Insomnia

For the last year and a half, I've been battling insomnia.  My doctor tells me to relax.  Everyone else says to just stop worrying.  Yeah.  Just stop.  Why didn't I think of that?  Since the last PET scan, I've been doing better.  With the help of some medication, I have started sleeping again.  Each week was getting a little easier, and I wasn't feeling so morbid and waiting for Wayne to die. 

Until this week.  This morning, Wayne is at the cancer center to get his first six-month follow-up PET scan, and for the last week, I've been awake.  I know I must be sleeping at least a few hours a night, but it feels like I'm just laying awake or rolling around or listening to him breathe.  All.  Night.  Long.  And my brain is alive with worries.   During the day, I pay attention to every time he clears his throat or coughs.  Is it back?  Is this irritation from the radiation, or is it something more ominous?

Waiting for the other shoe...

I don't know if anyone else has ever felt like this, and I feel really odd for even feeling it.  So about three weeks ago, Wayne got the wonderful news that his PET scan is clear of cancer.  This is very good news, and you'd think I'd been feeling very optimistic.  My usual disposition is very optimistic, so anyone would think I'd easily revert back to it. 

But for some reason, I'm finding it really hard to believe that he truly is cancer free.  There's some part of me that feels very worried that as soon as I let down my guard, the cancer is going to sneak up on us again.  I'm afraid to believe that it's really gone.  I didn't really realize it before, I did put some distance between us in preparation for him possibly dying.  I'm not proud of it, but I know that I did.  So now that he's not in danger of dying soon, I'm finding it difficult to let myself get close again.  I really feel that as soon as I let myself get sucked in to believing he's not going to die, he's going to get sick again, and I'm going to get a hard kick in the head. 

Just when you think it's over...

Isn't it ironic...

I'm happy to report that my husband is NOT dead, but not because he didn't try.  Yesterday afternoon, he was feeling pretty good, so he decided to do some spring cleaning of our pool area.  He hasn't been up to a lot of stuff, so it was looking pretty rough.  The first item on the agenda was to blow the leaves off of the top of the pool cage.  So, using the electric leaf blower, he started...and then managed to fall backwards into the pool while still holding the ELECTRIC leaf blower.  Thankfully, when our house was built, they must have used a good electrician, because our GFCI outlet did what it was supposed to do, and he was not electrocuted.  Because he did live through this ordeal, it's somewhat funny.  If he hadn't though, I can't help but think about the irony of my husband dying by electrocution just three days after having been given the all clear for his cancer.  I'm sure it would have made the paper.   Headline: "Man dies of electrocution after being cured of cancer." 

Of course, he was pretty mad at me for not running out there immediately.  He said, "Didn't you hear me yelling out there??"  I was like, "I heard you swearing, but that's not so unusual that it raised concern."  He just grumbled while he dripped off.

And the good news is...

We got the results of the PET scan yesterday, and, according to Wayne's oncologist, "It looks good."  He is not showing any abnormal cell activity at this time, so for now, we're done with chemo and radiation and blood tests.  He'll need to be monitored regularly, and he won't be considered "cured" until he's been cancer free for 5 years, but it's a start.  It feels really good to be looking at summer vacation without the "C" word hanging over us.

Feeling morbid...

Tomorrow we find out the results of Thursday's PET scan.  My brain is thinking really miserable, morbid thoughts, and I can't make it stop.  I want to be positive; I really do.  But my brain keeps wondering what will happen if the PET scan shows more cancer.  What will he have to do next?  Can we do more chemo?  How much chemo can a person stand before the treatment kills them?  What if he has to go on disability?  What if the doctor gives us a time frame for how much longer he has?  What would I do without him?  How will I afford to live?  Would I sell the house?  Could I sell the house?  Should I get a condo instead?  How would I possibly get the house ready to sell?  The experts say to not make any decisions for at least a year after a spouse dies, but what if I can't make the mortgage payments?  Who will mow the lawn?  Who will remember to change the oil in the car? 

Shut up, Brain.  Just shut up.

