Blog Bubble is Burst

My Blogging Bubble is Burst.

Generally the feedback has been good about the blog.  Folks far away like Aunt Doris and Jane and Lori, and my friends in Tucson, think it's great and have thanked me for it.  I was trying to do the right thing and do a good job of keeping people informed, as well as record all of the wonderful things coming out of her amazing brain.  Even with crossed wires, Mom has a wonderfully creative and precious imagination.

But, I'm getting friction about it here, from Mom.  She's concerned that people know things about her that she doesn't even know, and I can see how that might make her feel.  I can't think of anything on the blog that she doesn't know, but it's possible she has forgotten what she was told when she was sicker than she is now, so now she thinks it's news when someone tells her they heard about it on the blog. 

I think she is becoming more self aware now that she's on the Seroquel, and she's maybe wondering about what has occurred when she was sicker, and self conscious that she has been the topic of conversation with so many people. 

She does continue to ask me to give the blog address to various folks so they can keep up on the news, though.

It's hard to know what to do.

Anyway...for now, I'm going to go lighter and not publish as much. So don't think anything's wrong when you don't hear from me every day about Mom.

Today she was great, visiting with me and Chris.  She has quilt pieces for a baby quilt with her that she gathered up Sunday when she was home and is pinning them to get them ready for stitching.  I told her I'd stitch them if she tells me where and how.  She could bring her sewing machine into Autumn, but they don't recommend it.  And her room is getting quite full. 

Marty Kuder, a high school friend, stopped to see Mom this afternoon.

Chris gave her a manicure and we had dinner together at Autumn.  Not long afterwards, though, she was tired and went to bed early.

Took a Little Break, Sort Of

Hi. No posts fog a few days because I went to Columbus and:

- went to a concert with my friend Katrina
- met with my financial planner
- signed the re-finance loan papers for the Murphys Pond property (condo I still own in the Columbus area)
- upgraded my iPhone 3 to a 4
- saw a new chiropractor
- got massage with Chris Hannan
- saw a new acupuncturist (these therapies help keep me more well, keep the fibromyalgia symptoms at bay)
- had dinner with friends
- saw the dentist because I was already behind on my check-ups because of my recent consulting travel.
-ran errands, picked up dog food etc.

All is well with all of the above. Missions accomplished. Benji went too and was a very good boy.

While I was gone Mom has been good. No more incidents of non-responsiveness. I talked to Julie at the James and she said that was probably a seizure and they'll address that with new meds on Thursday/tomorrow when Mom goes back to the James to talk about treatment options.

Mom is doing so much better with the Seroquel that we hope she will be able to understand and participate in that discussion. Mother has not heard the dire things that we have and she really needs to understand her situation and get it from the oncologist there.

Chris and I are visiting today. Dad us taking the day off. He was really exhausted from being with her so much the last few days.

I'm here now though in the lobby worrying about my job. I got yet another call from a recruiter. This guy has 5 positions I could probably fill, but my company hasn't found them and sent me to interview on any. Are they really so nice as to keep me on the bench indefinitely so that I can be here with my family? Or am I going to be let go? There's plenty of work put there and it is in high demand. Why aren't I working then? I get paid while on the bench (between assignments) but how long will that last?

I'm worried.

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"What I've lost in health I've gained in conversations."

We sat on the front porch at Autumn this eveing: Mom, Chris, me, Jenna, John, his girlfrient Cory, and Katy and Benji.

Mother said, "This has been so nice here.  I feel so lucky to have had so many great visits with people. What I've lost in health I've gained in conversations. I've had so many visitors and so much good talk and a lot said that needed to be said."

She did really great all day and was in a very happy good mood this evening.  We plan to bring her home tomorrow for a while.  She wants to eat something besides eggs for breakfast at home and go sleep in her own bed without any noise or anyone bothering her.  So that's the plan, to make that happen for her.


