After Waiting

Yesterday the past four months seemed like an eternity in Hell. This morning it seems like just minutes ago we were walking out of the doctor’s office incredulous that cancer had such an invisible strangle hold on his life. We both waited to wake from what had to be the ultimate nightmare. When we awakened, it was not a dream at all. We went on with our lives as best we could, trying hard to live rather than wait to die.

Cancer is insidious. The day came too soon when the waiting won out over the living. The chemo hurt more than it helped. Weakness–physical weakness–beat out our firm resolve. Day by day the hours asleep stretched longer. The ability to move diminished. Dependence replaced self sufficiency. Cancer transformed the stronger of we two into the more dependent and I do not know all the ways it changed me yet.

This evening Lane died. I know it is polite to say he passed but in every way he more than passed. I think he aced this life. The name of the end of this chapter is death. Only that ugly final word gives me comfort. My darling has died and the wait for his last breath is over.

There is a new challenge for the morning. I am not sure what that challenge is. I am not sure how to meet it or name it or recognize it. I know I will not be alone no matter how lonely I feel.

Permission to Leave

First, I never wanted cancer. I never wanted to be a widow or celebate or sad or angry. I never wanted to explain to my grandgirls that Papa isn’t going to get better or that, soon, he won’t be here at all. I never wanted to hide Audrey’s note asking him not to die. There are so many things that I never wanted and don’t want now.
The sad truth is he has my permission to stop this futile fight. My big guy can leave and go on to whatever comes next in the universe. I told him so.
He is unconcious and I call it asleep. His eyes roll back in his head and only the whites show under the shrouded lids. He hasn’t been awake all day. For the first time, I gave him his morphine in the bucal space between his cheek and jaw. The nurse says the liquid absorbs easily through the mucosa. She says the ativan will disolve there too.
This week he winces when touched. His brow furrows at a kiss and he moans when I try to rotate him into a new position–bed sores, you know. He hasn’t any yet. I see it as my job to have him die with skin intact.

He is dying and there is nothing he or I can do about it. So as he sleeps I talked to him. I told him he has been the best friend a girl could ever want. I told him that I love him and I love being with him and married to him and I love the way we have been together for all these years. And I told him it is okay to go. It is okay to let the curtain fall on this act of the play that is forever. I will be alright. I will be sad but no sadder than I am waiting for his body to give up. It is alright to slip into whatever the universe holds for him. He should take it easy; be gentle with himself and, yes, he should be gentle with me.

He no longer moves to the side of the bed to make room for me to hold him. I think the holding hurts. I think there is little that doesn’t hurt as the time for more medicine approaches. I know the sight of his frail frame, holocaust wrists, and sunken cheeks hurts me. Eyes that don’t quite focus and the missing catechism response to “I love you” hurt me too. I want MY love back. I want him whole and hardy and ready to take on the 26-year olds. I want to promise never to complain of the cold at another soccer game or beg off another softball tournament. I want to commit to every Aztec game until the rapture, as if such promises influence cancer and its progress through his body.

My darling, you have my permission to leave. This party isn’t any fun any more. There is nothing either of us can do to make it better now. But remember, please, how wonderful it has been. Take that memory with you. Take my love with you. Feel my touch as you go wherever this last journey takes you.

Surviving Recovery

Some years ago I began a manuscript about recovery. It started with the story of a lovely woman who fought breast cancer and won. Later, the story grew to encompass a former son-in-law who worked 12 steps until the siren call of crystal meth ended his recovery. The story grew and expanded as my life unfolded. There were the five miscarriages–grandchildren I would never know–a daughter wounded but alive. There was the joy of a baby at last and the  specter of past disappointments that led to post partum psychosis–or its very close cousin. There were jobs won and jobs lost, a stillborn boy, prostate cancer changing relationships, breast cancer re-appearing and redefining friendship; there was death.

There were many opportunities to recover and much to recover from. With every recovery the question rose again, “How will I survive?” By now I had hoped to have an answer to that question. By now I had hoped to know what it takes to get up in the morning and put on the big-girl panties and just get on with life. I keep recovering but I don’t know yet how to survive.

The only thing of which I am sure is that nothing ever goes away. No words you say in anger disappear. Certainly the words you say in love resound. Plants fruit and fade and feed the soil. Atoms smash together creating amazing power and sometimes devastation. Perhaps more powerful and devastating, people live and share and touch and leave behind their kindnesses and their angst. The energy survives even when the body cannot recover.

