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And its been a long December and there’s reason to believe
Maybe this year will be better than the last
I can’t remember all the times I tried to tell my myself
To hold on to these moments as they pass
~ Counting Crows

I noticed today that I woke up feeling very impatient and angry. I thought back to when my adoptive mother had cancer and I would get irritated at the disease sometimes and start to think, “Okay it’s time to get well now. Life MUST go back to normal and it must go back to normal NOW.”

I am feeling that way today.

It’s the first time since Michael got sick that I felt truly tired of the whole damn thing. I’ve wanted to scream at the thought of losing him but I haven’t felt like my patience for living for cancer is running out. But today I feel that patience absolutely evaporating. I just want to scream my way back to the way life was before.

I want to shout, “ENOUGH!” I have had enough. I want it all to stop. I want to go back to last September and make the seizure and the diagnosis to have never happened. I want these last 3 months to not have happened. I want my life back. And I want it now.
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Other than the recent stomach distress, Michael has been doing well overall. I told my best friend, last week, that I’m simply taking things a day at a time. During several crises, since September, I have bade him farewell. And freaked out and felt as if the world was coming to an end.

I’ve carried the burden of anticipatory grief way too much these past few months. Yes, things have changed. Yes, the diagnosis is bad and the prognosis worse. But I still have him and I still have each day.

So after our Thanksgiving scare, when I truly thought we were in the end stages, I resolved not to say goodbye anymore and not to brace myself for the end unless it was truly imminent.

It seemed as if I was living in a perpetual state of “OMG he’s going to die any minute now.” and that state of stress CANNOT be maintained for too long without losing your mind over it.

So this morning he woke up feeling better. Perhaps the new medication (Haldol) is having an effect on the hiccups. Perhaps I can get him back on the Decadron without side effects. Perhaps the world can come back to normal for a little while.

He seemed clearer this morning. Alert. Awake. And even knew it was Saturday. He didn’t, as he does every day, several times a day (including midnight) call Gina to get ready for school because she’s going to miss the bus. He knew it was Saturday and knew she didn’t have school. I looked at him as if seeing him for the first time.

At least it seemed I was seeing him for the first time in a long time.

I don’t want to give myself false hope, but I don’t want to be continually saying goodbye to someone who continues to be here. I just can’t live that way.

So for today I’m going to say things are going well. He seems alert, awake and aware. And I’m grateful for that. And I’m not going to say anymore or go any other place with it.

Michael’s hiccups and stomach distress continue. I woke up to a trail of bodily excretions and after I was done cleaning up the mess, including giving him a shower, he threw up all over the kitchen as I was watching the dishes. The nurse came. We’re trying something new. The medicine should be here tonight. I hope it does not, like everything else, make matters worse. We shall see. My patience is wearing thin.

I found a refrigerator repair guy who was willing to come out today and that was great news but it’s completely broken. That was bad news. It’s only 4 years old so still under warranty. Good news. But Sears won’t send anyone out until Tuesday. Bad news. And if it’s the compressor, as the repair guy said it was, it will be a week to ten days after that.

So I’m looking at living without a refrigerator for a week to ten days. I tried to get them to understand that it’s not really feasible given our situation, but Sears really doesn’t care.

I said my husband is terminally ill. Don’t care. I said he has medication that needs refrigeration. Don’t care. I said I need for him to be properly nourished and some of those foods require refrigeration. Don’t care. Don’t care. Don’t care. In other words, I’m working the day after Christmas. I don’t care what your personal issues are. Oh okay.

I said well I understand I can’t do much about this now but I’m not going to let this go. I’m going to revisit this at some point. And she sounded like sure you are and I said, “I’m an attorney, we don’t let things go.” And she told me to hang on and then came back and said, “Now that you have threatened a law suit, I must refer you to our legal department.” I said I haven’t threatened a law suit. And she said, please talk to our legal department and hung up. Customer service. Not so service-y.