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8 Little Ways to Cut Your Cell Phone Cancer Risk

Seems worth thinking about -

http://www.everydayhealth.com/healthy-living/0601/8-little-ways-to-cut-your-cell-phone-cancer-risk.aspx

Granted Another Day

This morning Dad and I were woken by a call from Autumn at about 7:30.  They were sending Mom to the hospital by ambulance because she was "non-responsive".  We dressed, called Charlie, called the neighbor to get Benji, and left.  We called Chris on the way.  It was a tough ride into the hospital.  We were both pretty sure this was going to be the end.  When we got there, they asked us to wait while they "checked her in", but her room door was closed, which seemed to confirm the worst.

Then they came and said she was awake, talking, and wanted to see us "to tell us the good news" [that she was OK].  We went back and she was completely lucid and alert and knew where she was, and why.  "They said I was nonresponsive."  The doctor came in and examined her and wanted to run blood tests and a CT scan to check for hemorrage.  Both came back normal - for her - little or no swelling, no bleeding, tumors are maybe the same - I didn't see the originals, so not sure, but we'll take it to the James Thursday for their assessment - and they discharged her.  She walked out of the ER and into Dad's van and we took her to Autumn where they had breakfast waiting.

I talked to the nurse who called the squad and she said that at breakfast in the dining room a resident spoke to Mom and didn't get a response, so they called a nurse who also got no response.  They moved her back to her room, but she was dead weight and not conscious for a good 10 minutes.  Then she opened her eyes, but that's all, about the time the squad arrived.  They could not get a BP reading, but she was breathing and had a pulse.

So we had a scare, but have been granted another day with her.  Chris, Jenna, John and his girlfriend and their neighbor Katy came down to visit.  Also Amy and Mr. Neff and neighbor Betty Shoemaker.  Mom played Euchre and Euchred Katie!

I'm back at Mom and Dad's resting now.  After that wake-up I'm not feeling too well.

Her sleepiness and this loss of consciousness are signs of the disease's progression from what I've read.

See http://www.brainhospice.com/ Symptom Timeline if you are brave.

If you talk to Mom, don't mention these events or the more gruesome details.  She's aware of the Blog and is glad people are getting updates, but it un-nerves her when she thinks people know about things she doesn't know yet.

Bless Her Heart

Today when I arrived Mom was surprised to see me. "Becky! You're not in Tucson after all!"

She got turned around in the building today again and didn't know which way her room was.

Dad and Uncle Ted visited this morning and took her to brunch at Bob Evans because she didn't go with Autumn because she had no money. Dad said she did great in that setting but she complained about how bumpy his truck was, that it hurt her head.

As I arrived, so did Rachel and Dan with their 7 month old twins and four year old. We had a very nice visit and there were only a few times Grandma was a little off. I stayed for supper with her and she nearly fell asleep at the table. She wanted to try a jigsaw puzzle that I brought - 350 pieces instead of 1000 like her usual, but which she had trouble with last week. She fell asleep doing that so we called it quits and she was headed to bed at 6:45 when I left.

Otherwise she is good today, contented, happy with her family around her.

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At Peace Today

Mother has been very well today, much more conversational, less delusional, and very appreciative of the kind words and cards and gifts flooding her way. 

Chris and her friend Katy came down to visit, Dad and me, and Charlie and Sadie.  Uncle Ted is expected tomorrow.  She received a nice poster from Katie of photos of their last camping trip with "We Love You Grandma" on it.  She talked with her sister Doris for a long time this evening, on her new TracPhone.  We told her there's a rule she can't talk on it after 9 PM so that hopefully she won't bother people too late with it.

She's still forgetting what the next steps are with her appointment at the James next Thursday, and has to keep asking.  She talked with Chris like she was going to go there for an extended time for treatment and when Chris tried to correct her, she got belligerent and told Chris not to boss her.  I got a little of that tonight helping her with hanging new photos and things on her walls.  She tried double-stick tape, but you had to peel the cover off after attaching it to the paper, and she hadn't done that.  She insisted it would not work and when I tried to show her that she needed to peel the cover off, she got mad.  Last night she was trying to sew a moccasin together (no idea why, the kit seemed to show up in her room, she says she bought it a long time ago) and was trying to put a piece on the right moccasin that was already in place there.  She didn't like it when I showed her the trouble there, either.

