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.

Divorce after cancer...

I just read this article about the statistics regarding divorce after a spouse is diagnosed with cancer.  It was not good.  The article said that a cancer diagnosis can either bring a couple closer together, or more likely, tear them apart.  It's a scary thought. 

It said that in many cases when a spouse is diagnosed with stage 3 or 4 cancer, the other spouse tends to start to separate away.  They didn't say in emotional preparation for the spouse possibly dying, but that seemed to be the implication.  Then if the spouse does survive the cancer, it makes it harder to come back together. There is already a gap that might not have existed before, and it is very difficult to close that gap.  I wouldn't say that I am pulling away in preparation for him dying, but I do not always feel like the unit we were before.  I find myself doing more things on my own.  It's not that he doesn't want to do something necessarily, but he's feeling too exhausted or nauseated from chemo to leave the house.  I feel sometimes like I'm abandoning him, but I don't want to spend my entire weekend sitting and watching television, and that's about all he's up to doing.  I took my older daughter over to Disney yesterday, and it was nice to get away from the house and do something fun.  I wished he could have come with us, but he's just not up to it, and, to be honest, it was nice to get out and not think about everything for a while.  I'm not saying this is what is happening to me, but I can definitely see some areas where it's harder to feel like we're a couple, and maybe I just have to try harder to make sure we stay connected. 

My husband has been fighting his battle since last August, so for about 7 months, and I feel that he's hanging in there.  I wonder if I've been supportive enough, and that was an area that the article talked about.  It said the partner who is not sick doesn't understand what the other is going through and is not able to offer the level of support the sick spouse wants or needs.  It's hard to know what to do in this situation because it's so new and hard to deal with from both sides.  I try to be supportive, but I don't know if I am doing enough.  The article said that lack of support was something the sick spouse feels most often.  I understand that this might be an issue, but one person interviewed said that she felt like her husband "just kept going on with his life like nothing was happening."   I felt so bad for her, but I know that I've had to keep going.  I couldn't just stop working while he took four months of sick leave and was going through his first round of treatment.  I had to keep taking care of the kid and getting her to her activities, so maybe I empathize more with the husband here because in trying to keep things as normal as possible, he was actually making his wife feel he was not giving enough support.   I don't know what to do any more.

I am really feeling more and more like with cancer, there is no way to win.

Basket case...

The last few days have been very rough.  I don't know exactly why, but I've been on edge and ready to cry at the least little thing.  I'm not being a very good caregiver to my husband or my injured daughter, and I feel very guilty.

I did not sign up for this.  I'm ready to pack my hobo bag and catch the next train out of town. 

Good news and bad news...

Since my hubby was diagnosed with stage 3 oral cancer in the base of his tongue, I've been a researching fool.  One of the things I found out was that his cancer is often related to being HPV positive (in addition to smoking and heavy alcohol usage) , and since that is the most common sexually transmitted disease, it's a good idea to find out if the cancer is related to HPV to avoid spreading it, and also, so if he was positive, I could make sure to get my PAP tests done regularly and not put off looking into any weird neck swelling.

While the treatments for HPV+ oral cancers and HPV- oral cancers are the same, they are considered to be much more effective on the positive kinds.  Well, Wayne had the test last week, and his results came back negative.  On the one hand, this is good news because it means that I have not been exposed, so I don't have the additional risk factor of HPV+ for oral and cervical cancers.  This is a relief.  The bad news is that there really is no reason at all for him to have gotten this cancer!  He's a non-smoker.  He's a rare social drinker.  He is completely not in any risk group for oral cancer.  So why does he have it??  And now it's the kind that is less likely to respond to treatment.  I really hate things that don't make any sense.

There's a reason I'm not a nurse...

So Friday, my daughter fell at guard practice and tore a ligament in her foot.  We spent the better part of Friday evening in the ER getting her x-rays and such to make sure it wasn't a broken bone.  Fortunately, it wasn't broken, but it did require an ace bandage and a gel splint and crutches. 