Field Trip...

The two of us chaperoned a field trip last night to Universal Studios in Orlando.  We took 148 8th graders over there for their graduation trip.  We left at 1:45 in the afternoon, and we pulled into our driveway at 3:21 am. 

Last year, I went by myself.  Wayne was supposed to go too, but then he got a music gig at the last minute, so he had to cancel.  It's an awesome trip, and Universal really makes it worthwhile to be a chaperone.  They have free Chaperone Lounges with snacks and drinks.  They give each chaperone a fast pass wristband, so we got to skip to the front of the lines.  Last year, I hung out with some teacher friends, and we booked around the park going on every ride at least once and hardly sitting down at all.  With Wayne last night, we took it easy.  We went on several rides, but we enjoyed taking it slow.  We rested often.  I was worried that he might have to cancel this year because of not feeling well enough, but I think he did pretty good.  He started to feel pretty beat by the end (so did I!), but it was great to be out there doing something out of the usual. 

It was also good for us, I think.  I know we weren't alone by any stretch of the imagination, but just spending some time together to do something fun was really welcome.  I miss him, and I miss doing "stuff."  I'm really hoping that with the end of chemo now, he'll start feeling better soon and want to do more things over the weekends.  I'm not blaming him, and I don't feel intentionally slighted, but it it was hard to go many places on our days off when he was feeling sick after his Thursday chemo sessions.  Here's to more busy weekends on the horizon!

PET scan...

So this morning was Wayne's PET scan.  We have an appointment on Monday to find out what's going on.  I'm feeling very anxious about the results.  I want so much to feel positive that all of the treatments for the last 9 months have worked, and he'll get a scan that is clear of any cancer cells.  I want to believe that.  One part of my brain keeps telling me to think positively.  Positive thoughts bring positive results, right?  Then the other part of my brain is scared and fearful that it will not be clear.  I don't want these negative thoughts floating around my house and wreaking havoc on his cells.   I want them gone!  Go away negative thoughts...go away.

One hair...

My husband has lost all of his hair to chemo.  He used to have hair on his head and a goatee and mustache.  He used to have eyebrows and eyelashes.  He used to have a hairy chest.  He used to have a good amount of body hair pretty much where ever a man is supposed to have it.  It's all gone now.  The chemo started out slow, but then it all fell out. 

But there's this one hair on his upper lip.  ONE hair.  I joke with him about this one hair.  When I kiss him, it pokes me in the lip.  If I touch his lip, I can feel it.  When he's in the sun, I can see it glistening.  It's just so funny to see this one solitary hair.  But in a way, it's really unbelievable too.  This one hair is hanging on and one and on.  Maybe this one little mustache hair is showing the others where to colonize when the time comes.  Maybe this one hair is just that much stronger than the rest and it refused to let go when other hairs gave up.  Maybe this one hair is there to make my husband feel a little less like a naked mole rat.  I don't know. 

He actually shaved it off this morning because he thought it was looking weird to have this one hair sticking out.  I feel pretty sure it will grow in again, and maybe with the last chemo last week, it will bring friends. 

Done...

Well, with any luck, Wayne had his last chemo treatment yesterday.  I'm really ready to be done with chemo and cancer and all of this.  I'm pretty sure he's ready too. 

Next week, he has the PET scan to see if all this chemo has worked.  I'm scared that the PET scan will come back with something else, and we'll have to start over again.  I'm not sure either of us is up to that.

I have things that I want to say, but the words are stuck.  I just so much want to be done. 

It's definitely not been the fun party time they promised.

A new husband...

One of my friends from work was telling me today how she and her husband are going to couple's therapy.  Obviously, I don't know all the ins and outs of any relationship, but her hubby seems like a good guy, and mostly she seems to like him.  Anyway, she was saying today that she was bored.  The thrill of the chase was gone.  She likes the excitement of a new relationship, and learning a new person.

I think she's nuts. 

