Little Steps

I’m taking small steps to your temple door
I’m waking slowly amidst this dull roar
I am facing the future and all that it holds
I am waiting for you, now my love
I am waiting for you, now my love
One star above me and two stars ahead
One moon to guide me alone I am lead
Like a child of the fire who will walk on the coals
I am waiting for you now my love
I am waiting for you now my love
Little, little, little steps
Little, little, little steps darling
Little, little steps
Little, steps now my love

Merrie Amsterburg
Little Steps

Again, it comes....the fear, the difficulty of this mess. We had to go back to the cancer center today so that Art could get more fluids in his system. The lack of fluids a side effect from sleeping for the last 3 days. As we leave the car, Art stands and can't move, needing to acclimate himself after a 30 minute drive. He is unable to move and stands, one hand on the car door to steady himself, one hand on the passenger head rest. I see he cannot let go of either, afraid he will fall. The tears come from him. And I approach him to hold my tall crumbling husband. The tears are frustration at being so sick and anger at his inability to shake the chemo. They come from this morning, when he, for the first time, viewed and took in his body and saw the loss of muscle, of fitness, of himself looking back at him. "I worked so hard to have a fit body and it's all gone," he cried. "It's so hard, it's so hard, it's so hard," he sobbed. They come from his inability to work on our marriage.

How do I comfort that? How do I say "it's Ok" when many things in our life are not OK? How do I keep the anguish out of my voice? And the guilt. The quilt of being so beyond angry this morning that I swore after this was over, so was our marriage. This disease amplifies all the flaws in our union. I see now, how partnerships fall apart after a devastating event. My love is mixed with resentment. It can be hard to separate them. I can only work towards keeping us together, and many days I am wiped out with nothing to give, nothing to fight with.

Little steps. Little steps. I take little steps. He takes little steps. With guts and courage, we will end up at each other’s temple door.

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4:37 PM

Pallas is home. Langston is swimming. Ezra has not arrived yet. Art got home an hour ago, where I delivered the news about our good friend's child. He cried and then when we began to talk about it, he fell asleep.

I miss him so much right now. And I don't know what to do for dinner tonight. I am frozen in fucking madness of this life. I hate it! I hate every single part of it, every piece of it. I hate everything that this disease has taken away from me! I hate that I haven't laughed with him. I hate that he can't focus, or think or grieve with me. I hate the lonliness that NO ONE ELSE can *@($&# fill! And above all else, I hate the fact that I can't make a stupid (*#&@* decision about dinner! I just wish my kids could survive without me, cause then I'd curl up next to the body of my husband and fall asleep. I don't want to face another minute of this *@(&$#(@) ass day.

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Death

My friend's baby died yesterday. And in this moment, waiting for Art to come home, I just don't want to do life anymore. It's all too painful. I don't know how anyone survives this shit.

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The Smell

The chemo has taken hold of Art. He slept for the better part of the day. He went to Cedar Sinai for fluid and anti emetics (no vomiting drugs). He slept when he got there, slept for the 4 1/2 hours he was there. He came home and slept. Got up and ate and then went back to sleep. As I write now, he is sleeping. I wonder how long he will sleep. Will it end tomorrow or the next? Without his hair, which we completely shaved the other night, and his weight loss, he looks like...a cancer patient. That’s what he is for now, so how appropriate for him to look the part. But there's the smell. His body omits an order that is combination him and chemicals. It's neither pleasant nor unpleasant, but it is delusional. He sounds like and looks like, kind of, my husband. But he smells entirely different. The smell hinders my ability to connect with him. When you comfort a child that is not yours, the way they smell when you hold them, the way their bodies feel so foreign next to yours, you just know the child does not belong to you. He smells like he doesn’t belong to me.


We got home from Cedar Sinai last night, where he was administered five different chemo as well as had a bone marrow biopsy and a spinal tap. After we got home, I found him in the kitchen, standing over food he had taken from the refrigerator. Just standing over it, his brain unable to make a decision about what even to open. As I approached him, he turned to look at me and with this simple phrase "I can't seem to figure out what to eat," the baton was passed. It was quick and effortless for both of us. We know what to do.

I did three things for myself today. All of them made me cry. I met with a spiritual counselor, and I cried for an hour, opening up and letting Spirit in. I met with a friend for lunch and cried after he left, mad at myself for closing down. I had an incredible moving massage by a man whose hands released so much of this tribulation that I cried during most of that, too. In the spa, I cried in the whirlpool, in the quiet room and in the steam room. I cried while I got dressed. I cried when I stopped at Jo Ann Fabrics to get elastic. I cried while I sang in the car. I was sure that once I blew through that self-protecting wall I would not be able to stop crying. I don't care if I cry forever. Today was the closest I've felt to whole.

