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.

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!!!

Aaaaaaaaaaaaaahhhhh... choo.

I am sick.

Okay, that sounds a bit odd, I suppose, since you know that I am really, seriously, terminally ill.

But the fact is that I sort of compartmentalize the cancer stuff as much as possible, when it comes to dealing with the ucky symptoms - I don't think of it as being sick per se, I think of it as a process involving unpleasant but inevitable challenges that crop up so that I can find ways of living around them.

That's different from being sick.

I used to get sick at the drop of a hat, at least once a month.  But since the cancer diagnosis, I've been stuffing myself full of vitamins and herbs (Vitamin D3, people... get tested and make sure it's in the upper end of the 'normal range'), and taking a medication that regulates (in my case, up-regulates) the immune system**.  If you ignore the bone pain and the stuff that glows in my scans, I've been remarkably healthy for the last couple years.

Since I can't ignore the bone pain, I really resent anything that makes things worse.  I figure I should be immune to the everyday sort of viral and bacterial nonsense.  Don't look at me, I gave at the office.

So now, for the first time in the two years since my diagnosis, I have a real live Bug.  Coughing, raspy voice, throat that feels like it's being stabbed by knives, red raw nose, the whole ten yards.  

Darn it!!  

To make matters worse, the immune system medication and narcotics cancel each other out - so I can't take cough/cold/flu medications, because the stupid cough suppressants are pretty much all some form of narcotic or other.  So I just have to live with the symptoms until it feels like going away on its own.

Darn it, darn it!!!!

So much for ringing in the New Year.  I'm coughing it in.

Christmas is definitely over.  Bah.  Humbug.

**I'm taking other medications, too, but those don't affect the immune system, or the cold medications available to normal people.

Foggy

If you've had a conversation with me lately, I apologize.

For some reason, I seem to be working in a sort of mental fog.  Whether it's due to lack of sleep, or the distraction of pain, or something more sinister, I'm not certain, but the result is the same: I don't seem to be able to keep my social focus for very long.  From time to time during a conversation I find myself answering as vaguely as possible - or worse, pretty much at random, my direction based on a fuzzy impression gained from the last word or two of my companion's most recent utterance.  This renders me the conversational equivalent of a 4-year-old engaged in 'parallel play'.

Innocent Bystander: So after the bypass, they put in a pacemaker.  But they weren't able to regulate it properly, so he was getting shocks every few minutes, regardless of what his heart was doing.  He ended up in the hospital five times last month, we're not sure how much damage might have been done.  It's just been a nightmare.

Me: I never remember my dreams, but maybe that's a good thing.  If I have nightmares, I'm not aware of it.

I.B.:  ....

This seems worst when I'm talking on the phone, perhaps because of the lack of visual cues.  I'm not always aware that I've wandered vaguely off track, but I do realize that my phone conversations have slowed down lately, probably due to the other person having to labor to figure out what to do with my apparent non sequiturs.  I don't think I've become a complete moron in the last month or so, but if you have had that impression lately, please reserve judgement for a while and be patient with me.  Gently lead the conversation back to where you want it to be - I'll catch on eventually.

Either that, or I won't.  In which case, feel free to say things that you can't say to anyone else.  I can't repeat or be shocked by what I don't hear.  Just finish off with something innocuous like, "And then I had some chocolate," and you can count on me to be your most understanding, tolerant friend ever.

A Christmas Carol

The last week has been a difficult one for my family.

My health is not doing as well as we'd like.

My son had his tonsils removed on Friday, and he's feeling a bit blue about having to be restricted in his holiday feasting.

Most importantly, my dad's sister, for whom I am named, died this week.  Worse, she died on my dad's birthday. 

We have had several beloved family members die during the holiday season in the last couple decades, and I was diagnosed with my cancer during the holidays - which makes this a bittersweet time for all of us.

And yet the Yuletide is my favorite holiday celebration, and our family has a huge number of traditions that we have built up around it.  It has always been, and remains, a busy and bustling time full of social and practical obligations and activities.

In the last couple years we have had to cut back and simplify, given the exigencies of the economic times and the waning physical capacities of both my mom and myself.  We let each beloved old tradition go reluctantly, regretfully, knowing that next year we will no doubt be forced to give up more. 

The empty chairs at the hearth are growing more numerous, and the Ghost of Christmas Yet To Come sits with us at the table.  It is impossible to ignore. 

And yet, it is also impossible to ignore the joy of having friends and family to share our meals and our homes.  At night the moon and the lights shine stained-glass color on the pristine snow, and during the day birds flock to the feeders and bounce along the frosted branches of the trees.  The cider and nogs still warm us, and the songs of the season still exalt.  The fire on the hearth and the gaily wrapped gifts under the tree are no brighter than the love that glows in our hearts.

We are human, frail and imperfect and impermanent.