Having to get a new husband is one more thing that terrifies me about Wayne having cancer.  Besides loving him, I like my husband.  I'm used to him.  We get along well.  We have stupid jokes we both laugh at.  He doesn't make me go to weird restaurants.  He knows what I like and don't like.  We have worked out most of the really difficult things that pop up in the early years of any relationship, and we're still together.  I joke that I have him trained the way I want him.   If he dies, I'd either have to start again with someone else or resign myself to being alone at 43. 

Yeah, after 13 years, our marriage is not always roses and fireworks, but I'm okay with that.  I do not want to date again.  I don't want to have to learn new weird quirks.  I don't want to get used to new noises during the night.  I don't want to have to hammer out the division of household chores.  I don't want to talk about "money."  I don't want to get to know new in-laws or step-kids.  I don't want to wash some stranger's socks or underwear.  I don't want to teach a new man what I like in bed.  I don't want to get naked in front of someone new!  I don't want to have to explain my kinks or what I like and don't like.

None of this sounds like fun to me.  It does not sound exciting or thrilling.  It just sounds like too much work, and I'd much prefer to stick with what I have.

Uses for fingernails...

So in the last few weeks, my husband's fingernails have almost all fallen off.  If someone out there is going through this, I will say that the idea of his fingernails falling off was much, much worse than the reality of them falling off.  The idea still makes me shudder, but after him losing 7 out of 10 nails so far, seeing them gone is really a whole lot less gross than I was anticipating.  He has told me that it really didn't hurt at all when they finally came off, and, in fact, he didn't even notice the first one had!  A couple of them came off in the shower without him noticing until after.  He still has both ring fingers and one pinky nail left to go...but his toenails are starting now to turn purple.  Yikes.

Anyway, we've noticed there are lots of things that we use our nails for that really didn't seem important before.  Without nails, it's really hard to pick coins up off the floor.  It's nearly impossible to open a soda can.  It's difficult to do up or undo buttons.  He can not scratch himself or my back for me...I miss that.  

Heebie Jeebies...

Okay, I admit it.  I'm grossed out.  I'm a horrible person, I know.  Right now, I just want to grimace and cringe, and I feel a little nauseated.  My husband just texted me to tell me that his fingernails are coming loose.  I knew that this was a possibility because it was one of the "side effects" we were told about, and then about two weeks ago, they started turning purple, and the PA at the oncologist's office did say it looked like they would probably fall off.  BUT I was really hoping they wouldn't.  I was okay with his hair falling out.  I was okay with his skin peeling off in huge sheets.  I was okay with the blisters in his mouth.  The fingernails coming loose has definitely got me all ickified. 

I owe him though.  A few years ago, I got very sick, and I had to have a drain put in my side to take care of an abcess, and he was so good about helping with changing the bandages and keeping it clean, and if he was grossed out by it, he never showed it.  I'm afraid I won't be able to do the same when I see his hands this afternoon.

Damn.  I hate chemo.

I was going to call this...

Post "Sunday Morning," but I've already used that for a title a while back, so I'm kind of stumped. 

So anyway, while trying to think of an awesome alternate title, I started thinking about the Maroon Five song called "Sunday Morning."  And now I'm all side-tracked with song titles, because then I was thinking of other songs about Sunday, like U2's "Sunday, Bloody Sunday."  I don't think that would make a good title though. I suppose I could use "Pleasant Valley Sunday" by the Monkees, but I don't live in Pleasant Valley...

Monday has "Manic Monday" by the Bangles and "Monday, Monday" and "Rainy Days and Mondays."  Tuesday has "Ruby Tuesday" and "Tuesday Afternoon."  I've seriously got nuttin' for Wednesday and Thursday, but Friday has that song with "Friday's on my mind" in it.  I'm not sure who sings that one.  And, of course, that new silly "It's Friday, Friday" song by some teenage girl.  I remember "Saturday Night's All Right" by Elton John from when I was a kid.  Oh, and the "S-A-T-U-R-D-A-Y," that they'd play at the roller rink.  There's an oldie that goes, "Oh, it's Saturday night, and I ain't got nobody.  I got some money 'cause I just paid."  I seem to remember "Splish, splash I was takin' a bath" on a Saturday night.  Wow...lots of songs for Saturday. 

