it’s over

Despite our falling out, SB has never left my mind. Not totally anyway. There’s too much history. Too many things that remind me of him. Add in that his oldest daughter and I have gotten closer, and well, he’s just never really left.

I’ve been going through some emotional upheaval lately. Lots of reframing of what I want and how certain relationships fit into my life. And whether they should fit into my life at all. Part of me wanted to reach out to SB as I’ve done so many times in the past.

But what I couldn’t answer for myself was, why? Was it that I really wanted his counsel? Was it that I was ready to have him back in my life? Or am I just missing something in the hole he used to fill? And since that hole is empty, why not reach out to the last occupant?

I broke the silence several days ago. Sending a rather flip text about a service I read about in a magazine called “Be a Tree”.  They encourage biodegradable caskets. They include seeds with your body so that as everything deteriorates, you quite literally become plant food and sprout a tree or a bush.

He’d always wanted to be cremated. His family has pretty much told him that’s all well and good but that they intend to bury him. Perhaps this was the happy medium. So I texted to tell him he could be a tree. That I knew it was morbid, but there you go.

There was no response. So the next morning I texted again. Saying that perhaps my earlier missive was inappropriate. And that if so, I apologized. He responded and said that no, it wasn’t inappropriate, that in fact it had made him laugh.

That was the extent of it for a few days. Then I got drunk one night. And as we all know, my phone should be taken away when I drink. Not because I drunk dial, but because I drunk text. I wish blackberry had something like g-mail’s mail goggles. That has saved me from more than one better-left-unsent e-mail.

Alas. The first text was to tell him I was drunk. On Dr. Pepper and coconut rum which had always been our drink. The second was to say that I missed him sometimes but that I didn’t know what to do about it because I’m still hurt and I feel like the cancer has changed him.

Then he sent me a friend request on Facebook. Which I accepted because the root of all this is that I’m morbidly curious about what’s going on in his life these days. The next morning he sent a text to say that he missed me sometimes too. That the cancer had changed him. That when he “blew up” at me (his quotes, not mine) that it was because he was jealous of me and angry at himself.

And there we sat. Naturally I worked it over and over in my mind. Was I really ready to be friends with him again? What had really led me to contact him? Maybe he and I should just be Facebook friends for a while and see how that goes? Should I tell him that’s what I think? A dear friend advised me to hold off on any grand declarations and just let things work themselves out.

So that’s what I did. And now, many days later, after checking in on his Facebook status updates, I’ve seen all I need to see. Nothing has changed there. It’s the same story. I could drop right down into it as though I never left. But I’m not in the habit of going backwards. And all of the little things that used to annoy me only slightly, seem larger somehow. Before I could overlook them because of the position he held in my life. I see know how that has truly changed.

Do I still miss him sometimes? Yes, absolutely. But I miss the person he used to be. I miss the relationship we used to have. Those days are over. Unquestionably.

88

SB goes in for his weekly blood work tomorrow. Tomorrow is a huge day. Because he’s been off his chemo schedule for a month now. Tomorrow marks 4 weeks. He had to go off schedule because his liver enzymes were too high.

The only way to bring them down, was to discontinue treatment and wait for his body to stabilize. There was a number he had to reach. The first week they dropped 8 points. And then a few more. And then, not so much. So tomorrow, when his blood has been drawn and run through all the tests that they do, if his enzymes are at an 88, he can resume chemo.

If not…

If not, it means that his body is rejecting the treatment and he can’t continue. He’d made it through 8 rounds of chemo. He was supposed to do at least 12. It’s true that everything has been looking good in terms of his brain scans, but the chemo had been the thing keeping the cancer at bay. Prolonging his time with us.

If he can’t continue, it will hasten his death.

I can’t escape all the eights. Eight rounds of chemo. Liver enzymes of 88. This is the eighth month.

Eight is my lucky number.

I was listening to NPR this morning while brushing my teeth and preparing for my work day. They were talking about a blog kept by someone with cancer. How the blogger equated it to riding a roller coaster. That no matter how many people you have supporting you, with you, behind you, rooting for you, at the end of the day, you are alone at the top of that hill. Only you know the sensation of facing the rapid descent.