This weekend has made it very difficult for me to maintain my patience with my patients.  Wayne is not feeling well because of Thursday's chemo, and Maggie is gimping around on crutches, so it's been up to me to be the nurse.  I'm not good at being a nurse.  I suck at it.  I really just want to yell at both of them to just get better already.  Yes, I'm a horrible person.  I'm aware.

Too much stress...

I feel completely stressed out.  My job is going well, but we're coming to the end of a big unit on Tuesday, and I'm worried about the outcome, but I won't know for 2 months how it turns out.  My stepson has moved to China and is freaking out about money, which is causing his mother and my husband huge amounts of anxiety (and costing them a small fortune!).  My other stepson and daughter-in-law are coming for a visit next month, and I'm stressing about getting everything ready.  I wanted to finish a project before they show up, but I just don't think I'll get it done in time.  My youngest daughter graduates from high school in three months, and there's so much to do before she does!  How many forms have to be completed for her to go to college? 

There's so much more, and my brain makes lists at nights, so I've apparently, not by choice, given up sleeping.  I either can't fall or stay asleep, and it's making me more anxious, which is causing me to not be able to sleep more. 

Wayne is very, very angry.  It seems like he's yelling at any little thing right now.  It's not his normal demeanor, so I'm trying very hard to be patient, but I feel like I'm walking on eggshells.  His hair is now like a baby chick...soft and downy and not much of it. I commented yesterday on his head being all fuzzy, and he said I was laughing at him. 

Yeah, just a little stressed out...

Say yes to the dress...

It's Saturday night and my daughter is out at the movies with friends, so Wayne and I are just hanging out at home.  He's been feeling a little green since this afternoon, and though we were expecting he'd probably start feeling bad today, I was kind of hoping he wouldn't with the new "cocktail." 

So back to where I started.  As Wayne played on the 'puter,  I was going through the DVR and watching things from the past two weeks that I hadn't gotten to yet, and one of those things was an episode of TLC's "Say Yes to the Dress."  This particular episode featured Margo, a young woman who was battling cervical cancer.  As she tried on gowns, she bravely pulled her hat from her bald head and showed everyone how beautiful she was even without hair.  This was especially poignant for me because last night I used the clippers and shaved what is left of Wayne's hair down to barely fuzz, and when we went out to the drugstore this afternoon he put on one of the chemo caps I knitted for him for the first time, and he hid his almost bald head from the rest of the world.  At the end of Margo's episode, they showed her destination wedding and her walking down the aisle in her white gown with her newly-sprouted baby hair, and she looked lovely and so happy, and I felt such joy at seeing her, and what I thought was her win against cancer.  The tag at the end of the show told me that she has since died. 

I cried. 

I'd have to kick someone's ass...

One of my Facebook friends, a former co-worker, lost her mother today.  I'm very sorry for her loss, and I wrote to her expressing that I would keep her and her family in my thoughts.  Many others talked about keeping her in their prayers.  My personal religious beliefs are in a state of flux, so maybe it's just me being oversensitive, but several other posters said things like, "Your mom's in a better place now," and I have to say that just irritates me to no end.  I didn't say anything to them, and I won't, but my nerves are raw, and I'm thinking of doing some harm. 

Seriously, if my husband dies, and someone says to me, "He's in a better place now," I might not be able to control myself.  I really think I might have to kick that person's ass from where ever I am at that moment to someplace much farther away!  In my heart, I know they mean well, and I'm not at all against people believing in a higher power or having faith in something beyond, but the best place for my family members to be is here on Earth.  I don't want them in Heaven or heading into the light.  It's not better if they're gone.  It's just not.  

Starting again...

So Wayne restarted round two of chemo again today.  He had two weeks off because of having a really horrible reaction to one of the drugs.  They changed his "cocktail" and gave him a little break to get stronger, but we're back on the road again now.   Happy Valentine's Day!  Your present is 6 hours of chemotherapy!  So romantic!