Who can blame her!  It must be terrible to see yourself loosing your mental abilities little by little, one by one, day by day.  She needs so much help now, mostly with tasks and task sequencing, and she's used to being completely independent and so active, both mentally and physically.  She is a dear, and I do treasure her so much.

She marveled at all of the nice things Chris and Charlie and Dad and I are doing for her to make her as comfortable as possible there.  I told her we had a good teacher about how to nurture another person - her.

Mom's New Tracfone Number

Dad bought her a new phone today: 740-241-2951

I found this photo in her room and brought it in and she was very glad to have it.


More room photos















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Home Sweet Benji

Benji has done really well at Mom and Dad's. He loved the long walks in the woods. And he hasn't disturbed anything - not even that tray of sand and shells Mom has sitting so low, for little kids to play in. No accidents, no trouble. He gets really excited to go see Grandma and the others at Autumn. He would go in every room and greet every person, if I'd let him. He is my little treasure.

Puzzle

Here's the puzzle Mom had started before she left for the ER that day in July. I finished it, finally.

Comforting Love

Last evening at Autumn there was special entertainment, the Marland Family Singers, who sang country and gospel tunes with kareoke. They were very good and we enjoyed their song selections. Mom sat and sang along with almost every song, remembering nearly all the words. Her voice is deepening, though. She was singing at the tenor range instead of her usual second soprano or first alto range.

While listening, Mom asked Dad for some hugs. She wanted his comforting because her headache pain is bothering her more. Her voice is fading out. She's using slippery elm for that.

Afterwards, talking with me and Dad, Charlie and Susan, she seemed more calm, reasonable, rational, and appreciative than I have seen her in a long time. She seemed to be listening to us, asking questions, and responding more conversationally than we have seen in a while. She had been telling other people about what great support she has had from her family, and they have been commenting about how often we come to visit her. She said that Daddy, especially, has been her rock. That's a real reversal from the frequent tongue lashings he has been getting. Maybe her new medicine is kicking in.

She has been so brave, in such good spirits all the time, talking about, "when this is all over and I get to go home". She has never whined once about the loss of hair where they shaved her head, or the scar, other than to repeat all the time how she has to keep it "as sterile as a cotton ball". I'm afraid that would be traumatic for me. She has been a real trooper, upbeat and willing to work with the staff to do anything for her care. They have her doing daily physical therapy and she said she does great bopping a balloon back to them. They toss it at her and she has to hit it back with a short rod that she holds with her two hands. She said she flunked bean bags very badly, though. They asked her to toss them into a wastecan-size bin only about 2 feet away, and she couldn't judge the distance and get her eyes and hands to coordinate that maneuver.

She is still complaining a lot about the food and the noise. The noise bothers her headache a lot, and the place has bells going off constantly, and sometimes really loud alarms. The nurses seem to get so used to the alarms they don't hear them and they'll walk right past the desk where they're ringing without turning them off. It is maddening, as I found out while we worked a jigsaw puzzle in the lounge area. She finally got to talk to a dietician and they're bringing her non-lactose milk now. But there are still only 2 choices for meals, take them or leave them. Some are good. Some are not so good, and the alternates are usually something cheap and easy like hot dogs.

Mom continues to make friends there and have friends come in. Last evening, their minister was there when we arrived, and a woman I hadn't met yet, a patient, stopped me to ask if I was Carol's daughter. The staff all seem to love her and have a sign up by her door, "Our Little Treasure" which thrills Mom because, she says, she hasn't been called "little" since she was three years old!

She was quite sweet last evening, and it made me remember how I miss the old Mom.

It Is Well

All is well here.  Mom has continued to have visitors - and lots of cards.  She likes it at Autumn, even says she can sleep there, which is saying a lot.

