What is chemotherapy?

I know a while back I did a cancer glossary, a brief, somewhat humorous breakdown of all the words I use every day that most people would find foreign.  Chemotherapy was something I described as:

Chemotherapy – ‘Chemo’, medication given to a person to treat cancer.  Can be taken orally or through an IV, port, or tunneled line.  Kills cancer and just about any other quick-growing part of your body.  Removes both unsightly and sightly body hair.  Guaranteed to go from Chuck Norris to Lex Luther in one treatment.

Not exactly Webster’s quality, but still a rather cut and dry description.  But for me, there’s more to it.  A whole lot more.

Chemotherapy starts with the night before the infusion, drinking lots of water to make sure that my body’s ready for the onslaught of medication.  The pre-medication that needs to be taken to combat the side effects the next day will bring and the trip to the local hospital to get my blood drawn for labs.  It’s an early to bed so I can be up early the next day, kiss my kids goodbye as I place them in the hands of my mother in law for the day, and then drive with my mother the hour trip to the clinic.  Meeting with the doctor briefly before he gives me the OK to be treated.  Then, after all the fuss, I’m escorted to my chair where I’ll be spending the next six hours or so watching nurses hustle and bustle back and forth to their wealth of patients.  After a lengthy time dozing in and out of consciousness and barely registering guests that have dropped in, I’m allowed to go home, napping through a car ride and then spending the evening shuffling about and crashing early due to exhaustion.

That’s far from the end of it, however.  The next day I wake up feeling fresh and renewed, perhaps a little off, but otherwise great.  I’ve got the energy to drive down and get my neulasta shot and drive home. Possibly even make dinner and pick up the kids from school depending on the time of the appointment.  I’m active, alert, and feeling generally just fine until right around nine.  I should be getting tired.  I should be crawling into bed for a nice night’s sleep.  But I can’t.  I’m buzzed and awake but physically exhausted.  What’s worse is that my brain isn’t particularly active at this point, it’s remarkably silent.  Yet I cannot fall asleep.  I stare at the computer, I read a book, I pace, I clean, and finally I throw up the white flag and crawl into bed where I’ll lay awake for another hour before my body finally gives in and lets me rest.

Until the next day…when I wake up at nine wondering why my children are at my bedroom door staring at me in hopes that I’ll stir and get breakfast on the table.  But even then I only open my eyes and stare at the ceiling and attempt to will my body into cooperation.  It’s stiff, sore, and decidedly heavy with exhaustion.  Typically on this morning I can’t physically manage to get breakfast on the table until nine-thirty, when I’ll be serving lunch only an hour and a half later at eleven.    I’ve got a little energy, but the pain starts to kick in, the joints start to ache and get stiff, and even ibuprofen and copious amounts of water don’t seem to do anything but take away the edge.  The next few days it’s a downward slope where I huddle on the couch or in my computer chair, only moving to eat or use the bathroom or to help my children do much the same.  If I can avoid it, which I rarely can, I don’t take my kids to school, instead relying on my husband to do so.  Most of the times he works, however, and I find myself huddled against the steering while and trekking around town to make sure their education doesn’t suffer.

This downward slope is aches in all my joints.  Random bouts of nausea coupled with a sudden sensitivity to certain smells and tastes.  Constantly wanting to eat but not being hungry and chewing on gum to get a flavor that you just can’t explain out of your mouth.  Stopping conversations mid-sentence because I can’t recall what I was talking about and then fumbling for words I know exist but I simply cannot recall.  Staring at my computer screen for hours wondering what I was going to do.  Was I going to write something?  Was I going to simply check my email? Play a game?  I can’t recall.  Sometimes I end up waking up with keyboard imprints on my forehead from an unexpected nap while staring at the constant cycle of family pictures on my wallpaper.  Yet, in spite of all the tiredness that leaves me heavily leaning on door frames, at night I still can’t get to sleep until eleven or midnight and I can’t pull myself out of bed before eight or nine.