I am still studying surviving recovery. I am still trying to define what constitutes recovery and convince myself what it means to survive. You see, I do not know. I know some moments are universal and too painful to actually share in conversation. I also know that those are the moments that we would most benefit from sharing.

Relapsing from Survival

One e-mail pops into my mailbox and months of resolution go begging. I must be a poster child for suggestability. I am back on the “fix it” mouse wheel, running for all I’m worth–figuratively, not literally. Titlting at the windmill that is prostate cancer does me little good. It keeps me up nights and it doesn’t make my big guy any more responsive. He is in a haze induced by testosterone deprivation. His attention is on soccer balls, soft balls, and golf balls. I need a new hobby. Needlework is not meeting my needs.

I really don’t want to take my isolation personally. I know all the physiological stuff. I know the science behind what is happening, or not happening, around our house. I also know that my depression comes in waves brought on by the tides of life. If everything else is going great, I can live with celebacy. But everything else is not going all that great and I need to be loved, cherished, and even talked to —about something besides sports that I am not playing.

I know about affirmations. I have been affirming healing for six years, I have been affirming acceptance for six years. Right this moment I am not feeling healed, hopeful, or accepted. I am feeling damned lonely…and I am not by myself.

Survival is an interesting topic. It has been on my mind since Donna first had breat cancer twenty some years ago. Is survival just escaping death? Is survival a state of being, a state of extreme agitation, stasis, or is it an attitude? What is survival anyway? Is it one year or ten? If you lose yourself and stay alive, have you really survived? If cancer kills your spirit or changes your persona beyond easy recognition, have you survived? Donna stayed cancer free for five years and then had the second mastectomy, what? fifteen yearts ago? Joyce stayed cancer free for ten years, but the breast cancer migrated to her colon and now she is gone.

John helped me and the big guy through the first few traumas after prostate cancer. John is a fair warrier who has been fighting prostate cancer for fifteen years. Some years he seems to be winning and some years he has to go back on horemone therapy that makes his skin smooth, his beard thin, and changes his bustline. He hasn’t talked to me lately about intimacy. Six years ago, his advice was helpful and hopeful.

The problem with us is that if you don’t think about it–if the big guy doesn’t think about it–there is no intimacy. I cannot beg any more. I cannot say one more time what I want or need. I cannot initiate and be rebuffed again. I hate the passion of my pain and I hate that the big guy doesn’t notice. He doesn’t notice that I have left the room. He doesn’t notice when I leave the bed. He doesn’t notice me. I know the science behind it and it doesn’t help a bit.

So  I sit here with my keyboard feeling sorry for myself and sorry for Erin and Mrs. Chuck and Mrs. John. I try hard to feel sorry for the big guy but lately it just turns into anger and a snappy retort. Tonight, I wonder if I can survive prostate cancer. Tonight, I am not sure I am up to recovery.

 

Revisiting old pain

I have been too busy to write. I have been too busy to read and too busy to take care of myself, I have been altogether too busy. I don’t recommend it. Not only will no one actually wish to have spent more time at work as the Grim Reaper strops his sythe, but also no one will wish to have spent the few other hours asleep. Yeah, I am working and sleeping my life away and I am none too happy about it.

Today I heard from an old e-friend. He is active in the prostate cancer web lists and for a very long time I trolled those waters looking for meaning that I never quite found. It is supremely odd to get copied on an e-mail to someone you do not know by someone you only cyber-know about one of the most personal aspects of your life. It only underscores that I have boundary issues!

Another youngish man has lost his prostate. He hasn’t lost the fight yet. His wife sounds a lot like me–titlting at the cancer juggernaut. There has to be a cure somewhere that does not totally immasculate the patient. There just HAS to be.

Then there is the issue of Viagra, Levitra, Cialis–the ED triumverate that mostly doesn’t do anything for prostate cancer patients except give them a headache and a runny nose–and with Cialis the headache lasts 36 hours. The issue is that even the sure things, injections and so forth, that will make an erection are damnably expensive and some fool decided they are ‘lifestyle’ drugs. How, pray tell, is sexual function less a part of human health than, say, an artificial limb or a breast reconstruction? Ah there is the parallel. I see a letter campaign in my future. How is it that a woman having had a breast amputated is entitled to reconstruction but a man whose nerve bundles are severed in removing a cancerous prostate is only seeking recreation when he asks his insurer to pick up the tab for trimix?