However, her mental state is little changed.  We thought we saw improvement over the weekend in that she was talking a bit slower and listening.  Dad says she seemed better today, also, but when I saw her this evening, she was still quite delusional about what people have said, how she is planning a big show of The Miller Sisters singing to promote Dan (Rachel's husband, the professional fighter), and I heard the whole litany of complaints about The James, Autumn healthcare, the food, the noise, etc. 

Noise in particular seems to be bothering her more.  It makes her head ache, she says.  And we're noticing a small tremor in her hands.  She is reading the newspaper well, though, even read it aloud to me, but fell asleep for about 2 minutes and then continued as if she didn't know she had.  She continues to scrawl mostly indecipherable notes about her plans on the margins of every scrap of paper, and continuously rearranges the things in her room.  She is very restless, physically, but emotionally seems at peace with her situation, other than complaining about lots of people and worrying that various ones are jealous.  That's a continual theme, that people are jealous of her.  Her "nightmare state" seems to have her dwelling on grudges, or worrying about confrontations, or grandly dealing with them.

I find myself just going with whatever she says, nodding, agreeing, supporting her and comforting her about the injustices she's worrying about even when I know she's spouting nonsense.  The few times I've tried to contradict her or set her straight on some facts or suggest that she ease up on certain topics that are upsetting Dad, she just gets belligerent with me, so it's no use.  I can't seem to get through to the Carol I knew very often now. 

Tonight I just sat doing a jigsaw puzzle with her and nodding and sympathizing.  It's ironic that she needs that because she's the first to spit out adages like "Don't sweat the small stuff" and "Get 'her done!", but then she doesn't listen to her own advice.  I'm not sure she's capable of consistency within a 10 minute conversation any more.  And she definitely contradicts herself many times in the course of a day, repeating the same stories, quoting people as having said something they didn't.  I know this for sure because I've been present at conversations that she later re-tells and I find out she's attributing things to me that I never said.  The conversation topic is correct, and the general gist, usually, but the details are turned around and re-arranged into a bit of a different story.

This stuff infuriates Dad, and he stomped out yesterday when she attacked him for the umpteenth time, and he stayed out for a while.  I've been getting through it OK most of the time and am able to go to Autumn with a happy heart.  The only time I wanted to fly away was on the drive home from the James Friday, and yesterday during church at Autumn.  The pastor was going on about the Anti-Christ, the Rapture, and The Second Coming, and I thought, "OK, I'm totally miserable now.  Completely and totally miserable."  But then Mom gave me something to worry about as she kept interrupting him to say, "Amen" and "Right!" and "Get 'er done!".  She never totally stopped him, though, but at the end got up and went to the podium to tell a story about Dad's corn crop this year, how he planted corn for grinding cornmeal and it got knocked down by the winds of a storm, then stood itself up again.  She thought it was an amazing miracle she wanted to share, which was nice, but the other members of the congregation were looking at her like, "Why is she up there talking to us?"  And they had good reason to be puzzled.  She just told that brief anecdote and stepped away again, so luckily I didn't have to intervene to drag her away from the bully pulpit!

She has been planning Amy's wedding in greater detail than Amy has, in some cases, but says "They're just ideas, she can take them or leave them."  But she tells them over and over to lots of people like they're fact and as though she has already talked with Amy about them.  So be aware that Amy's wedding may be very different from what Carol is "planning",

She has decided to have her own quilt show and have it be a benefit for Autumn healthcare, to buy a piano.  The one they have sounds awful.  So she has started planning that event.  In general, I've been supporting her notions, telling her I'll help her, but some of these are getting pretty impossible.  I don't look forward to having to tell her that we can't do it - or that she shouldn't do it in her current state of health.

She has become curious about why I'm not going back to Tucson and asks me every day about it.  I don't want her to see my staying as a sign that she's more critically ill than she knows, but I don't want to go back just now, either.


