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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