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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Help if you live in LA

Art needs a ride to the treatment center tomorrow. The prospect of calling people to ask is overwhelming in our current exhaustive states. In fact the energy to write this took me all day to muster. It's just been one of those days. His count is down, my energy never quite recovered this week. So if you can give him a ride, tomorrow around 10 am, please give us a call.

On a brighter note...we are half way though this regimen!

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Today

I don't want to do today. It all feels too much.

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Update

We had a conversation with the doctor today. The things we now know are as follows:

1. Treatment will continue on the every other week basis. The last day will be Friday, December 8th.
2. Art will spend his Thanksgiving day at the treatment center. (I know, breaks me up too.)
3. After December 8th, he will start another chemo regimen called Hyper CVAD. He will receive the “B” portion of the regimen.
4. It is a nasty regimen. The doctor thinks Art will only be able to handle two rounds.
5. Round 1 will be on December 18, the day after our 12 year anniversary.

The rest is guess work for now, but here are general dates:
On the week of January 22, his stem cells will be harvested.
On the week of Jan. 29th, he will get a dose of HIGH chemo therapy.
On Feb. 5th, he will have a stem cell infusion.
On Feb. 5th, Art and I will move into an apartment near the hospital for up to two weeks becuase the doctor wants us close to "help." His white cell count will be close to, if not, at zero. If I stay with him, neither of us will be able to see the kids.
In March, Art will have radiation on his testis.
In April, God, Allah, and Buddha willing, he will be cancer free.

This road looks very long and uncertain from this couch. What I know from this place is: We are half way through the first chemo regimen and Art is alive. I don’t know how many more tooth fairies or kids at school will be forgotten. I don’t know how we will make it through Thanksgiving weekend. I can’t even imagine what Christmas will look like. For the moment, I am choosing not to look at what will be, but what is. What I do know is that Art can still hold me and I him. That is truly all that matters.

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A New Way to Help...

Donate to the Kick Art's Cancer in the Butt Fund! Here we go...because the past 8 weeks haven't been interesting enough! At this point, it's unclear whether or not Art's stem cell transplant will be covered by our insurance. The stem cell transplant is a procedure where they harvest his own stem cells then after a large dose of chemo, they transplant them back into him, giving his body the chance to regenerate the white and red blood cells he needs. This procedure offers the best opportunity for total cure.

Thanks to the generosity of the Talbert Family Foundation, we have been able to set up a fund. 100% of tax-deductible donation will go to us.

This has been an agonizing decision. The mean, shaming voices in our heads have said "Shame on you for not saving thousands and thousands of dollars for this "rainy" day." We do not make the request for funds lightly. Thankfully, we also have courageous and optimistic voices that are louder. They say, "You are not alone. If you ask, it will come." We are listening to these nicer voices and trusting it will work the way it needs to.

To say this experience has been humbling is like saying it’s cold in Alaska. “Thank you” does not cover the breadth of our appreciation for the words of strength, the prayers, the notes, the emails, and the gifts that give us courage every day to put one foot in front of the other. If you do nothing else, please keep them coming.

Click here to donate.

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The Beautiful Head

Present day Art. Taken today, earlier this evening.

The chemo treatment is rougher on him this time. Somewhere in between the first treatment and the second one, lies this experience.

We have stopped setting ourselves up by guessing how each treatment will be. Nothing is permenant but impermance.

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Threads

In the last few days, Art drove the car. I almost had two accidents from inattentiveness. He went to Apple Pan for burgers, I napped. He disciplined the kids, I sat numbly by, not caring. He finished a whole protein drink, I finished a bottle of chardonnay. I hang from a frayed thread, he hangs from 6 or 7 of them.

We will change places this week as chemo progresses, although I don’t know that my thread ratio will go up. He will nap, I will discipline. He will focus in on himself, I will let him go. He will feel hopeless and I will remind him of the beauty around us.

My threads come unwound and with his skilled hands he winds them back together. His threads unravel and with equal dexterity I rewind them. Thus, we manage to stay bound together.

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Comforting Words

Art was getting ready to go up to the treatment center yesterday for blood work. Even on his chemo weeks off, he must have his white and red blood cell count measured. The whole process takes about 1 hour from start to finish. Add on the 1 ½ round trip drive that he makes every day and well, you get the point.