I'm not sure what to think.  We hoped that the Seroquel would give us a respite from her worst hyper-talk symptoms, and help her be more cognizant of her situation.  I'm not seeing that yet, really.  I'm a bit down, actually, starting to feel the confinement in this lifestyle here.

But...I have good things this weekend to look forward to. My friend Katrina in Columbus invited me to see David Tolley in concert, an excellent pianist and composer who goes to her church.  I'll go over Sunday and spend the night, come back after a bunch of errands and appointments on Monday.  Hopefully I'll get to visit Rachel and Dan and kids, too.

Fibro patients more likely to fall

OK.  They already determined that I'm older than Methuselah (brain-wise), now they're finding that people with fibromyalgia are 7 times more likely to fall, that middle-aged patients have the fall rate of the average 80 year old.  No wonder I can't ride a bike any more!  I decided to stop about 10 years ago after splatting in the street one too many times.  And, after too many splats, I'd been told by family, "You can't go high.  You have to work at floor level, no ladders, no climbing up on counter-tops."   And I'd been so pleased that I could paint ceilings by walking on counter-tops.  One of the few advantages of being short.

9 Aug 2011 Press Release

http://www.fmcpaware.org/9-aug-2011-press-release

National Fibromyalgia & Chronic Pain Association applauds new study shedding light on relationship between dyscognition (fibro fog) and balance deficits

In recent surveys, persons with fibromyalgia reported balance problems as one of the top 10 most debilitating symptoms....

How Do You Hold a Moonbeam in Your Hand?

How do you catch a cloud and pin it down?
How do you find a word that means Maria?
A flibbertijibbet! A will-o'-the wisp! A clown!

Many a thing you know you'd like to tell her
Many a thing she ought to understand
But how do you make her stay
And listen to all you say
How do you keep a wave upon the sand

When I'm with her I'm confused
Out of focus and bemused
And I never know exactly where I am
Unpredictable as weather
She's as flighty as a feather
She's a darling! She's a demon! She's a lamb!

She'd outpester any pest
Drive a hornet from its nest
She could throw a whirling dervish out of whirl
She is gentle! She is wild!
She's a riddle! She's a child!
She's a headache! She's an angel!
She's a girl!

How do you solve a problem like Maria?
How do you catch a cloud and pin it down?
How do you find a word that means Maria?
A flibbertijibbet! A will-o'-the wisp! A clown!

Many a thing you know you'd like to tell her
Many a thing she ought to understand
But how do you make her stay
And listen to all you say
How do you keep a wave upon the sand

Oh, how do you solve a problem like Maria?
How do you hold a moonbeam in your hand?

This song from The Sound of Music describes how I felt today after spending so many hours with Mother. I found myself singing it while dead-heading her flowers this evening.  Dad and I were both ready to scream with irritation at Mother by the time we returned from The James today, in spite of having to face our fears about her cancer and discuss options with the neuro-oncologist, Dr. Cavaliere.  She talked with every breath the whole way over, through most of the meetings with the doctor and counselors and the entire way back.  Literally, every breath she took was a sentence, as though she has a compulsion to tell us everything she's thinking, over and over again. 

When you spend that much time with her, you start to hear the replays, and for Dad that becomes especially irritating, especially when they are fictional and fanciful.  He keeps thinking she should know better and straighten up, and he has not yet gotten to that place of acceptance.  I have somehow accepted who she is now, how she is now, and stopped expecting that she should be the Mother I knew two months ago.  Generally, I can tolerate her chatter, but today, with our nerves so on edge about being back at The James and having to talk with an oncologist, we had a very hard time staying patient with her.  She chattered through the meeting with the doctor and we had to remind her a lot that it was supposed to be a "Quaker Meeting".  At one point she got pretty angry with me when I hushed her, but oh well.  Someone had to do it.

This is what we talked about:

Summarized her history to date:
Diagnosis - Brain Tumor 7/29/2011
Admission at James 7/29/2011
Surgery 8/3/2011
Discharge from James 8/10/2011 to Autumn
Followup at James 8/19/2011, today

Headaches at pain level 3 today, needs Tylenol every day for headaches.

