Apparently The Fat Lady Intends To Sing a Whole Different Song

Art’s back in the hospital. The brochoscopy (still love saying that word…bronc COSSSS cooooopy) resulted in unprecedented levels of “pusy” stuff. (Yes once again he is ahead of the curve). They want to start him immediately on intravenous antibiotics. They took a biopsy and will do cultures as well. Results hopefully by Friday. They are thinking infection AND BCNU damage. Interesting combination.

Both Art and I are well, laughing. We parted giggling. The prednisone has made him alive again. Besides, the good news is the cancer is still shrinking (saw the PETScan today) and he is, ya know, alert and annoyed and was shaking his head but not disillusioned or scared. I have been handling the kids by myself since he came home from the hospital so that won’t be a big shift either. In a way, it will be life as the new normal.

So don’t cry for me, Argentina (or America). I don’t feel anything at the moment except that this too shall pass. Given what we have been through, this really is a piece of cake.

BUT --- can we set up play dates for the kids this weekend. Dealing with them all day for two days is DEFINITELY beyond what I can handle! Email or call me...PLEASE!!!!!

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The Fat Lady

“It ain’t over till the fat lady sings.” We go in for a conversation with the doctor and end up in the treatment area for more drugs. I hope she’ll finish this number soon.

These are the words we heard:
CANCER activity still present BUT the little left over nodules are shrinking.

B C N U, B C N U – nope, not a team playing in March Madness. BCNU is one of the drugs they gave Art during the stem cell transplant. And guess what one of the side effects is? Yup, forming scar tissue in the lungs! Hell ya! Rah, rah for BCNU.


BRONCHOSCOPY. It’s such a fun word to say. Bronchoscopy, Bronchoscopy. So what that it means they stick a tube down your nose (or mouth), “through your smaller air passages” into your lungs and take this little brush and twirl it to get a sample of the tissue. Who cares that it will done to Art tomorrow at 2:00 pm (incase you happen to glance at your watch, complaining about your day).

PREDNISONE --- lots and lots of prednisone. Agitation, diabetes, osteoporosis, not able to sleep? What’s important are the mood changes (cause things aren’t dodgy enough around here) and he will start eating!

These are the words I choose to focus on:
So yeah, things have changed again. HOWEVER, those pesky little fuckers are shrinking. He is ALIVE, even if I don’t recognize that it’s him. ONE FUCKING DAY AT A TIME. ONE DAY AT A TIME. One day at a time. One day at a time.

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Miss Him

I miss him. I miss the way he used to stay up until I got home. The conversations we had about pieces in the New Yorker (when we could read it), Chinua Achebe, and Deepak Chopra. I miss discussing the finer points of American Idol and the common giggles we’d share after being defeated by Thursday’s crossword puzzle. I miss the way he’d shoot me that warning look when I rough house with Langston, knowing it would be me that would get hurt. I miss the way he’d hold me tight when I was too wound up to sleep knowing if he held on long enough, I’d calm down and eventually fall asleep. I miss the way he’d kiss me in the morning before he got out of bed for his run and the way he’d wake me so I could get out of bed for mine.

I miss the way he protected me from the kids and the way he insisted I have time away from them, sometimes acting as bouncer. I miss the way he says to any child who is up after they have been put to bed “This is not fair. This is mommy and daddy time and you are now infringing on our special time. You need to go to bed.” I miss the way they would listen. I miss the way he’d hold my hand when we sat on the couch. I miss the way he always drove. I miss the way he strokes my face when I’m upset. I miss being held by him as I soaked his shirt with snot and tears. I miss his interest (admittedly sometimes feigned) in anything I was interested in. I miss his vocabulary.

I’m angry because although he’s here in body, his spirit is gone. I am being teased. The cancer and the drugs and the emotional trauma have replaced Art. The man I happen to love more with every argument, even though Lord knows he pisses me off, is not here and sometimes, I think it is more painful than having him really gone…dead. (Don’t you fuckin’ tell me in that shocked, terrified voice “don’t say that!” That's your issue not mine.) If he were dead, I would only have photos, and smells and the gestures of the kids to remind me of him. I could cry whenever I damn well pleased. I could move through stages and while not forgetting him, the loss would eventually become an ache. Now I have this 182lb. being that doesn’t smell like him, and rarely sounds like him to take care of. My tears distress him so I keep them in check. He is not who he was. I have know idea who he will be.

Every so often I get a glimpse of the one I married, reminding me of what was. Only that makes me miss him more. I can’t even remember what he looked like with hair. That’s why I think it would be easier. I am mourning the loss of a man, of a relationship that was. I am hopeful it will come back but that does not ease the agony (yup, an appropriate word) of losing him. And I’m mad as hell. What I need, want and desire, I can’t have.


P.S. Mom, I’m sorry for doing this to you when I was a teenager. I didn’t realize till now that you missed me too.

P.P.S We go to the doctor today to see why he can’t breath. My feeling is that the disease didn’t kill him but the cure is giving it its best shot. I think there is scaring in his lungs from the high dose chemo. Well, fuck.

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Mad

One year...That’s how long it’ll take. One year from the stem cell date to recover. I am fucking PISSED!!!! I can’t do this for one MORE fucking year. No matter how much easier it gets. I need to it be easy NOW. Today I don’t even think I can do this for one more minute. I did some research online, something I have neither had the inclination or desire to do since this all began. Now I remember why. One year!

Art is on 02 (oxygen). It happened after a visit to the pulmonologist on Friday where we discovered his oxygen saturation level was 86! Eighty-fucking-six! That’s as low as it was when he was admitted to the ER back in August. (High 90’s is normal.) We were delivered a big old oxygen machine and with a 50 foot tubing. Art can go from the bedroom, to the living room and the kitchen without being unhooked. I turned up the 02 today, he is still gets breathless and we'll be damned if we are going to the ER.

Somewhere in the jump from good days to this set back I lost my ability to cope. Too bad to cause it also happens to be Langston’s birthday as well. I did manage to pull it off, but only because I sent the kids packing to friends houses, called another friend sobbing who came and picked me up and drove me to the places I needed to go to get Langston's gifts.

The anger builds in me. I ran outside after these parents road by with helmeted kids but no helmets themselves. It was as if it were my head that were unprotected. I told them that I hope they have a really good life insurance policy plus someone who they know will do just as good a job at raising their kids as they will because when they ride around without helmets that’s what they seem to be saying. My parting words? "Vanity could kill you."

