New Kind of Doctors Visit

We met with the pulmonologist today. He confirmed what has been evident for the last 6 days, Art is doing very well. All the tests they ran have come back normal. They removed a polyp from his throat. It’s not cancerous.

Dr. Stricke was peppy and cheerful. It must feel good to see someone so sick make an amazing recovery in such a short period of time. He’s never seen Art healthy. It has been a long time since we have left a doctor’s office with unabashed joy. It is strange to leave and NOT to have to fill a prescription or make a mental note to watch out for yet one more symptom or side effect.

I dropped Art off at a friend’s house today, not because he couldn’t drive but because it was on the way back from the doctor’s office and it seemed ridiculous to go all the home. I have spent the last 10 minutes walking around the house wondering what to do. The last six days have been filled with less and less apprehension. The “other shoe” that I am prepared to duck, is not ready to release. For the first time in 7 months there isn’t anything that must got done, read, asked, clarified or inspected.

We are not done. He will still need radiation treatments which will again weaken him, but after what we have been through, we are anticipating it will prove to be little more than a subtle annoyance and besides, that’s in the future. Living one day at a time has its benefits. At this moment, I am content, not ecstatic, not elated. Humbled is the word. It’s another gorgeous day here in LA. The kids are in school and my husband Art Nagle is having coffee with a friend. That is all I need to know.

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The Magic Pill (Well, more like the magic of prednisone and one hell of an antibiotic)

Art, the husband, father, friend showed up on Sunday. He just woke up and was there. We took him out to breakfast and he ate enough for two Langston’s. He went to a birthday party for one of Ezra’s friends and ate the entire time he was there. He had full conversations with adults for over two hours. I sat on his lap.

This morning, HE cooked breakfast and we BOTH got the kids ready and out the door. HE then drove to the cancer center!

I am still adjusting to having him clear and present and centered in our lives, as are the kids. It’s been 3 days and yet feels like a month. And just like before, as his energy increases, I feel mine slipping away. All to be expected, and in this case, welcome. The caregiving is not over but it no longer needs to be tended to so often.

On Friday, I was in the belly of the snake and did not have the energy, reasoning or emotional capacity to move forward. I did not know how I would be able to do another day, Ezra’s birthday at that. The universe heard me when I said I was done. (Or was it the strength of ancestors?) Now, the universe has givin me the space to breath. It feels nice to breathe, so very nice to breathe.

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Nothing Compares

Art is home. I am truly at the end of my rope. Exhaustion sits on my chest at varying weights throughout the day. Two hundred years ago today (or is it tomorrow?) England ended slavery. This exhaustion that intertwines both my mental and physical energy must be what it felt like to be a slave. I can't imagine going any deeper than this, but they must have. They must have or I wouldn’t be here. I will move forward. I owe it to them. My life, even as it presently is, is something they couldn’t even dream about. Tomorrow their courage will be the only reason I get out of bed.

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Sleep

I should be asleep. Today after picking up my daughter the exhaustion settled on my face. I could feel it pressuring my eyes from the back and from the top of my nose it spread to under my eyes and onto my cheeks. All at once, I wanted to pull over and just sleep. I wanted to be Rip Van Winkle.

The problem with sleep is that before I can reach that place of peace and calm and oblivion, I must travel through the place of free thinking and letting go. It is there that the fear of yesterday and today and tomorrow gang up and assault me.

I don’t know why I don’t want to acknowledge that when it comes down to it, yesterday was not a great day. That later when I spoke to Art on the phone, he was crying so hard he couldn’t talk. I can’t acknowledge that no matter how much better this hospitalization is because it’s not the “CANCER” causing it, I still have to talk myself down from the fear of his dying. I don’t know why I won’t accept that even though this hospitalization is less stressful, 7 on a scale of 1 – 10 is still pretty high.

I know that with the acknowledgement of these things will make me cry. The problem for me is the crying has stopped making me feel better. I’m still stuck trying to walk the line between self pity and indifference. I want off this rollercoaster ride. The sudden ups and downs leave me feeling hungry and anxious, distraught and uncomfortable. They make finding the light at the end of these narrows difficult. And I’m tired. I’m just so damn tired.

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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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