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Fatigue

I've been fighting it since his diagnosis. Fighting it hard. Needed to be up, on it, ready to move since the day after August 24. It's not till today, today when Art started his chemo regimen, that I notice how tired I am. I walked around the quiet house with things in my hand. Picking up things that needed to be put away and instead they ended up in my hands traveling from room to room. Sometimes they would rest on the kitchen counter, other times on our bed. But then I'd pick them up again, determined to "do" something with them, place them in their proper place. The pile is now on my desk, next to me as I write this.

Fatigue is a funny thing. It has no symptoms really. It's not like I'm bruised or have stitches. I think I look fine. Only my brain is not working well. I can't focus and I forget everything. I take three times as long to accomplish a task and quite honestly, I am not so sure on days like today that I should even be driving. Right now, having a fairy god mother to wave her wand and say "I release you from guilt. Be restful," would be a real cool thing.

The best I can do right now is to sink into the calmness of this exhaustion and relish it. This is the place where I let go. The major crisis is over. We are on a path and there is no getting off. And that is a good thing. From here on in, like I wrote last night, it's about the majestic man I married and my inner strength. That is a good thing and I am thankful for it.

So tomorrow after the kids doctor's appointments and Art's bone marrow biopsy I will relax. No... really.

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Wrapped Tight

Today, I got up and wrapped myself tightly, in saran wrap, aluminum foil and then added a gallon size zip lock just in case I started to leak. It was that or cry all day.

I am not hopeless. I know we will make it through this mess. I am not sad. I am thankful, so very, very thankful for all that we do have. I don't even feel that overwhelmed. So many things have been taken care of.

My sister-in-law pointed out that I am greiving. She is right. I grieve for all that we have lost. I grieve for what has happened to Art, his hair loss, his weight loss and his self loss. I grieve for the effect that he has on friends who have not seen him for a while. I grieve for what this disease has changed in us. I grieve for the kids whose experiences will most likely not come out until they are sitting in a therapists office years from now. I grieve for the life that was supposed to be right here, right now. I grieve for loss of our patnership, frienship, lovership that has changed forever, most likely for the better but I still grieve. I grieve for the friends I have lost over this disease. I grieve for the immense pressure I feel to take care of myself, so I can take care of him. So today, instead of admiting grief, I walked around angry. It was easier.

Add to that the fear I have...and this case is not False Evidence Appearing Real, an acronym for fear. This is real. By the end of the week, Art will be sick with chemo. My weapons against this disease are my intense love and respect for this man, and my own inner strength. This week, I change. This week I mediate and hold visions of him, whole, in my mind. This week I work out, taking care of my body and my mind. This week I meet with a spiritual friend who can help me break through this wall and touch the power of Spirit. This week I have a cup of tea a day and sit and do nothing (Thank you Sue). And in every one of those moments I will take off the foil, the saran wrap and the ziplock and let the tears flow, cause fuck it, I only have me and Art to meet on other side, and I know we will look much, much better when we get there.

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The Order of Things

When your husband comes down with cancer, here is the way to cure it.

First, go crazy. This is an important first step. You will need to establish a high stress, emotionally difficult line beyond which very few things can go. Once that is established you can compare "now" with "then." The "now" will inevitably look better and make you feel calmer.

Second, establish a schedule. You will need help in doing this. The doctors will be kind enought to determine the chemo schedule. You will need to keep track of it. Have a team of very special friends (and one sister) organize your life by setting up a meal delivers, child pick up and drop offs. Find friends to paint your room, do grocery shopping and call/email on a regular basis to check in. Establish a normal routine. The routine will look nothing like your old routine but the important thing is it will be a routine. Your spport team will most likely make you write down the following: an "average" day with the kids, school schedules with directions, how and what to pack to lunch, etc. They will buy you a huge calendar that becomes the "bible" of the house so you don't forget anything. They will also gently ask about your will and make sure you have it updated. Your PDA will become irrelevant.

Third, get pissed off at somebody that is not the lymphoma patient. It can be friends who have suddenly "disappeared" not emailing or calling to say they are thinking of you or just the slow driver who does not know the kind of pressure you are under. It's important for you to take it personally, becuase darn it, your husband has cancer.