Sounding selfish...

Okay, if there is actually anyone reading these things, this is something that is going to sound really, really selfish.  I'm not proud of this, but it's been on my mind, and I'm feeling out of sorts because of it.

I pride myself on being a very independent woman.  I like that I supported myself and my two girls after my divorce, and I like knowing that I could do it again if I had to.  I stress to my two daughters that they need to have an education because they need to be able to support themselves without anyone's help.  It's important to me for a number of reasons, but it also makes me feel like I am not trapped.  If I wanted to leave my marriage, I could.  I don't have to stay married because I don't have any other choices.  I don't want to leave, but if I did want to, I could.

With that said, I don't want to leave my marriage.  I actually think we're a good fit, and I am, generally, pretty okay with the way things are going.  But since Wayne has been diagnosed with cancer, I feel really, really trapped.  Again, it's not that I want to leave or plan to leave, but it's that now I can't.  It's kind of like my job.  I like my job a lot.  I'm not planning to change my jobs, and there's a very good chance that I'll be at my job until I retire.  I am happy there, and I'm not anticipating changing anything.  BUT, what if someone said, "You can never leave your job."  Suddenly, I'd be thinking about leaving or changing positions even if I wasn't before.  I don't want someone to tell me that I can't ever do something else.

And that's how I feel about the cancer.  It's like being told I can never leave, because what kind of a horrible person leaves when their spouse has cancer?  I know it's selfish.  I know it's wrong.  I know...I know...I know...but I still feel trapped in a situation that I can't escape. 

I struggle with this thought.
  

Sunday morning...

This has actually been a good weekend.  I know it's because Wayne hasn't had his chemo treatments in two weeks, so that's hanging over our heads, but it's nice to see him feeling so good again.  He's been able to eat and is not running to the bathroom every ten minutes.  He only took one long nap yesterday instead of being completely exhausted all day.  It's been nice.  Really nice.  I'm trying not to think about microscopic cancer cells floating around his body and laughing, "Hahaha...you took two weeks off from chemo and that's all the time we needed to find a nice spot to set up a new camp!"

How long do they need?  I think about this a lot.  Throat cancer is not usually caught in the early stages because we all tend to dismiss the symptoms as something else.  I know we did.  All last winter, I remember him complaining of a scratchy throat or thinking he was coming down with a cold or maybe his allergies were acting up.  It wasn't every day.  Just once in a while, but looking back, it was a little too often.  I remember each time thinking, "Oh crap.  If he's sick, I'm gonna get sick too."  But I didn't.  He didn't really get sick either.  He would just think he was coming down with something for a few days and then it would go away.  Then in April the lymph nodes in his neck swelled up.  We dismissed this too, until it didn't go away for a month.  In May, he went to his regular doctor and got some antibiotics for an "infection."  By June, the lymph nodes stayed swollen, so the doctor sent him to an ENT for another round of stronger antibiotics.  There was no change, so a needle biopsy was done the day before we left for our cruise.  The doctor wasn't concerned and suggested we go enjoy ourselves.  I'm so glad we did, because it was nice to have that last vacation before facing the "C-word."  The needle biopsy came back clear though, so the ENT wanted to do a surgical biopsy.  This was July.  The biopsy showed squamous cell carcinoma.  A PET scan confirmed that it was stage 3.

I think about this often.  Should we have done something sooner?  Could we have?  How many scratchy throats have I had in my lifetime that were just a cold or mouth breathing or "somethin' bloomin'"?  How do we know when to dismiss something as nothing or take it seriously?

Too much to ponder on a Sunday morning...

Chemo fog?

Last night, Wayne is completely freaking out because he can't find his bottle of magic prescription mouthwash anywhere.  He's ranting about how it has vanished, simply vanished.  I ask the usual helpful wifely questions, "Is it in your school bag?  Did it fall out of your bag into the trunk of the car?  Did you leave it at school?"  He's checked everywhere, and it's nowhere to be found.

