When I first saw Erin this morning, she was all excited because Steve had called and said that he had hired a babysitter for tonight (Mišelka is on vacation), and Steve and Erin were going to go out for dinner. So, Clark and I decided that we would also go out and use a gift certificate to the nearby Greek restaurant.
But, when I got home this afternoon, Erin said she didn’t feel like getting dressed up to go out, so Steve was bringing food. We followed through with our plan to eat out. Erin and Steve didn’t care for their Pita Pit food. Clark loved his lamb shank in brothy sauce.
Erin’s fellow glioblastoma friend “Bea” came up from the SF Peninsula today. Shannon was here when Bea arrived, and the 3 of them went to lunch at Roxy. (That is the restaurant that we went to, Geraldine, when you were here.) Before eating, Erin ordered a chocolate martini which they all partook of and claimed it delicious. Erin wrote down the recipe which the waitress told her:
1 oz creme de cocoa, 2 oz “stoli” (Stolichnaya) Vodka Shake with ice.
Bea is vibrant. I wouldn’t know that she had ever had a tumor. She is working part time now. But, Shannon told me that Bea said that she makes lists on her phone, so that she can remember things required at work. She also records things on her phone. She has learned to work around her deficits. Her tumor was on the right side.
After Bea left, Shannon said that her husband Chris had the day off and he said that Shannon could enjoy the day as she wished, so Shannon and Erin ran errands. These included a stop at Toys ‘R Us where Legos were on sale. Erin had Shan stop at Del Taco where she picked up bean burritos for dinner. Bea, Erin forgot about your Mediterrean style turkey meat loaf. I look foward to cooking it tomorrow instead.
When I asked Erin tonight how she felt, she said “Louzy”. Taking the pain pills have left her lethargic. She said that she slept through Colleen’s visit. Colleen came for an hour and 15 min tonight before Barbara, the hospice volunteer, came, so that Clark and I could have sushi with a friend who had just arrived back from Argentina after 3 1/2 weeks of hiking there. The friend was so glad to have something besides well-done beef and salami.
Happy Birthday, to Erin’s cousin, Janet!
Today is cleaning women day, so to get out of the house Clark and Erin went to Famous Burgers for lunch. (Lisa, that is where you took Erin last week.) Erin wanted her hambureger with m____. Mustard? No, mushrooms. Clark says she is good at finding places, but can’t always say the words. She knows where places are and directs Clark to the best route.
After lunch they went to Trader Joe’s. She pushed herself around in the wheelchair while Clark pushed the basket which Erin added items to. Erin loves Trader Joe’s. Clark said she found stuff pretty quickly, such as Irish butter.
Cindy came by tonight on her way home from work bringing tacos for Erin. I had a table of bridge, so they ate in Erin’s room. Cindy stayed for a couple of hours after a long day of work before heading home to husband and 3 daughters. She is amazing.
Erin says her headaches have been sort of up and down all day. She feels the pain, but the drugs sort of help her accept it.
Ardys, the hospice nurse, was here today. One of the first things the hospice workers ask Erin is if she is in pain. Erin has been having quite a bit of pain extending from the neck to the face due to the iatrogenic Cushing’s disease. So, Ardys suggested ibuporfen and another pain pill 3 times a day to try to keep the pain under control – before it really develops. So, I think Erin is now on 19 pills a day! Oddly enough, Ardys said it was ok to have alcohol. So, when Colleen and Deke arrived with champange Sunday night, Erin could have had some afterall, even though she had taken a pain pill.
Today was Deke’s (Colleen’s significant other’s) 50th birthday. It would also have been my father’s 112th birthday … he was born in 1900, so his age was always easy to remember.
For Christmas, Colleen had given Clark a very generous gift certificate to Ruth Chris’ Steak House. So, we had kept saying we would use it sometime when Deke was in town. So, tonight was the prefect opportunity. Brandon met Colleen and Deke for drinks at 6 pm, so they were there when we arrived at the appointed hour of 6:47 pm. The 3 guys were on stools at the bar, Colleen, Erin, and I were in chairs at the end of the bar right next to them. Around 7 pm Brandon and Colleen switched places.
Then Lisa and Beck called that they were outside waiting for Brandon, and the other 5 of us enjoyed a leisurely dinner. Colleen, Erin, and I had blackened scallops on polenta, choice of soup or salad, and side of spinach or other veggie or potato, and dessert of flourless chocolate cake for a prix fixe. Clark elected the rib steak and Deke had lobster and steak with banana cream pie and candle for his dessert. The guys ordered 3 different appetizers, so by the time dinner came, I wasn’t hungry and brought half of mine home. We closed up the place at 10 pm. Now I realize why all of the young guys were standing around waiting to go home.
Erin was having headaches off and on all day,but rallied for the dinner.
Colleen. She is the sister. For two house she tell that were funny. I was in a bad humor. She pulled me out. That is the thing, you never when something is interasting. She was telling stories. A lot of …interest http://en.wikipedia.org/wiki/Charles_Manson
It’s 11:30 pm and Colleen and Deke just left after a 2 hour visit. Colleen had been gone to Carpenteria and Ojai for the week. They came home by a circuitous route to avoid the monotony of I5, so arrived home this evening. Their visit was a real boost to Erin who tends to get blue at night.
Colleen called late this morning needing someone to pick up Wheeler who had spent the night with at a friend’s house in Carmichael. Brandon called a few minutes later and wondered if there was anything he could do, so I sent him to get Wheeler.
Steve and the boys arrived at noon just as the bath giver arrived, followed soon after by Brandon and Wheeler. Paco loves to hang out with Wheeler and play video games, though Paco and I did play one game of Kings Corners before he went over to Wheeler’s.
Erin’s tension headaches seemed worse today. Colleen says she, too, has been having them.
Today was a day for late sleeping, no helpers, no visitors, and no outings by any of us. …so, no news!
Erin saw Dr. Adams, her oncologist, today. He said that she is holding her own. He didn’t recommend an MRI. He said that it would just show that the tumor was growing and would be discouraging.
I mentioned that Erin has had tension headaches originating at the back of the neck. He said that they are due to her friend, decadron, the steroid that she needs to take to reduce swelling in the brain. He says that the decadron causes a layer of fat at the back of the neck between the shoulders. The fat accumulation is called “buffalo hump”. She has iatrogenic Cushing’s disease. Iatro = doctor, genic = cause or origin. So, it is a doctor induced form of Cushing’s disease, due to the cortisone medicine the doctor prescribed.
Dr, Adams said that the steroid puts on weight around the middle and there is a thinning of fat in the arms and legs. I read that the disease also causes the reddish purple striations that she has around the middle because the steroid has caused a stretching and thinning of skin.
The decadron could also have changed the shape of her eyes and caused the change in prescription for glasses.
Dr. Adams said that Erin can’t control when she will die. He cautioned her to resist the temptation to control the future and to focus on her quality of life with her kids.