Fourth, have a conversation with a sister-in-law where you realize that you are honestly mad that after all the work, the stress, the hysterics as well as the tears your husband has not been VOILA! cured. Order demands results. The result desired is total cure. Start to cry and understand for the umpteenth time, in what will be a line of a thousand and a thousand upmteenths, how sad, scared and tired you are. And how very much you want more than anything else in the world for this to be over. Obviously, these steps don't work. Crap.

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Grace

We are all interconnected. This disease does not just affect us and our family. It’s this stone in a pond thing. Many of our friends/family have and continue to put their lives on hold just to come out and help. This means they need someone to watch their kids, keep the pets, do the work while they are gone.

I got to thank one of those helping people the other day. She was watching the Hastings three children while Peter and Renee came to help us. I told her how she was not just helping me and our kids, but helping Art heal, emotionally. Her response was “I am the daughter of a single mother. So many people helped her and us growing up. This is my way of thanking them.” Grace.

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Fat Lady Ain't Singing Yet

I told myself a lie. Yesterday, it caught up with me. Yesterday Art had a round of chemo. (The doctor didn't want to wait three weeks to begin again). A friend picked him up and at 8:15, Pallas was picked up and then I drove the boys to school.

I got home. The house was empty. It was silent. It was still. Completely caught off guard, the tears came. I was not really sure what I was crying about. Sadness? Yes. Emptiness. Yes. Lonliness. Yes. Gratitude for the daily offers of help? Most definitiely. But none of those reasons stuck. Anger came, thick and gooey like peanut butter. I cried harder. How could I believe that I could 'organize' this disease and all it's emotional ramifications away. How could I honestly try? Good grief, what control issues I have! I cried harder. I thought, in some stupid way, that if I took care of business, doctors, drugs, help, food, painting our bedroom...all of it, it would make it all better and the fear and anxiety would have no reason to rise. It would all be under control. How fuckin' stupid! How so damn stupid!

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Hair Loss

Art's hair has started falling out. We both cried. He said he wants to cut it off with the help of the kids tonight. We enter a new phase.

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Excitement

Art had a bad day today. He got a PET Scan. Anyone who has had one knows what that means. 6 hours of no food, then having yet another IV inserted (apparently the tech wasn't very good so she stuck Art twice before she got in reinforcements). Then he was made to drink two "hard to keep down" concoctions. Concoctions that make visiable the big and little tumors infesting his body. The techs, of course, have to wait till the puckink is absorbed, about another hour. My dear husband then spent 45 minutes in a tube with his arms over his head. His arms fell asleep. He appeared again at the front door at 6:30 pm looking almost post chemo dark circles beginning to form, movements slow and purposeful.

After dinner, we talked, for a few mintues about the future, the "after cancer" life he will have. For the first time, I am excited. I am excited for how this experience will change him. I am excited to see what it is that he does not put up with anymore and what it is he decides to go after with gusto. We laughed and smiled at each other, guessing at what he would accomplish with his new thirst for truly living. For the first time in almost four weeks, I feel hope and it feels so very, very wonderful.

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Fear

I was in the shower this morning...crying, one of my usual spots to let go. In the moment when the hot water is running over my head and down my back I saw how afraid I am.

I'm afraid Art will die. I'm afraid of people's reactions when I say that. I'm afraid my requests will not get met becuase so how we/I are/am not worthy. I'm afraid I will gain weight (I have series issues around this). I'm afraid we will loose friends. I'm afraid of other people's issues around Art's illness. I'm afraid of so much.

Fear is one of those things you cannot tell someone they shouldn't have. And there in lies the problem. It is an internal battle. Left unchecked it rules my life. If I can let the hot water run down my back and turn up the volume on the other voice. The voice that rejoices in who Art and I are, what we have made together, and the friends that surround us, then just maybe, maybe I can take a step away from the fear. I will do that.

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Help Wanted

The hardest part of this process is 1. figuring out what help we need, and 2. finding somone to ask for help. So many people have said we could call for anything, and I believe them. But I also what one person will not like to do, another will do it happily.

Art and I are fortunate to have sooooooo many people to support us on this journey. I honestly don't think we have enough things to do for all the people. However here is a list of things that will help us in the next 4 - 5 months.

