Chemo Dog

People say to sick people, "Let me know if there's anything I can do," and I know that sometimes this is just something we're programmed to say to be nice, but sometimes people are actually looking for things to do. I've started thinking of a few things that I do honestly need help with, and will post them here and let people volunteer if they're so inclined. This avoids the awkwardness of giving someone something to do to help (who maybe didn't really *want* anything to do -- and certainly no-one *needs* to do anything, this is my life, after all). It is also genuinely beneficial to me. Plus people can do as little or as much as they want, and different things fall to different skillsets. This first item is something that I know nothing about, regardless of how good or bad I happen to be feeling.

Thing #1: How do I get my dog registered as a Comfort Dog?

When I was in the hospital this last week, the staff mentioned that dogs are only allowed in to visit if they're comfort animals. These are dogs that essentially just go from room to room getting petted by those who wish a visit. I know that Kaia would be amazing at this and would love it (as would nearly all Greyhounds.) I would also personally benefit as I'd get to see my own dog.

How does this work? Could I do this with Kaia? What are the steps?

Related thing #2: How do I get my dog registered as a Service Animal?

When I was at CONvergence, a local Science Fiction Convention, I happened to walk by the 'con HQ and overheard this conversation:

"She needs to have this dog here with her," The man explained, pointing at the scruffy dog in the woman's arms. She was dressed as a Star Trek bridge officer. "She has diabetes," He continued. "This is her diabetes dog."

I walked past and sadly did not hear the rest of the conversation.

I remarked out loud at the time (mostly to myself) "Diabetes dog? If she gets to have a diabetes dog, then I get to have a chemo dog."

Past the fact that I can't imagine exactly what service a diabetes dog could render (other than barking at people who try to give her sugar) I'd need to come up with a good, plausible reason why I could have Kaia with me as often as possible that the state (or whoever) would accept. I missed her terribly this week and she is very calming for me at a very stressful time. Is a dog that is psychologically comforting allowed? She gets protective when I'm feeling poorly, but she can't exactly call 911 for me. What (honest and applicable) reason could I use, if any?) DIes it need to be a physical reason? If so, what reason could we come up with? 

As a bonus, we know that Kaia's used to wearing a tabard, anyhow. (See actual pic of Kaia, walking out to a race -- with Photoshop Modifications, of course).

Headed Home

It's official: they're working on the release orders now, and my mom is coming to pick me up. I'm looking forward to a world where things don't beep constantlly. Tomorrow: chemo week 2.

Parole Board Hearing Imminent

I met with Dr. Bonzo, the Palliative Care Doc, this a.m. (I'll be working with her ongoing, so she gets a Name). She likes the progress and may even reduce the 'Done from 15mg every 8 hours to 10mg every 8. She gave her approval that I be paroled today from Abbot. Dr. Grampa, my Oncologist, will make the final call but I'm confident that he'll agree. Just waiting on a visit from him now. Meanwhile, the 'Done makes me very tired, so a nap is in order. Will eventually need a ride home, also!

Captivity, Day 6

Its hard to believe that I've been in here at Abbott since Friday trying to nail down a solution to the pain situation.

I was also realizing last night that the pain is only a small piece of the puzzle. I had almost forgotten that I'm in the middle of Chemo, with another treatment scheduled tomorrow. The back pain has been extreme and -- at times -- all consuming -- but as it improves I also need to remind myself that I'm getting farther and farther from my most recent chemo treatment. In this way, two things are simultaneously improving: energy following chemo and mood as pain lessens.

Having Jen, Ray and Steve over to my (thankfully, finally, private room) last night, I realized I was feeling pretty good. The pain was gone, but also my energy had bounced back nicely from the chemo.

With chemo treatments once a week, my blood cell counts wil be back close to normal by the 7th day, at which time I get another treatment and they'll knock me down again. Again and again. Which is just how it goes.

So, in all, I'm feeling pretty damn good today. The pain seems manageable and my energy is climbing back to normal. In a way, this week-of-pain has distracted me nicely from the chemo, to the extent that it had gotten lost in the shuffle. As I was feeling like I had more energy last night and feeling like I wasn't really ready for sleep at about 10 or even 11, I forgot to factor in that I was also feeling more energy as my cell counts bounced back as well.

I am hopeful that I will get out today. I have chemo scheduled tomorrow (wednesday) and I'd like to have a chance to have a fairly normal evening at home (see Jen and see my dog, etc.) before the next cycle begins.