He sat next to me on the couch, perched on the edge. He gave one of those, I’m-so-tired, don’t-feel-like-doing-this, makes-you-want-to-comfort sighs. I instinctively put my hand on his back and started rubbing. “Hey” I said cheerfully, “you're half way through…” No, I thought, he’s not half way through. “Don’t worry,” I began again, in my best ra, ra voice, “you’ll get better soo,” and stopped myself. In the day to day of this cancer life, 4 ½ months is not soon. I made on last ditch effort. “Honey,” I started tentatively, “……..” nothing came out. This disease leaves even me searching for words sometimes.

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Art Upate

It is Sunday night and just the fact that we are still up, watching a Tour de France DVD is an indictaion of how well Art has weathered his second week of chemo. Yesterday and today were by far his hardest days, but nowhere nearas gnarly as the last around.

We are not sure why he's doing well. Is the extra fluids I asked the nurses to give him this round or is it the superfood shake we are drink daily? Is it that he spiritually better connected and mentally "knows" what to expect? Or is it just experience getting us through this? We find ourselves becoming as superstitious as baseball players. We will repeat what we have done this week in the weeks to follow, putting our hopes in avoiding anymore nastiness of this disease's cure.


As I was writing this, I asked him how to spell superstitious. Mr. "hard English teacher" couldn't tell me. I watched his face as he tried to remember. He looked at me, and smiled broadly which then turned into a laugh. As he left the room shaking his head, he was laughing. Maybe that's why it wasn't so bad. He's letting go, holding tight to the things that matter.

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Re-Connection

I picked a fight with Art last night. Didn’t realize I had picked it until it was over. My complaints at the beginning of the “talk” were two fold. One, I wanted him to promise me he would reward me for all the stress I was enduring. Two, I wanted him to tell me if he would or wouldn’t be able to give me what I wanted in our relationship. Not what you usually demand from a person suffering from cancer, but like I said, I was picking a fight.

As we talk, I go from an upright, back straight position to an inward, crumbled rag doll, sinking further into our oversized green chair, unable to meet Art’s gaze. Every demand I make deflates me as pieces of self disappear. Art, on the couch, is looking emotionally sicker and sicker as the conversation continues. I sob. I’m confused, not sure of what it is I want, unsure of the purpose of our conversation. I look into my lap at my ringing hands and realize I miss him. I miss him so fucking much. I am thinking that when Art begins to cry. “I miss you,” he says and holds out his hand to me. We come together, crying on the couch, both of us relieved.

Cancer corrodes the pieces of he and I that fit together. I forget that lesson every time we go into chemo. In cancer, I am busy dealing with our lives, he is busy getting through the next moment. We talk to each other every day, but until last night, we hadn’t touched each other in over a week. There were the usual hello and good bye kisses, but our morning ritual had disappeared into the chemo fog. The moments that make a marriage work, like appreciating the others wise-ass comment made towards the kids, are absent.

This cycle of connect, disconnect, reconnect is not new to our marriage. Our ability to reconnect is the reason we are still together. But this disease amplifies all of it; the shame, the anger, the hurt. As it does the sweetness of Art’s breath, the sound of his voice as my head rests on his chest, the feel of his hand lying lazily on my hip.

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Side Effects

Art's having another physically good day. He is presently sticking pizza in the oven. Something I probably should stop him from doing since one of the drugs knocks his balance off a bit.

The side effects of the drugs are many, irritability and loss of balance being only two of them. From nasea, which they give him more drugs from, to fatigue, it's pretty wild to read the side effects card that Cedars gave us, and check of those present in my husband.

Hiccuping is by far the most entertaining. I'm talking about bed vibrating, body rattling hiccups. When he has them he tries to get rid of them without the help of yet another drug. He puffs out his chest like a proud bird while he is simultaneously holding his breath. I am usually talking about something and not looking at him. I get annoyed when he won't respond, turn to him and there he is. Chin back to his neck trying to look "big." Our laughter foils at least one attempt. The next logical step would be for him to move his chin and neck forward, place his fist, elbows bent, on his hips and do the bird walk.

It's good to laugh together.

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Good Day, Bad Day

Art's having another good day. He is presently sticking pizza in the oven. Something I probably should stop him from doing since one of the drugs knocks his balance off a bit.

The side effects of the drugs are many, irritability being only one of them. Hiccuping is another notable one. I'm talking about violent, neither of us sleep, hiccuping. He is currently on Thorazine (?)

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And Now...

