A Week in Hell

There have been 3 weeks of hell in this process so far. This past week has been one of them.

hell doors

8/1/17

There have been 3 weeks of hell in this process so far. This past week has been one of them.

The first one was the week of frantic driving to the Mayo Clinic, three days of invasive tests to receive Michael’s devastating diagnosis, the reality and shock only beginning to settle in as we drive home through the most terrifying storm, the most Biblical storm, I’ve ever driven in. On the way, our Iowa City doctor calls to tell us that Michael has ventricular tachycardia and he must stop driving “Now!” because he could die at any minute. I slip into the driver’s seat with no ability to assimilate this latest information as we drive through the horror of this night. We have to stop three times on the way home because sheets of rain are so dense that they cover the windshield obscuring vision that only lightning illuminates. The terrifying weather resonates perfectly with my inner terror – the shock of lightning, the horror of thunder and blinding rain, the bleak dark landscape with nothing but empty blackness ahead. This was a week from hell.

The second week was when Michael was near death in the hospital after his transplant with a white blood count of almost zero, not eating or drinking, with diarrhea and diapers, and only able to grunt and moan in communication. He literally doesn’t remember this week which is burned into me like liquid iron. This was a week from hell.

And then there’s this past week…. It started on Friday with Michael’s 5th bone marrow aspiration. It’s a horrible procedure to watch but it’s the kind of horror that I simply cannot turn away from. Sometimes I wish I was the kind of person who turns away, but I’m not. When horror presents itself, I feel I’m there to witness it. The aspiration literally involves having a large needle screwed into the hip bone so that the marrow can be extracted. It’s one of the ways the doctors keep track of what is really going on with Michael’s body and it happens every 3 months.

Luckily Michael is on morphine during these procedures and says they don’t bother him at all. I, on the other hand, am not on morphine though I can definitely see the appeal. It’s one of those squeamish procedures in which one sees bone being breached by a large, long needle, the needle literally thunking into the midst of the bone. Then the marrow, a bit thicker and darker than blood, is extracted and examined. It always makes me a little bit sick, nauseous really, but I am duty-bound to be there, to observe it, to undergo it with him.

We come home and Michael sleeps it off while I steady my stomach with some food, a walk and yoga. As I’m walking I think, “Darby is coming tomorrow!” and it makes me happy.

My son Darby has said that as an early birthday present he will visit and help me clean the basement. Michael is not allowed to be around dust and molds and of course, the basement is full of them, so Darby’s offer of assistance is necessary for any kind of movement in the vehement cacophony of basement trash.

The Basement! Like many basements, it’s become the repository for all the things we don’t want to deal with, don’t want to see. And it’s really bothering me. I know there are things in the basement that need to be cleared, need to be encountered, need to be revealed.

It’s been piled with boxes of stuff since we moved into this house almost 3 years ago. There’s a large pile of old area rugs. There are boxes of taxes, foodstuffs, lamps, bookcases, kitchenware, paint, art supplies, camping equipment, and luggage. There are Christmas decorations, mementos of my children’s childhoods, and record albums and CDs we haven’t listened to in years. There are old chests, old artwork, and really old photographs and written records tied up in boxes. The list goes on and on.

Darby and I work like dogs, or at least that’s how I feel — hard, physical labor. Up and down the basement stairs a hundred times carrying every heavy and awkward thing imaginable. Loaded car trips to Crowded Closet, the Crisis Center, and the recycling center begin to make a dent in the chaos.

Finally we come to the 40-year old painted wooden toy chest. I open the lid and find the box Michael has been looking for! It’s all his childhood stuff, family stuff, his baby pictures, his report cards, his school photos, him in his college Corps uniform, pictures of his son from babyhood and childhood. It’s his memory box. As soon as I move the box a cloud of black dust rises into my face. I look down inside the edge of the chest and there is black watery mold all along it. There’s a moment of horror as Darby and I both realize — this is black mold!

We look at each other and immediately know that all of the chest’s contents are contaminated and have to be destroyed. All of Michael’s mementos are full of death. I tell Michael and he goes and sits in his study. I think that this is hard for him but we don’t talk about it yet.

Darby and I put on masks and gloves and get the handcart that will allow us to move this ailing behemoth of a chest. The whole bottom of it is covered with the mold. It’s almost falling apart and it feels like it weighs a ton. We carefully walk it onto the cart. Darby pulls it up the stairs one awful heaving step at a time while Michael, who is now also gloved and masked, and I push the thing up from below to keep it from toppling. We finally get it to the curb with a huge sigh of relief and the sense of having dodged some sort of odd worldly bullet.

Michael goes into the house and Darby and I get into the car to head for Crowded Closet. “Well that was certainly an obvious metaphor,” he says. “Yes,” I agree. “Could it have been any more obvious?” We’re both laughing somewhat hysterically. “I mean, what did God want to say here?” Darby booms. “I mean, I’m not sure what the message was, God, so maybe you want to make it clearer!”