Then, after a few days, things swing upward.  I get my energy back and my digestive system seems to right itself.  I can eat regular food again and I won’t be near-vomiting when my toddler soils her diaper.  I can do housework again-but not too much.  I have a bad tendency at these times to jump on all the cleaning that’s not been done while I was on my down-swing and end up a shaky tired mess.  So I take it easy…and then my hair begins to fall out.  It’s a stiff and sore feeling along the scalp that signals it, the death of my hair follicles.   It’s painful to have somebody rub their hand against the grain.  I wake up with small hairs that have fallen on my pillow, get stuck in the collar of my shirt, and somehow manage to find the most sensitive places on my skin and make me itch like I have chicken pox all over again.

As the hair falls out I get new surprises, a wave of hot flashes that start with a pin-pricking feeling along the back of my neck that’s followed by a wave of heat that flushes over my back, my head, my chest and my arms.  Night sweats, cold chills, hot flashes, and a general drained feeling that follows each one.  Signs of my body considering giving up on the whole fertility thing, leaving me wondering if my obstetrician’s worries of possible ovarian failure could be true.

After all of this I’m suddenly faced with random and uncontrollable body shakes, leaving it difficult to grab things because my hands won’t stop moving and causing my feet to turn in now and then when I’m trying to walk.  Making tasks so simple seem so difficult.  It’s days like this where I’m at the store getting a small batch of groceries and luck would have it I get the cart with a sticky wheel.  It takes all my effort to turn it and with each item I put in it gets more difficult to maneuver.  Halfway through the trip my hands and arms are shaking and I’m tripping over my own feet.  I take a moment to rest and my body, as if to spite me, sends me into a hot flash that leaves me gasping for cooler air.  Somehow I make it to the car, unload the groceries, and realize Murphy is a sick and cruel man when I note that the only places to return shopping carts are three lanes away, crossing busy lanes of traffic.  I feel so very, very tired.

Yet I still manage to drive home, back into the garage and close the door.  As I sit there in the dark everything hits me as I can’t even seem to coordinate well enough to grab my car keys and all I can do is rest my forehead on the steering wheel and cry.  For no reason and every reason, and the realization that this godforsaken disease will never leave me alone.  Even after the tests are clear and the scans are clean, cancer will never, ever leave me.  I take a moment, catch my breath, unload the groceries, and carry on.

And in another week I’ll do it all over again.  Why?  Because the alternative is something I cannot, and will not ever accept.

 

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Wait, what was I writing again?

So for the last few days I’ve been sitting here with a half muddled mind, curled up in a blanket as I cope with hot flashes and cold sweats.  Bouts of insomnia and then tanks of exhaustion.  Waves of nausea subdued by sudden feelings of bloated fullness.  In this I’ve been tangling with a couple of topics that I really want to tackle on my blog that I think a lot of chemo patients deal with.  However, I cannot seem to decide which one I want to tackle more, as they’re both a bit close to heart (and mind).  One of them is chemotherapy and fertility, something I feel a bit on the lucky side with because of having the chance and gap in chemo and cancers to have my children, even though it’s likely I will never be able to have more.  The other is my memory.  Weird, huh?  While it seems that one is a bit more important than the other, I confess that this time around my memory lapses are a bit more severe and are bugging me a lot more than they used to.

So which one do I hit up first?  In this time of indecision I do what any geek would do (or at least what this geek would do).  I pull out my dice.  My two d10s in particular–that’s ten-sided dice for those of you who don’t avidly collect dice for various tabletop roleplay games the way I do.  It’s ok, I forgive you if you don’t.  Two d10s are rolled on a 1-100 range, with two zeroes being an effective 100.  I use these for rolemaster, considered archaic by the avid D&D crowd, though it was how I learned to roleplay…so it shall forever be my favorite.

Above 50 goes for memory, below goes for fertility.  I can honestly say I never thought I’d be rolling on something like this…

93.