I’m angry at my friends who don’t call or email because it feels like they've forgotten. I’m angry at the kids who seem to have an endless sea of needs. I am angry at my body for not fitting into my clothes. I am angry at Bush and Obama. I am angry at all those people who have that stupid “support our troops stickers” on their car when probably all they have done to support the troops was buy the sticker. I am mad at myself for forgetting to send my monthly care package to a troop. I’m mad at not being able to catch the breath I need in order to get the help I need. I’m mad at Carvel Ice Cream for their “artificially flavored vanilla ice cream.” I’m mad at how sick Art looked when he came the Ezra’s baseball game with his 02 tank. I’m angry at how sick he looks all the fucking time hooked up to that stupid nasal cannula. I’m mad at his cough. I’m angry that I still need help. I’m angry that when help arrives what I really want them to do is live my life. I’m mad that I get answering machines when I need to talk. I’m mad at everyone who is afraid to call because they don’t want to “bug” me. I’m mad at the phrase “This is nothing compared to what you’re going through!” I’m mad that I can’t/won’t cry in front of the kids. I’m mad at the major sacrifices it takes to have children. I’m mad that tomorrow, again we sit and wait for results from a test. I’m mad that tomorrow he will need a wheelchair to reach the cancer center. I’m so fucking pissed off that if I could, I would get on a plane, first class to some place and walk away from all this. I swear I would, and there would be no guilt, no guilt at all until I was rested and found that place where I feel real again.

PS. I am HAPPY that I went to see Alvin Ailey. It was spectacular. Little did I know, that momen when it ended was the pinnacle of the week.

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Alvin Ailey

Wanna go see Alvin Ailey?

Tomorrow night? (Wednesday)

For Free?

I have three tickets. A friend has graciously gave me 4. Another friend will stay with the kids. I am so grateful to both of them for allowing me the time off I need. I'm going to treat myself to dinner and a "show." Please call me if you want to go. The show starts at 8:00 and it's at Pepperdine University.

Oh, don't be like that. The time will fly in the company of a woman who DOES NOT want to talk about cancer! It can be all about you! Really.

310-482-1335!

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At This Moment

A friend of Art’s drove him to Cedars and back today. I have gone no where all morning. I watched a bit of the Secret. I ate only when I was hungry. I did not once berate myself for the messy house, or the pants that no longer fit. I am looking forward to a call from a friend who said for this week she will help me the kids. I talked to someone about hiring their nanny. I successfully pushed the concern about money out of my head. For the moment, I am leaving the routine rigidity of stress behind me. (Thank you Rana for that insight!)

Art sleeps now listening to one of the over TWENTY FIVE cd/songs he received for his birthday. I can hear the music coming from his laptop in our bedroom. It’s warm today and sunny and … hopeful. I am steeped in gratitude for this experience, for the music that puts him at ease, for all of you who read my words, for the support whose breadth is too wide to measure. I am enormously thankfull for Art’s life and for mine.

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Dry Heaving

He was getting sick. Coughed so hard that he got sick. And then kept getting sick, dry heaving for a good 4 minutes. I stood over him, rubbing his back. Langston was up and came in. “Dad, are you getting the kind of sick where you can’t get sick?” he wanted to know. He patiently waited as if Art could separate himself from his body and answer the question. Me taking pride in noticing those “teachable” moments, patiently explained that it’s called “dry heaving.” Langston looked at Art while he heaved as if to etch the term with the action into his brain, then nodded and tried to walk over Art and I to get to the toilet to pee. It was as if to Langston, Art and I were doing nothing more than our evening bedtime ritual. As if his father were not sitting on the bathtub edge expelling his insides into a garbage can due to the raging side effect that plague him from the over 30 days he was gone while they gave his father enough chemo (whatever the hell that meant) to kill him. What Langston seemed to know was that daddy was getting sick in a manner he had never seen and that he needed to pee. And there was no way he (Langston) was walking across the dark front room, into a dark kitchen and even a darker laundry room to reach and use the other bathroom…dad dry heaving or not.

I have no idea what was running though Langston’s mind. It being close to an hour and a half past his bed time, I did not ask. In general though, I try not to read my own anxieties into his experiences. How does an almost 10 year old brain process this stuff? That will most likely be between him and his future therapist.

After I got Art (and Langston) settled and back to bed, my stomach felt like it’s being unpleasantly tickled. It’s dense and disheartened. The desire to leave my skin and thus this fear that rises every time Art suffers acute symptoms like vomiting is undeniable. I envision myself, in the grief, ripping off my clothes, pulling out clumps of my hair and mauling my face with my own hands. The energy from the thought makes my fingers tingle in anticipation of the release. Watching Art get sick, not knowing whether or not to panic is unavoidable. But the process of ticking off the items on the "YES Panic" or "NO Don't Panic" lists leave me feeling like I have been on a rollercoaster ride I did not intend to go on. Has it really only been 3 minutes of heaving or was it 4? Does he look like he’s gonna pass out? When was the last time he took a breath? Can you die from dry heaving? What if he inhales some the stuff into his chest? What will the treatment center tell me if I call? Will I have to call a neighbor to stay with the kids so I can bring him in?

I dry heave too.

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No Title

Art is doing OK. He’s still napping lots (2-3 times a day). He walks the pace of a dawdling 3 year old. He weighs 189lbs, the lowest yet. He has a few hours of relative claritya day and will help with the kids some mornings and sometimes at night too. Yesterday, he made soup for himself (from a can). We don’t talk about the tests that are coming up. Instead we listen for reassuring words from the nurses as they talk to us. “This is normal. You’re doing great. Don’t forget this will take a long, long time to heal from.” We cling to their words like frightened baby monkeys to their mothers.

I was an organized person. My kitchen counter free of clutter (for the most part), food swept from under the table after every meal and never a dish left out over night. With coaching, my kids straightened their rooms and put their reading books away. Now I am a different person. I leave food and dirty dishes strewn on the counter and in the sink every night. The kitchen table resembles miniature mountain ranges only instead of volcanic rock or granite, the mountains are made up of dried bits of tomato sauce, butter or cereal. The kids keep loosing their books dragging out story time as we search through all the junk to find them. I walk from room to room sometimes disgusted with what I see, making mental lists of what needs to get done but in the end, I don’t really care. I feel very little.

The one thing I do feel is this restless-out-of-my-skin-don’t-know-how-to-handle-this-emotional-too-deep-to-let-it-out-anxt. I have tried to bury this yuckiness by first, eating and then later starving myself. I’ve tried getting and maintaining an alcoholic buzz from dinner to bed time every night. I’ve tried sleeping pills. I’ve tried mental games, “fake it till I make it.” I’ve tried gratitude. Maybe I’m not trying hard enough because it’s still present.

I function. I feed the kids. I make play dates for them (all be it last minute). I get Art to the cancer treatment center, ask questions and drive him back. I make him meals. I sleep for a few hours every night. I don’t go out. It’s too hard to arrange for someone to watch the kids. I don’t return calls. I disconnect from my friends (granted disconnecting cannot go under the heading of functioning). Saying “I need help,” is honestly too hard. I am so very, very tired from our lives.