1. paint our bedroom so it is healing place for Art. (We are doing it on Tuesday, Sept. 19th)
2. fix and re-upholster a chair so Art can move from bed to chair on his bad chemo days
3. have our house keeper come every week instead of every other week.
4. help me buy and sew curtains for our livingroom whose windows and none-insulated roof make it only just bearable when we are all healthy.
5. A space heater for Art. He has lost 16 lbs. It will be a cold winter for him.
6. a weekly grocery shopper. Whole Foods, Costco, Santa Monica Co-op. A friend of mine will be organizing this, so I will pass names onto her.
7. An extra freezer for meal storage, preferrably borrowed.
8. Here's the biggy. On Art's really bad chemo days I think I will need someone to just be here -- help me with the kids, with Art, and helping me to manage my stress level. The last chemo event was frightening but I suspect much of it was due to inexperience. Cancer free friends have said yes, and no to that comment. Honestly I don't know what to expect. We will have family in town for the first two treatments so I will more of an idea after that.

That is all. I go to bed tonight, next to the man I married. I am so happy to have him back, no matter how short a time it will be for.

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In Between

He is in between. Today, Art is at that place where he feels he can do some of the old stuff he used to do. He made breakfast for us this morning. He wanted to drive his sister and brother-in-law to the airport. He caressed my neck and face, something I haven’t felt since the beginning of August. His color is that of the “Maine and midwest stock” of which he is bred. The deep sea blue of his eyes are clear, no longer rimmed with dark circles or filled with dull red. If it wasn’t for the great weight loss he has experienced, I would forgot that there are cells in him, attacking. It looks and feels like our fight against lymphoma is over. It is a blessed grace period. He is overjoyed to feel functional again. 'Carpe diem' was lived by him today. He is inbetween the hell that was and the hell that will be.

I remain emotionally distant from him. My role as care taker still fresh and forward, my role as wife is somewhere inside. When I feel the wife emerging, I think of a tsunami. Wife will sweep in and weep and moan and scream and be aghast at all that has happened to her beloved. Wife will crumble, refusing to eat, unable to function. Wife knows the inside-out fear and will always be afraid until the words “one year, two year, five year” and “cancer free” are spoken. I am afraid she will wash away all the things the caretaker has put into place; duty, composure, organization and bravery.

So I too am in between, trying to keep wife at bay while simultaneously giving caretaker a break. I am not sure I can do both.

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They're Out Here

They're out there. Everywhere. You can't see them, you can't hear them but they are there. They try to infect us. Most of the time we resist them. Heck, we aren't even aware of them or how our body defends against them. I'm talking about.....germs, bacteria and fungus.

Until Art's white blood cell count went way below normal (0.8 Normal range is 4 - 13), the only time I paid attention to germs was in public restrooms and when Langston finished using the bathroom. With Art's white blood cell count way below normal, my fear of germs has reached an unprecedented level. It, they, the little idiots can kill him, becuase lymphoma isn't enough?

Here is the list of things I have read about and been told to watch out for by the doctor:

1. Fruit. Bananas, oranges, pinapples etc. OK becuase of their thick skin. All others if even slightly punctured could harvest bacteria AND fungus that can, in his unprepared body, make him very sick.
2. Vegatables. Raw cucumber Ok. Thick skin and can be peeled. Raw anything else. Bad.
3. Crowds, of any size, leave me in a heightened state of panic. Someone coughed in the elevator we were riding in and it was all I could do not to punch the 'emergency stop' button.
4. House plants, flowers go outside. They harbor funguses.
5. Kissing? A resounding no!
6. Kids. I have worked out a warning system. Green- come on in and smother your father with kisses. Yellow - you need to wash your hands before you touch daddy. Red - strip your cloths off, shower, Purell your body and you may approach within a 10 feet as long as a sniffle or cough has not left your face in the last 24 hours. I will post the colors on the front door.

All these things I fend off and away from Art, daily for three days or so. Two times every month after every chemo treatment. I want to put him in a plastic bubble every time his count drops. It would make me feel better.

In reflection, (his white count was at 8 today!) I see there are only a few places to rest in this disease. They present themselves at odd, unexpected moments, like the other day. Sometimes, I don't even recognize them.

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Acceptance

Thoughts from last night

"God grant me the serenity to accept the things I cannot change." Alcoholic Anonymous

I am beginning to realize, understand, accept that our life as "normal" has changed. I need to use all the help I can to get through this. The American way of independance, of toughness is too hard and...lonely and isolating. Kids are covered, meals are WAY covered. I am starting to think about other plans. I need to work again. I need someone to be here, with us, at night while Art is dealing with the worst of the chemo. I need help with the kids in the morning for I am not the mother that Good Housekeeping thinks we all are. It's strange to use the word need, instead of want. But these are truly needs and I am finding the serenity to accept them. My ego is shrinking...I am ready to call Uncle.

