Soon we go home

I talked to my palliative doctor today about going home soon. Yesterday, my pain was completely controlled, maybe a little too well. Even with the ritalin, I was unable to keep my eyes open. I basically went back to sleep as soon as I woke up. I was blissfully pain-free but couldn’t enjoy it at all. So I asked the palliative doctor on call to lower my baseline and breakthrough doses on the CADD pump and then I felt better, less stoned, and then Megan came over with a coffee and the Princess Bride audiobook and she massaged my back and shoulders and I felt amazing, like, I can go home right now! There is nothing wrong with me! Why am I even here!

Then I left the hospital for Thanksgiving dinner and I was all foggy and riding in the car made me feel so dizzy I had to hold still against the headrest and then walk very carefully up the stairs to Jenna’s. And it was so nice to see everyone and be out, though it was difficult to have conversations because I find when I’m on opioids that too many voices or noises at once make it difficult to understand anything. Any time there are more than three or four people in the room talking, particularly if there are multiple conversations going on, it’s like trying to talk to someone across a table at a bar on a Friday night. Also some voices, even at a normal range, sound pingy and sharp (as the voice of the doctor talking to Eileen sounds, and she’s talking at a perfectly normal level).

And of course I faded after a couple hours, and when I faded, I faded quickly. Jenna brought me back to the hospital a little after 9:30 and I shakily made my way to the nurses desk where they told me I looked pretty and asked if I had a good time. My throat was daggers again by that point, but it was so nice to be out, I didn’t care. Once again, the pain was bad throughout the night, but it’s a rhythm I’m used to, and while it was bad, it wasn’t bad as all the previous nights. Progress.

So I talked to my palliative doctor, the regular one, this morning and he asked if I would rather go home with the CADD pump or pills. Going home with the pump would mean a nurse visit every day, while with the pills it would be only once a week. The pain control is the same, and there is actually better long term coverage and more flexibility with the pills, so I opted for pills. We were going to start the changeover tomorrow, but decided to start today because why not. I have to stay here a few days to figure out the best dosing times for the pills, but I’ll go home on Friday afternoon once I’ve finished chemo.

I’m in this strange state right now where I feel well and good, but then I go for a short walk and realize how quickly my energy is spent. It’s not distressing, but it is surprising. I’ve never been on pain medication for any reason other than major surgery or an abdominal abscess, so I’ve never really experienced how the medications knock you on your ass even when you are otherwise healthy (which I am — though it may sound funny for me to say). They are — how shall I put it? — depleting.

But I’ll be eating more as the days go by and each night sleep more than the last, and I’ll start walking more and taking less dilaudid, and soon I will no longer feel like a ghost moving through the living.

I’m staying on the ritalin, too, even once the pain medication is finished. It will combat treatment-related fatigue, which means I’ll be better able to maintain my regular schedule and life. This means a lot to me.

When I spoke to the palliative care doctor, he said a lot of people are reluctant to prescribe the pills because they are afraid their patients will become addicted. I said I had been talking to a friend about that, about being careful about the addiction thing, and I had said that I’ve had plenty of opportunities to become a drug addict and I’m not terribly worried that it will happen now after all these years. My doctor agreed. Sure, if the drugs are being used by a healthy person as a stimulant or as a depressive, there is a high chance of abuse and addiction. But give them to someone who is ill, and that doesn’t happen. I’ve been prescribing ritalin to patients with illness-related fatigue for a long time and I’ve never had a problem with it. And 90% of the patients I prescribe it to have a positive experience. You won’t have a problem.

So that’s where I am for now. Feeling better, trying a new drug regimen, and going home at the end of the week. I know I’ll probably need some help at least in the beginning, but everyone has been so wonderful and made me feel so comfortable asking for it, that I’m not worried about that part at all. Whenever you see a new doctor or nurse for any part of cancer treatment, to establish if you need home care, they ask if you live alone, and if you do, who helps you. I always kind of laugh at that. There’s no short answer to that. There are more people who help me than I can count. If there is one thing I never have to worry about, it’s a shortage of help.

So there we go. Almost back to normal. And on my way back to normal, I’ll be getting a pass to go out tomorrow night to host Raconteurs, the storytelling night I organize. The theme this month is Good Samaritans, which is fitting given the last week or so. If you are in Toronto, come out. I haven’t missed an event yet in the two-and-a-half years that we’ve been running it. I never thought I’d be in the hospital and yet still able to host. But I am nothing if not tenacious.


About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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7 Responses to Soon we go home

  1. Listening listening, and wishing I were closer by. You’re awesome.

  2. Catherine says:

    That’s some incredible determination if you’ve never missed a hosting session. Enjoy being in your own bed.

  3. Sending all my best thoughts to all the wonderful helpful people around you.

  4. Natasha says:

    Can’t wait to have you back. Of course, just say the word….

  5. Connie says:

    Great news Alicia that you are on the way to being released (sounds like prison). Home is somewhere that’s taken for granted until you can’t be there.

  6. Mal and Elaine says:

    Good news Alicia your going home -admire your strength -hospitals are a must but home is the best –love u

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