Longterm Care Continues . . .

Teresa is still in longterm care, which we found out recently MIGHT be out of network and no one told us. Found out with the first bill… Billing agent I spoke told me it was so high because T’s insurance was viewing it as out of network. She’s in the same *building* but the floor she is on now is rented by another facility, and is not part of Ballad/Wellmont. I probably won’t be able to confirm this until January 2nd.

Dr. Musgrave, her oncologist, gets no say in Teresa’s care on this floor. But she’s going to try to come see Teresa after clinic hours, and supports us if we move Teresa back downstairs or somewhere else while we wait to see about surgery.

Teresa is literally skin and bones. She’s on a feeding tube. She can still eat solids but will only do it if it’s really good. The hospital food is utter crap and they keep sending her low-fat crap, like she needs to lose anymore weight. I have small hands and I can fit my fingers around her upper arms.

Except for her abdomen and her thighs (the lymphedema in her lower legs was redirected to her thighs) she looks like she’s in for a critical eating disorder.

Her abdomen is full of tumor — mostly just 2, but they’re huge, and some nodules. The biggest is 30x34cm at last CT a few weeks ago. They can barely see anything but tumor when they do a CT or x-ray. It took 5 tries, plus fluoroscopy, to get the feeding tube (dobhoff) But all her abdominal organs still work. She’s also getting marinol (synthetic THC to stimulate appetite).

She developed a DVT in her upper left arm a few weeks ago. She’s getting semi regular blood transfusions to make-up for the daily full dose of Lovenox (blood thinner).

She is confined to bed because the weeping lymphedema. Her legs to her feet had to be debrided (just like with severe burn victims) numerous times. She will need PT for a long time — if she doesn’t have to get both legs amputated. She has to keep her legs elevated all the time, although they let her sit up in a “chair” position in bed when she’s got solid food she wants to eat.

She has 3 bed (pressure) sores on her bottom and inner thigh. The biggest is at least 2″ across and at this time cannot be fully cleaned. At least one is stage 4 – I can see her bones through it.

Dr. Musgrave/Dr. Musgrave’s office did send a referral to Dr. Kato in NYC, but it was right before the holidays so we haven’t heard anything. Dr. Musgrave is going to follow up on it today (Monday 12/31). We have also sent him an e-mail pleading her case.

If he takes her, she will have to go by medical transport, which her insurance is aware of and they (amazingly) seem willing to do it though of course they can’t approve it until we actually need it.

Dr. Kato is her last chance. She can’t even go back on chemo right now because her sores and legs could never heal.

Her labs are keeping pretty stable though (minus needing blood transfusions, and (one so far) albumin).

I cry every night; especially if I have been to the hospital. The hospital is almost all I can smell. Even when I’m in our apartment.

She vehemently wants to live. She knows she may not survive surgery — if Dr Kato even agrees — but she absolutely wants to do it.

The doctors in the “specialty” floor keep pushing end of life. Keep wanting to talk about end of life.

We have a meeting with yesterday’s “doctor of the day” at 1:30pm to discuss end of life stuff, codes, and all of that. Because the doctor thinks Teresa’s tumor may be hemorrhaging. But the reasons she gave are based on things that have been happening ALL year, and I suspect the Lovenox (blood thinner) may be part of the problem too.

Everyone who saw Teresa’s recent photo loved it. Many of you said you loved seeing her smile. I asked her to smile. It’s not reality. Teresa wants to live but she doesn’t smile much. Neither do I. There’s not much to smile about.

It’s a false face.

Teresa has given me permission to share her reality with you.

She still loves having visitors — but you have to got to be COMPLETELY healthy. You can’t even have a cold if you visit. You can’t have been exposed to anything through family or coworkers. (Same for visiting me — don’t make it so I can’t be with Teresa, please.) If you want to visit, please let me know so we can work out a time and make sure she’s not having any procedures done. If she gets to go to NYC for surgery, I will of course update with that info ASAP.

A gentle reminder, we’re not religious. Please see the Resources page for links that explain this better than we can.

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