I withdrawl from my husband. Don't worry, I'll return. I always do.

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Acceptance

Langston's ride forgot him at school today. I picked him up. Immediately after his car door was closed and seat-belt was fastened, he started our usual conversation regarding buying him another video game. It led to my plans to attend a monthly Saturday speakers meeting. His face dropped. "But," he said, "I don't want to be left with daddy cause then he'll yell at us."

I felt nothing. No emotion. Not saddness, no woe-as-me-ness. Nothing. This is just another phase of this disease. It has taken awhile to effect this aspect of our lives. We will muddle our way through this, just like we have all the other parts. I'm sure I'll cry about both these things later.

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Separating Church From State or The Man From The Drug

This morning, Art and I yelled at each other for, I think, the first time ever. We did it in front of the kids. Ezra dropped from his chair and crumbled to the floor crying. Langston sat at the table, his chest pressing against its edge, hands in lap with his eyes looking at the blank place in front of him. Pallas’ knife hand was suspended between butter and toast as she stared wide-eyed at both of us.

Art has gotten mean. Not mean mean, but short tempered, low fuse, misunderstanding mean. This morning, I felt like I needed to protect the kids emotionally from him. It is not a feeling I am acquainted with. There are two drugs, Methotrextate and Ara C, that get injected into his spine and thus go straight to his brain. Listed side effects for Ara C are confusion, agitation or hallucinations. (At least he’s not hallucinating!) Add to this Art's general irritation at not being able to be “him,” and it’s making for some interesting family dynamics. One whimper from Ezra sets Art off. He forgets that Langston is nine and that we have to "refocus" him at least three times to insure his dirty clothes end up in the hamper. The kids feel the change and are shifting their energy to me even when Art is “well.” I feel the pressure to protect them. And it’s all changing how we relate to him. I know it’s the drugs and the disease, but try telling that to a 4 ½ year old, or to a 9 ½ year old. Try telling that to yourself after you’ve been yelled at by someone who has rarely yells. It’s pretty fuckin’ hard to separate the man from the drug. Pretty fuckin’ hard.

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Errand Runner Returnith

Art came home today from his 5 drug poisoning, looking and feeling great. He hasn’t even taken a nap! And as a bonus, he ate dinner! It’s good not to have him disappear. It's also hard to let go of the, dare I say, martyrship. But not that hard. If it goes this well tomorrow, I'll be running all kinds of errands on Thursday, coke and caffine free!

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Three Simple Steps

I’m so lost I don’t even think I can write. Art started chemo again on Monday. Today, he gets five chemo drugs. I expect he will be in – I don’t even have a word to describe where he goes when his is loaded up with poison. No matter, he will be there for the next few days. I sit here on my couch unable to go out and buy a hard drive for our crashed computer. The steps would be as follows: Step 1. Go to Best Buy. Purchase hard drive with 120- 160 GB and that does not say “Serial APA” on it. Step 2. Drive said hard drive to Art’s school and deliver it to Jim, our computer savior. Jim will make it easy, he will walk into parking lot, take hard drive out of car and into his office. I will only need to see him. Step 3. Leave school and come home. Three steps, all of one hour of time, and yet I will need several cups of coffee and a hit of cocaine to get it done, none of which we have.

I feel stretched. Thinned out, bendy, double backed. The weight of this disease and what it is doing, has done to Art, to us, deforming our vision of ourselves. It crushes from all sides, below me, to my sides and diagonally down on me. Moving feels optional.

I know this is where I need to be. I know that I am “processing,” moving through, working out my emotions. But it doesn’t make sitting here, staring at the blank T.V., any easier. I think I can find a number, call a friend and ask them to do it for me. Yes, I know I can.

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Emotional Knowledge

Three days ago I met with my spiritual counselor -- a session similar to meeting with a social worker/psychologist but one that opens and ends in meditation -- and she asked me: “Kim, what it is that you think all these people who are helping you want you to be doing?” I started to cry. I realized everyone is trying to make it easier on me so I can rest, and spend time with Art and help him rest and fight and mend. I cried the whole 30 minute drive home. Intellectually, I have always understood the reasoning behind the help. The other day, I got it on an emotional level.

Fast forward to today. I am preparing for next week when we will be by ourselves as a family for the first time since days after Art was diagnosed. I am feeling organized, a bit freaked by the proposition but well supported by many. I know that I am not operating with a full deck of cards. I know that emotional stress takes its tool on memory, and ability to adjust. So I am double checking my plans for next week with friends, just to make sure I’m not forgetting things.