Oh how stupid of me! I thought that in March we’d be getting back to normal. I thought the shadow of this disease would be small and insignificant. I thought once Art was home, it would all be OK. I’m so fucking stupid! I made no plans to cope with this part. No plans at all. I feel insufficiently prepared. And I am. That leaves me wondering in my ability to prepare for anything.

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Slipping

It's great having him home. But he is useless. I can leave the kids longer than I can leave him! I'm starting to get annoyed and pissed off over this whole situation. Gratitude would be easier to find if he could like...make himself lunch.

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A Night To Laugh With Us!

Wes Terry has graciously put together a Comedy for a Cause Night at the Laugh Factory, on Tuesday, March 6th. Both Art and I will be there. Goodness knows we need a good laugh! We hope you can join us and kick off our new cancer free life!

Comedy for a Cause
Tuesday March 6, 2007
8:00pm
Grant Baciocco Michael Rayner
Jonathan Gotsick Sarah Tiana
Curtis J. Fortier Derek Hughes
Rawle Lewis Janine Paquette Hayes
(winner, Nick@Nite online)

COMEDY CREDITS INCLUDE:
Nickelodeon's America's Funniest Mom Contest, Jay Leno, GoTV, The Best Damn Sports
Show Period, The Southern Belles of Comedy Tour, The Magic Castle, Comics On Duty:
Entertaining our troops in Iraq &Afghanistan and David Letterman.

A BENEFIT FOR ART NAGLE'S FIGHT AGAINST CANCER!
Come enjoy some of America's favorite comedians in a night of
laughter and support at the world famous Laugh Factory as we
raise money to help Art continue to kick cancer in the butt!

TELL YOUR FRIENDS!
BRING YOUR FRIENDS! BE A FRIEND!
50% of the door proceeds go to benefit Art Nagle's fight
against cancer. Enjoy a great night of
comedy for a great cause!

To purchase tickets for the March 6th Comedy for a Cause at the Laugh Factory, click the link following link http://www.talbertfamilyfoundation.org/pages/DonateNow.html Use the other box to buy tickets in multiples of $20 per ticket. Indicate in the fund designation if you are buying tickets for Art or Michelene.

Tickets and a receipt will be mailed to you if received prior to Saturday March 3rd. After that date tickets can be picked up at the door. If you have any questions about the online purchase of tickets, contact julie@TalbertFamilyFoundation.org.

Thank you for supporting Comedy for a Cause!
More info: terr386@aol.com
(Acts subject to change without notice)

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Moving Forward?

Saw Dr.Wolin today. He confirmed, in person, what he said last night. As far as he can see, the cancer is gone. No noise makers were present. But he did smile and was again cautiously optimistic. Optimism is a good thing, even in small doses.

It doesn’t seem quite real, Art is still very weak. In my mind, when we finally got the good news, I expected Art to stand up, arms raised, face lifted to the ceiling and shout “Praise the Lord, I am healed!” then turn on his heals and jog out like the man he was in July 2006. Instead, we moved through today in a daze, staring at each other often, listening to the cries of “Wonderful!” and “Fantastic!” from our friends as if we were bystanders. We are trying hard to figure out a way to make this feel real. I'm assuming it will replace the worry little by little.

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Amen to That

In the world of medicine (a.k.a. life) nothing is definitive.

Spoke with Dr. Wolin just minutes ago, after I spoke with Art who sounded unsteady and scared. We cannot tell if the cancer is completely gone. BUT (and this is as big as mine is right now) we do know that his PET/CATScan looks much better (clearer) than it did on December 15th when the doctor declared there is little or no cancer activity. The scans taken today are hard to read because of the stupid pneumonia, can’t see under or through that stuff, ya know. Last months set back has left Art feeling unsure. (Me too, but I'm not talking about it.)

He’s nervous. He wanted to see Dr. Wolin walk in with a party hat on his head and confetti sprouting from his fingers. Instead he got a guy who wasn’t quite sure if he should kiss her on the first date.

There comes a time when you have to just say “Fuck it!” Dr. Wolin is cautiously optimistic. That works for me! Ahem….let me clear my throat. So, fuck it! I, Kim Hamer, am declaring Art Nagle cancer free. From this day forth, my charmed, beloved, gifted, talented and inspiring husband is now cancer free….and will continue to be for the rest of his life. This beast no longer has a hold on him.

FREEEEEEEEE!!!!!!!! Cuase if this cancer ain't gone, it's gonna get hurt. I'm gonna will it out of his body. I'll take my ancestors strength, the ones that came over on a boat, ripped from their land, chained down below deck, isolated, and terrified, ya know, those people? I will take their courage, their will and use all of it to force this motherfucker out of his body. I am done, finished, tired, fed up, and pissed off. PISSED OFF!! I want Art back. I am having my life back. It is time to rebuild, just like the $6 Million Dollar Man. This new life will commence NOW. Cancer you ain’t got nothin’ on my man or on me! (black woman head wag goin’ on) And that is definitive! Damn the pneumonia! I am declaring that we have won. And the universe says 'yes.' And so it is. Amen.

Break out the bottles of champagne, folks and come on by for a visit. We are on the mend.

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LIVE NOW

The novelty of being home is being replaced with the responsibility of Art's care. I care for four people instead of just three. Art sleeps most of the time now, gets up to eat at breakfast and dinner only. We still go to the cancer center every day to have his blood drawn. He gets a bit stronger every 24 hour period, but it's in such small increments it's hard to see progress. (I just reread that paragraph. Listen to me! Good grief, we'ver only been home for 3 24 hour periods! No matter, I want progress, damn it!! How human of me. No matter where we are in this disease, it feel like we've been here foooorrrreeeeevvvvvveeeeeerrrrrr.)

Art will be tested on Monday. The tests will reveal whether or not the cancer has gone. The thought of going through this again is like a tsunami, too overwhelming to comprehend. Art and I wedge ourselves around this pink elephant instead.

Which leads me to repeat Art's new slogan. LIVE NOW (capitals only). I like it. It's like being dope slapped back into true reality (several levels above the human experience). Instead of dwelling in the "what if's," I will LIVE NOW and...head to bed.

Thank you everyone for your support. Loving us is, honestly, the most powerful healing there is.

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Home At Last

Home at last.
Home at last.
Thank God Almighty, we're home at last.

We arrived home today. Don't know if the cancer is gone yet. For now, don't care. We are home, with our kids, and soon in our own bed. We are looking forward to listening to the innane arguments and seeing friends. We are looking forward to our life.

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Up

1000! He’s up to 1000 glorious, beautiful, strong, willful white blood cells! From .2 yesterday to 1.0 today. Today 1.0, tomorrow the world! The goal is 4.0. Will they see fit to double, triple by tomorrow? Who knows? Who cares? Up means we do not go down. As the numbers go up, we think about going back to our home and to our kids. Up means the lives we return to are deeper with friendships that this disease brought together and strengthened and lighter from the ones we lost. Up means I get him back. I am humbled by his courage to fight so hard. Up is where we begin again. Thank God for up. Thank fucking God for up.