Dr. Cavaliere discontinued her Heparin (injected blood thinners, the ones they put in her stomach, making her look like "Carol the Cheetah" because of her bruising), her Zocor (for long-term control of cholesterol build-up, not worthwhile at this point, not worth the side effects), and Keppra, the anti-seizure medication that they had her on as a preventative measure.  She never had a seizure, so there is no need to continue this.

Standard treatment for this type of tumor is radiation, every day for 6 weeks, Monday through Friday, and chemotherapy given by pill 7 days a week.

Additionally, Dr. Cavaliere offered a drug trial, an experimental test drug targeting the blood vessels that the tumors have built into her brain. This tumor lays down roots to anchor itself and this is why it is so hard to surgically remove.  The study is being done in a lot of organizations and it's a "blind" study, meaning half the people get placebo.  It has been going 7 months so far.  The drug was approved for use in trials in the US only a few months ago.  It's a "molecular inhibitor" which targets VEGF, the stuff those tumor roots are made of.  To be in this clinical trial, she'd need to be resident near The James for the full 6 weeks.

Side effects would be fatigue during the 5th and 6th week, both physically and mentally.  That gets better once treatment ends.

She should expect sunburn on scalp and hair loss from the radiation.

The chemo causes nausea, but that can be well controlled with meds.  Constipation during chemo is very severe, so they watch and treat that aggressively.

There is residual inflammation from her surgery causing her symptoms now (the manic chattiness, fantasizing).
"Hypervigilance" is the doctor's term for her hyper talking and wakefulness.  Dr. Cavaliere is hopeful that much of this will resolve as she heals.  Additionally, he is giving her a drug, Seroquel, at night, that should help calm her and ease the talking mania.  The hyper-mouth-brain problem is caused by the neurotransmitters firing too rapidly, and this drug helps to slow it down to a more normal pace and will help her to rest.

He stated that the goals of their program at The James is "Quality of Life and Being Home", not unnecessary extension of life, with little or no quality of life, so Quality over Quantity.

Treating the tumors will help treat her symptoms.  We could expect to see her mental state improve.

Chris asked him, "If this were your Mother, would you treat her cancer, or not?"  He said he would treat it.  With treatment, her life expectancy would be about 12-18 months, with pretty good quality of life, usually.  Without treatment, average life expectancy would be 3-4 months.  Remember these are statistics and every case is different.  His counselor, Julie, told us that a lot will depend on how her body reacts to the chemo.  Sometimes the bone marrow does not do well and they have to stop the chemo treatments.

She can get her radiation treatments at Southeast Medical center in Cambridge.  They have different brands of machines and technology than The James, but it's not very relevant.  The treatments would be essentially the same at The James or at Southeast Medical center.  It's pretty standardized now.

Mother's tumors probably developed to Grade 4 in the last 3-4 months, only.  It originates in the brain and grows very fast.

Symptoms to watch for and report in the coming months: changes in cognition, changes in gait, decrease in visual-spacial ability (interacting with objects around her successfully), arms and legs weak or uncontrolled, loss of vision.

Treatment will probably start 3-4 weeks from surgery, after she has healed more, and the inflammation resolves.

We talked about the options among ourselves, and were again unanimous that to try the clinical trial would be foolish for Mom.  There's no telling whether it will help, or whether she would even be in the 50% to get the medication. Being experimental, it may do harm, and the travel required to be at The James for 6 weeks is prohibitive for both her and Dad.  She is happy and settled at Autumn, with lots of new friends and neighbors nearby, where the nurses can control her chemo dosage and monitor side effects, and it will be a very short bus ride to Southeast Medical for her radiation treatments.  And she can come home as much as possible, to visit, once she is more oriented to her surroundings and her brain is less fantastical. 

Her physical strength, her aerobic fitness, and her strong heart are to her advantage, and although older people sometimes have less success with the therapies, Mom has a very good chance to beat the statistics.