While he's getting ready for bed, I volunteer to do another search, because as Roseanne Barr used to say, "The uterus is a tracking device."  I go downstairs and sitting in the middle of the table is a large orange bottle of liquid that matches the description of the vanished mouthwash, but I figure it couldn't possibly be the one he is missing because it's just out there in the open.  Plainly visible. 

It's after 11, and well past my bedtime, but I go out to the car.  I check the trunk.  I check the backseat.  I don't see anything that might be what we're looking for, so I go inside again and conduct another hunt for the elusive mouthwash.  I finally give up.  I've decided it is probably still at school, but before going back up to bed, I grab the bottle from the table and take it up to him.  His reaction is instantaneous, "You found it!  Where was it??"  I'm not even sure I should answer because I know he'll just beat himself up about it, which he does when I do tell him. 

Is this related to the chemo?  Or just because he's a man?  Or maybe because he just turned 60?  So hard to make the call.

Naked Mole Rat...

So this morning, Wayne said to me, "It's starting."  I looked up from packing our lunches and gazed at him quizzically and asked, "What is?"  He said, "My hair."

The hair on his head still looked mostly normal, but at his insistence, I took hold of a tuft of chest hair and gave it a light pull.  The entire tuft came out between my fingers, and he didn't even flinch.

I've never been a woman who prefers a hairless man.  In my opinion, men should have hair on their chests.  I think my husband looks sexiest when he sports a goatee.  In fact, until a few months ago, I'd never even seen his chin because the entire 15 years I've known him, he had a beard or goatee.  But now, that's gone too.  The little chin hairs that started to re-sprout after the radiation are now falling out in clumps. 

He told me he was sorry he was grossing me out.  I wouldn't say I'm grossed out, but it is a little unnerving.  I'm wondering if in the morning there will be a pile of hair on the pillow and sheets, and the man next to me will be smooth skinned instead of furry. 

I'm not sure how I feel about that.

The edge of tears...

Call it stress.  Call it hormones.  Call it whatever, but today felt like tears were threatening to spill at any moment.  I'm not a crier.  Okay, not an often crier.  When it happens, it's usually fast and furious, and then it's over.  Today was not like that.

I kept getting overwhelmed by emotions, and not all of them had to do with me or Wayne, and it was just hard to deal with.  A columnist for our local paper wrote an article about his terminal brain cancer.  A Facebook friend of a friend posted that her husband died yesterday from lung cancer. 

On my way home from school, I dropped my husband off for his oncologist appointment, and I drove the ten minutes to my house to wait for him to call me back to pick him up.  I thought I might take a short nap, but instead I locked myself in the bathroom and let the tears that had been pooling in my eyelids all day spill over and over and over. 

I feel a little better now, but my emotions are so crazy lately, and it makes me feel so weak.

Missing...

My older daughter was home from college this weekend.  It was really great to see her, but it was just a short weekend break.  Today, I had to drive her back.  It's not a horribly long drive, but it does take about 4.5 hours to go round trip, including bathroom stops and such.  Normally, Wayne would drive or we'd take turns, but he had to spend another 5 hours at the hospital getting IV fluids again, so he couldn't go, and I was on my own.  My younger daughter went too, and we did have a nice chat on the way home, but it's just not the same.

I miss him.  I missed having a lazy day yesterday.  I missed having a road trip companion today.  I miss talking to him.  I miss going out to dinner.  There are so many things that are different now, and I just miss the way things were.  Cancer sucks.

I wonder what they're thinking...

Since we found out that my husband, Wayne, has throat cancer, many, many people have been offering their prayers and support.  For this, I am very grateful.  And then I have also found out about a number of relatives of friends or acquaintances who "had the same thing," but they died.  I'm not entirely certain what friends are thinking about when they shared these little tidbits of information with me:

"Oh, my uncle had three rounds of chemo before they did surgery and cut off half of his face, and he died anyway."

"Yeah, throat cancer is rough.  My cousin had it, and he couldn't talk at all for six months before he died."