Today is Art's 42nd Birthday. We got the gift of hope.....oh how corny! Oh how true.

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A Quiz

What do you do when all three of your kids are sick with consistent temperatures hovering around 101, and your mother, the person who is taking care of your kids, calls you and staes “I’m getting sick. We'll need help.” (and where do you put the quesiton mark, inside the quote or outside the quote?

Do you:

a. ask for someone to come over, expose themselves to the ‘house of ills’?

b. sacrifice yourself (that’s what mothers are supposed to do right!) and go back home to immerse yourself in the ‘germ pit’ understanding that you will be unable to support your husband through the hardest part of this journey until his white count goes up? (Anywhere between the next 4 – 15 days)

c. do your best impression of Gumby (damn it) and hope your plastic being will stretch just a bit further...again?

d. throw your hands up, get in the car and drive till you run out of gas and make a new life here ever that place may be?

e. admit yourself into mental hospital (hopefully, it’s germ free) knowing when the kids are older they can sell their story and have it made into a Hallmark movie?

f. take all the anger at the cancer, at the kids, at your mother, at your husband and mostly at yourself for not being able to handle a situation that is clearly unmanageable (when looked at objectively, of course) and use the energy to find a way to instantly clone yourself?

If you picked b or c, you are what is known as a “over giver” and need to learn to set boundaries.

If you picked d, you are a coward and will never be able to make close connections with people and live a life with limited emotional pain. Wow, right now that sounds good.

If you picked f, let me know what you learn ASAP.

If you picked e, does it have a nice lawn with a big oak tree to sit under? Private rooms? A cute doctor?

If you picked a, call me.

Humor is the only thing I have left. When I’m not laughing, I’m crying. There is no middle anymore, no sanity. I didn’t know it, but it left a few weeks ago.

P.S. Art is the same. No better, no worse. He's consistent even in illness.

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Giving Birth vs. Stem Cells After Effects

Giving Birth

• Friends and midwives and doctors tell you that it will be difficult.
• They tell you labor varies from individual to individual.
• Your wife turns inward. Distracting her while she is concentrating on her “job” could result in: at minimum your hurt feelings because she snaps at you, at maximum you leaving the room in embarrassment after being harangued in front of the nurses.
• She shows little resemblance to the woman you married.
• It’s over between 12 and 24 hours, on average
• You are terrified. The changes come suddenly and without warning, you don’t know what to expect. Uncertainty is short lived (not counting life with a newborn).

Stem Cell After Effects

• The doctors tell you it will be difficult.
• They tell you each individual reacts differently.
• Walking 100 yds becomes the “longest mile.” Trying to distract him, leads to: at minimum being ignored, at maximum him stopping, asking “What?” Answering your question, then mustering up the energy to walk again adding at least 3 minutes to the trip.
• He shows very little resemblance to the man you married.
• It’s over between 12 and 24 days, on average.
• You are terrified. The changes come suddenly and without warning, you don’t know what to expect. Uncertainty becomes the norm.
  

Monday night we learned he had pneumonia. After being admitted to the hospital, he spiked a fever. He has no white cells to fight off that fever. The nurses kept saying “We need to stabilize him.” Not a confident building statement. He was given oxygen (which sent me reeling back to our first hospital administration) and antibiotics. A nurse stayed outside the room, checking frequently on him until 4:00 am when his fever came down.

On Tuesday, he didn’t leave the bed. He managed to hold small amounts of Jell-O and sherbet down. He vomited only twice, an improvement over Mondays’ record of 6 times. I learn that this is all normal – the fatigue, the fevers. Dr. Wolin did admit the administration of oxygen is not usual, though. Art’s inability to walk anywhere, our needing to get him a walker, his unsteadiness, inability to stay awake for more than 15 minutes, his loss of appetite, even the vomiting is within the range of reactions. However, just like giving birth for the first time, normal range is fine and dandy when you hear about it, but when it’s you or someone you love, watching your loved one loose his ability so quickly to function is the most frightening experience I have ever had. I take that back, this experience has only one equal -- the day we watched Pallas get hit by a car.

Art is doing better now. He’s alert, and his sense of humor has returned. He actually got up to use the bathroom this morning. Yipee! Thank God for antibiotics, platelets, and blood.

P.S. Don't forget Art's Birthday is Sunday!

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Art update

For the moment Art is stabilized in the hospital. Fever is gone. They put an extension on his bed so he can finally stretch out. I am going for a pre-emptive stress massage and pedicure.

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Note to My Sister-In-Law

I just sent this to my sister-in-law. Don't know why I am posting it here, guess I'm hoping that by writing it out and posting, it will release the fear. God I hope this works.

"Art is being admitted tonight. He has pnemonia (or however you spell it) Better days need to be ahead. They better be cause I don't know how many more scary days of this I can take. Barbara, I have NEVER seen him so sick, never and i am terrified."

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A Birthday Gift For Art

On Sunday, February 18th, Art will celebrate his 42nd birthday. Eight hours of it will be spent here at the cancer center. As of today, he is hitting bottom. The side effects are increasing in numbers, adding mouth sores and loss of appetite to the list today. Unless there is a miracle, his symptoms will accumulate and worsen by the time it’s his birthday.

So, I have a plan. Art is a music lover. It soothes his soul (sorry for the cliché) and makes the days pass more quickly for him.

For his birthday, I ask that you send me a song.

1. Send either the title and lyrics of a song, or a music file (iPod preferable) or a CD of song(s).

2. The song should remind you of Art in some way or another.

3. Please include a note explaining why the song makes you think of him. Don’t forget to include your name, and the title of the song on the note and CD if you send one. It would be really helpful if you typed out the notes and sent them, even if your song is sent to me via email. I have limited access to a printer!

4. Don’t worry about genre as his tastes are pretty wide ranging from ragtime, to blues, to rock, to gospel, acapella, classical and yes even rap. Lately he’s been listening to Tom Waite.

5. The idea is to lift his spirits, give him something new to listen and to remind him, again, how much he is loved.

Please mail cds and notes to our apartment at 1420 Ambassador Way, Apt. # 2-204, Los Angeles, CA 90035. You can email music files to hamernagle@hotmail.com, please put Art’s Birthday in the subject line.

I know these gifts will do much to lift his spirits. Oh and it may seem random but please, DO NOT SEND FLOWERS! With a compromised immune system, flowers are part of the ever increasing list of “bad things that get Art hospitalized.”

Your gift will help him soar above these indecencies of this stupid disease.

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Experienced Platelet Donors Needed

Art will be in need of platelets starting tomorrow and most likely on again and off again for the next few weeks at least. Giving platelets is more intense than giving blood, requiring close to two hours of being in a chair. Because of this, we are looking for donors who have given platelets before. Your blood type is NOT important.