Still nothing coming to mind for the middle of the week.  I wonder if the song writers know of the opportunity they're missing for those days? 

This thought is completely off topic because it doesn't have anything to do with dealing with my husband's cancer, except for the fact that it is early on Sunday morning, and I'm letting him sleep in because he's wiped out from Thursday's chemo.  I have to laugh at myself because there WAS something I was going to write about on this Sunday morning, but now I've distracted my brain so much with song titles that it fell out of my head...and I don't even have "chemo fog" to blame it on! 

And here we go again...

Wayne restarted chemo today.  This is still round two, which has been going on since January, but it's been stopped twice because of his really horrible reactions to the drugs.  Originally, the oncologist said 12 to 18 weeks for this round, but yesterday Wayne was told that they'd do another five weeks (which would make 12 weeks of actual chemo) and then do another PET scan, and then, to quote the doctor, "Go from there."  What a really horrible statement!  Go from there?  Go from there?  I really wish he'd said, "And then we'll be done."  That would be better.  I'm sick of chemo.

I'm fretting more than usual right this minute because I just read about Roger Ebert's passing.  I'd read the article THIS morning about how he had to take some time off to fight his cancer battle again, and this afternoon he's dead.  MSN said that Ebert wrote in 2010 that he did not fear death because he didn't believe there was anything "on the other side of death to fear."  I do agree with him.  "I was perfectly content before I was born, and I think of death as the same state," he wrote.  I like the idea of that.

Keeping the faith...

I wish I could say that I have faith that God will pull us through this cancer, but I can't.  For the last few years, my faith has been drifting more and more away from believing in God.  I don't think I'm completely atheist, but I'm definitely falling into the agnostic category.  If there is a God out there somewhere, I just don't think He has all that much to do with those of us on Earth.  This has been a long transformation.  When I was a child, I always went to Sunday School, and I went to church every week well into adulthood.  I prayed for my father when he had a brain aneurysm, and I think that was the last time that I felt like there was anyone listening, but now I believe it only felt that way because I desperately wanted to feel that way.  I say that because some really miserable circumstances through the last 7 or 8 years have led me to believe that God is not there, or, possibly, if He is there, He's just not paying all that much attention to us.  I'm really thinking lately that He's just a way for humans to be less fearful of the unknown. 


My friend here at work has a little boy who was born with half a heart.  The friend and his wife are some of the most faith filled people I have ever known.  They have gone through so much over the last five years as their little boy has had several surgeries, and then finally last summer, the doctors said he would need a heart transplant, and they were so happy when in the fall, he received a healthy, new, whole heart.  People all over have been praying for him, and there was great joy when he finally was able to leave the hospital at Christmas time and come home.  Last week, his mom posted on Facebook that he needed to have a PET (cancer) scan because some of his numbers were elevated.  Last night, she updated and said the PET scan showed "areas of concern."  Really??  Can this family not catch a break?  If there is a God, why put this little boy through even more?

So while others pray to a God that is appearing to me to be not much more than a figment, I am left not knowing what to do.  If God is all powerful and could heal this little boy, but he doesn't, what chance does Wayne have for a miracle?  And if Wayne gets a miracle, but my friend's son doesn't, how does that make any sense?  I know, I know.  There are people that will say that God's ways can not be known to us, but what kind of Supreme Being would choose a 60 year-old man with his fair share of "sins" over an innocent 5 year-old boy?  I was telling my mother the other day that I am actually more comforted by thinking there is not a God than by the thought that there is one who would allow these things to happen.  Like I said earlier, I am just not sure where I am with this whole faith thing anymore.

I found this quote from the television series Babylon 5: " I used to think it was awful that life was so unfair. Then I thought, 'wouldn't it be much worse if life *were* fair, and all the terrible things that happen to us come because we actually deserve them?' So now I take great comfort in the general hostility and unfairness of the universe." 

