Loaded For Bear

Methadone 10 mg- (liquid for oral or PEG tube)  0.7mg 3 times per day
Dilaudid 10 mg- (liquid for oral or PEG tube)  0.8mg, up to every 3 hours as needed
Mediclophan (nausea gel) apply topically 4 times a day
Lidocaine patch- 12 hours on, 12 hours off
Colace 2 tabs twice a day
Ditropan 1 tab twice a day
Warfarin 1 tab once a day
Celexa 1 tab once a day
Albuterol treatment by nebulizer- as needed 2-4 times per day
Xanax 10mg as needed for anxiety
Ambien 10mg as needed for sleep

My schedule is still a little wobbly, but it's all getting in there. If I didn't keep track of it, no one could.

I wanna talk about....

HOSPICE.

I haven't talked about hospice, or much of anything lately. It's a full time job to properly medicate myself all day. But hey, I can multi-task! Right this minute I'm having an albuterol treatment in my new nebulizer. It's also taken me about a week to pull this post together.

The word "hospice" is a pretty scary word to most people. Some immediate thoughts upon hearing the word "hospice" are DEATH! DYING! KICKIN' THE BUCKET! (ok, that one was mine). But I chose hospice because treatment for my cancer was not working any more, and the cancer is spreading. I am in a totally new Place. I'm soaking up all these new feelings since I signed that one little orange paper. I'll save that for later.

I have my own hospice team. I have a doctor that makes house calls. She is amazing! I have a RN case manager, "A", who oversees all my care and stops by once or twice a week. I have another RN, "L", who covers when A is out. I have a phlebotomist, "R", that comes by and draws my blood once a week. I have a social worker, "N", who takes care of my head, and everything and everyone around me. She brings me flowers.

My hospice is a not-for-profit organization so all of my care not covered by state insurance is taken care of. I can't even begin to tell you how wonderful they all are. Just when you think there couldn't possibly be any more they could offer you, they're back with a massage therapist for my lymphedema. Their pharmacy delivers day or night. My oxygen and supplies are delivered round the clock. A couple weeks ago I said "I have a swollen ankle". An hour later there was an ultrasound tech at my house checking me for DVT.

They really listen to me. They are all about me and my pain and my feelings and my children and our comfort. I have not had a bad experience or weird vibe from anyone I've met through hospice. God, what did I do to deserve this kind of loving, kind, compassionate care? I am blessed beyond belief.

LOVE

Look quick! She's lucid!

Hey, sports fans! As usual, I'm heavily medicated so I'm unsure as to what will come rolling out of my mouth (or fingertips, I should say.) And my fingertips are all cracked and bleeding again- reaction to all the meds? Maybe, but they hurt like big dogs, and have put a serious damper on doing things like typing, texting, buttoning buttons, and all that other mundane things you use your fingers for. 

Anyway- I am back at home again. They cut me loose yesterday after pulling the chest tube. Remember how I was getting my panties in a wad over the ventilator thing? When I woke up from the surgery (which only took about an hour), I wasn't even ON a vent. Apparently, after about an hour in the recovery room, my poor little abused, flooded, twice-drained, and newly powdered lung was inflating on its own and they pulled the tube before I even woke up. How's THAT for shits and giggles? Unreal. 

So now I'm perched on my very own cushy bed (minus the awesome little raise-the-head feature like in the hospital) and updating y'all. I'm pretty sore, having been punctured by chest tubes 3 times in a week, but I'm HERE. I did develop some edema in my feets and legs, and am wearing some TED hose to the knee. My legs now look like Brunhilde the shot-putter's legs. No offense to Brunhilde or shot-putters, but my legs are one of my best features. (like modesty). 

One of my new meds is LASIX. A pretty powerful diuretic (?) that has me up scrambling for the new commode that sits so attractively next to my bed. By the new oxygen pump. I almost feel like I could open up my own durable medical equipment store with all the new stuff I have. I'm waaaaaay whacked out with Methadone, dilaudid, still on bladder meds, now diuretics, stuff to eat, sleep, shit, you name it- I've got it. 

I am one lucky girl and there is definitely someone way up there looking out for me. Him, plus my family, friends, blogger buds, FB buds, neighbors, and about another 10,000 people known and unknown to me. I am a BELIEVER in the power of positive thought, prayer and love. Thank you all so much for pulling me (once again) out of the pit and holding me up. I love you all so much.

Last Ditch Surgery

So it's 7:45 here in hospital land. Things are starting to move, however slowly.and I'm typing on my phone again so this will take awhile.

My surgery is scheduled at 1. The plan is to get some kind of powder into the pleural space so it can dry it up and seal it. Doesn't sound too difficult. The thing that bothers me is that I will be on a ventilator for a few days. I know that this is part of the treatment and recovery so I'm not wiggin out over it. It's the possibility of a longer intubation that is on my mind. A one to two week intubation was brought up, which goes against my DNR wishes.

There has been much discussion over this. I am giving it a 14 day maximum limit on the vent. My family will keep you all updated.
Love,

Not Much Time

Hi guys- got lots to say but not much time to say it all. I'm pretty heavily medicated so my lucid moments are becoming fewer and further between. I am on home hospice now but am posting from the hospital.

Anyway, lots of new stuff has happened. I finally got a total bowel obstruction and am the proud owner of a colostomy bag. My stoma is named Stella. I have a PEG tube that I was only using for my liquid methadone and dilaudid. I am now on oxygen, on 4 Litres. I have a big pump type thing that lives in my closet because it's noisy. It has a bubbler (for moisture) and there is always water in the line. I have a portable tank that's on the little trailer-pulley thing that just makes me want to go to the casino, ya know? There are always those little old ladies in there playing the slots, dragging their oxygen tubes and puffing on their cigarettes. gross!

What I'm working on now is fluid in my lungs. I came in to the hospital last week after hospice sent a home x-ray dude to the house because I was getting short of breath. The x-ray showed that I had 2 litres of fluid on my left lung. I went through a procedure where a chest tube was stabbed through my ribs and hooked up to a pump/ container thing to collect it. On Sunday, the drainage stopped so they took out the tube and sent me home. The x-ray dude came back on Tuesday and lo and behold, I had another 2 litres of fluid on the same lung. Back to the hospital for the same procedure- to drain the lung.

I've just spoken with the surgeon/pulmonologist/ hospice docs, and God's Army, and we've decided to do a procedure tomorrow called a Talc Pleuro-desis. You can look it up cuz I'm too exhausted to.

Things are getting close, my friends. I can feel it. I have signed a DNR (do not resuscitate) at my last hospital visit (with the bowel obstruction. I don't know a whole lot right now, except things are escalating- my body giving out, a lot of things. It's a weird feeling. I know this post is disjointed, rambling, whatever, but that's how i feel most of the time. My daughter will update for me when the time comes.

I just want to say to you all; I really love you. You've all helped me so much, in getting through my treatments, procedures, recoveries, etc.  I am so grateful to you. I do know that God can step in and change things at any time, but I'm also a realist. I'm not even gonna proofread this before I hit send cuz otherwise I'd be spending all day on it.

If you know me on Facebook, there's where you get the "morning update", meaning, if I say good morning- it means that I woke up.

I don't know where else to go with this, but here's the skinny. Say a prayer for my family, my children, my friends, and others who love me, will you? I think they need it more than I do.
I love you