“Yeah, it’s not entirely clear, is it?” I laugh. “Hmm. Michael’s memory box is full of death! You think? Maybe Michael is supposed to let go of his memories….” Darby and I riff on this for awhile but we’re both pretty impressed. Metaphors this intense don’t come along every day.

We spend the next day and a half finishing the huge and filthy task of cleaning this basement, this unconscious mind that Michael and I have created, this part of ourselves that we haven’t been wanting to see. It feels Herculean, the cleaning of the Augean stables. Eventually, it is done. It’s been difficult but is entirely satisfying to my Virgo’s need for order and beauty.

Monday dawns well. I receive a lovely email from Darby’s wife and Michael gets the news that for the first time since we started this journey of illness a year ago, his bad numbers are finally coming down, moving toward the normal range. It’s phenomenal! Joyful! Hopeful! He goes to his chemotherapy appointment with more positive energy than either of us has felt in months.

Then a phone call from radiology arises. I’ve had an unusual mammogram. There are two spots that need to be looked at again. How soon can I come in? Tomorrow? Great. So as if any of us needed another reminder of Impermanence, there it is. A bad mammogram, a test that can mean so many things.

I have another mammogram and an ultrasound the next day. One of the spots is a cyst, the other one isn’t so easy to classify. The doctor says I can wait and watch it for a few months or I can have a breast biopsy. Of course I choose the biopsy. I can’t imagine walking around for several months wondering if I have breast cancer but this decision has many consequences – the largest being the emotional toll it will take on me and the people who love me.

I text Michael and my sons with the news on the way home. When I come in the door Darby says, “Want to hear something really weird? I just got a call saying that Dad got taken to the hospital in an ambulance! He’s having heart problems. There’s some kind of bizarre déjà vu going on here!” And it is bizarre.

Eighteen years ago on the very day that I was diagnosed with kidney cancer, my children’s father was told that he would need a quadruple heart bypass. Both of us ended up in the hospital at the same time, both of us with life-threatening conditions, both of us seriously ill.

It turns out that while my ex-husband was on the Great Bike Ride Across Iowa in the desperate heat of late July, he had become dehydrated. His heart went into atrial fibrillation, a fluttery and chaotic heart rhythm, and soon an ambulance is carrying him to a hospital in Mason City. We’re all a bit shaken and we wait uneasily for more news. Luckily, his heart recovers quickly and he ends his bike ride to come home.

Darby sees his Dad the next morning for breakfast and then I take Darby to the airport to go back to LA. I shed a few tears as he leaves but only a few. I’m not sure what is happening in my emotional field but I’m not reacting in ways I thought I would.

That afternoon we have our first appointment with Michael’s new doctor. He seems friendly and busy and he delivers news we haven’t heard before. Apparently the hope was that Michael’s numbers would be in the normal range long before this, and they’ve never even gotten close until now. The doctor sees the progress of his current chemotherapy regimen and he tells us that once Michael is at a normal level, he will have another year of chemo to endure.

Another year! I am floored. My heart sinks and there’s a heaviness in my chest that is almost unbearable. We’d been told at the outset that there would be a year of chemo after the transplant. We had accepted that and had been expecting we would be done with these poisons in the next 2-3 months. Now we’re looking at 14-15 more months. I feel like I can’t take this in. It’s simply too much.

When we arrive home we hear from Michael’s sister that his mother is in the ER after she became dizzy and nauseous and then fainted. Later she is admitted to the hospital for observation of her heart. We are more than a thousand miles away and all we can do is wait to hear what’s going on. Michael is completely worn out while I continue to be in an odd state of detachment.

I know I’m going through a lot – the bone marrow aspiration, the breast exams and the upcoming biopsy, the basement cleaning, the black mold, the additional year of chemotherapy, the heart problems of my ex-husband and my mother-in-law, my son coming and going. It’s all too much! And yet, still I don’t cry, I can’t cry, and I’m not sure why.

That evening Michael is so tired he’s in bed by 7pm while I watch some mindless thing on TV, just trying to find a break from all the chaos. I go upstairs and look in on him to find that he is barely awake. He reaches for me and I go to him, hugging and kissing him, and for a moment I bury my face in his neck.

It’s Michael’s smell! It’s the smell that I’ve known for 34 years. And now 34 years of memories come tumbling through me, moment after moment of this smell, this smell that I’d almost forgotten, that I hadn’t smelled in these last 12 months, this deep animal comfort, this home.

I leave the room, leave him to sleep, and find that at last, this smell has brought me to my knees. At last I am crying. It’s all been too much, all of it, all of these last 12 months, all of this suffering, all of this fear and worry, all of the heartache. I cry and cry.

I go to the breast biopsy alone. Others have offered to be with me but I’ve decided to face it alone and I’m not sure why. My blood pressure turns out to be the highest it’s been in years which isn’t that surprising, though I am surprised. I’d been feeling calm, feeling I could face whatever might come. And now I see that my body is really nervous. I send it messages of love and understanding. I tell my breasts they are fine.