No one told me not to forget Pallas today at school. No one told me to remember to check with Langston’s ride from swimming to make sure they would be there to get him home. Now…I emotionally get why we need everyone's help. No guilt involved though. I know I am not “all there.” I also know, and am very grateful, that we are surrounded by people who do have full decks and will fill in when I can’t remember things. Both kids arrived home in the hands of friends. So will next week go perfectly? Probably not. But if I walk away with no other lesson from this experience, I will walk away knowing that we are loved, and supported and that things have to go through many, many sets of hands before we hit the ground. Thank God for you all. Thank God.

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Choices

Art is sleeping now. Yesterday for the first time, we had some alone time in our house. Art told me in the beginning of this journey he had a moment when he chose which way to go. “I remember. It wasn’t a voice, but it was just like my brain said ‘Come on. Go this way. Go this way. It’s easier.” The easier way was death. I watched him as he told me, his voice getting stronger, the color in his face deepening and his lips formed the line he gets when he’s made a decision. He said the his brain “No, I want to go the other way.”

He has told me he will not die before. “I will not leave you,” is what he said. But many times it sounded as if I was his little lady and he was shielding me from a truth I couldn’t handle. I grasped at it anyway, believing it to make it through another minute. But yesterday was different. The kids weren’t around. The statement didn’t come at night or in the panic rush between dinner and bedtime, or after tears. It wasn’t on one of our long, quiet and emotionally frightening drives back from the treatment center. We had already walked through the awkward re-acquaintance period -- how he’s feeling, the nuts and bolts of our days -- and were enjoying, our time alone, together. I asked him then, out of curiosity, not fear, how he knew he would survive this.

People think that a “good” couple knows everything about each other. A soul mated pair anticipates when and what the other will need. This disease punches more wholes in that idea than buck shot. I have watched him close in on himself and not known what to do. I have held him while he has cried and felt the powerless in trying to stop the tears. I don’t know a thing about what he is going through, not a thing. But I do know something that helps me continue this journey with him. Me. I am enough for him. I am enough and really, I guess that’s all that counts. It's all beautiful righ now.

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Spoons

Art had a tough day today. Chemo effects still working him hard, nausea and fatigue don’t wonder to far off. He feels good for a few hours and then he his stomach is upset, or he needs to take nap or two, or three. It could be that today he has trouble eating or a combination of one or all of the above. This disease has a way of picking your spirits apart. This disease is like a magnifying glass, like I said before. I can see my flaws clearly. But it is also like spoon, one side upside down from the other.

For the second morning in a row, upon waking, I find myself enveloped in Art’s arms. As I settle in, he smiles and in a deep, warm, Art voice he speaks the words that I don’t realize I have missed until they are said. “Good morning, sweetheart,” he smiles. Then he pulls my in closer and gently kisses my forehead or pulls my hand to his mouth and kisses it, as if it were the most delicate thing his lips have ever touched. For me, it’s the moment in my day when the world truly is outside, and we are in this space that is only ours. Even with the kids literally in between us, he has managed over the years to create, for just a moment, this circle where only he and I matter. It’s his way anchoring our day in us. For me, it’s the moment when I know I really matter to someone else. For both of us, it’s been missing from our lives for too many weeks. This tiny little morning ritual has been in existence for over 12 years, from the first time we spent the night together.

The last two days have, again, given me a glimpse of the man I am fighting for. And it makes me smile really wide! But like a spoon, for him, it has made the rest of the day difficult. What I see is progress, the messiness of chemo slowly leaving him. What he sees is the potential of the day. He starts out with ideas and thoughts, but his body cannot supply the energy or strength for the plans. I feel hope in his tenderness, he feels frustration that he cannot maintain that desire to take care of me. I feel elation, he feels anger.

As I sit here, next to him, we are the concave and convex emotional surfaces of a spoon. Some one commented on this blog to look at the good that we have. The good outside of us is easy to see in the support, the cards, the phone calls and the emails that keep coming in. It is harder to see within ourselves. We have been reduced to being happy that Art can walk down to the end of the block and back. It’s a challenge to rejoice in that kind of stuff. But funny, how one day I cannot and the next day I can. Art held me this morning. And maybe tomorrow he will be able to find peace and beauty in that simple action.


