1/27/11

The Fog Of War

I've been having a lot more trouble with fatigue lately.  It's an issue that is very common for cancer patients, regardless of what sort of treatments one may or may not be having at the given moment.  The hard thing about it is that cancer-related fatigue is different from the sort of 'getting tired' that healthy people have.  Because it is different, it is nearly impossible for a person who has not had cancer to understand what this fatigue does to us.

First of all, it often hits us out of the blue.  One minute everything is running per normal, the next minute, without warning, we are (sometimes literally) collapsed on the floor, mumbling into the carpet. 

Second of all, although the fatigue can make us sleep for hours on end, we often wake up and still find ourselves exhausted.  Sleep is not always restorative when it comes to cancer-related fatigue.  You just have to deal with feeling like you've been run over by a truck.  Sometimes you deal with it by dragging yourself along your routine by sheer force of will, and sometimes you deal with it by sitting and staring mindlessly at the television until the fog clears.  Sometimes you deal with it by turning around and going back to bed.

Worst of all - at least for me - is that it often renders me unable to think clearly or function adequately.  This is often the hardest thing for people to understand.  I know there are things I have to do, but it's like I'm working with a huge sheet of cotton batting between me and everything else.  I forget the thing I was thinking about a minute ago, I forget appointments, I forget what I have gotten up to do.  I read the same paragraph over and over, and end up with no clue what it was about.  I watch a television show, and realize halfway through that I can't remember a thing about the last ten minutes... the experience has been completely erased from my consciousness, as though it had never happened.  People talk and I try my hardest to listen - but they sound like the teacher in the Charlie Brown specials: "wah, wah, wohhhh..."

Cancer presents me with a much more complicated schedule and set of organizational demands... and then takes away my capacity to deal with these things effectively.  This is really hard, particularly when organization has always been a weak suit and when so much of my coping strategies and interests are predicated on intellectual pursuits.  I live nearly entirely in my head - and now my head is full of oatmeal. 

A typical example: I was talking on the phone with a potential customer the other day, and she was asking why I wasn't going to the Weaver's Guild spin nights, or to Knitter's Guild meetings.  I tried to explain why I haven't been spinning much lately, and why it was impossible for me to commit to going somewhere for social purposes two weeks in advance.  I tried to explain that with Stage IV cancer, my energy levels are extremely uneven, and that there are days when I barely can make it from bed to the couch, much less get my coat on, lug my wheel (that 13 pounds is starting to feel painfully heavy lately) out to  the car, and then spend several hours trying to concentrate on both spinning and conversation.

She clearly didn't get it.  She quite possibly thought I was lying in order to avoid meeting her.  She probably won't believe me when I tell her that I literally kept forgetting to call her back in the last couple days, either. 

Intentions of Gold, Brain of Oatmeal...

So I don't expect most folks to completely understand this, and I certainly can't expect them to remember it at all times.  But it might be helpful, if you are the friend or family member of a person with cancer, to read this article on cancer-related fatigue from the National Cancer Institute.  It might save you some frustration with your loved one, and save them from feeling embarrassed or hurt or similarly frustrated with themselves and with you.  If nothing else, it might save everyone the tiring effort of having to go through the explanation of their inability to function per normal again.

...And Sometimes It Doesn't

If you have read the comments on my blog, you know that on occasion I've heard from a very kind and warm blogger named Daria.  If you've looked at my 'Followers' list, or my Blog List, you will find her there, as well.  You will find my comments on Daria's blog, as well.

Unfortunately, as of this past weekend, you will not find Daria herself on this earth.  On January 22nd, Daria was stolen from her friends and family by Breast Cancer.

We will miss her.

1/14/11

Really?

According to the evidence, I haven't written anything here since December.

I don't believe the evidence.  It can't have been that long, could it?

On investigation, it turns out that what little I have written in the last two weeks has been posted on the other blog.  So I guess you'll have to go there, if you want to check up on the phlegm-filled fun that has been my life lately...

More recently:

I wanted to have a PET/CT scan done, because my feeling is that things have progressed, and not in a good direction.  I've been having nasty pains in my spine and ribs, I've been more tired recently, and the lump in my chest that I use as a sort of cancer yardstick has been growing lately. 

I ended up having to pass on the scan scheduled for last week, however, since I couldn't lay down for more than a minute or two without trying to forcibly eject my lungs.  That wouldn't have been conducive to a nice, clear picture of my innards.  So I saw Dr. Bouncy on Monday, but we didn't have too much to say or do that was useful, since we didn't have a scan to go over**.  He just okayed me for the bone meds IV, and off I went to get perforated (please remind me not to let them fob the cute little youngsters off on me - they are sweet, but they never can get into my veins properly, and I do not want a repeat of that chemical burn experience, thanks.  As it is, I now have beautiful abstract versions of 'Starry Night' decorating the middle section of both my arms).

So I have another appointment to see Dr. Bouncy again next month, and I will have a scan just prior; my job before then is to get rid of this stupid cough and respiratory grot.


For now, I think much of the viral part of this grue is over with, but the bacterial infection that took advantage of the dip in my immune function has hung on doggedly.  So I've finally given in and started up on the antibiotics, even though this means that I have a very high likelihood of developing the flu as a result.  Don't ask me why I get the flu 9 out of 10 times I take antibiotics.  I just do.

Per my request, however, my GP prescribed the same antibiotics I took for my ear infection last spring, as the fallout from that was relatively mild.  We'll keep our fingers crossed - and take lots of probiotics.

**Cancer gives people a very weird perspective on things.  Dr. Bouncy actually thought he was being encouraging and optimistic when he told me, "Well, the pain might not be the tumor growing.  Sometimes the tumor shrinks and leaves an empty space, so then the pressure crunches the vertebra down and causes stress fractures."  So instead of being filled with tumors, my spine might just be crumbling, instead?  Good news!!!