If you have given before or you think you can hang out in a chair for two hours continuously squeezing a little ball, please call Karen Sacks at 310-202-6151.

And THANK YOU to all the O+ (-) people who donated. We used the first batch of blood two days ago and will use more probably on Wednesday. What a cool thought it is for me to think about the blood of people who love him, giving him life. I know, corny but it's true, your life will at some point be surging through his veins. Thank you is clearly not enough.

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Day 3

Day 3

His counts are almost at 0, 156 to be exact. (Normal is 1800 – 8000) They will be 0 tomorrow when they take his blood. O, nada, none. No white blood cells. Nothing to fend off virus’, fungus’, or bacterias. All milk products are officially band (unless they are cooked). The only fruit available are oranges and bananas because of their thick skin. No salads, restaurant food. No fresh vegetables. The simple act of not washing my hands before I hand him something can make him sick. Someone had a child in the center on Friday, a coughing child. I wanted to pick up that germ bag and remove it, then walk in and scold the parents –people who were beyond realizing that this was a “cancer treatment center” and there are people here who “are sick.” I didn’t know I would so fierecly want to do bodily harm anyone who sneezed or coughed within a 5 mile radious of Art.

Art walked down to the cancer treatment center today. For the past three days, he has been too fatigued to make the walk, using a wheelchair instead. He still walks at the approximate speed of an 18 month old toddler, although with more focus and no stopping. Stopping means not going again. At home, he hasn’t sat at the dinner table for the same number as days. I have to remind him to take his medicines. I help him undress every night. It's like living, I assume, with an elderly patient who needs assistance in almost everything he/she does. Only, this is not an elderly man, this is my 42 year old husband.

If I had a sledge hammer, I am sure I could break through four concrete walls with one blow. As I picked up the hammer, all the frustration, stress and anger from Art, the kdis and me would be drawn into the wooden handle. My own will would swing the hammer high and strong over my right shoulder. Gravity and my anticipation of release would power the momentum of the hammer down. It would trigger the flow of emotion from the handle to the metal mallet. The force would ravage four walls. After being hit, the walls would crumble in defeat and the emotions of this journey would dissipate with the dust. I would walk away feeling my "wrecking ball" power.

A Side Note. I have had no formal training as a writer, heck I graduated college with a degree in speech pathology. I have always used Art as my editor. He was able to read my work with a “professional” eye, asking questions and make suggestions that would take whatever I wrote to the next level. That last paragraph, “if I had a sledge hammer” is also a victim of this disease. The idea is present, but something is missing from it (you writers totally know what I’m talking about). It needs work and I am incapable of figuring out what to do. There have been moments when I have "channeled" Art, making the changes I know he would suggest. At present my own fatigue has made me incapable of that and Art is under the chemo haze, uanble to focus long enough to help me. The rage I feel at this moment could probably knock down this whole building. I miss him.

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To Do List Update

Thank you to all of you! The to do list is almost done and for now we need no more volunteers. Can't thank you all enough.

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Numbers

Numbers

63 and 0

63 viable units of blood were giving at The Windward School yesterday in Art’s name. Art things that’s the most the school has ever gotten! Oh crap, once again, I wish there was a different word, more of a word, than “thank you” though would express our gratitude.

0. Today is day 0. In about 10 minutes, Art’s stem cells will be infused back into him. A nurse will stay in the room with us for two hours while the stem cells make their way back into his body. The doctor will remain within shouting distance. They are using his stem cells to “rescue” him. In other words, if there were not stem cells to transplant, Art would not be of this world for long. The 5 day chemo regiment has disabled his body from producing white or red cells. His stem cells will start the process up again. In the meantime, we will use transfusions to keep his red count at normal levels.

From this day on, we will count days in numbers. Numbers set from this arbitrary day forward. We will report in to the center every single day, just as we have been doing for three weeks. Success is reached when his counts go up to normal level. It can take anywhere from 7 (very rare) to 45 (rare) days. That’s one week to 6 weeks.

Art is fatigued, sleeps a lot and struggles to find the energy to make it to the car, or walk to the apartment. He is too tired to feel frustrated and cries quietly sometimes instead.

The stress rides high in my shoulders and oddly enough, at the top of my head, where even the simplest pat causes pain. I know all the things I “should” be doing to take care of myself but for now, just remembering to drink water and eat a piece of fruit is a triumph worth noting. I keep repeating to myself “this to will pass, this too will pass.” It would be a hell of lot easier if I knew when that would be.

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Blood Donations --- A Call to Arms -- Excuse the pun

On Wednesday, February 7, Windward School will be holding a community blood drive to help and honor Art. The drive will be from 8:30 am – 2:00 pm. It will be held in the school gym, located at

Here are the details:
· Please book an appointment by emailing Meredith Hamel at the following address mhamel@windwardschool.org before Wednesday….hmm that would mean doing it tonight or tomorrow. (My aplogies for the last minute notice!) Include you phone number.
· If you know that you are O+ or O- and wish to be on Art’s direct donation list (where we call you to come in when we need blood) please DO NOT donate at the school. Please call Karen Sacks, a friend who is coordinating donors, at 310-486-0036
· If you would like to donate platelets (a process that takes an hour plus as opposed to the 30 - 45 minutes for blood donation), also call Karen Sacks.
· If you are not O+ or O-, please donate anyway. Art has had 4 transfusions in the last month. To say we are grateful for those anonymous donors who literally have kept him alive is like saying “He has cancer.” The words do not describe the experience.

Below are the guidelines to donating. And thank you one and all again for you help, prayers and love. As embarrassed as I feel sometimes that we cannot handle this alone (I know, need to seek therapy around that issue), I am rendered speechless to see how quickly and often you have stepped up.

BLOOD DONATION GUIDELINES
To qualify, donors must meet all the following standards:
· Be at least 17 years old (no upper limit), healthy, feel well on day of donation and weigh at least 110 pounds.
· No dental surgery within 72 hours prior to donation.
· Not currently taking antibiotics (except when treating acne).
· Not taking Accutane, Proscar or Propecia within the past 30 days.
· No travel to a malaria zone in the past 12 months.
· No tattoos, ear or body piercing within the past 12 months.
· Cancer free during the last five years and have never received chemotherapy. (Isn’t that ironic. Art will no longer be able to give blood!) OK to donate if treated for localized skin cancer.
· Never used intravenous drugs.
· No history of hepatitis or HIV (AIDS).
· No close contact with someone who has hepatitis.
Cannot donate if you have:
· Spent a combined total of 3 months or more in the United Kingdom between 1980 and1996.
· Spent a combined total of 5 years or more in Europe since 1980 to the present (including time spent in the UK from 1980-1996).
· Resided on a US military base in Europe for 6 months or morefrom 1980-1996. Male donors must not have had sex with another male (even once) since 1977.

