A challenge of sorts

If Mogo’s mom can write 1000 words about things she loves, maybe I can too.

 

I love my not-so-furry big guy. I love the way he smiles with his whole face—eyes first. I love when he smiles at me. I love that he smiles at me often, even when I am not looking. I love that he is not in pain, although his life is sneaking away.

 

I love puppy breath and the smell of warm puppy bodies, just nursed and round with mother’s milk. I love the little eyes that droop and close in the flash of a thought. I love baby breath and the gassy, faintly cheesy belch that comes with careful pounding on a tiny back. I love the smell of baby hair—angels smell just like that, I am sure. I love the way infant fingers, and even more, infant toes look like tiny, fleshy sausages jammed into the hands and feet. I love the way the little feet curl at a touch and the bow-legged, knees-out pose of sleeping legs.

I love the moment when the little mind lets go and sleep wins another battle of wills. I love the weight of a sleeping child against my chest, the hypnotic cadence of breath and sigh, and knowing that the world could end in that moment and it would be just fine.

 

I love baking cookies. I love the challenge of making the dough just sweet enough and pulling the hot sheets from the oven at just the right moment—when the cookies are crisp outside and chewy in the middle. I love putting flavors together to please the people I love. I love each new favorite cookie of the year and adding it to the book.

 

I love feeding people. From the beginning of the preparation until the last dish is back on the shelf, I love the act of nurturing and nourishing. I love the memory of suckling babies at my breast and how cooking for me is an extension of that most personal form of feeding.

 

I love the hours of the night when most of the world is asleep. I love the silence of a sleeping city and stretches of highway with not a car in sight. I love the stars shining in a black satin sky and the excitement of a renegade bit of cosmic dust flashing across the darkness.

 

I love the pounding of a hard, hot shower and the smell of girlie soap and scrub. I love the near-orgasmic pleasure of water pounding in my ear and the guilty realities of handheld sprayers and pressure adjustments.

 

I love jeans that zip without coaxing or coercion yet still cling to every curve. I love a tucked-in shirt and a leather belt. I love a bra with sense enough to support without poking, pinching, or making a nuisance of itself. I love long sweeping skirts and the crinkly swish of crinolines on silk.

 

I love the rabbits nibbling skittishly on the dew-wet grass. I love the twitch of their ears and the speed of their escape when they catch my scent on the breeze.

 

I love shifting smoothly from second to third and again from third to fourth with wind in my hair and the sun on my face. I love waving at the other sports car drivers and feeling like Mario Andretti zooming down the freeway. I love the way my stomach lurches when dropping down the hill on Ash Street toward the bay. I love to drive with no particular destination in mind and know where I was headed as soon as I arrive.

 

I love phone calls with no agenda, dinner invitations for no reason at all, and real letters in the mailbox. I love open armed greetings that melt into hugs that squeeze the tension from my soul. I love being touched and held and feeling understood.

 

I love to flirt with babies and men young enough to be my sons. I love to have them all flirt back. I love the wide-mouth smile of a toddler who knows I am listening just to her. I love being a gramma and a woman and still a little girl.

 

I love the children my children were and the adults they have become. I love that they trust me with their girls and that their spouses love me too. I love my grandgirls, shrieks and all. I love watching them learn and interact and change their environment to suit their personal needs or whims. I love watching their thoughts develop on their faces and predicting the newest brainstorm I love the power of their differences and the continuity of their similarities. I love that they are such good friends. I love the words they have brought to life—lasterday, lellow, and lowshee in particular. I love that daddy cut baby Charlotte’s electrical cord—the one that was plugged into her belly button. I love the minty kisses of freshly brushed teeth and the chocolaty kisses that speak to ill-gotten treasure from forbidden candy dishes.

 

I love the smell of coffee freshly ground and more so, freshly brewed. I love bread baking in the oven and the steam that rises from a just-cut loaf. I love the puddles butter makes as it goes from solid to liquid to undistinguishable, melting into the still-hot slice.

 

I love to turn a flat piece of fabric into clothing. I love to pull needle through linen and leave a mark on history just as women have done for centuries. I love the continuity of doing something so basic as sewing and so artful as embroidery and knowing all the while they are really the same thing.

 

I love to climb into a big soft bed and pull down comforters up to my chin. I love it even more when the bed is shared with the not-so-furry big guy. I love that the thought of losing him makes me cry. I love that he is here now and that he has been my champion and friend for forty years. I love that he has nurtured my children through all their foolishness and that he shares the secrets of the ages with the grandgirls. I love that he explains the glass ceiling to two-year olds and shows them how to kick a soccer ball. I love that my touch is the only one he desires and that it has always been so. I love that he loves me as much as I love him.

