The "T" Word

Mom and I have been running around all day today, starting with a 10:30 appointment with her GI. Keep in mind, that's early for her.

I had a few minutes to talk to the doc before she came into the room. I told him about this last weekend, Mom's many "blackout" moments, where she isn't herself and doesn't remember the episode later. I told him that I'm not sure if it's the HE or not, but she gets very aggressive and hostile and even abusive, and doesn't remember it, doesn't believe me, and it makes it very hard to care for her. This weekend, she threatened to kick me out, shut off my cell, and tell the cops I stole her car, all about three minutes after telling me that she hates to see me sad, and that she wants a normal life for me, and that she's sorry to put me through this. Being that I've already been very much overwhelmed as of late, and that I know I can't continue at this pace because I'm worn out and the to-do list doesn't get any shorter. This Sunday was pure hell, and I found myself terrified by my own mother for the first time in my life.

The doctor said this is HE, and he recommended tertiary care - a hepatologist at a transplant center that he knows well and used to work with. He's sending us to UCSD. He tried explaining it to mom, but she didn't understand how the loma linda doctors said she's not so bad, but this doctor said she's very sick. He actually said, "your liver is very sick." He was gentle, but there's not much you can do to soften the blow that you need a transplant and could die soon. He said that the ascites occurring even with diuretics is a bad sign of end stage liver disease, and so are those missing blocks of time. He said she's shouldn't be limited to 1g of salt a day and still be gaining water weight. I guess her body has been giving us signs that we didn't know how to read. He said that 70% of patients with uncontrolled ascites die within 2 years. She's already beaten those odds, which makes it less likely that she'll continue to do so. His office is scheduling her for parascentesis to remove the fluid in her abdomen, sending it to a lab for testing (he thinks the fluid might be infected), calling off the hernia repair, scheduling a ct scan to see how urgent the hernia repair might be, and sending us to UCSD. Mom immediately started crying, saying she's not ready to die.

The rest of the day was hard for us. Traffic, labs, x-ray, waiting rooms, cath change. Mom couldn't find her pain meds, so she took anti-anxiety meds. I've told her a million times that these are different meds for different things, but she doesn't remember or understand, not sure which. She nearly fell asleep during the cath change (awkward) and had a hard time walking from tne car to the house, stumbling twice and falling on my car.

So, the "T" word. I refuse to get my hopes up and dare to think that she'd get a miracle transplant that would make everything better. I am, however, expecting an initial denial from the insurance company to send us to UCSD, and I fully expect to write long and expressive letters to describe exactly how much a referral is necessary and exactly how determined I can be. This disease is making my mom a monster (have you seen the documentary?) and if they deny her treatment, I'll send her to live with them until they change their minds.

I finally made contact with someone who might be able to help with the one night stand fundraiser. It looks like we might be able to hold the auction in old town temecula. I'm hoping to join another artsy fundraiser in october. There's going to be a great street art festival there next weekend. I plan on visiting and seeing what artists might want to join the cause. It should be fun, and families are welcome to come get some chalk and some asphalt and make their own art. Everything is supplied for you, except the creativity and camera. Tomorrow is the summer bazaar at the temecula valley museum. I'll be there with Shelly (In Stitches by Shelly B. on facebook) and the incomparable Miss Aneita B (Seraphim Catering on facebook). We'll be by the concession stand, selling handmade jewelry (Shelly does great work with vintage buttons), knitted and crocheted awesomeness, antiques, decor, and collectibles. It should be huge. I hope to earn some money, enough to...you know what? It's been so long since I could afford anything, I don't remember what I might have needed. Caregiver time would be nice. A haircut, maybe. My shoes are wearing so thin you can see my socks through them. Oh! I know! Gas in the tank to hit moreno valley for that x-ray of my shoulders to see why my arms keep hurting so badly. It's good to have a plan.