We are blessed, every one.

Prescription Drugs: Think About It

Drugs have been a subject of conversation in our family lately.  Not only because of my health crisis, but also because of the health situations of several people that are near and dear to us.

Now, my family is particularly prone to having bad reactions to drugs, so this concern is not a new one for us.  But it carries more weight in the past year or so.  I am experiencing serious side effects from drugs prescribed for my health condition.  My sister-in-law recently had two separate life-threatening complications from the anesthesia medications given to her during a recent surgery.   And unfortunately, one of our family members is currently dying, and there is legitimate reason to believe that this may in some part be due to side effects from the drugs given her by her doctors. 

Drugs can be life saving, and they can improve your quality of life - but they can also damage or kill, and all too often we do not give enough thought to the potential consequences of taking the drugs prescribed by our well-meaning doctors.

According to Mercola.com :

"...prescription drugs are responsible for an estimated 700,000 ER visits a year due to adverse drug reactions. And adverse drug reactions from drugs that are properly prescribed and properly administered cause about 106,000 deaths per year, making prescription drugs the fourth-leading cause of death in the U.S.  The truth is prescription drugs kill more than twice as many Americans as HIV/AIDS or suicide. Fewer die from accidents or diabetes than adverse drug reactions."

There are things you can do, however, to lower the risk for you and your loved ones.

~ First of all, keep a readily available list of the supplements and drugs that you are taking, and update it regularly.  Take this list to your doctor's office and pharmacist whenever you go there.  Memory is not reliable, especially in the stressful environment of a doctor's office.. 

 ~Don't make the mistake of not taking supplements as seriously as prescription drugs.  Anything that is strong enough to affect your body positively is also strong enough to potentially affect it negatively.  Supplements can interfere with or interact with drugs in a significant way, so you should keep your doctor and pharmacist apprised of any changes in your supplement regimen - even multivitamins should be on that list. 

~ And don't forget over-the-counter drugs, even the ones that you only take on occasion, like allergy or pain medications.  Like supplements, they can interact with other drugs in significant ways. 

 ~ Go over your list of supplements and drugs with your pharmacist on a regular basis, especially whenever your drug regimen changes significantly.  Doctors do not have the training and resources that your pharmacist has on the ways that all the different drugs interact with one another.

~ If you are having a side effect from a drug, don't be afraid to talk to both your doctor and your pharmacist about it.  There may be alternatives that will work better for you, or things that you can do to minimize those effects.  And perhaps more importantly, your doctor and pharmacist will know if a particular side effect is likely to be a sign of something serious going on. 

~ If you find that you have gradually accumulated a large number of medications, be sure to talk to your pharmacist and/or doctor about whether you might wean yourself off of some of them.  Certain conditions (particularly chronic diseases and mental illness) can tend to cause a 'snowball effect', with new drugs being added as old ones become less effective.  Unfortunately the elderly are more prone to chronic conditions, and are also more prone to over-accumulation of drugs in their systems, and thus can easily become over-medicated. 

~ Read the printout that your pharmacist gives you with your prescriptions, and read the labels and information sheets that come with your drugs.  Also look up the side effects for any medications you or your loved ones are prescribed - there are a number of good websites that can help you with this.  Be aware of the signs of serious complications that can be caused by the drugs you are taking.

~ You can sometimes get good information on side effects from consumer-based websites and websites/lists designed to provide information for people who are dealing with specific conditions.  These websites can also sometimes provide you with information about treatment options of which your doctor may not be aware.

~ Remember that you are not only a patient, you are a consumer.  You have the right to ask questions, and you can refuse treatment that you don't think is effective or safe for you (or your child, or your aging parent).

Virtuous

 My good friend Roberta wrote this post about an issue that needs to be raised.

A recent article about Elizabeth Edwards' life and death mentioned the fact that the Westboro Baptist Church was planning to picket her funeral.  It took me a bit to wrap my head around that - how can someone picket a funeral?  Exactly what could they be objecting to?  And who would they be trying to reach with such behavior?

It's beyond my comprehension, that anyone could spend so much time and effort on being cruel to people who are already suffering.
 
Well, it turns out that the Westboro Baptist Church is a group of folks completely without bias when it comes to Hate.  They abuse everyone equally, which is awfully egalitarian of them.  But they are particularly fond of picketing funerals.

Evidently there is more satisfaction in kicking people who are already down.

Of course, there is one area in which the Westboro Baptist Church members are less than evenhanded - and this is why Elizabeth Edwards and the members of the military who have given up their lives for their country have been lucky enough to draw the WBC's short straw.  The Westboro Baptist Church particularly loves to lavish their attention on funerals of people who are likely to draw media attendance.  Evidently any attention is good attention, and the Westboro Baptist Church is willing to brave God's wrath on the whoring issue when it comes to parading their naked souls in front of the media.