 

There, you have it 1,074 words about things I love. I may have to read this twice a day for awhile. It helps with the gratitude thing. We really have had a very good run.

We Gather Together

It is Thanksgiving again. I am struggling with the whole attitutde of gratitude thing. I have a few thousand things for which I am purely and trulygrateful. My Big Guy loves me and has unconditionally for more than 40 years. We have been joyfully married for at least 20 of the last 25 years. Tge five that were not so hot came as a result of learning to live with the fallout from prostate cancer. But we learned. I have fabulous children. I have magnificent grandgirls. i am not hungry or cold. I have wonderful caring friends. And  the love of my life has terrible irreconcilable cancer. There is an unseen expiration date tattooed on his genetic code and I  know it is relatively soon.

I know what I should do. I know I am supposed to feel all kinds of grateful , stoical, altruistic emotions–none of which I can even put a name to. I know I am supposed to be strong and I don’t even know what that means right now. I am making meals. I am making beds. I am making myself get up and go to work. I am not making plans more than a day or two in advance–and most of those involve doctor visits, hospice workers, and my daily appointment to cry into a grande soy latte at the local Starbuck$.

How do you know when you have slipped over the edge of really sad into really sick? What does an emotional meltdown look like? Why is there still a morning? Why is the sky still blue? How dare it.

Which Stage is it Today?

Some very clever people have written about the seven stages of grief. I seem to trill through them like an arpeggio across the piano keys. so what stage is this?

My mind keeps turning resentfully to the trip to Hawaii we won’t make, the dancing lessons we won’t take, the drive up route 66 that stays on the map, the trek through the Cinque Terre that I will do alone. I keep thinking of the honey-do list that he has not even nodded at in nine years and this mornings’ trip–alone– to put down the third sick dog in our marriage. I think of the carpet that needs to be replaced in the office and bedroom and that the computer network is so complex I have no idea how to dismantle it and reconnect it.

What stage of grief is “really pissed off and feeling sorry for myself?”

Fighting Fair

We are fighting cancer. Cancer has the muscle and smart money behind it. We have chemicals and radiation–but only to slow down the clock. Half of us has a willingness to believe that God can change all things. The other half is battling cancer more passively–from a prone position in a snuggly bed. He is meeting his standing order to eat every two hours by fasting until noon. He is meeting his admonission to exercise by sleeping until 11:30. He is upholding his committment to talk by saying absolutely nothing. And when he has recouped from the radiation therapy, we will begin another round of chemo–he thinks.

What he doesn’t consider is that the doctors who are refereeing this fight won’t let an unfit contestant enter chemo again. If he doesn’t eat and is not strong enough, they will vote “No.” If he doesn’t exercise and have enough muscle mass, they will vote “No.” What he really doesn’t understand is that this is a fight. In a fight you have to stand up. You have to move. You have to take an active part in your treatment. You have to come out swinging. You cannot win if you quit before the game begins and you cannot convince me you will beat the clock flat on your back.

Dorothy, this isn’t Kansas

The Hospice nurse is named Dorothy. She is gentle and soft spoken. Every Kaiser nurse I’ve met seems to be from the Phillipines. That is not a judgement, just an observation.

There were sheaves of papers to sign and questions to answer. This is a pretty stark reality. How will I know He needs a walker? How will I know to request a wheelchair? Do I have to order a hospital bed? Do they come queen size? This is so much worse than packing for a business trip. Where do I move the furniture while the hospital bed fills up the bedroom? Do I rent a cot for me or flee to the other room? I am so not ready for this.

The cancer is advanced. The secret the doctors would not tell rolls hesitantly from Dorothy’s lips. When found so late, the end is apt to come much quicker. Uh huh. I thought so.

In an act of defiance, he went to VA to get his hearing aids replaced. That is a positive attitude. He who will NOT wear them went to get new hearing aids. He will decide to wear or not as is his whim. Life is full of its little ironies. With a cellar full of stellar bordeaux, he opened this year’s cabernet. I guess he plans to be around to drink the good stuff later. I like his plan but I cannot see beyond the wizard behind the curtain. I don’t see the waiting balloon. As often as I click my heels, I can’t believe this is Kansas. I am not sure there is a Kansas.

Chemo Interruptus

Necessary caveat: This blog is entirely, unashamedly self serving. I don’t care whether it has an audience or not. Yes it is a narcissistic exercize. It is also a very real exorcism of demons I have no idea what else to do with.

