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.