Well then, memory it is.

That is, of course, assuming I can remember what I was going to write about it.

See, I seem to be doing a lot of that lately.  Forgetting, that is.  It’s not entirely uncommon to have what cancer patients call ‘chemo brain’, a fluffy and unsettling feeling of “I know I’m forgetting something” that seems to loom during the duration of chemo.  It sometimes even lingers for years afterwards.  In my own situation some of my memories of sixteen and twenty-one are so fuzzy and so hard to recall for me that I have to double-check with those that were there if I’m telling things correctly.  It’s become such a regularity with my life that I’ve just come to accept it as part of me…because I just don’t recall being any different.  Funny how that works.

Most of the time it’s a minor detail, something so small that it doesn’t affect the overall picture for me.  Lately, however, it’s become a bit more.  I received so many gifts this year in forms of meals, get well cards, hats, gloves, and more to show support for my struggle with chemo.  Normally my reaction would be to at least thank the people verbally.  Write a card, draw a picture, do something to show my gratitude.  I’m downright horrible with thank-you cards, just ask anybody who went to my wedding, but I usually at least make an effort to let the person know that I’m appreciative.  This time … it seems I’m a bit behind.  No less than ten times have I been asked by different people if I even received gifts sent for Christmas or for something else.  Did you get my card?  Did you get the hat?  It seems I’ve had an influx over the last few weeks of it, too, by no fault of anybody but myself.  I had thought I’d at least said thank you, or sent something to say I’d gotten the gift…but by the overwhelming amount of people asking me…it appears I haven’t.

It’s not just in this arena that I’m feeling forgetful.  Loads of laundry go unlaundered, the floor is in dire need of vacuuming, and I think I really need to get in there to scrub the bathroom again.  Thankfully, through all of it, I’m remembering to get up, clean myself, clean my kids, and dress and feed them.  The rest of it…I’m pretty severely lacking.  I can only hope my son’s kindergarten teacher can forgive me for not looking to see if there’s homework in his backpack again.  Or that my day camp core and planning staff will forgive me if I forget that I already sent out that mass email about the next meeting or when to register.  Or that my poor husband will know I’m not nagging and simply forgetting that I already asked him to vacuum because my joints ache too much to get out of the chair.

Nobody is giving me flack about it, but there’s something that everybody takes personal when you forget about something you were going to do with them.  It’s not lack of understanding, no it’s not even a lack of compassion.  It’s quite simply that nobody likes to be forgotten, even if it’s forgetting that you went out of the way to write a hand-written letter.  The look in the eyes, the pause in the typing…is it weird that I can even tell somebody’s even slightly hurt by the way they type?   I can tell you this, though, while it’s not a bit personal…it does feel a bit worse knowing you’re the one that forgot.  Knowing that I had the energy the other day to do that thing, and I could have very well gotten it done…but I just didn’t remember it.  It’s not a feeling I relish in.  In fact, I hate forgetting, but I can’t not forget…so what do you do when faced with that?

Multiple conversations are also something that I’m beginning to have problems with.  Normally I can operate listening to one conversation, talking to my kids, and reading something mindless at the same time and still manage to walk away with at least some minimal comprehension of what’s gone on.  Now…multiple chat bubbles pop up and I can’t keep one conversation straight.  My kids run over in a tantrum about who stole whose Legos and I’m trying to watch the news while the phone is ringing and…instead of sort of it out?  I become useless.  I snap, turn the phone off, shoo the kids away, and then curl up into a ball wondering what on earth I was doing in the first place.  It went so far yesterday that I drove to Taco Bell and on the way home forgot what on earth I had ordered.  I had to dig things out at a red light just to see if I’d gotten enough for the whole family to eat.  Then, for some reason, I decided that there were Blizzards in order, drove to get them, and almost fell asleep in the Dairy Queen line while waiting for them.  Luckily I remembered to keep my foot firmly on the brake pedal.