His chemo therapy began on Friday. He got all the way through the necessary hydration, the taxotere, another round of hydration, and half way through the cisplatin when the oncologist sent for me. The CT of his brain on Thursday had just been read. The dictation was not even trancribed yet. I got to listen to the vioce of an unseen radiologist decribe two brain lesions. One about 5 CM in diameter resides in his cerebellum; the other–well my ears quit hearing about then. I haven’t a clue where the second lesion is.

They stopped chemo therapy awaiting the decision of yet another doctor–this one a radiology oncologist. The Onc from the dark side has sprouted a little more compassion. He wanted to admit my big guy right then. I said no. I will take better care of him than anyone in the hospital. “What if he falls?” My response, “He hasn’t fallen yet and if he does I’ll pick him up.” Then the onc went on to discuss doing this and doing that. I stopped him and reminded him that the big guy is alive, cogent, and perhaps it makes more sense to ask him what his preference might be. Then I went back to the chemo suite to explain to Himself that chemo was over for today in deference to a brain tumor or two. I climbed into the chemo recliner with him and was still crying into his good shoulder when the onc manned up enough to answer questions. There were not so many this time. This time the answers were as good as the questions–that isn’t saying much.

Taxotere is the drug that will make his hair fall out. He got the complete dose of that one. I wonder if the beard will go too. Next week we can turn off the night light and see if he glows in the dark.

PICC a Line

This is a week of learning. We have learned that every time you think there is no deeper pain, you can well find out you were wrong–again. I have learned to clear a PICC line. It involves syringes, sanitation, and saline. I have learned that a PICC line goes into a body a lot farther than I thought. I have learned that sometimes no matter how hard I try the tears still come in great flashfloods of emotion.

And I am angry. I am angry that I TOLD him to see the doctor about the reflux six tears ago. I am angry because I TOLD him that hypertension drugs can cause ED and he blew off my request that he talk to is physician. I am angry because I TOLD him to get his PSA checked when he was 50 and he waited until he was 58. I am angry because he never participated in the activities that might have helped him recover some erectile function after the prostatectomy. I am angry because he has cancer again and this time he is dying and I don’t want to be alone.

He is dying already and the chemo doesn’t start until tomorrow. He went to bed the day the doctor said ‘cancer’ again. He only gets up to go to another appointment or when I shag his ass out of bed. Nothing is going to kill him this week or next–except maybe me.

He says he is fighting this thing.  Instead he is curled in the fetal position, unbathed, uncombed, and uncommunicative.  The doctor said it is imperative that he eat and the only time he eats is when I nag him into it. I have a very different idea of entering the frey, I think assault more often than retreat.

I let myself become one of those ’sign here’ women. I go to work–he plays golf–he pays the bills and when he says “sign here” I sign here. Taxes, loan aps, refund checks–I sign here. I know how stupid that really is. It means I have no idea what my bills are. I have no idea what the passwords to the online accounts are. Yesterday, it seemed like a reasonable division of labor. This week I am kicking myself. We have time to transfer the knowledge. If I get the miracle I am praying for, maybe the knowledge transfer will just be an exercise and a reminder. But I cannot get him to come to the computer and share the knowledge I will need for the months ahead when he may be too sick from chemo to deal with the bills–or too sick from cancer to think about them–or too dead to do anything.

I am afraid of losig my wonderful love. He is a treasure beyond all treasures and the best friend I have ever had. I am afraid of life without him. I am afraid of not knowing how to decide what strategy will help me recover from the country’s economic downturn as I look toward my retirement. I am afraid that I have no plans for my retirement now that the prospect does not seem to include my travel partner and chief instigator. I am afraid of sleeping alone. I am afraid of being alone. And I am afraid of being around other people without my knight nearby. I am afraid of turning ito the 5th wheel–the demanding single woman of a certain age whom people invite to dinner and struggle to find a suitable male to balance the table. I am afraid to find out that everyone loves him as much as I do and that I am accepted only for being a continuation of him.

I am angry. I am afraid, I am sad beyond words. I am going to be his primary caregiver and I don’t know how. I am going to be his advocate and I want to hide in a corner and pretend that this chapter never began. This job, these next few months or years, whatever is written in the book, is a job I get only one shot at doing well. When it is all over only one person will know that I have done my damndest to get it right. And unfortunately I am often the most critical judge of my performance.

I can clear a PICC line. I can wash my hands, evacuate the air from the saline syringe and count to 15 as I sanitize the port. I can do the step-by-step things–the ones with directions on the heel, But how do I stay a loving helper and at the same time point out that hiding in bed saps strength rather than buiding it? How can I endorse him just stopping life before life stops? I can clear a PICC line. Tomorrow they show me how to use a syringe with a needle in it. Payback may be hell.