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A Call for Help....Again

Once again, I find myself stepping into the uncomfortable zone. To ask for a meal, rides and play dates for the kids in one thing, but to ask someone to run an errand for us makes me uncomfortable (even after all this time). Merely admitting that I’m in over my head forces me to face the truth: I am ill equipped to handle the rigors of normal life. You can’t see it, like a cancer, and that’s what makes it hard for me to accept. That fact makes me squirm. I mean, come on, stress is for other people, not me…darn it.

Here is a list of items that I need taken care of. Returns and projects around the house have all fallen to the way side (again) in the last two weeks. I am living in the apartment with Art and staying by his side as much as I can. So…I wave the white flag and implore you to help. I am slightly embarrassed by this list. In a way, it’s a glimpse into our personal lives and I am asking for assistance with things that I would do in a moment if it wasn’t for the gargantuan monster called cancer. In a way, maybe this could be a lesson for all of us. Asking for help is the hardest thing to do, but is one of the most rewarding. Contrary to that little voice that says “Who’s gonna take time out from their busy day to help you?” I am awed at how many people step forward. In fact, I think all of us would be humbled to see how many lives we have touched. It is far greater than you think, trust me.

NOTE: Please call Cicely Flemming at (310) 231-0257 if you can help with anything on this list. DO NOT CALL ME! I can’t get anything done, let alone remember who will do it for me! Thank You.


Airport Rides Tuesday late morning and early afternoon.

• Drop off my friend Jennifer who has been staying with the kids, at LAX. Her flight leaves at 11:20 am
  Pick up my mother who will be staying with the kids, from Long Beach. Her flight gets in at 2:43
• Post Office run
• Returns
  Neiman Marcus
  Nordstrom Rack
  Ross
  Sears
• Lunch boxes for Ezra and Langston
• Aaron vet visit
• Wills for Art and I
• Craig’s list --- a table and trunk
• Handyman
  Hang lights
  Hang glass shelf
  Hang light above kid’s bed
• Picture of long trunk for appraisal ( because I need the darn thing out of my house!)
• Costco shopper (on-call)
• Buy battery for home phone (Radio Shack?)

I am grateful that I get to say this alot. Thank You

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No Ride Needed -- More Blood

Good tears are a great thing. Thank you for giving me the opportunity to switch from bitter, angry tears to happy, thankful ones.

After my post, Karen's phone was swamped with calls regarding donating blood. I recieved 20 emails and 9 phone messages with in 45 mintues of posting. All of them offering rides. Barbara has the opportunity to ride back and forth to Long Beach, all day, if she so chooses to.

Political candidates wish they had our network of help!

P.S. More on blood donation in a moment.

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Immediate Needs

Having the proverbial door slammed in our proverbial face has left me proverially pissed off. However, my anger never got anthing done, other than cause huge knots in my shoulders, so here I am asking for help...fucking again.

Our immediate needs are:

1. Someone to drive my sister-in-law to LGB Airport tomorrow, Saturday. Pick up time 7:00 am (6:45 if you are one of those late people like me)

2. If you have O+ or O- blood, I ask that you get on Art's donor list. He will be needing blood most likely by the beginning of next week. It is very helpful to be able to call people directly and ask them to donate. Please contact Karen Sachs at 310-202-6151. For the rest of you all, Art's school will be hosting a blood drive next week or you can come to Cedar Sinai and donate platelets (no matter your blood type) becuase Art will need that too. Details to follow.

3. Can't do these two things. Do not fret! There is a bigger list coming, but first I need to get out of my own proverbial way.

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Four Days Gone

I leave the treatment center to see my spiritual advisor. The phone rings as I am crossing the street. It’s Art. “They want to start chemo today or tomorrow” he says.
I am silent. What about our four days of normality? What about our FOUR DAYS?! I exhale anger and inhale fear.
“They can’t” I say. “Tell them to wait till I get back.” I hang up.
My stomach lurches. I turn, walk two steps to a bush. I throw up.
“Huh” I think, “the connection between body and mind is amazing.”
Fury forces the last bit of saliva to leave my mouth like an arrow from a bow. I reach for my phone.
“You tell them not today. They cannot fucking start today!” The Lord giveth four days and then the Lord taketh away four days. But not without a fight.

I returned to the hospital an hour later. I spoke with the doctor, or rather I sobbed and managed to fit in a few words.
“You have to let him , come home. He, he, he has to see our kids. If he dies, I can’t live with the fact that the kids didn’t get to see him. Can you? You can’t do this! You just can’t do this to them, to me, to Art. Please, you have to let him come home. You said we had four days!”

In mature speak, it sounds like this. ‘You have surprised me and I am emotionally not prepared. I have handled all that you have thrown at me but enough is enough. How dare you! How dare you set us up to have this little dream of a respite and then take it away! You have unleashed the fury of a tired, outspoken, overwrought woman. You have crossed the line.

A compromise was reached. We got 4 hours in place of the four days. They will start with Rituxan, the happy chemo drug, at 8:00 pm tonight. We can go home and spend 3 hours with the kids. Four days to four hours. Allowing time for the cancer to grow to not giving it the opportunity to think about growing. No good choices available. God how I wish I had some kind of vice to drown the frustration and fear in. Should have skipped more therapist appointments!

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10,000,000

10,000,000!!!!!!!!!

That’s how many stem cells my man-of-a-man husband has produced. The goal was 5 million, and being the competitive guy that he is, he decided that was not good enough. He made 7.7 million in one day. Impressive, I know.

After leaving the cancer center at 12:30 am last night, we returned here at 6 am. The headache is prevailing although not with as much intensity, and the last time he had a fever was at 7 am. It's now 10:30.

On February 8th, 2007, the last round (the stem cell transplant procedure) will start, one week from today. However, before we begin that odessy, he will come home. We will be on furlough from this joint. Art can come home, sit on his couch, eat what ever he likes and sleep in OUR bed! He has been gone for two weeks. He has seen the kids only once during that time. For four days we will be a normal family, just like all those other normal families with bald fathers.

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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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Fish Bowl

I went to the movies today, with some friends. I left the house at 10:00 am and have just returned. It’s 3:00. My friends and I, we had lunch. I ate, I drank lemonade. I laughed, told a story, made a wise crack or two and listened. I think I only gave my “opinion” once. I went to my friend’s car and got the clothes I asked her to buy for me, not able to find the energy to buy them for myself. I got in my car and drove home.

The whole time, the whole damn time, I felt like I was in a fish bowl. Like there was this saran wrap, glass wall, bubble between me and everyone, everything else. Surrounded in this, by this haze, I do not fully see or hear or feel or enjoy. I am here, but two, sometimes three steps behind, or rather off to the side. I suffer nothing.

Art is getting his second transfusion today, second this week. I go to bed dreading sleep, I wake up dreading the day. I am aware I need help but at the moment, consider myself unable to ask for it. I don’t think I am drowning. It’s more like floating between the anxiety, the exhaustion of holding it all together and the rest of being. Although uncomfortable, I deem the experience pleasant. It’s nice not to feel.