Pallas lost a tooth today and the tooth fairy forgot to visit. Even the friggin' tooth fairy is a casualty of Art's cancer.

Thoughts on today
He is back. Art, my partner-in-life, my husband was back today! He was clear, strong and funny. He made himself his own snack even AND helped with the kids this evening. I have not seen this man. He disappeared on Tuesday, August 29th when I took him to the ER.

We had such a wonderful day. Many friends dropped in for a visit. We spent time hangin' with Art's sister and her husband. We talked and planned and joked. It's so good to have him back. I don't care that he will leave again, into the chemo induced fog. It was so pleasing to have him here and present today. We'll be OK. We will be OK.

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Life Threatening

Back at Cedars today. (Cedar Sinai Cancer Center is where Art will be treated.) One blood test later, we discover that Art's white cell count is dangerously low. I may have to give him Nuprigen (sp) shots while we are at home. Nuprigen stimulates white blood cell growth.

Art has lost 16 pounds since August 28.

Words today, lots and lots of words. "Did your HMO do....?" Usually followed by a "No." Nuprigen, CHOP, Retuxan, life threateniong, CHOP 14, Epigen, Adriamysn, ANC #, life threatening, intrathecal, decodron, antiamedics, chemo starts Sept. 25, life threatening, no travel at Christmas, life threatening, stem cell transplantation, bacteria, germs, protein, shakes, doses 3x week, transfusion, newlasta, radiation, life threatening, shaking, not above 100.5, day 6.

I wanted him to stop saying life threatening. Every time he said it, it took 30 minutes of sleep away from me. Couldn't he have used "really bad" or "not so well?" How about "life threatening" only once? It feels like every tiny little germ is out to get Art and my big clumsy hands are ill equipped to protect him. By the time I left, I was vowing to stay awake to make sure Art kept breathing!

On another note....chemo dates have been set. September 25, five days on. One week off, then five days on. They will do intrathecal as well as regular chemo -- meaning they will inject chemo into his spine to make sure that any wily cancer guys are not in the spine waiting to emerge later after chemo is done. Last round will be week of Dec. 4th. I typed that date earlier tonight in a different email and started to cry. December 4th -- it's so far away. How on earth are we going to get there from here?

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Our Life

I just want our old life back. It's that simple. I want it back.

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Home Again, Home Again

Art is back home again. He looks and feels much better than he did last time. I have a head cold and Art's blood count is dropping, making him more suseptable to infections. The problem with this journey is that at every turn there seems to be something that can hurt him, always leading to the threat of death.

My new task is to get a sample of the tumor from the pathology lab at St. Johns and have it sent or carry it to the lab at Cedars. Our oncologists wants his pathology person to look at it. There is still a question as to if this is b-cell, or t-cell lymphoma.

Too tired to write any more. I'm just glad that he and I will get to sleep together in the same bed. There will be no coughing, no tubes and hopefully no fevers to get in the way of touching him. Tomorrow morning, just before I am fully awake I will have forgotten how sick he is. For a split second I will think everything is normal. I look forward to that moment.

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Chemo

We were discharged on Thursday, I wish we hadn't been.

After I got Art home, Art slept and slept and slept. He woke up to greet each kid and then would fall asleep. The kids tried to talk to him and he'd fall asleep mid-sentence. It wasn't till after dinner that I notice his eyes. Have you ever seen photos of the nazi war camp survivors? He started to look more and more like those photos. His eyes were suken, rimmed in deep blue black. The 15 pounds he has lost made him look tiny frail and underfed. He had to psych himself up to just use the bathroom. I had to "prepare" the bedroom before he got into bed, turn down the covers, get his pillows in the right position. He was too weak to do it himself. Chemo was doing it's job.

Then he slept. It was a restless night and then at 11 o'clock the fevers started. 101, 103.5, 105. The nasea started and culminated with vomiting. That was at 4 am. I call the American Cancer Center in a panic. "Is this normal?" I called the doctor. She said take him to the hospital. My mother and knew we couldn't get him to the car, and I couldn't call the ambulance. It seemed, I don't know, just wrong. Something in me said leave him be. When I woke him at 8, his fever was 101. It took me, Langston and my friend Olivia to get him to the car and then we were back, in less than 24 hours, to the hospital. That is where I write from now.

Chemo is the scariest thing I have ever witnessed.

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