Lately it seems I pick up a news article, get halfway through it, and then forget what it was initially about…and the whole article stops making sense.  I don’t recall things getting this bad the last time I went through chemotherapy, but I don’t recall many finer details as it is.  It scares me a little, at times, but my memory, thankfully, picks up a little with each upswing of chemotherapy.  So I’m under hopes that most of this is temporary.  I can’t quite afford to be so fuzzy, unless it’s the hair on the top of my head that intermittently tries to grow back, so I have to focus on the now.  And occasionally something shiny.  Did I mention I like shiny things?  And bacon.

Everything’s better with bacon.

And yet I can remember why my mother and I are holding bagels in front of Buckingham Palace in 1998. Funny how that works.

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Chemo 101, Part 3

Every cancer patient (and many more patients of other sorts, rest assured) are all too familiar with prescription drugs.  Not just the stuff we get intravenously, but also the stuff we have to take by mouth.  Pills in particular.  These pills run in all sorts of sizes and arrangements, from tiny to horse-sized, from basic to sugar-coated, chewable to grab a cup of water you’ll need it to swig this sucker down.  There is one pill, I’ve discovered, that is the universal wonder-pill that just about everybody has had to take at one time or another.  This pill is called prednisone.  

There is a good reason why doctors seem to use this as a fall back.  I alone have used it to coincide with my chemotherapy at age sixteen, and it has been a blessing when pre-medicating myself for CT scans so I don’t go into anaphylactic shock due to the contrast dye.  But this little miracle pill does much, much more.  Prednisone is a corticosteroid, and is used in a wide array of treatments from arthritis to asthma, from lupus (yes, lupus) to allergies.  It’s not always in pill form for all of these, but the pill form is what I’m here to talk about.  To sum it up, Prednisone is a miracle pill.

It’s also a bit of a bad pill, too.  See, prednisone is one of those medications that has equal benefits to its horrible side effects.  In my personal experience it’s caused some rather crazy mood swings (giving a speech about your summer vacation to a class and then randomly breaking down crying when you announce…”England was so fun..but now I have cancer!” is one of many examples I can think of), all sorts of fun water-retention that leads to some rather awkward weight gain.  It also gave me a horrible craving for eggs.  But the list goes much, much beyond that.  Depending on your dosage it can also cause glaucoma and increased blood pressure.  It gets even better if you take it over a long period of time, like a few people I know do.  Cataracts, high blood sugar that can lead to diabetes, increased risk of infections, osteoporosis, and thinning skin leading to easier bruising.  Those, my friend, are the common side-effects.

But let me tell you, when you discuss prednisone with somebody else who’s experienced this wonder drug as well, none of these are the first thing that comes to a prednisone-victim’s mind.  Not the benefits, not the harmful effects.  No, the first thing they think of is the taste. 

That’s right, the taste.  Prednisone by far is the worst tasting pill there is and in no situation have I ever seen it sugar-coated.  It is likely one of the medications that I would not object to having a nice sugar-coating to spare my tongue.  It’s almost like walking into a room where somebody’s been sanding and burning plastic and walking around with your tongue out to taste the fine particles, which leave an acrid burnt taste in your mouth that no less that five pieces of the strongest mint gum will get rid of.  Many suggest, who have never had it, to wash it down as quickly as possible and to not let it sit on your tongue.  Yes, because I let it settle and let it melt on my tongue, clearly I am not swallowing it fast enough.  I love the offer of advice, but really, would I be complaining if I didn’t swallow it as fast as humanly possible?

As I sat in the chemo chair yesterday talking with my mother prednisone came up.  I don’t recall the entire conversation, but the minute I said that magic word, ‘prednisone’, I watched the lady in the chair next to me cringe and stick her tongue out as if she could taste it simply by mentioning it.  For me, and for her I later discovered, we were only subjected to the tiny pills.  Did I mention that for some people, like a lot of liver transplant patients, these pills come in a glorious horse-pill or enema size, too.  Count your blessings if you only have to take it once or twice in a nice tiny size, because these patients take those horse pills daily.