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DATES

Friday, Decebmer 15th --- Results from Art’s test show the cancer is almost gone!

Monday, December 18th --- Art started the last of three rounds of chemo. They involve two of the same drugs he was taking before, in much higher doses. I saw the effects on the first day.

Friday, December 22nd --- This round is starting to look like the second worst round ever.

Monday, December 25th ---This round is the worst round ever.

Tuesday, December 26th --- Art goes to a chemo place that leaves me shrieking. Something is wrong. I get him to the treatment center as he begins to run the first of many fevers. Even Dr. Wolin is worried. After anitibiotics, blood draws, and 8 hours of bustling nurses, they send us home.

December 27th --- We return to the cancer center. Spent last night at home, awake. Having made one panicked call to the treatment center after he began to run another fever, fetching him water, and a urninal. I brought to him two sets of dry clothes after the fever trenched him, and comforted him while he cried, both of us confused, scared and angry at these drugs. On tope off all this, I attempted to ignore the nasty little voices of dome. I was only partly successful.

Wednesday, December 27th, 6:15 PM --- Art sleeps as he receives his first blood transfusion. I am relieved and deflated. Instead of spending the next few days periodically coming to the treatment center, we will spend every day here for about 6 hours. We will be here for the next 6 days. He is now on four different antibiotics, pain medication and something to make him pee so that he won't take on too much "volume" with the blood transfusion. I am too tired to care. I want this fight over.

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Ya Know What?

Ya know what? I was gonna write all this stuff to let you know how Art is doing, how I am doing. Was gonna give you the good news that tests shows the cancer is nearly gone, was gonna share how the news was greeted with trepidation by us because we still had the “other” part to get through. But all that stuff was days ago.

Now, I want to tell you about how isolated I feel. How mad I was on the few days leading up to Christmas that I stomped around the house and wouldn’t look him in the eye. I want to tell you about the resentment I felt about doing Christmas alone (even though my mom is here). How I made loud noises all day so Art could not sleep and would instead see me, my pain, my anguish. I want to tell you how when I was saying good bye to a high school friend at the airport, I nearly cried (ya know….the fall on my knees like in the movies cried) “Take me with you. Please just take me with you.” And how I meant it. I want to tell you how I realized that no matter how great the support community we have, no matter how much help we get, Art and I walk, crawl, drag ourselves down this path alone. How painful a realization it is and how foolish I feel for thinking if I could just get “it” all organized it wouldn’t hurt as much. I want to tell you how I keep looking for a reasonable escape. I want to tell how I cried for an hour, and how he cried, too. And how hard, really, really hard this all is.

But instead I will tell you how sad I am. How after the anger, the resentment, the exhaustion this whole situation is real life, horrifically sad. And sitting in this sadness, not ducking, swerving, or hiding from it will be the most moving experience of my life, even if it is quickly becoming the most painful.

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A Caregiver's Fear

“Oh, I’m so happy he’s feeling better!”
“That is great he’s getting stronger.”
“Thank God, he’s healing. I am so relieved for you guys!”

That’s what they all say. I am thankful, too.

I want to scream “What about me! What about me! I am lost when he feels good.” I don’t tell anyone for fear that I will seem selfish. I remember this feeling. It’s the same one I had when I finally lifted my head from childrearing. I wouldn’t, didn’t “mind” myself back then, when they were small and I thought my only job was to “raise babies.” I guess I wouldn’t, didn’t mind myself through this either. How do you avoid becoming engulfed? Can you? I look up from the intensity of the months and wander in large fear circles, unclear, and confused. I ask “What just happened? Where does it leave me? I want to go home. I want to go back. I want to go back to before, to….to me.” I know it’s impossible, and that just makes it worse.

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A Tuesday in The Life

Art’s drug list, every Tuesday for six weeks until the last Tuesday

AM
7:00 At Home
Sulfamethoxazole (a sulfa drug, keeps chest infections at bay)
Fluconazole (anti-viral)
Acyclovir (anit-fungal)

8:00 Cedars
Blood draw

8:20

Emend: anti-nausea in pill form
Potassium Chloride: hydration via IV over 4 hours

9:05
Ativan: anti-nausea, relaxer via IV
Zofran: anti-nausea via IV
Dexmethasone : steroid via IV
Ondansethron: steroid via IV

10:00
Lidocane: local pain-killer via shot
Methetrexate: chemo drug via spinal injection

10:55
Benadryl: anti-allergy via IV

11:25
Cyclophosphamide: chemo drug via IV

12:25
Vincristine: chemo drug via IV

3:00
Adriomycin: chemo drug via IV pump, delivered over 48 hours For two nights we listen to the steady click, when we sleep, as the pump delivers its life saving poison.

At Home
“Just in Case” list

Chlorpromazine (rids sever hiccups)
Zofran (anti nauea)
Zantac (heartburn, stomach acid)

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Tower o' Tupperware Threatens Tall Man with Lymphoma

Thanks to all who have brought us dinner so far (don't stop yet!) and didn't make me responsible for returning dishes!

Three more rounds, 52 more meals, and ? many blog entries and a partridge in a pear tree to go!

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No! I don't want to!

I need to find a someone to help Art with the kids on Wednesday night. (It’s a chemo week) I’m giving a speech that night for 50 people AND getting paid for it. Apparently that was not enough to sway Art’s dr. into postponing the last round a few days. I need yet more help with the kids next Saturdy as I attempt to further my speaking career by attending a monthly meeting. There again, the person who runs the meetings didn’t think Art’s chemo dates should take precedence over the “scheduled months ago” program. Hello people! My husband has cancer! Cut me some slack!

I don’t want to call my friends and ask for help. I don’t want them to say no. I don’t feel like doing this again. I am sick of this stupid chemo and how it is trying to ruin my life! I want it to go back to normal when I simply report to Art that dates and times I will not be available in case he’s looking for me.

I’m not a good soldier and don’t feel like marching. I am staying right here to pout and to self sabotage. Why look at a calendar and plan a week out when I can bemoan my situation? Why ask for help when I can blame cancer? Besides nothing like a little pressure. If I have to ask only days in advance, I get to kick myself with every “Sorry, I can’t” and go into a higher and higher state of panic, the pressure build will remind me of “feeling the burn” of exercise only, well, it will be more detrimental to my health. I’m suffering (not in silence) from my bourgeois angst…because well, I can.

I’ll get over myself in a few minutes but for now, I think I will throw an all out temper tantrum. So don’t call to offer help yet unless you want to hear me slamming my fists into the floor while I kick my feet and yell “I hate you, stupid cancer! No, I don’t want to! You can’t make me, so there! No! No! No!”