I think that translates to watching someone go through cancer as well. My experience is different than his. But it is equally terrifying. And the last thing I want to hear is someone telling me, chin up. To keep a positive outlook. That there are medical miracles every day. I understand why people say those things, but I hate it when they do.

I’m sick to death of people making the assumption that just because you’re admitting to being scared, or worried, that you’ve given up. I haven’t given up. I’m realistic about the situation. SB is not going to get better. We have always known that one day he would go to the doctor and they would take him by the hand and tell him the cancer has returned.

There is a very real possibility that tomorrow, he’ll be told that his days of treatment are over. And while on some levels that’s a blessing because the treatments can be worse than the illness, it scares me more than I know how to admit.

Because I’m not ready for him to end his treatments. I’m not ready for the cart to start the climb up the last hill. I’m not ready for this to be the end. Or the beginning of the end. So I’m praying like hell for an 88 tomorrow. There’s a voice in my head chanting it over and over. Like a desperate gambler in a casino. Like someone at the tracks. With all their chips in play, hoping for the big pay out.

Come on 88.

Come on 88.

88.

88.

8.

8.

~Update~His liver enzymes dropped to 80. A full 8 points below what he needed. (More of those 8s. Intriguing.) He goes to the doctor tomorrow to resume chemo.

texts of desperation

SB sent me a series of text messages this morning.

Time to vent. I don’t expect any answers or resolutions, just an open ear.

I’m tired of driving to _____ weekly to have some poor nurse search for an uncollapsed vein from which to draw blood.

I’m tired of ingesting a fistful of pills at dawn, dusk, and 4 f’n a.m. to feel “normal”, when we all know I’ll never feel normal again.

I’m tired of not being able to drive. And I’m really tired of not having someone to touch who would touch me in return.

Okay, I’m done. Thank you for listening.

I’ve not written about his illness for a while. Because it has become part of the routine. Good days and bad days are all relative. When people ask, I tell them he’s doing fine. Which is true. If you understand that by “fine” I mean as well as can be expected.

No one wants to hear the details that he and I deal with. Medications that suppress his appetite. Other medications that increase appetite. Medications that lead to constipation. The Herculean effort involved in bowel movements. How they inevitably lead to a nap.

How so many discussions revolve around the following questions. Did you eat today? How much did you eat? Could you taste it? Have you gained any weight? Lost any? How do you feel? No, how do you really feel? Are you OK or is it the steroids doing funny things to your voice again? Did you talk to the kids?

He has a new chemo doctor. He’s pretty sure he fucked him in a park once. The doctor doesn’t recognize him. That has to be surreal. Not the fucking and forgetting so much as the fact that now this person is his doctor.

He asked me one day if it was normal for him to have sexual urges. If it was wrong, considering his situation, to still want to have sex. That one stopped me in my tracks. “Good lord darlin, of course it’s ok to feel that way. You’re not dead yet.”

The subject of the funeral comes and goes. I discovered that you can buy caskets at Costco and promptly sent him a text. He can’t decide if he wants to be buried with or without a certain pair of gloves. His mother suggested that he be buried in a t-shirt and sweatpants because that would be more comfortable.

He learned that the part of his brain that is now gone is the part that regulated emotions. He still has them. Emotions. They just get all wonky sometimes. He’ll cry at the drop of a hat over a commercial. He’ll complain to the manager of a fast food restaurant if service is slow. He’s learning that he has to listen to the people around him when they say he needs to relax and dial it down.

He also learned that the part of his brain that is now gone is where important information like phone numbers live. Because his tumor grew gradually he had time to shift those bits of information to other parts of his brain. If he’d had a sudden trauma they would have just been gone. He’s learning to deal with the fact that he is brain damaged.

On top of the bit about dying, he’s going to his grave knowing that he’s brain damaged.

I’d known for days that he wasn’t doing well. I try really hard not to dwell on the illness when we talk. Because I know he feels like a science experiment. Like a freak show. And we’ve said our goodbyes and had our cries and done all of that. But I’ve also made it very clear to him that I don’t want to be shielded from any of it. That I want to know.