I'm not at all sure how to respond to such things.  Usually, I just nod and try to not look horrified, because I really do not think they were trying to freak me out, even if that was the actual result. 

Wayne and I were married in October of 2000.  It's a second marriage for both of us.  This year will be thirteen years, and I have to keep telling myself that he's not going to die, and I'm not going to be a widow at 43.  In a few months, our (my) youngest daughter will be leaving for college, and we were both looking forward to and dreading an empty nest.  Over the last year, we've had little nibbles of the life phase after children and it's both scary and exciting.  But what if I'm alone?

My general outlook of life is usually very optimistic.  My husband calls me a Pollyanna.  If there's even a glimmer of a silver lining, I'll usually find it.  I managed to stay very positive during the first round of chemo-radiation treatment even as my husband looked more and more like he'd fallen asleep on a Florida beach in July for about 12 days and charbroiled his face, but I will say that this round has knocked my inner Polly for a loop.  She's having a much harder time maintaining her optimism in the face of violent hacking coughs, no appetite, more weight loss, and frightening side effects. 

So it's even more of a jab when someone says, "Oh, my aunt died from that," because inner Polly is already taking a beating.  Some days, it's all she can do to smile and nod and thank them for their thoughts and prayers.  Because she really wants to kick them in the shin. 

Feeling guilty...

One of the things I hate the most about my husband having cancer is how guilty I feel.  Today, he was supposed to go over to the hospital to get IV fluids because he's been dehydrated, and his oncologist made arrangements yesterday for him to go twice during the weekend.  He left the house around 2 this afternoon, but the hospital was confused and couldn't find the orders.  After 2 hours, they finally figured out why he was there, and then it took numerous sticks before they got the fluids started.  It was supposed to take about 2 hours, but they want to slow the pace, so it will take 5 hours instead.  All in all, he'll be gone for about 9 hours total. 

So, I feel guilty.  I feel guilty for not going with him to hold his hand.  I feel guilty for wishing my day off from work could have been used for something fun.  I feel guilty for taking my daughter out for a late lunch because he can't eat anything but soft or liquids, and I had a coupon for Outback. 

And I feel so guilty for resenting the fact that he got cancer. 

For my record, he's not a smoker, and he never was.  It's kind of funny how every doctor we see says, "Oh, you're a heavy smoker, huh?"  And every one of them seems really surprised that he's not.  He's not a part of any of the usual throat cancer risk groups.  Obviously, I don't think that smokers somehow "deserve" to get cancer, but at least if he was a smoker, it would make a little more sense.  But it doesn't make sense.  He didn't ask for it, and he didn't do anything to cause his cancer, but I still resent that he got it, and so I feel incredibly guilty. 

Saturday Morning...

It's 10:30 on Saturday morning, and I'm letting my husband, Wayne, sleep in late.  A few weeks ago, we would have been up pretty early and maybe heading out to Disney World or to my daughter's color guard competition, but that's not how it is today.  My husband is on week three of his second round of chemotherapy for stage 3 throat cancer, and he's having a hell of a time.

Just three weeks ago, he was feeling strong and healthy since mostly recovering from chemo round one combined with radiation, but now after just two treatments, he looks and feels miserable.  It's been such a rapid down slide this time that I wonder if people can die from the cure before the disease!  He went to his oncologist this past Thursday, and they didn't even do the real drugs because his side effects are hitting him so hard.  On the one hand, it's nice that he'll get a break from the chemo induced intestinal distress this weekend, but it also means that treatment will be added on to the tail end, and I wonder what he'll be like in another 15 (now 16) weeks...

I'm not sure what made me start this today, but I'm feeling so angry and sad and lost when I want to be optimistic and strong, and I figured putting my thoughts down might help me cope with this new life that I didn't plan on or want.  I don't anticipate what I share will appeal to the masses, but if someone else who's "the spouse" happens to stumble upon this and know they are not alone, well, that would be reason enough.

He's up now.