The Methadone appears to be controlling the pain well enough. the pain is probably sitting at a 1 or a 2 now. I just took my 3rd every-8-hours dose of the 'Done, and I'm intentionally waiting an extra hour before taking the Dylotid (which I could have taken anytime after 4 am. I'm trying to be scientific and separate the effects of each, rather than just automatically popping both as often as I can if they're unnecessary.Plus, the Dylotid makes me nauseous, and the 'Done doesn't. they both make me tired, I'm learning.

With the pain now seeming managed, I'm going to lobby heavily for getting out of here today. Ultimately, this is up to the palliative care (pain) docs, and I'm not sure when they're going to stop by today. The chemo treatment that I'm scheduled for tomorrow is just across the street (literally) and there may even be a skyway or subway. Or, since this is the oncology floor they may even be able to do it right here in my own room. But I'd rather sleep in my own bed tonight and make the 5-minute drive back tomorrow.

p.s. cold, fresh tofu spring rolls for breakfast are way better than anything the hospital has on the menu. You may disagree, but you'd be wrong. I'm just sayin'.

Huh. Methadone? Who knew?

So far the Methadone (a surprisingly innocuous looking brown tablet designed as a heroine substitute but without the high) appears to be the Silver bullet. It's early yet, but I've passed on Dylotid twice now, as my pain is at a surprising 0. That's even with bad posture, sitting up in bed.

The nurse was just telling me that the M doesn't peak as severely as others painkillers can. And all IV painkillers can lower blood pressure (causing a bit of a crash): This is in pill or liquid form, eliminating that problem.

The Dylotid also causes me nausea, meaning that I need to pop *another* pill to kill that. Taking the Dylotid as seldom as possible means I take *two* fewer prescriptions, which is good.

Both the Methadone and the Dylotid are opioids, so they will stop up your GI system like a Boston subway line at rush hour. Precautionary measures must be taken!

painkillfail

the pain is back, rating about an 8.

A hour or so ago I met with the palliative care docs, the docs that specialize in pain.

The mega-doses of painkillers they've been using are having less and less effect. They're authorizing upping my Dylotid (not sure how high yet) and are replacing my phentanyl with methadone. This drug is (among other things) used by heroine addicts as a "safe" replacement. Hopefully this will give a clear picture of how powerful it is.

This ain't no way to live. I'm hoping with all of my might that the rest of my life will *not* be a balance between mind-numbing painkillers, and mind-numbing pain.

Meds

I just got done taking my meds at about 12:45am

Partially for the edification of any following along here, and also for my own record-keeping, here is my current med-roundup and pain management plan:

75mcg Fentanyl patch (72 hour). This (new dose and larger patch) takes up to 16 hours to start working, so it will come online at about 9:30 am Monday.

3, 2mg Dylaudid oral tablets, every 3 hours. Regardless if there is pain or not. This is to keep a base level in my system. This amount may be reduced whenthe Fentanyl is try online.

The Dylaudid causes drowsiness, nausea and (for me) itching, which i was reminded of by my body a few minutes later. I called the nurse back in, and to counteract the itching, oral benadryl and Ativan (qntinausea) were given. To counteract the nausea, either oral Ativ

NOTE --- at this point in the commentary I felt overwhelmingly that I was going to vomit. I spent an uncomfortable few minutes in the bathroom until the feeling receded.

In the past, I have taken the IV Ativan (antinausea) which works like a charm. But I/we are trying to work towards at-home solutions. Next time the meds are due, I will request that I fake the Ativan/antinausea pill maybe 1/2 hour beforehand.

It's a recipe that is taking a while to perfect, but I think it will be finalized by tomorrow.

A lot of this is being driven by me, though trial and error and by just listening to my body. I've had to insist on the the scheduled Dilaudid, as an example, and also pushed for the higher dosage of Fentanyl. If you state your case and give reasons for it, your docs should listen. It's my body, and I know it better than anyone else.

To sleep, perchance to have really odd dreams.

*** update: 5:20 am: with my 3:30 am dose I took Zofran (antinausea) 1/2 hour beforehand and It grea. No nausea! ***

Iocaine

Hospital roommates who can only (apparently) sleep with the television on and blaring make me wish for some Iocaine powder for their lime Jello. Or an ejection bed. Luckily I have some hearing loss and I have earplugs.

I am confused, do I quality?

Represent!