Eye Shadow

I’m sitting here at the cancer center with Art. It’s almost 10:00 pm. He’s been here since 5:30 am. It’s been a rough day. He started with a headache last night. It continued and increased in intensity through the day (and through 4 Vicadin plus a Vicadin patch). On a scale of one to ten, he’s been a nine for the last 5 hours. Then he started running a fever. No one knows where the fever is from. The headache, they feel, is from the double doses of Nuprigen, the drug they gave him to increase his white blood cell count. With the fever not yet in check, the other pain medicine (can’t remember the name) is finally taking effect. He’s able to form a sentence beyond a one syllable grunt.

I ran out to get something from the pharmacy and found myself in the make-up aisle. I rarely wear make up, not able to rationalize spending the time in the morning to apply it. Tonight however, I walked past the hair dyes looking for just the right color. I picked up the eye shadows and eye pencils searching. I found lip liners, lip gloss and lib balm, none of which I need. I walked to the counter with a $75 of cheap make-up I would most likely never wear. I gave it all back save for an eye shadow and a toothbrush.

The worry and hovering are familiar. I am up to the old avoidance tricks. This time my distraction of choice was make-up. Hmm, make-up can make me -- not me. In my desperation, the make-up or the wine or whatever the ‘obsession of the moment’ is almost frees me from this experience. Underneath our mutual anxiety and Art’s own frustration with the way his body is reacting, the fear is mounting. There are fewer and fewer places to escape from this disease. Well, at least if I am going to face it, I’ll look cute with my new Maybeline Brown Pearl Eye Shadow.

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Mild to Moderate Improvement

Monday night, after Art’s scans that morning, Dr. Wolin informed Art that his tumors had shown mild to moderate improvement! Art called me as I waited for our bags at the baggage claim. He was crying. I remember not being sure if I should be excited or disappointed that is was only a ‘mild to moderate’ change. Langston was watching me. I was smiling as “'Oh, honey's! That’s great, right? Oh baby's” were the only words I could say. "Fake it till you make it" was all I could think. I was frightened at how frightened Art had been and how I didn’t see it till now. Ezra and Pallas were fighting. Then Ezra was at my waist crying. There were passengers waiting for their bags, conversations. There was a woman next to me, crying, dealing with her own tragedy. Another child came to join Pallas in play. I hung up.

The kids and I spent the weekend in Washington, DC while my sister-in-law, Barbara, stayed with Art. My grandmother turned 100th on Sunday, January 28thbirthday. She sang “I am a hundred years young” as if she were a vaudeville star. It made us all marvel. I am thankful for the distraction.

The skinny…after talking to Dr. Wolin yesterday, we are thrilled that Art has improved! When the tests were taken, it had only been 12 days since the big chemo round. The chemo drugs had just begun to eat up the cancer. The fact that there was any improvement at all is a very good sign. If they did more tests next week, I am sure the results would be moderate to significant improvement. It’s all good.

Today, Wednesday, Art is on his second day of stem cell collection. They hook him up to a machine that cycles some of his blood through it, collecting the white blood cells (which are really red – go figure) and then returning the rest to him. They then spin the white cells and separate out the stem cells, collect and freeze them. Yesterday he gave them 1.3 million. The goal is 5 million.

Our future will look something like this…..I think. Monday, Rituxan or as we call it the happy chemo drug. It barely makes him sick and attacks only the cancer cells. Tuesday – Thursday, high dose chemo, Friday – Monday fluids and anti nausea drugs, and then Tuesday, infusion of stem cells. We will be at the center all day, every day. We will have our very own nurse for the high dose chemo procedure, instead of sharing one with 3 -4 patients. If all goes well we will be able to return every night to our apartment. If all does not go well, we will take up residency at the hospital.

The fear from this journey is presenting itself as a wall…one we can get around but is daunting in its ability to block us.