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Art's Office and The White Blood Cell Maker

Every day of his "off" chemo week, Art goes to the treatment center to have his white and red blood cell count measured and to have his PICC line dressing changed. The chair is where he reigns for the 30 minutes of procedure. The white blood cell count must be above a certain number in order to insure he can do chemo the following week. Every Wednesday during this "off" week, his PICC line dressing is changed. The PICC line is the line inserted into the inside of his arm where the chemo goes. The line is 17" long ending in his superior vena cava.

In his hand, he holds Nuprigen, a drug that increases the growth of white blood cells. It makes his back ache intensely but it keeps him on schedule. Becuase it does not have any preservatives in it, it is kept in the refrideragtor and must be warmed by hand before it is put into a needle and injected into his arm. If it is not warmed, I have been informed, it stings like hell. He gets Nuprigen shots about every other day becuase the chemo all but eliminates his ability to make white blood cells, the great germ fighters.

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Art and his PICC Line

Art at home, allowing me to take his picture. The PICC Line.

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Round 5

It's been a tough one. Art slept through most of the day and when he was awake he was angry at how feeble he was. I could do nothing but hold him. In another three months, this will all be over but while we are here, I find myself speechless.

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Thanks Giving

I am thankful for:

• Art’s life that almost wasn’t in the beginning,
• this disease for showing us the community we built everywhere we moved and didn’t know it,
• Dr. Wolin’s nurses who “just know” when I need a good cry and push me to it,
• the friends I have gained and for the ones I have lost. Although it is painful, lessons of the lost bonds stay with me and I am lighter for it,
• the kids and all their inane, often obscure behavior that forces me share my feelings about this disease with them. And proving once again that honesty is the best policy,
• the drugs that change my husband but in the end will send him back to me better, stronger and ready to live,
• everyone that reads these posts. We feel your love, your hope, your strength (as cliché as all of those words are) and all of it makes it easier to walk this mile in our lives.

I am thankful that despite our present hardships, we have a wonderful, wonderful life.

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On Sundays Before The Mondays

On Sundays before the Mondays that Art starts chemo, I am filled with a steady, low humming under-current of dread. It’s barely noticeable. I’m agitated, less patient, and unsure of myself. I am raw -- vulnerable to insults, slights and other perceived wrongs. I dream about Ezra drowning…always Ezra drowning. I’m jittery, amped up, ready to go, as if I took one too many doses of my asthma medicine. My shoulders hurt.

None of this feels good. And that is the only reason I know that I am transforming. Before, in the beginning, being jittery was comfortable, easy and familiar. I dealt with the need to move by moving, constantly, like a humming bird from object to object, doctor to patient to friend to grocery store clerk. The jumpiness soothed me. I was doing, going...running. Now, my life resemble that of a pelican, sitting patiently, easily rolling with the waves on the ocean. Only big things make me fly, so I think.

On Sundays before the Mondays that Art starts chemo, Art begins his withdrawal. But not before he spends the day holding me, kissing me, looking deeply into my eyes (cliché, I know!). He mopes a bit and spends the previous days thanking me for holding the fort together, with spit and grass. He is filled with sorrow and remorse that he has to return to the place of the internal dweller. He regrets he cannot do otherwise. He is sorry he will become, for a week or so, a burden on me. Part of the Sunday before the Monday that Art starts chemo is spent in our family version of business meetings. Who is picking him up or dropping him off? When will I visit? When will I take Ezra to buy Pallas’s birthday present? Who will grocery shop for us? We try to make sure nothing falls through the cracks, a futile effort.

Then Monday arrives. It’s all business; kids are up, the low humming turns into open agitation. The kids rebel and react to the electric emotions. “I want daddy to get me dressed! You’re stupid, mommy! I can’t hear you mommy! I don’t feel well. I don’t’ want ----- to take me to school!”

Suddenly they are all gone. I pace the house, straightening, making mental notes that will be lost the moment I pick up the next thing off the floor. Finally I settle and then I cry. So many weeks of this shit and I am surprised by how unarmored I still am.

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Worthy

How do I know if I am worthy of all the love we receive? Should I be the one who judges? Why is it that I pay more attention to the one “nay” and relegate the "yea’s" to the background? I never ever knew receiving was so hard.

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Kick Art's Cancer In the Butt Fund

The fund is going strong and again, we find ourselves breathless with the generosity that has been shown to us. THANK YOU!

To donate, click this link http://www.talbertfamilyfoundation.org/pages/Arts%20Page.html, or click on the Kick Art's Cancer in the Butt Fund (I still love that title!)

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The Bright Side

I am here with Art and the treatment center. He asked me to come with him. He sleeps now. He is face up on the pillow, mouth open, his chin having lost its definition, morphing as part of his neck. He looks like the old man he will become. I laugh. 40 years from now when I see the same sight, taking an afternoon snooze on a chair, I will laugh then too. It is not an attractive look, but one that will hold great endearment to me in the years to come. The endearment starts now. I sit in a reclining chair, feet up and despite my chuckling, I am having a difficult time allowing myself to be here.

In the 14 days preceding this one, I have been from exhilaration, grace, and hope to fear, worry and confusion. Art rode his bike! He got fierce about fighting this disease and sailed through his third round of chemo. He was as clear as our southern California skies. He was loving and present and just….here… with me and the kids. He drank a beer. Then, he got sick. His colorless skin and the sound of his cough blinked me back to the beginning, the weeks before we discovered this thing growing in him. I fell to my knees with the memory of it.

This chemo round has been a tough one. He has been weak, exhausted and absent. I, on the other hand, have been trying to get that exhilarated, yeah, rah, rah feeling back. It felt like the old us. It felt good. Maybe it’s because that feeling came on so strongly and with great vigor. Maybe it’s because it was so wonderful to feel so connected to Spirit again, true and clear. And maybe it’s because in the end, all I want is a rhythm that I can stand in, like the sunlight, something sane, pleasant and gentle. I keep looking outside for what is inside me. The bright side of life is inside Art and inside me, no matter what the illness. I just need to sit still long enough to feel it.

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Halloween

Can't believe I haven't written in over a week. Both Art and I have entered a new phase and I am still trying to eloquently explain it. Every time I try, it reads unclear and sappy so I stop. I'm waiting to get it right for me. It's an odd place for me to be since clarity usuall comes when I let my fingertips go.

Good news came to us this week. Art had CT Scan on Wednesdy. The result? The cancer is gone from 2/3 of his chest! That would explains why he looks so and his continued weight gain...am mine as well! Although the costum is too big around the belly....the chest too!

Here is a photo of us on Halloween. Art doled out the candy while the rest of us (the Unknown Phantom, the Devil, Wonder Woman and Wolverine) all went trick or treating. It was the first time in all these days that we entertained. We invited two families and their kids, served pizza and beer to the grown ups and pizza and juice to the kids. There was noise and chaos and laughter and loudness and it was wonderful. It was normal and it felt good...for all of us.

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