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.