So, we decided to go with chemo and radiation, at Autumn Healthcare and Southeast Medical Center, not The James.  And no clinical trial.

Treatment would begin 3-4 weeks from her surgery, or somewhere between August 24th and 31st.

But - we have a follow-up appointment with Dr.Cavaliere at The James on September 1st at noon to assess how she is doing on the Seroquel.  She is doing so well, in general, that he would like to let her to participate in her treatment decisions, and he is hopeful that she will be able to by then.  As she was today, she could not do this rationally.  But seeing her active mind so "almost there", as he could today, Dr.Cavaliere wants to give her every opportunity to express her feelings and thoughts about it before it begins.  We do too.

"Quaker Meetings" and "Tapping Out"

Mom just keeps coming up with these cute things I have to share with you. 

She said that at physical therapy today when she kept talking so much, she set up a code-word for "shut up" with the therapists.  If they say, "Quaker Meeting, Carol", she's supposed to hush and stop talking and give their ears a rest.

Also, she had a recent talk with Rachel's husband, Dan, that she keeps talking about.  Dan is a professional fighter (mixed martial arts) and she worries constantly that he will be hurt and his family needs him so much.  I'm not sure if she really had the conversation, but she says that he assured her that if the fight gets too bad and he needs it to stop so he won't get killed, he can "tap out", and the referee will stop the fight.  She has been so relieved about this that she tells everyone about it.  And she is now also using "tapping out" to mean "shut up, Carol".  Like she did when she hushed her own mouth, she's now tapping her arm, saying, "I need to tap out.  I'm talking to much again." 

Her awareness of her blather has increased over the last 2 days and she is more easy to converse with.  She still wants to run on and tell stories, but it is slowing a bit.  Her awareness is making it easier to hush her a bit, which I had to do at the cardiologist's office so he could talk, and she took it OK.  A week ago that would have set her off.

I'm hoping that will make the meeting at The James easier tomorrow.  I've been concerned that the doctor won't be able to have a meeting because Mom will keep trying to run off with the show, on some unrelated topic.

We have a family counsel with the neuro-oncologist at The James, tomorrow at 1:30.  Dad and Mom and I are going together in their Torrent, and Charlie's gang is going separately because they're going to visit Rachel and Amy wants to shop for bridesmaids dresses while she has the chance to get to Columbus.

Nicknames

Mom has been stuck on nicknames a lot lately and I learned some of hers I never new. 

Grandma Swain used to call her "Granny Grump" when she was a kid because she so often had tummy ache.  Turns out she probably had lactose intolerance even then, and hypoglycemia. 

Her brother Bruce used to call her "Carollee-bum", blending her first and middle names together.

The nursing home put up a sign at her door, "Our Little Treasure" and she loves that!  She said she had not been called "little" anything since she was three, probably.  Her mother and sisters were more petite than she was, so they always picked on her about being big.

Cardiologist Today

Dad and I went with Mom via the Autumn bus to the cardiologist in Cambridge.  It was a short visit.  He was very impressed with her progress since surgery.   Her BP was very low, so well under control.  He said that her heart is the least of her worries at this point and he set a followup appointment for February.

Misc Photos from the last week or so

Jenna twirling her flag at the festival

Ben at Katrina's house

Benji and Sammy sacked out at Chris's

Amish Country

Mom at Autumn Healthcare

Doing Corn

Happy Birthday, Carol!

This evening we had a birthday party for Mom at Autumn.  They set up the conference room with tablecloth, balloons, paper plates etc. and punch and water, and Chris baked a zucchini cake for us.  Aunt June brought a floral-decorated cake. Aunt Susan brought a veggie tray. Lots of folks came down from the Akron area:  Aunts Peggy and June, Uncle Ted and Cheryl, cousin Pam, second cousin Phylis, and great-aunt Garnet.  Then from this area, my brother Charlie, his wife Susan, daughter Amy and fiance Mike, daughter Sadie and boyfriend Kyle, me and Dad and Benji.  Guests from the home were a pastor, a pianist and a new friend, Mina.