OK, back for a moment to the pity party. Art is my muse and my editor. I often ask him to read everything I write before I post. He offers clarity and astute feedback always. Tonight when I read this too him he was just too unfocused to help. I want to go back, right now to this morning. That way I won’t feel as lonely as I do at this moment.

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Little Steps

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

Merrie Amsterburg
Little Steps

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

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

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

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4:37 PM

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

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

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Death

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

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The Smell

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


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

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

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Fatigue

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

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

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

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

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Wrapped Tight

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

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

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

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

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The Order of Things

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

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

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

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

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

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Grace

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

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

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Fat Lady Ain't Singing Yet

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

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

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Hair Loss

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

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Excitement

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

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

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Fear

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

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

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

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Help Wanted

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

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

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

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

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In Between

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

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

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

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They're Out Here

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

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

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

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

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

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

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Acceptance

Thoughts from last night

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

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

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

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

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

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Life Threatening

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

Art has lost 16 pounds since August 28.

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

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

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

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Our Life

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

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Home Again, Home Again

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

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

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

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Chemo

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

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

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

Chemo is the scariest thing I have ever witnessed.

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Day 15

Art is home. Funny though, I find myself less excited than I thought I would be. His arrival home simply signifies that another phase in this journey is beginning. I imagined him home and well. Instead he is home and sick. Nothing is like I expect and I didn't know I expected something different till it didn't happen. The dampened excitement about having him back forces me to acknowledge, again, this is a scary roller coaster ride. I don't know when the ups, downs and corners are coming. All I can do is hang on and hope the person next to me doesn't mind my leaning into them or my screams.

I don't know! In my completely useless and highly inaccurate view of cancer, I just thought you get diagnosed, you get chemo, you get better. That was it. I had heard about the side effects of chemo but ya know, well, I had just heard about them. I had never seen them

The medical profession is not perfect. Chemo could kill him, an infection could kill him, the lymphoma could kill him. We believe it's all 100% fool proof. We believe it's an exact science. It's not. We know so little about the human body. We think we know so much. In 30 years, I have not doubt that we will look back on chemo and think it barbaric. I look at it in Art, rimming his eyes with red, evaporating all his energy to the point where he can't finish a complete full sentence before he drifts off into a chemo-induced sleep and I see the grossness of the drugs. Intellectually, I know it's making him better. Emotionally, it is killing the image of the man I knew. I trust that he will come back. Waiting is the most painful thing I have done in my life.

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The Real Day 14

Nights are by far the hardest. The thoughts that I can keep at bay during the day creep in slowly, like calories. I am sufficating under the weight. There is an exhaustive amount of things to think about, advocate for and do. And even though I have help, I am never sure what I need till the last minute. Then I become to scared to ask, not wanting to burden anyone. I know, I need to get over myself. It's all a process, nothing comes quickly. I lull myslef to sleep by convincing myself it'll all look better in the morning. Every night is the same. Every morning I awake with fear pounding on the back inside of my head.

Two weeks ago...Art was diagnosed.

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Day 14 --- Wrong Cancer

Yup. That's right. Wrong Disease. Wrong Cancer. Not Testicular Cancer. Nope, it's not the cancer to "have if you are going to have cancer."

It's something else. Large B cell lymphoma. Don't know anything else. Oh wait I lied. He's in Stage 4. (In non-hodgkins lymphoma they have four stages instead of three...la de da.) They were wrong. But really, no one ever said definitively it was testicular cancer. They all said they needed to biopsy to find out. They started the chemo to help him breath. His miraculous entry back into the world of the breathing was NOT due to the chemo, it was do to the steriod they gave to him BEFORE the chemo. Funny, huh. One of the drugs they will use in this regiment is prednisone, a sterioud. So much for miracles.

I dont' feel anything. We are returning to the testing phase. PETScan on Friday, bone marrow biopsy and heart test and blood tests on Monday. We have been calling the car red and now the doctors are telling us it's blue. But it's still a fucking car, no matter what the color.

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Day 12

Weird news. The oncologist, who had the weekend off, told us that pathology has NOT gotten the results yet regarding what kind of testicular cancer Art has. It's very different from what the on-call oncologist told us this weekend. I don't know if we miss heard or he just kind of skirted the truth. I am aware however, that I am not thinking clearly, so it's anyone's guess.