But he’s a man. (yes, sexist) And he’s a caretaker by nature. And doesn’t want to be a burden. But I know him too well. I’ve known for days that something was up. I’m glad he finally told me. Because I hate the thought of him carrying this burden on his own.

His cancer is no longer a big crisis in my life. It just is.

silly things

My head is in California. But my heart is in Texas. I spent a long time tonight just sitting on my balcony. I bundled up in a sweater and jeans. I carried a bottle of wine and a blanket. And I just sat and watched the night. I gazed across the bay at the skyline of San Francisco. A view that I love.

But tonight the glow of the city that usually seems so warm and inviting, the sparkles that seem so magical, tonight they were dull. Because I’m wishing I was in Texas. Looking at those stars. With SB.

I want to tell him so many things. I want to tell him about projects at work and ask for his advice. I want to tell him about a new CD that I love. I want to talk to him about a movie I just saw. About a Canadian TV show I’ve been watching on DVD. I want to tell him how beautiful the water looked this morning during my commute. I want to tell him that I finally told Hollywood, out loud, that I love him.

He’s been sick long enough now that it doesn’t occupy my primary focus. His being sick is just a part of every day life. The endless naps and the hand fulls of pills. The appetite that waxes and wanes. The constipation that accompanies the return of his appetite. These things are routine. Starting and stopping a round of chemo are minor blips on the radar. I’m so used to how he looks now, bloated and bald that it seems normal to me. His voice has changed so much I’ve forgotten what he used to sound like.

Most days the cancer is just there. In the background. We’re matter of fact about everything but we don’t dwell. We live our lives. But tonight I can’t let it just be in the background.

There’s so much I want to tell him. Even though I just spoke to him yesterday. I didn’t get to speak to him today. And tomorrow he goes to the doctor. The doctor will read the results of the MRI he had on Monday. And tomorrow, as it is with all of “this” type of doctor appointment, could be the day. Tomorrow could be the day when we find out the cancer is back.

I hope that it’s not tomorrow. I know that the return of the cancer is inevitable. That one day he’ll go to the doctor to have an MRI read and the dreaded words will be spoken. But I don’t want it to be tomorrow.

So tonight I sat on my balcony. I drank a bottle of wine and I let Chopin waft from my living room and float past me and disappear into the night. And I thought about all the silly things that I want to tell him. But mostly I thought about how none of those silly things matter.

quality of life

How do you truly weigh quality of life versus longevity of life against each other?  How do you weigh the ambiguous “what ifs” of the future versus the concrete reality of today?

SB is undergoing chemo ostensibly to prolong his life. Although the docs say that if he lives for 5 more years he will be incredibly lucky. That two years is the more realistic expectation. But in order to get the two years, he has to go through chemo, for up to a year.

He has a daily treatment 21 days out of the month. 7 days off. Then right back to the treatments. He spends the vast majority of those 21 days weak and nauseous. He takes a 10 minute shower and then needs an hour and a half nap. He has virtually no appetite. When he does eat he throws up. It’s a good day when he can keep a can of Ensure down. It tires him to move from his bed to the couch.

For the next year there will be no work. There will be no driving. There will be few trips out due to a lack of energy. Not only is he pretty much trapped in his house, even in his house the only activities he can really fill his days with are listening to music or books on tape and watching TV and DVDs. When we talk on the phone if we have a 20 minute conversation, it’s a long one.

All this to prolong his life. But at what cost?

And what if it is all for naught? What if it doesn’t prolong his life and now the last days are spent in a living hell?

But how do you decide to just take your chances and live out the last of your days, however many there may be, with dignity? How do you know if the doctors are right or wrong?

This is the conversation SB and I had the other day. It was horrible. We’ve both been thinking these thoughts independently. I would never have brought them up. He did. And in the end, as horrible as it was to have this conversation, it was incredibly liberating as well. Our relationship is so special. I am so glad that we don’t have to censor our speech with each other.

So no decisions were reached. It was just talk. I don’t think either of is equipped to make that kind of a decision. So for now, we’ll just go along with what the docs say and trust they know best.