I am off on another Quixotic adventure. It makes me crazy that I think about the big guy’s erection or lack of it more than he does. Maybe I just talk about it more. I have been trying not to. It really just gets me all in a tither. Since my parts don’t work so well either right now, I don’t know what I want.

I lied. I know exactly what I want. I want to roll the clock back 6 years and have my horn-dog honey back. I want him to grab my butt just because it’s there and hold me like the day can’t end soon enough. I want to be dessert. Instead, I am here and he is there and there is a giant gulf of silence, memories, and wistfulness between us. There isn’t even anything more to discuss.

The Most Survivable Cancer

Dan Fogalberg died yesterday–or was it Monday? I am sure he won’t mind that the days have kind of run together on this side of the veil. Dan joins a long list of folk who haven’t survived the most treatable of cancers. He hadn’t had his 60th birthday. Isn’t prostate cancer supposed to be for old men?

I risk saying goodbye with a rant. Prostate cancer has changed my life and I never had my own personal, in-my-body prostate. I used to have one that I claimed as part and parcel of a man I love more than life itself. It was mine as much as his heart is mine. Cancer and a skillful surgeon relieved us of that burden. They also relieved us of coitus, a secure sense of our sexual being, and sure knowledge that there would always be time to get to the bathroom.

But Dan Fogalburg lost the battle this week and we are still up to fight another day. The PSA tests keep coming back negative and some days it even seems like the Big Guy understands that an erection is not my measure of the man. Maybe the depression will lift and stay lifted for more than a day at a time. But one of the brothers in the war has fallen.

It’s hard to say goodbye. I don’t know if the quality of Dan’s life these last few years was better, worse, or about the same as ours. I find myself hoping that he beat the odds on impotence and incontenence. If ya gotta die, well, it just seems mean to have to endure the peculiar indignities of prostate cancer as well.

So, bye Dan. Loved your tunes.

Side effects of cancer

I haven’t talked about cancer in awhile. I have kinda/sorta hinted about being entirely too free with entirely too much personal information, but we are all grown ups here, right?  If you’re not a grown up, please leave now.

The Big Guy has been doing pretty well in the tuned in department. He has lapsed a time or two and I have acted pretty well in character. He never cusses. I do. I wonder if Colleen would condsider “Don’t be a son of a bitch” telling the truth with love. It seemed appropriate at the time. I have issues with boundaries.

So, the nether regions were itchy and uncomfortable. Having experienced the joy of yeast invasions and various bacterial discomforts of only the mildest STD variety, I hied me to the crotch doc.  These things seldom resolve on their own. I am fairly protective of the nether regions. There is good news and there is bad news. The good news is there is no infection of any variety. The bad news is that the vagina atrophies with disuse.

Great muscle tone and vaginal atrophy combined to propel the speculum halfway across the room. Gotta love those Kegels…You are not supposed to spit medical instruments across the room with your coochie. It isn’t ladylike and it certainly isn’t mature. Maybe next month it will be damned funny…not yet.

In case anyone wondered, my vaginal atrophy is a direct result of prostate cancer. Yeah, I know, I don’t have a prostate—he doesn’t have one any more either. Score another one for the big C. The things the urologist forgets to tell men about. geez! Nobody mentioned it to me either.

So in a world where Viagra and Cialis commercials interrupt dinner, what is a woman—particularly a woman who thinks sex is a game played best if not only in pairs—to do with a shrunken va-gee-gee? I can tell you a few things she is not doing with it.

Now neither of us has working parts. He still isn’t talking about his and he doesn’t really want to hear about mine. I am pissed. I am angry. I am outraged. And there is nobody with whom it is appropriate to share my pain.  He has his own, thank you. I am not through existing as a sexual being.

Yeah, I can hear the “EWWWW” from here. Deal with it. Read something else. Cancer sucks.

Who is this Man?

Somebody brought the Big Guy back when I wasn’t looking. My sweetie is back on the planet. Maybe it’s as simple as less than a month until a major vacation. Maybe it’s for good–or at least a good long time. I am not going to analyze too closely. I am just busy loving having him home.

There haven’t been any revelations on the southern front. I have been getting big bear hugs in the kitchen again. The quiet, when it is quiet, doen’t seem lonely at all and it doesn’t sound as deafening as it has all these months. Now, quiet just feels peaceful. There had been a tension to silence that felt like the few seconds before the JAWS! theme started to play when you knew that something pretty gnarly was up close and personal.