Lastly, a note from Art
Thanks to everyone for the positive energy coming my way! I had another scan on Monday, and it showed "mild to moderate" improvement (shrinkage) in the tumors, which is good considering I had my last dose of chemo just over a week ago. So...the treatment is working, and I'm back on track. I'm starting the stem cell transplant process, which should knock this thing out of me, if all goes according to plan.

The emails have been great, and literally keep me going each day. Thank you again for your support; I can't tell you how much it means!

Art

I ditto the thank you. Without the prayers, sending of love and light, or begging to the deity of your choice, oh and emails and phone calls, this journey would be impossible and cause irreparable damage to us as a family. You all are keeping us sane…a gift so great that we will never be able to repay.

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The Thing

Ok so here's the thing. I'm afraid. I am afraid Art will die. I have been trying so hard to dodge that one thing, that one terrifying thought.

The stem cell transplant will be within the next 10 days. I have no choice but to face that fear, and in it find the grace to love Art with all my might. I am still scared. We both are. And we have no one to hold onto but each other. What a fuckin' ride it's gonna be.

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Ice Cream

If anyone is reading this post, please......I need ice cream. Baskin Robbins -- cookies n'cream OR Hagan Daz vanilla. Please...I am desparate and.....trapped in the house with three children who won't go to sleep. Do not worry, I will not be sharing it with them.

Call me if you read this in the next 30 minutes, please call. 310-664-0640

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That Space

There is this space, every morning somewhere between sleep and awake where peace resides. Nothing from the day before comes in, and the thoughts of today have not yet formed. It feels like floating.

I know this place well. It’s that same space I moved though after my father died and when I was dealing with depression. The space only lasts for a few seconds, too little to count, but long enough recognize and experience. I love that space and I dislike what comes after. The rush of: the cancer cells trying to stay alive in his body, the overwhelming to do list that seems to grow in importance, the needs of the kids, and Art and of myself all fall in, rushing to see who will be the first to fill the whole.

Art experiences the same space. When his space is filled he sighs a sigh of disappointment. And like me, feels the burden of no escape. We look at each other, smile and do what we do best, just show up.

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Yesterday was a hard day for him. He was awake but blurry and restless. He napped, woke up, was uncomfortable, too tired to move, but not needing to sleep. I watched him stare at nothing, like an old man. He raised his head, looked at me and made a “huh” sound with a quiet laugh. That’s what the next 3 – 4 days will be like, each one a bit better than the one before.

As Dory of Finding Nemo said, “Just keep swimming, just keep swimming. Swimming, swimming, swimming” Who knew swimming could be so challenging?

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Sex

Sex. Making love. Whatever you want to call it. We’re not having any. The problem is not that, well...I mean that is the problem but it’s deeper than that. I am not immune to the views of this Puritanical society (America) that regards sex as the only source of intimacy. Intimacy equals sex, sex equals intimacy. I suspect I am not alone in my thoughts. After all, isn’t that why we are up in arms about teenagers having it? Don’t we feel they are too young to experience or understand the levels of closeness? Ah, but I digress.

The dilemma is this. If sex equals intimacy, then how does one go about being intimate if one is not having sex? Furthermore, if sex is a cornerstone of a “good” marriage (I use the term with tongue fully inserted in cheek) then where does that leave Art and I? I mean, we will probably not have sex for another 2 - 3 months. If you add those days with the days of this treatment plus the days before the diagnosis (cause it was a good month that he was not feeling well), the total no-sex days could be over 300!

Let me disclose, it’s not about the physical release part of not having sex. I am good at pleasuring myself. (Oh my!!! Did I just right that? Heavens! ) It’s the other part, the closeness, the understanding, the familiarity of Art’s body and his familiarity of mine that I miss. What exactly is intimacy anyway? How do I go about regaining that, or at least touching on it when we are not fooling around? What does an intimate, non sexual, conversation sound like?

I have become his caregiver of his life, a dictator of sorts, furthering the distance between us. I mean who wants to be intimate with the person who is always asking “Did you take your pills? Are you constipated again?” Those questions have formed a see through wall where we can pretend that we know each other.