No matter for now. Day three of chemo is about to end. Art is tired today. Effects of chemo, stress, left over operation? Mostly likely a bit of everything. I do know that starting Art on Sunday reversed his steady march towards death. Such a strange word to write in relationship to Art. This stupid germ cell multiples at the rate of an embryo....doubles every week. Even after surgery, the cells in his lungs were merrily growing along.

They took him for an x-ray at 7:15 this morning and both the pulmonogist and the radiologist think the tumors have shrunk! Art still stuggles a bit for breath, not enough to need oxygen but noticable enough in his conversations. We walked a lap around our floor and that was enough for him. Can't believe this is the same body that bicycles 20 miles AT 22 miles an hour!

I am no longer worried about whether or not he will beat this. My concern is now about our daily lives when we return home. How much help will I need? Who should we ask to stay with us? Who CAN stay with us? How long will I need someone to pick up my kids for school? When do I need the kids picked up, dropped off and fed? When will I find time to come up with a grocery list? It's funny in our normal life we didn't think about all that we do and now it looms large in my eyes.

I am exhausted...

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Day 11

Art is off the oxygen! Well, almost. He insist on wearing the mask around his neck like a necklace, memories of not being able to breath not far enough off.

It was the oncologist's idea. If we took off the O2 and Art's saturation level stayed above 92% it would be one less thing for him to be tethered to. Art's look questioned the doctor but in the end the doctor won. It been 6 hours and Art looks great.

I left the hospital today. There is a new order with the chemo that frees me to think about the rest of our lives. This order is the way it will be for the next 12 weeks. There's no fighting, there's no worrying about how or when. It's abosute. If we want Art to live, we will walk down this path, in this order, on these days. It simply is and that is a relief.

Chemo is a process and not a shot, which for some reason I though it would be. The order:
Saline push
Steriod to amplify the anit nasea drug
32 ml of Zofran anti nasea drug
46 ml of Etoposide (chemo drug)
1000ml (not sure of amount) of saline plus potassium to flush kidneys)
46 ml of Cisplatnum
Everything done in 4 - 5 hours.

See what I mean? It's more regimented than our normal days. There is no guessing and hoping it works. They know it does, it has worked on countless others. We are happy to be an anonymous number in this game.

Another chemo drug will be added once Art is free and clear of the O2. Bleomysn is a wonder drug but can cause lung failure if you're on O2 while it's administerd.

So far no side effects but it is only day two. We might have them, we might not. It doesn't matter. Art is on his way to recovery. I know there will be tough days ahead, but after 12 days off listening to labored breathing, worrying at every cough and every rustle of his bed sheets and trying to read and interpret the medical staffs urgency or lack there off, I am glad to rest my soul and let these drugs do there jobs.

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Day 10 conintued

12:50
I am afraid to leave the hospital. The world outside this building takes my breath away…like being sucker punched. In here, there are things that we know to be self evident. Breathing treatments are at 11:00 and 5:00 am and pm. O2 levels need to be above 92 percent. Blood pressure, temperatue and Art’s oxygen saturation are measured before and after shift change. Food comes in a green covered plate.

Nurses are good people. Cindy, Glenn, Jack, Chamara, and Julian all come when you push a button. There are two people whose discreet and quiet manner make it seem like the garbage magically disappears. We are called sir, ma’am, Kim, Art, and honey. Before we came here, in the days leading up to and after his diagnosis, our days were filled with chaos. They were rhythmless. In here there is a steady pattern that lulls me. I don’t want to leave.

1:50
He starts chemo in about an hour! Oncologist just came in and asked if we were ready to start. The cancer is an atypical seminoma, easier of the two types of testicular cancer to treat. I am scared and just spent the last 15 minutes hysterically crying, not being able to breath and wanting nothing more than to vomit. This is all too fast. I have no idea what to expect. Art’s calmness is the only anchor I have at the moment and it’s supposed to be the opposite right now. He is ready to move and I am ready to stay in this little world we have built.

5:30
Not 10 minutes after my last note, Matt walked in. Matt is an testicular cancer survivor. He shared his experience (day three is when you start feeling like crap), gave us tips (buy Purell and us it all the time), told me some things to buy that would help Art (get a zip up sweatshirt with a hood so when he gets chemo he won’t have to exert the effort to take both arms out and the hood to keep his hairless head warm.)

My shoulders are now down to pre chemo announcement level, which is say they look like I’ve been power lifting for only 6 months and not 4 years.