The Rollercoaster Leaves the Loading Dock

Today marks the beginning of cancer reprise week 3. Three weeks ago we were healthy, we were looking forward to an anniversary and an anniversary trip. We were laughing at how noisy three little girls can be and how precious a new baby is. Two weeks ago, we were holding our breath. Surely the mass is just a shadow. There is an easy explanation–an easy fix–there has to be. We were holding that very deep breath. Last week, we flinched every day. Every return call from a doctor or lab brought another wave of pain. Each call was a new level of Hell. We hit a new bottom four out of seven days.

Three weeks ago he was healthy. He played soccer twice that week. He played 18 holes of golf. He put off his honey-do list again. Weight Watchers celebrated the 30 pounds he had lost. Three weeks seems a lifetime ago. Today, he has cancer–advanced, inoperable, hideous, I’m-so-sorry cancer.

As part of my work on me, I have been learning mindfull meditation. Learning may be too strong a claim. I have been practicing staying in the moment–living in the now–living with intention. It has helped me get out of my head and into a more healthy mindset. Today, I don’t want to stay in this moment. I want to stay in any of a thousand moments that passed 3 weeks ago.

I want to get off this rollercoaster. The pull up the first big hill is frightening. I am scared. I don’t trust the bar that the attendant pulled down over my lap. The peak is in view and it looks to drop off into nothing against a tauntingly blue sky. I am scared. What must he be feeling? What demons are screaming inside his head? Did the bar even click against his now-flat middle? Is there track on the other side of this rise?

Once again into the frey

I stopped blogging. Everything was going well. I had climbed out of my celebacy induced pity party and accepted that the man I love loves me just as much. Our lives changed with a radical prostatectomy but our love was about more than sex, The love was still alive–if changed.

Do you remember the old saw–Cheer up things could be worse. So I cheered up and, sure enough, things got worse? I am going to be very careful how I cheer up or down for a very long time.

In the months since I stopped blogging, I went into a profound and self destructive depression. I forced myself back into therapy and I worked. I listened. I complied. I put the behavior back into cognitive behavioral therapy. It was painful. I am not sure sometimes that the things I learned are real but I am just as sure that the dark thoughts they replace are not based on any objective observation of the world. Depression is a hideous monster. Rather than feed it with my thoughts, I went to therapy. I enforced a 48 hour work week–a compromise against the 60 plus I had been putting in. I stopped missing my meds. I Stopped playing doctor with my meds. I helped make myself well. Cheer up. It’s coming.

The past few months have been a treasure. I have been sane. I have been here. I have worked something approaching normal hours (sometimes to the consternation of some of my co-workers). Life has been good. Hold that thought.

Beth had her new daughter. Yes, there was drama. There is always drama. Beth’s blood presssure went erratic and Beth’s sanity went a little erratic too. The longer Charlotte was enutero the more convinced Beth became that she was the biggest hazard to the baby’s health. Charlotte was delivered a month early–partially because of pre eclampsia and partially because of prenatal psychosis (not an actual diagnosis; just a description). I am more than thrilled to announce that Beth, Charlotte, and Morrigan are wonderful and thriving. Cheer up?

Two weeks ago both the big guy and I had routine physicals, We were healthy–a little overweight–but fit. and then… the big guy went in for a routine med check. He had lost 30 pounds–he was going to weight watchers with me– and was feeling a little light headed. His blood pressure was staying pretty low and his hypertension drugs needed to be adjusted to compensate for the weight loss. By the way, he was having a little trouble swallowing.

Now we have been through an upper GI Series, an endoscopy, a CT scan, and MRI, an endoscopic sonagram, and we have seen two gastroenterologists, a surgeon, and an oncologist. Every time we spoke to a new doctor the news got worse. The esophageal cancer is stage IV-B, metasticized to his liver and the treatment options are hospice or palliative chemotherapy. Mean survival with no treatment is 6 months–12 with aggressive chemo. Cheer up.

We will be married 25 years this January. We booked a 2 weeek cruise to Hawaii–I have never been. We did not buy travel insurance. There didn’t seem to be a reason to do so. It doesn’t look like we will see Hawaii.

Instead, I am trying to figure out whether it makes more sense to go to work or take family leave, whether working from home is even a reasonable aim, and how in hell I am going to live without this fabulous man. The question on the table is not if, just when. This morning he is spitting up blood and his eyes are yellow tinged. I cheered up. Things got worse.