Hmmm, when this is done, we will have to date again. I think it’ll be fun. I don’t know. should I go “all the way” on our first date?

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Dr. Wolin

From 2 pm Thursday to 2 pm today, Friday Art received the equivalent of 5 rounds of a chemo drug in 24 hours. To put this in perspective, he got six rounds of the same drug over 4 months. I know, “Holy Cow” (or some more expressive expression) just left your lips, that is if you managed to even close your mouth.

I missed Dr. Wolin’s visit to Art but ran into him at the cafeteria. Dr. Wolin stands all of 5’ 8.” And weighs maybe 155 when wet. He crackles. If you could harness his energy, you could power our small apartment for a week. You will never find him in the cancer center at 8:00 am. We have, however, found him at midnight in the cancer center talking to the IT guy learning a useless (to him) intimate detail about the computer system. He runs the L.A. Marathon every year training only on a bike. It is the only running race he does. In the pocket of his white lab coat, is his “computer”, tri-folded paper placed in an order that only he knows. The stack is at least 4 inches thick. When he needs a phone number or to find the latest report, his fingers run over the vertical pile once, then they stop and he pulls out the paper he needs. He rarely pulls the wrong one. He is a smiling, welcoming, “happy to see you” kind of guy who is incapable of hiding the truth. When we met with him Tuesday, the worry was clear and present on his face. I was relieved (and surprised) to see his smiling body today. Dr. Wolin is “thrilled that Art looks so good! I threw a lot of drug at him and he is handling it so well! This is great news, great news!”

And indeed, Art is doing great. Let me make something clear that I didn’t in my last post. Art is not dying. This is a set back, a scary one indeed but he is not on his last leg, or arm or breath.

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Title-less

Last night both Art and I took a little vacation from our lives, played a game of backgammon and did the LA Times Crossword. This morning, we engaged in our new reality. He went off for a round of Rituxan, the nicest chemo drug around as it ONLY attacks the cancer cells. It was like returning to work for him. He greeted nurses, and nurses aids, happy to see them after not being in the Cancer Center since Jan. 5th. Art is devastated, angry and sad. Tonight though, his determination and strength came through. I marvel at his resolve. (I smile too, "Way to go, honey! You get this thing.)

A Chemo for Dummies Guide…sort of

On December 11th, 12th, heck it all blurs together…sometime before Xmas, Art had a PET and CT Scan. The scans showed the cancer had shrunk considerably, verified by he rosy cheeks and increased energy level. But there was this cold. A nagging little bugger that just wouldn't life. On December 18th, Art started a different round of chemo that included nice sounding drugs such as Methatrexate and Ara C, two chemo drugs that are known to penetrate the brain as well as the body. The drugs’ job was to eliminate any lurking cells in the brain, the hardest part of the body to treat. He went into the round under the weather with a slight cough. He came out of the round worse for wear. We spent 7 extra days at the center were he recieved four transfusions, mego doses of antibiotics and pain meds.

On January 10th and 11th, Art was given another set of tests that again, included a PET Scan and CT Scan. The tests were to be used to convince the insurance company that Art was an excellent candidate for a stem cell transplant. Yesterday, at 2:30, we got a call from one of Dr. Wolin’s nurses. And well, we all know when a doctor says he wants to see you today it’s usually not to congratulate you on some health milestone.

At 5:30 we got the crushing news that not only had none of the cancer cells reduced in size, but several had grown. Dope slap to the head. That would explain his night sweats and the nagging cough he’s been experiencing for just under 3 weeks, symptoms from the beginning.

So that leaves us here, Wednesday night. My mother-in-law has agreed to stay with the kids. My mom is on call, willing to fly out when we need her. I am thankful we will not need a nanny. (Thank you to all who have offered your nannies, your homes and yourselves!) I am trying to think of what to pack. Pjs, toothbrushes and Art’s voluminous drug supply are obvious no brainers. I know there is much more to think of, remember, discard, regard and contemplate but in all these months I have learned one thing: I can buy whatever it is we need. I just need to keep myself close to Art.