Well, it's all a matter of taste and very basic good manners.  And of course it's a moral issue.  But it's also a matter of rudimentary logic and theology.

Frankly, even if we are to assume that folks with cancer are suffering a prolonged, agonizing death and then suffering eternal hellfire in payment for some sin or other - committed either by the individual or by society in general - what business is it of these members of the Westboro Baptist Church to stand in judgment?  Whatever happened to that whole 'cast the first stone' passage of the New Testament that these so-called Christians are so fond of?  It seems to me that Jesus was pretty specific about letting God be the judge on these issues.

Of course, they might not be so sure about how that judgment might fall on their own heads when that time comes.  It's one thing to have the courage of one's convictions.  But these paragons of virtue don't even have the guts to cast that stone while the person in question is alive and able to respond.

How is anyone to judge that?

One More Lost...

It's not that I know much about her, or that I approve of all her choices, or that our lives have been similar in many ways... but it was sad to learn that Elizabeth Edwards died on Tuesday, so soon after learning that her cancer had metastasized to her liver.

I feel for any woman who is struggling to deal with this dreadful disease, which turns our own cells into the instruments of our destruction.  It is not a gentle or kind illness.  Breast cancer robs us of comfort, of functionality, of dignity, often of our very selves, before it takes our lives.

It was just over three years ago that Ms. Edwards learned she had Stage IV breast cancer - ER positive, the most common and deadly sort of breast cancer.  The cancer that I share.

The average lifespan post-diagnosis for Stage IV breast cancer is 2-3 years, so in this - if nothing else - Elizabeth Edwards was fairly average.  My cancer was diagnosed two years ago; at that time it was more advanced than Ms. Edwards' was when she was diagnosed.  She chose to go through chemo treatment, and so far I have not.  I do not know what her diagnosis was as far as aggressiveness, but mine is the most aggressive possible.  It has eaten through much of my pelvis, and at the least is now also busily working away at my spine and ribs.

She understood that this was not a battle that could be won, and so do I.

My son will hopefully graduate from college in the spring of 2012.  My dearest hope is to see him do so.  I wish to be, as Elizabeth Edwards was, just a bit above average.

My sympathies go out to Ms. Edwards' children, family, and friends.  My hope, although it is not an optimistic one, is that Senator Edwards and his fellow legislators use this loss as impetus to do something about the current shameful state of affairs pertaining to  research on prevention and treatment of this terrible and all-too-common disease.  

Scanning technologies are a good thing - although they, too, could be vastly improved so that they don't raise our chances of getting cancer as they search for existing tumors - but we won't ever find a cure until we stop spending most of our money on studies of already-approved drugs that we know don't really work.  We need to institute a wide-scale program that brings doctors together internationally, that encourages them to share information in an organized way, and that funds the study of promising new treatment options.

I can't think of a better way to honor Elizabeth Edwards than to pass legislation that would do this.

Playing Catch-Up

I should have something clever to say, or something interesting to report, but I don't.  The holiday season is upon us, and I am very busy gearing up to my usual Holiday Fever pitch.  This requires me to studiously ignore what is going on in my body.

For what it's worth, I suspect that the Tamoxifen/Ibandronate combo is doing decently for my bones, but is letting the soft tissue stuff get bad.  The Aromatase Inhibitors do decently for my soft tissue stuff, but they let the bones get bad.  So I can let the bones go, which wrecks my quality of life and functionality, or I can let the soft tissue go, which eventually will kill me off.

What's behind Curtain C, Bob?  (Oh, right.  I don't like Curtain C, either...)

Beyond that, there's dealing with the new roommates, rearranging the bedroom furniture, holiday shopping and decorating, figuring out what to do for the annual Christmas Eve Performance, going to concerts/shows (many of them featuring the kid), writing out and sending the holiday cards, cooking, knitting holiday gifts (panic!  panic!), holiday decorating, getting the kid's school stuff figured out, plus helping visitors and socializing with them (the last bit is fun, but it's all time-consuming).

Heck, really we need to rearrange the living room/dining room/kitchen furniture, too, and reorganize the entire house.  My fiber pursuits are taking over the entire central part of the house (like The Blob, but fuzzier - the Flob), and the spouse has taken to using the porch as a massive Junk Drawer.  Probably as a response to territorial encroachments by the Flob.  It's been months since we've seen the dining room table...

That all seems overwhelming and impossible to manage.  So we'll start small.  Maybe tomorrow we'll manage to put up those cute, tacky little lantern-on-a-candy-cane stakes I snagged on Black Friday.  Theoretically all it takes is for us to stake them into the ground.  But since the ground is frozen and we can't drive them into the ground from the top, because the solar power panels are affixed on the tops, I suspect the project will involve at least an hour of husbandly struggle, complaints, and muttered swearing.

Joyeux Noel, y'all!!