is often able to get some chores done and do her knitting.  I'll post again next week to update on her blood counts and chemo.  Thanks for reading.

-Chris

New Year, New Drug, New Outlook

Well, it's been nearly a month since I last posted an update, so you might be thinking that it's been relatively quiet.  That's sort of true.  We've had a fair amount of activity, but, for the first time in a long while, it has been quite peaceful.  When I last posted, Marye was still suffering the awful side-effects of the Gemcitabine. We were told that this is a very mild chemo and that most patients tolerate it well.  Of course, Marye fell into the small percentage of people who got sick from the drug.  She suffered terrible nausea with actual vomiting, and a lot of felling lousy, generally.  After the New Year, we were very hesitant to continue on the same course, and Dr. Riley agreed.  So, on to the next weapon in the chemo arsenal -- Navelbine.  A plant alkoid, like Taxol, and others, Navelbine is also advertised as being very mild.  So mild, in fact, that it is generally given weekly.  This is more frequent than Marye has ever received treatment.  Her previous treatments have all been bi- or tri-weekly.

She got her first dose of the Navelbine on Jan. 3rd.  Interestingly, it is also a very quick infusion.  The entire dose is given via gravity drip from a small bag and takes 6-15 minutes.  So, although we have to go to the clinic every week, we're there for only a few hours, as opposed to all day with the Taxol and Gemcitabine.  The routine is like this: she first gets her port accessed and her blood drawn for lab work.  While we're waiting for the bloodwork to come back, Marye gets comfortable in the chemo lounge and starts knitting.  It takes about 45 minutes to get the lab reports back and they get sent to the doctor upstairs to verify that everything is ok and she clears Marye for treatment.  When that happens, they plug in the chemo bag, it drips for 6-15 minutes, and we're done.  Time to de-access the port, and it's off to McCallister's Deli for a Reuben sandwich.  What the onc is looking for on the the blood work is liver function, and -- especially with this drug-- blood counts.  (More on this later.)  Another factoid regarding the Navelbine: it's a vesicant, meaning it causes extensive tissue damage and blistering if it escapes from the vein.  So they handle it very carefully.  I don't know why it causes damage to tissue (skin), but not to the interior of the vein and heart.  But they take it pretty seriously.  Of course, the IV is engineered to eliminate the possibility of contact.  They insert the infusion plug into the bag and it drips into her port.

Anyway, the great news is, the Navelbine is treating Marye very, very well.  Compared to all of the other chemo drugs (with the possible exception of Taxol, which was also very tolerable), this one has very mild side effects.  After three treatments, I can recognize a pattern where she may or may not have some nausea on the day of treatment, then she usually bounces back nicely through the rest of the week.  She has had the occasional bad day of nausea.  But it's nowhere near as frequent as she was experiencing before.  It's like the heavy fog of chemo has been lifted after the last few months and her days are much better.  That's the good news.  And aside from the aforementioned occasional bad day, that's the second best type of news that you can hope for with Stage IV metastatic breast cancer.  The only downside to this drug so far, (more on this later) is that being weekly, it is affecting her blood counts.  What that means is that her white and red blood cells, hemoglobin, and platelets are dropping every week.  This can affect her immune system and energy levels.  So, I am extra careful about not bringing home any bugs (we both had our flu shots earlier this year), and her energy level is down.  I haven't talked about this to the onc, yet, but this has happened before and there are several possible remedies, including a blood transfusion to boost her counts.  She could also take a week off of treatment to give her body a chance to boost itself.  This is another benefit of weekly treatments: she is in the clinic every week.  If we have questions for the doctor, we're right there, and they're keeping a close eye on her condition.

Ok, that's a lot to absorb.  I said I'd address a few things, but I'll save those for another day.  To summarize: Marye's new chemo is treating her well.  She still has the occasional bad day (1-2 per week), but overall, she's feeling much better than she has for the past few months.  She is scheduled for a CT and bone scan in March, so we'll know then how effective the chemo is.  Until then, I'm expecting things to stay quiet.  Blissfully quiet.

-Chris