 

It should really come as no surprise that when you do a Google image search for ‘taking prednisone’ this image popped up for me. Remember that weight gain? It can be a real PITA.

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Just another part of me

For somebody who’s facing a third round of chemo in three days, I’m feeling remarkably underwhelmed.  I’d like to think it’s not so much a sense of apathy that’s settling in towards my treatments, but rather a strange mindset of determination that I simply don’t express.  There’s a considerable difference between now and when I was a sixteen-year-old on how I approach just about everything in life, but in particular the way I handle my health has changed the most.  When a doctor hands me a diagnosis I’m no longer uncertain or terrified, which may be a bad thing, I’ve yet to figure it out.  Instead I nod, take a moment to collect myself, and simply say, “Well, what do we do about it?”

Chemotherapy was a certain brand of torture when I was sixteen that robbed me of my hair and thus any chance at dating I was sure I would no longer have.  It made me feel somewhat ill, tired, cranky, and on one day it even locked my joints up to the point where all I could do was roll out of bed due to an inability to walk.  Even with the minor side-effects, I dreaded each coming chemo with a certain amount of fear that would have me up the night before for several hours, unable to put my restless mind at ease just to get a decent night’s sleep.  Strangely enough, that chemo was nothing compared to the chemotherapy I faced at twenty-one, and even again at twenty-seven. Yet, mentally, at sixteen it hit me the hardest.

In contrast, at thirty, when my diagnosis came around to be lung cancer, I was surprisingly unphased.  Yes, I had moments where I curled into my husband and cried like a child, but overall it was hard to think of this as anything other than just a bump in the road.  Cancer? Again? Ok, now what? Surgery.  Ok, after surgery, then what?  Chemo? No chemo?  Four rounds, well…seems to be my usual.  Guess I’ll be bald for a bit.

You know that cancer is a bit too much part of your normal life when the mention of “Well, chemo is on Wednesday” to your husband has the both of you exchanging looks that can be easily read as, “Ok, so, Wednesday, Thursday and Friday you’ll be close to useless. Got it!”  We’re both so used to my cycles of ups and downs, my bursts of random energy and the massive crashes I have out of nowhere that it just doesn’t surprise us anymore.  Food gets stocked, the house gets cleaned the weekend before hand, and the kids walk all over me for a few days as I drag myself out of bed just to make sure they’re fed, their teeth are cleaned, and that they make it to and from school on time.  I’m surprised, thus far, that my son hasn’t missed any homework assignments due to my brain’s random leaves of absence.

I don’t feel dread for Wednesday, my port is in place, the kids will be taken care of by my lovely mother-in-law, and my mother will be playing chauffeur for a day making sure I won’t be that random person crossing the lanes of traffic sporadically due to post-infusion exhaustion.  I don’t sleep-drive very well anyway.  Not to mention the law tends to frown on that.  Technicalities, I’m sure.

The thing is, even after my last chemotherapy is done and I’m looking at an every-six-month doctor visit, yearly scans, twice yearly blood draws, it still won’t really feel like the cancer is gone.  I’ll always have to check, come back every year, just to make sure another tumor hasn’t popped up in another random spot.  The odd part is that it seems to have simply become a part of me.  Half of my life has been spent dueling with cancer, and it’s left one too many scars for me to live on without it…even if it never returns.  I can’t say I’m necessarily OK with this, but I have to admit it’d be strange to suddenly have everything be normal.  After all, normal is something I’ve just never done well.  Even before cancer.  So why change it now?

To be fair, while my cancer(s) may not be genetic, my lack of normalcy most definitely is. That’s right, Dad, I’m looking at you.

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Sometimes I wonder…

I truly do wonder, at times, if my blog is reaching the right audience.  Well, I guess…this is sorta…accurate…

Well, it’s…close. Right?

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