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Day 10 – September 3

Art took a shower this morning. He looks and feels much better. We did not get results back from pathology yesterday. So now, two more days until we begin chemo. Hmm, I used we. It is we, I’m in this too.

With chemo looming in the close future, there is relief that this present stage is coming to end. It’s like the triathlons I compete in, I get a second wind when I know I am coming to the end of the swim. My confidence in finishing the swim portion of the race grows and I know nothing will keep me from hitting the sand, running up the beach and getting onto my bike. I love the bike portion of the triathlons. And that is where the similarity ends. In this case, here, in the hospital, I dread the next stage. How do you train for cancer?

When I read about it at night, I can’t sleep. When I read about it during the day, I cry. Every step in this stupid ass journey is emotionally painful and while I know myself and my past experiences well enough to know I am tough, I simply, very simply don’t want to do it. It looks, feels and tastes to overwhelming. Maybe if I pretend hard enough, it will all go away.

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Day 9

So, here it is. The blog that will document our journey through testicular cancer. The story this far is:

On August 24th, Art and I were sitting beside each other, across the examing table from an infectious disease doctor. The words "It's serious," came out of his mouth followed by "testicular cancer." There were tears and oh my God's, an offer of tea and as well as sleeping aids. We left the doctor's office in a daze and headed straight to a urologist's office.

At the end of June, Art started complaining about joint pain, and his inability to squat completely, something he had previously been able to do. It felt to him similar to the symptoms of Lyme disease he had several years ago. He went to our primary care doctor who gave him a referral to an infectious disease doctor. The infectious disease guy ruled out Lyme's disease and ruled in a viral infection that was in his joints. His recommendation... take ibuprofen and wait it out.

So Art did. Only things got worse. At the beginning of August, Art started running low-grade fevers. Not often enough to worry us, but just enough to be annoying. His symptoms were flu-like, low energy, achiness, etc. On August 8th, Pallas was hit by a car outside our house. (See www.kimthamer.blogspot.com for the story) She was OK, but Art and I spent the rest of the week emotionally recovering from viewing the whole event and writing off his increasingly harsh flu-like symptoms. Art continued to get worse and spent many nights coughing despite the cough medicine. Night sweats came every evening and night, followed by the chills. He was on the maximum dose of ibuprofen. Over the weekend of the 19th, he started having trouble breathing. We thought bronchitis.

And so did our primary care physicians; she gave him a z-pack (high-powered antibiotics that you take in a course of 5 days) on Monday the 20th and sent us back to the infectious disease guy. On Thursday, August 24, we walked in. Spoke carefully about the symptoms. The infectious disease guy suggested he do an x-ray. We agreed. He came back, did a quick scrotum exam of Art, and then left for 15 minutes. When he returned, he started saying things like “serious” and “cancer.”

I wish that were the end of the story. 

More tests were ordered over 2 days. Unfortunately, there was a weekend in between the days. By Monday, Art would get winded just by walking slowly across the house. Through Windward School, where Art works, we got an appointment with Dr. Wolin, a germ cell cancer specialist. He was alarmed at the slow pace at which the HMO system and urologist were moving. He explained that germ cells grow as fast as embryos -- double their size every week. He told us to contact a pulmonologist immediately. His concern was that Art would need oxygen before he could have the surgery which would lead to a definitive diagnosis. (No one is 100% positive it's cancer until a biopsy is done.) There is a certain chemo treatment that most testicular cancer patients follow. It seems that extra oxygen combined with a drug called bleomycin (a cornerstone of the chemo) could cause lung failure. Dr. Wolin wanted to avoid that.

We got home, lost more sleep, and I went into high gear to get Art's help. It was too late. On Tuesday night, I took Art to the ER. He was admitted with an 88% saturation level. Normal numbers for us generally healthy people are around 98%. Of course, the ER nurses and Dr. quickly hooked Art up to O2. Art has been in the hospital ever since.

Yesterday, he had his surgery. Today he is mending, and we await word from the pathology lab. It's now four o'clock. I have given up hope of hearing anything today, which means chemo will start on Tuesday. I just hope the cells have lost a bit of their drive to destroy his lungs.

It feels like someone else's story. And then I wake up in the hospital room when he coughs and realize it is our story. It's hard to believe that nine days ago we were this normal couple trying to figure out what was making my husband sick.

I will write as often as I can.

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