I managed to get an appointment for next week and it should be fixed within two weeks but this was the point where I truly started to lose it. I just sat and cried for a long time. My youngest son was here and though they planned to leave and go home, he went to Home Depot to buy a small refrigerator for us to use in the meantime. I still feel completely overwhelmed right now.

The refrigerator that is broken is a Kenmore Elite, top of the line (yes, VERY elite this thing is! Perhaps Sears is confused about the word “elite” and what it really means) and I can’t replace it for less than $2,000.00 which I don’t have. But Michael can’t get anything to drink or eat for himself now. The little refrigerator is downstairs so now I have to do all the running. If I had the two grand, I would buy a comparable refrigerator (from someone else), but I don’t. So I have to wait. And I hate it.

Oh and I’ve been a Sears customer my whole life (my parents bought only Kenmore) but I’m never buying another thing at Sears.

Ever.

Michael was having non-stop hiccuping from the Decadron. It was awful and horrible and I couldn’t listen to it. I stopped the steroids and called the doctor. They prescribed Thorazine as they did in the hospital. It didn’t work. It didn’t work in the hospital either. They said to up his Protonix. The extra Protonix didn’t work either. He was in horrible pain from the hiccups and I sit with him for most of the day and I would be a nervous wreck because the hiccuping was like nails on a chalkboard to me. I couldn’t stand it. And then he started saying “ow” after each hiccup. I stopped the steroids.
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You were my strength when I was weak
You were my voice when I couldn’t speak
You were my eyes when I couldn’t see
You saw the best there was in me
Lifted me up when I couldnt reach
You gave me faith cause you believed
I’m everything I am
Because you loved me

You gave me wings and made me fly
You touched my hand I could touch the sky
I lost my faith, you gave it back to me
You said no star was out of reach
You stood by me and I stood tall
I had your love I had it all
I’m grateful for each day you gave me
Maybe I don’t know that much
But I know this much is true
I was blessed because I was loved by you
~ Diane Warren (for Celine Dion)

Michael has been complaining of headaches and pressure.

This is new.

I know it’s the fluid which is, many times, more dangerous than the tumors which appear to be at a standstill. How long they can stand still is anyone’s guess. He’s on a short round of intense chemotherapy right now. Just a quick whack for 5 days of a high dose. He threw up today for the first time ever. During his 42 day stint of chemo he actually tolerated it very well. But he’s much weaker and eating so much less than he did then.
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Michael came home today. He was a wreck by the time I got to the hospital. They told him first thing but then the doctor’s office and the pharmacy delayed me for over an hour. He was so anxious and upset. He said to me, “I know this isn’t like me. I know I’ve always been independent, but I really need to know you’re near or you’re coming.” I kept reassuring him and he perked up as we were leaving.
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The thing that Michael loved to do, even more than motorcycle riding, was fishing. He is a bass fisherman..catch and release. And I’m the first person he’s ever known to actually make fun of him about it. And my poking fun at him was one of the things he liked about me. Go figure.
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Over the Thanksgiving weekend and in the beginning of the week, I was sure I was losing him. He had so much confusion, weakness and he had stopped eating and drinking. I was beside myself much of the time and Tuesday I woke up with the most debilitating cold I’ve had in years. My emotions were through the roof and my own body was shutting down.

I left Michael to the care of the hospital on Tuesday and Thursday. I had to regroup and get a grip mostly physically but also emotionally. When I thought this was it, I was internally hysterical in a way I have never known. I felt as if my head and my heart were tearing apart.
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Michael was admitted to the hospital today. I called the doctor this morning because I didn’t like what was going on with him.

Since Thanksgiving Michael appeared to be declining. He didn’t eat anything on Thanksgiving. A little more on Friday and then nothing Saturday. Sunday I managed to get a few spoonfuls of clam chowder in him but it took me over an hour to get in about 10 small teaspoons. I had helped him up to go to the bathroom but he went all over himself by the time I got him up. We went to the bathroom to change and he couldn’t lift his head. He was confused. He was talking but not making sense. I changed him and while walking him back, he almost fell over. I caught him.
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