Starting tomorrow, Art will get two major chemo drugs, Etopocide and Cytoxin. The dosage amounts will be the equivalent of 5 rounds. 5 rounds in 5 days, sounds like some reality tv show. There will be other drugs, of course, to counteract the chemo drugs. Some I will give to him, some the cancer center will administer. At 8:00 pm, we will head to our hospital-sponsored apartment about 15 minute from the hospital via dr.’s orders. We will live in that apartment, traveling to and from the hospital for 10 days, up to possibly 6 weeks. Now you may be saying, isn’t it better if Art is at home? And the answer is yes; however, when you are a chemo patient who lives in Venice and you are receiving high dose chemo that will drop your white blood cell count down to almost zero and you start to run a fever and you call the ambulance because something is wrong and the ambulance takes you to St. Johns, a hospital that has no record of your treatment and well, you get the idea. Same scenario but in the apartment, the ambulance will take us to Cedars-Sinai where his 4” thick file can be quickly located as well as the doctors who know him. That is the reason for the apartment.

If all goes well, this round will shrink the tumors, Art will have another PET Scan at 6:15 a.m. on January 29th. With luck and prayers, drugs and doctor’s wisdom, the tumors will again be shrinking and that afternoon, Art will be able to start the process of collecting his own stem cells for his stem cell transplant. Our hope is that on Feb. 12, Art will begin receiving his last round of high dose chemo (we'll be professionals by then), to be followed by his stem cell transplant (paid for by the insurance company, fingers crossed) on February 20th.

That leaves us with a simple plan -- to laugh often and hard and to surround ourselves with love. Funny movie recommendation and good jokes (dirty ones acceptable) will be honored. Emails and cards read and held onto. We will get past, through, over and around this no matter what the next day holds ‘cause ya know? It’s just a day.


Requested Update on The Kids

They are well...kids. Acting out one minute, always wondering what’s going to happen to them and then next on to quarreling over who gets the blue blanket or play Darth Vader. Lately they have been requesting that I sing to them after I say good night. It’s something I used to do when they were younger. As a mother, looking for signs of anything I am tempted to read into that. I choose not to and enjoy the moment.

Langston is the most scared. He asks questions, “What is a stem cell? Why do the drugs make daddy so sick?” A month ago he stated “Mom, we didn’t like it when you left us at Lisa’s. We understand that you had to do it, but we didn’t like it.” When Art was hospitalized in August, the kids spent three days with our friends Lisa and Dennis. As he is a boy of 9, I was heartened by his ability to risk expressing his feelings and to understand the situation. Pallas states how much she hates it when daddy is sick ‘cause he can’t read to her. Ezra was the only one of the three who cried last night when we told them about the tumors. When asked what they miss the most when Daddy is sick, the response was “Oh, nothing. It’s nice ‘cause he doesn’t yell at us.” Followed by "Ya, he yells too much," is the back up chorus often heard. Then we all laugh.

They act out, stomp and storm and in the middle of the angst I back away remembering that sometimes it's their way of dealing. (Don't know where they got that from!) As long as the days remain relatively the same, they seem to cope well. (I wonder am I doing them a service or diservice? Nothing is permenant but impermance.) Either way, this disease has highlighted what many believe -- children come through us, and are not of us. Sometimes we can we step back and enjoy them (in their loudness, roughness, smellinesss) and wonder at the ways they have choosen to cope with this. For that I am grateful. Their ability to live in the moment is a lesson I hope to draw on more frequently.

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X-Rated

The fucking, stupid ass, fucking, fucker cancer is BACK. BACK! Growing in MY husband! Fuck you, cancer! Fuck you, fuck you, fuck you!