The House Elf has a definite positive influence on my sense of well being. I love coming in and not tripping over my own crap. Of course, I have had to keep it picked up–but even that is easier from a starting point that is not somewhere behind the eight ball. I am not sure whether it is a chaotic house that depresses me or depression that makes my house chaotic. I am inordinately pleased with clean window sills.

Books and Their Covers

The old adage says, “Don’t judge a book by its cover.” I am drawn to books with beautiful covers. Depending on the phase of the moon, a beautiful cover might be old worn leather or a damsel in distress being swept away by some iconic hero. Yeah, I read bodice rippers, too.

This afternoon, while talking with Colleen, I got to take a look at my cover through her eyes. There are not many places where staight talk is the order of the day. The shrink’s office should be one, but in many instances it is a lot more listening with little feedback. The feedback has given me an opportunity to examine the advertisement I put on the dust cover. We all know that the real cover doesn’t show itself until the paper one is accidentally shredded or intentionally discarded.

It seems that through my reportage, I come off as strong: a force with which to be reckoned, a no nonsense, self-reliant, get-out-of-my-way kind of gal. I think I may make a story better or harsher in the retelling. 

Disclaimer here: This reporting is run through my interpretation and personal filter of the discussion. Some of the things I heard, I am sure were not said. Sometimes, with the demons in my head, I cannot tell the difference between what is said and what I hear. That is often unfortunate when what I hear is tangential to what is said.

I don’t mind being seen as strong. I think ’strong’ is a bit of an overstatement. I think I just try really hard and I don’t cut myself much slack. I am much more generous with people around me. I don’t feel tough.

I don’t feel like much I do is noteworthy–it’s just what I do. I see myself as adequate in a lot of areas. I lay tile pretty well. I build pretty cool cabinets but Norm Abrams has nothing to fear from me. I cook and people come back for seconds but anyone who can follow directions can cook. I sew–I like it. Making dresses for little girls makes me laugh. I knit–it keeps my hands busy. I love needlework but my hands shake so badly that holding a needle and finding the threads to count is more frustration than joy these days. I have samplers I may never finish. I sling words well enough to be paid for it.

The paper cover is much more inticing than the binding underneath. The truth is the things I do don’t impress me. They are just things I do.

What does all this have to do with what people see when they pick up the book that is me? Apparently, they don’t see the fear. Apparently, the desire to run hide in the closet instead of confront is trumped by the need to seem capable. People often seem surprised at all the things I do well. That’s nothing; I am surprised that I do anything well. I don’t cut myself much slack. I feel shy. I know I don’t look it. I tell the truth because I cannot keep lies straght.

In the session today, I fought with hearing the internal translation rather than the observations offered. My demon was saying, “no one likes you,” while Colleen was saying that the demon needs to be evicted. She was noticing that I hear the criticism more clearly than I hear the confirmation. I expect to be hit more often than I expect to be caressed. That may mean that the protective cover mis-represents the content. I am thinking on that. She also said that I am more willing to be rejected than embraced and that I see rejection when it isn’t there.

When you look inside yourself it’s introspection. What is it when you look at the persona you project and ask if the cover fits the book?

Elfin Magic

I haven’t been home yet. The House Elf and her minions are there. It is 4 pm. They were supposed to arrive at 11. I don’t know if they were punctual or approximate elves. I am just SO excited that they are there.

Didn’t ask about the clothes thing either. The Big Guy probably would have mentioned starker elves—if he noticed. I think he has not stuck his head out the door. He and the dog are locked in the office waiting for the all clear to sound.Last week I was all atwitter with anticipation.

The disappointment of no wafting lavender is still rattling in my nose. It’s much like expecting mint and biting into wasabi. The wasabi is a shock when you know it’s horseradish. When you expect mint, well, you’ve been there.

This week, I am not so up. I won’t have so far to fall. But there are elves, working elves, attacking my house. I love elves.

When talking about my adventures in psychology, The Bug Guy declared he had not changed—it’s all me. Yeah, but he showed up Friday with two dozen red roses. Then he showed up on Sunday with two dozen orangey/yellow roses. I can count on the fingers of one hand the number of times he has bought cut flowers under his own power. He has paid for them often when I threw them into the basket, but any female knows that isn’t the same thing at all.

He hasn’t changed a bit. Not at all. Uh-huh. Yeah, right.