I think they may have been on to something.

Taking a break...

Wayne is having another batch of horrible side effects from the chemo, so they're giving him some time off, and then he'll start up again with another new cocktail.  This current chemo cocktail has made his hair fall out, given him horribly painful blisters on the palms of his hands and soles of his feet, and now his fingernails are turning purple.  The blisters are popping and oozing before finally scabbing over and it truly looks like he has some form of leprosy.  He keeps saying to me, "I'm sorry I'm so gross."  I don't even know what to say to that.  I keep trying to tell him that he's not gross, but some of these issues are kind of icky.  Yes, he's still my husband, and yes, I still love him, but my attraction level is bottoming out.  Granted, the stress of this whole thing has pretty much killed off both of our libidos, but still it would be nice to be able to look at my husband and not be worried he's going to be in pain or his fingernails are going to fall off if he touches me.  I miss us. 

The doctor promised two weeks off, and then he'll start up the treatments again.  It's nice to have the time away from the poisons, so we can enjoy our spring break this next week, but it just gets added on the other end, so it will go even longer.  The doctor said he's never seen one person get so many negative side effects.  How lucky can we get! 

Today was the day...

when I went in to my GYN to insist that, in addition to my normal annual screens and tests, I be tested for HPV.  It turns out that I didn't have do much insisting because they've been screening me for the last 6 years!  I've been tested 4 times in the last 6 years, and my tests have never shown anything abnormal. 

This is good news for me, but not so good for Wayne.  Another negative test (or series of negative) means that it could be just a fluke cancer, and for him, that's not a good thing. 

Urgh.

What doesn't kill you...

So I was driving my daughter back to college yesterday, and the Kelly Clarkson song, "What doesn't kill you makes you stronger," came on the radio.  It's a catchy tune, but it got me thinking that maybe a better title for the song would be "What doesn't kill you almost kills you."  I'm feeling so tired of being strong right now.  I'm tired of people telling me how strong I am.  I don't want to be strong!  Many days, I want to curl up in a ball and just hide from everything that's going on.  I don't want to be a cancer spouse anymore!

Minimally, the song should be "What doesn't kill you is still pretty damn painful."

Downsizing?

With our youngest child heading off to college in the fall, Wayne and I have been discussing downsizing.  I can definitely see the advantages.  We currently have a 4 bedroom home that we built when we had three kids under ten living with us.  12 years later, we are looking at one empty bedroom, one mostly empty bedroom, and one soon-to-be mostly empty bedroom.  We have a lovely pool that is just not getting used as much as it did in years past.  We're paying a ton of money to heat and cool a lot more space than the two of us need.  Maybe it is time to move into something smaller?  I hate to say that parts of my head are thinking about living in this house on my own if the worst happens.  I can't begin to imagine taking care of it all by myself.  Wayne has always been in charge of mowing and pool care, and it scares me to think of trying to take on those chores.  Not that I don't think I could learn how to do them, but more just finding the time and energy to do them.  I also wouldn't be able to afford this house without his paycheck coming in. 

We had talked about selling our house at some point in the future, but it feels like the cancer is making it seem more like something we should consider sooner rather than later. 

Stay off the internet...

So since this whole thing about HPV came up, I've been researching like a maniac.  I keep finding things about how it's pretty unlikely that my husband's BOT (base of tongue) cancer is NOT HPV related even though his test came back negative, and especially since it came back negative in a swish test which is considered to be pretty unreliable.  So that puts us back to square one.  Does he have it?  Does he not?  How does this effect me in the long run?  Am I at a higher risk for cervical cancer now because of this?  The more I find out, the more questions I have.  I have an appointment with my GYN next week to have my regular PAP test, but I will also be insisting on an HPV test at the same time.  This seems to be the best course of action at this time.

My husband's oncologist basically suggested to him that we just "stay off the internet," because it creates more stress and confusion and fear than it alleviates.  And as much as I'm in the "knowledge is power" camp, I'm not at all sure he's wrong.