When the word's fell out of Dr. Wolin's mouth, Art's anger made the room hot. I wanted to vomit. For the first time since the diagnosis, back in August, I feel like....this just isn't fair.

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Helping Hands

The drugs Art has to take during this round of chemo.

1. anti fungal

2. sulfa drug

3. a drug that eats up the remaining chemo in his sytem because if the chemo remains in his system for more than 24 hours it does bad things.

4. pain free pee drug (urinary tract infection sufferers no what I'm talking about!)

5. anti something. I can't even remember now. All I know is he needs to take it daily.

6. drops because one of the drugs makes his eye lids irratable and if he doesn't do it every six hours, his eyes will puff up shut.

7. Art suffers from numbness in his fingers and toes, a side effect of one of the chemo drugs. It's been a problem since November but hit all new highs the last round in December. He has trouble tying shoes, undoing knots and in general can't tell if things are cold or hot. This drug counter acts that.

8. heck if I know. There is no need for me to know today, so I have put it out of my mind. Ask me on Friday and I will be able to name every drug, the dosage amount AND what it's for. My brain currently operates on a "need to know" basis.

Two weeks ago, I purchased one of those pill boxes to keep it all straight. (When I would ask him if he took such-and-such for the second time today, neither of us could remember.) Not the one with one daily compartment, oh no. We have the one with every day of the week AND Morning, Lunch, Dinner and Before Bed slots. Every one of those damn slots is full!

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The Promise Land

OK, so like this whole stem cell thing is approaching….quickly, and rather than think about what I need, I prefer to just have a crisis. They are easier for me to manage (my family history made me an expert) and no real planning is necessary. Unfortunately, I know better.

We are close enough that both of us are now willing to pick up our heads and actually look at the horizon (and how beautiful it is), but then we are tempted to look back and that would be very, very bad. Too much stuff back there. Some ugly, some gifts, and some pain, but at a glance it is too hard to differentiate. I think I will start putting up, with every step forward I take, a sign that reads “No processing allowed.” No processing until we reach “the promised land.” Thank god the promised land is almost touchable.

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...and the horse you road in on too!

I went to a New Year’s Day celebration at my neighbors’ house. There where about 40 people there. We sat down and one by one shared our New Year’s Intentions. These were not about material goals (losing weight, getting a better job). These intentions were about ways to make our lives better (“I intend to spend my time enjoying my spouse, I intend to treat my health respectfully”, etc.) These intentions were positive affirmations for the healing of psyches.

One of my intentions was to understand in my core that I am truly good enough. If I am 140 or 125 lbs, I am good enough. When I offend a friend, make a mistake or find myself yelling, I am still good enough. It was not until I read the comment from “Anonymous” that I realized, I can already cross that one off my list, because I am successful.

Anonymous was offended by a particularly low point I shared. S/he wrote: “See that most of your thoughts about yourself are a narcissistic fantasy that you are investing too much energy in.”

I read it and something peculiar happened. I didn’t feel a thing. I wasn’t angry, or hurt or upset. I was saddened that Anonymous didn’t get the point of the whole blog, a place where I can clear my mind so that I can focus on Art and the kids. (Thank you Mary and Julie for making that clear.) But when one publicly takes pen to paper, misunderstanding are to be expected.

I discovered that I write for myself and for myself only. I write to process ­­my journey. It is my ability to express myself that has given me the courage to sit in the muck or stand in the sun. It’s given me the strength to share with others and, more importantly, the guts to keep moving forward while continuing to grow. Until the moment I read that comment, I had taken that aspect of me for granted.

What Anonymous wrote doesn’t matter to me because…(and I giggle when I write this) I am good enough. I am good enough for me and I have always been good enough for Art. That knowledge brings great delight! I can only hope that Anonymous can find the same power to stand tall in his/her convictions by signing his/her name and engage in a dialogue or if s/he finds it so offensive, just not read the blog.

Huh, another great moment brought to you by the malfunctioning cells in Art’s body! Sometime, I really love this disease!

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