The procedure isn’t as bad as it could be. There’s a lot of numbing beforehand, and the doctor says that the “vacuum” biopsy will be over relatively quickly. It hurts deeply for a brief time and the nurse tells me I’m being “so strong.” I wonder if she says this to everyone, but it doesn’t matter. It makes me realize that in spite of the fact that I feel like I’m ready to fall apart, that just one more nudge would put me over the edge, I’m doing ok. I’m hanging on. I go into a meditative state, and the biopsy is over. Seven days of hell ends with this.

Today we hear that the biopsy is benign! We also hear that Michael’s mother won’t be able to visit this week because of the medical problems she is having. When I hear this news I realize that this is the Way of the World. Perhaps it’s been a condensed version of it in this week of hell, but this is how it works. There are ups and there are downs, there are gains and losses, and sometimes the ups last for days or weeks or even years, and sometimes the downs do too.

And no matter what, it’s all about learning to find that sacred space in-between. It is the space that recognizes it’s all grist for the mill, that every moment, every event, is here to teach us to grow our souls ever more consciously, ever more kindly, with ever more love. It’s all here to wake us up. Bless it all. It’s all a gift, a kismet, a mystery, all unfolding exactly as it’s supposed to.

Staying Strong

Beatrice

December 29, 2016

“Stay strong!” These are the last words my son says to me as he and his wife board their plane back to LA after their holiday visit with us.

“Stay strong,” and of course he is right but immediately the questions arise. Others have also used this phrase with me. It’s so easy to say, such a short and concise edict for behavior in the face of…. what? My husband’s illness and debilitation? The obvious loss of the life we once knew? The sometimes overwhelming physical, emotional, and mental tasks that this involves?

What does it really mean to stay strong? My husband is sick, really sick, and in chemotherapy for the next 10 months or longer. I have watched the effects of the last four months of hospitalization, a stem cell transplant, and massive doses of poison, and I think, what does being “strong” look like now?

Does being strong mean that you don’t cry? If that’s what it means, I’m failing miserably. I’ve cried and cried, usually just a few tears but sometimes by myself, I wail. I mean that literally – I wail! I wail with grief and stress and sadness and frustration and pain. And there’s really no way that I could do this otherwise. So I don’t believe that staying strong means not crying. In fact, just the opposite. If I wasn’t crying, I’d be going insane. I’d be suppressing very real emotions that must be expressed, that must find the light of truth, that must be loved and accepted for what they are – the simple and complicated sorrow of a loved one’s mortal illness.

My son is not comfortable with my tears and I don’t blame him. I mean, who really wants to see their mother cry? And I wonder if all the people who exhort me to stay strong are also uncomfortable with tears. Or is this exhortation something else?

I’ve been struck over and over by the “happy face” that people put on in the chemotherapy unit. It’s upbeat in a bizarre and shallow way. Can this be what is meant by staying strong?

People chat about little things, unimportant things – what they got for their birthday, what happened on their drive to the hospital, what their daughter said to their mother, the TV show they watched last night. So much talk about the inconsequential and the mundane. It is this happy talk that is the most disconcerting to both of us because it feels like a denial of the harsh reality we are facing.

Clearly it would be worse if everyone came into this unit complaining and focusing on the negative forces that surround us here. But surely this happy talk isn’t what is meant by staying strong.

Every now and then someone talks about the effects of the drugs they are ingesting, about how hard it is to sleep or eat, about how weak they feel. But this is said with a laugh and a smile, and is immediately countered with more laughter and a happily resigned statement of acceptance. “Oh well, it will be fine.”

Sometimes the chemotherapy effects are talked about with obvious depression and hopelessness. This is harder and is met with silence or negation. “It will get better. You’ll see. Just hang in there.” In either instance, the underlying message doesn’t get acknowledged. It’s just too hard for most of us to hear! We don’t know what to say in the face of this pain and suffering and so we slip into deflection and denial. We tell the sick person how good they are looking and we focus on the latest medical discoveries or the next holiday or who is coming to visit soon. We certainly don’t talk about dying.

Meanwhile, Michael and I sit in our chemo cubicle in relative silence. We meditate or read books or listen to podcasts. Anything to distract us from the reality of the poison that is entering Michael’s body. But really, is what we are doing any better than what these other people are doing? It’s different, yes, but we’re all just trying to get through something that is simply awful.

As I think about it, staying strong must mean continuing to face into the truth of what is happening to me, to my husband, to us. We’ve lost so much already and of course we are looking at the possibility of losing more. Clearly, things will never be the same again and our old life is gone.

But that’s true for all of us. Every moment of every day things are changing and our old lives are gone. Not all of us are facing into the truth of mortal illness, but all of us have our own truths to face. Certainly that must be part of what it means to stay strong – to face into all of the hard truths as deeply and clearly as possible, the hard truths of all of our feelings, all of our thoughts — and to face them with courage and love.

Michael made a card for me for Christmas around the theme of Dante and Beatrice saying that I am his Beatrice, journeying with him to Paradise. It ends with a quote: “Do not be afraid; Our fate cannot be taken from us; It is a gift!” And perhaps this is the strongest place for any of us to stand — squarely facing our fate and realizing over and over that it is a blessing and truly, it is a gift.