We had a prayer, piano music, old Miller Sisters cassettes, and readings.  Mom asked Sadie to read the adages and quips from a book neighbor Betty Ford made and sent to Mother.  Mom read Bible verses from a set that Faith and family sent as a gift.

Mother received a lot of really nice gifts: fall decor from Aunt Peggy, one of those puffy bulletin board things with ribbons from Pam, pretty fluffy warm pink socks from Aunt Garnet, pink PJs, books, posters by Sadie of all the Miller grandkids and great grandkids, lots of other things I can't remember, and tree book (for her rain forest), quilt books, and a Treasure Chest from me.  Mother has been telling us that The James named her, "The Treasure", and that she has lots of treasures, so I found a box sorta like the hat-box style, decorated with butterflies and with a handle and clasp a little like a Treasure Chest.

Earlier in the day, Chris had come down and brought Mom some pretty new birthday clothes and PJs.  She and I decorated Mom's room, and Chris set up closet organizers and a small chest of drawers.  Mom had neighbor visitors this afternoon, too, and got her staples removed from her incision.

If you had looked in on us at certain times this evening, and from a certain angle (in Mom's case), you would have sworn nothing was going on with Mom's health or mental state at all.  Chris had combed her hair in a center part so that hair fell over to cover most of her incision, and it doesn't look nearly as ghastly as it did, and the hair around it is growing back.  She was doing amazingly well today.  She is starting to take a few breaths so that you can converse with her, actually get a word in edgewise, and she was able to run the show, telling us what she wanted to do next and when, and she read the Bible verses Faith sent, which were hand written.  She may have known them almost by heart, though.

At other times, she still told stories and said things that didn't make any sense at all.  Chris said she complained of not being able to see as well this morning and repeated lots of stories, some we had not heard since she was at the James, and some of them she told twice without knowing it.  She comes into the building from outside and doesn't know which way her room is, although she has taken a lot of walks and entered from outside many times already.  And her belly is bruised from the subcutaneous shots of short-acting blood thinners she continues to get.  When she's not calling herself, "Carol, the Treasure", she calls herself "Carol, the Cheetah", because her belly is so blotched with large dark purple bruises from the injections.

Her walking is stronger and stronger and she sometimes forgets to bring Evinrude along, which is against the rules.  When she does something bad, she slaps her mouth lightly and says, "Bad Carol", then her fanny, and says "Bad Carol", again, like a little kid might do.  She has stopped asking about going home, which is puzzling considering how much hell we caught about taking her to Autumn instead of home, and how much she has wanted to go home. It will probably come back, though.

One of the things she enjoyed today was taking the chocolate-covered strawberries that Doris and Jane sent special delivery to folks around the home.  She set them on Evinrude's seat and carried them with her that way.  A friend brought her a little bag to hang on Evinrude's handle, so she can carry things there, too.  She has a TV and VCR, as well as the cassette player in her room now, too, so she's getting pretty well settled in.

Party pics!

Dahhh da dahhhh da dah dah dah dah, Dahhh da dahhh da dah...

Mother has decided she wants to dot the "I" at an Ohio State football game.  She has been practicing the fight song, yelling, "Go Bucks!", and marching with Evinrude up and down the halls, going, "Dahhh da dahhhh da dah dah dah dah, Dahhh da dahhh da dah...."

I asked, "Mom, when did you get to be such an Ohio State fan?"  She never liked football at all in the past.  She said, "Well, I was at the James Cancer Hospital in Columbus, and I could see that arena outside my window all the time [which was true] and I kept waiting for that band to come and practice.  I could go practice with them, don't you think, even if I have to have a wheelchair?  I could dot the I with a wheelchair if I need to.  I think they oughta let me do that, don't you?  I mean, it's a medical emergency, right?  And I'm a James Cancer Hospital patient!"

Unbelievable, the things that the mind comes up with and stores, and the things created when it short circuits.