A Very Joyful Christmas

Christmas Day

Michele had perhaps her best day in a month, aided by having good friends over for a semi-traditional British Christmas dinner prepared by Mae.

Geese are not common in Austin, so we had duck, which I suppose is kind of like a little goose, but not as greasy.


Mae began her work on the Christmas "pud," shown in the photo, days in advance. Her pudding was delicious, even for those who are not used to the Brit's style of cooking.

Mae came to Cat Mountain Christmas morning, took command of the kitchen, and spent all day preparing the dinner. She did a wonderful job and made Michele very happy--perhaps the best Christmas present ever.

Ups and Downs

The Roller Coaster

11pm Saturday 18 December 2010

We never know what a new day will bring. Some days Michele is almost like her October 2010 self, other days she has very limited communicative ability and only wants to stay in bed all day and sleep. On those days, we must cajole her to do anything else.

She has lost about ten percent of her body weight in the past two months. Add that to the ten percent she has lost in the last year and a half and she is down to 85 pounds.

She still enjoys short visits from friends and has done a complete turn-around concerning therapists. Now that the evaluations are completed, they ask her what skills she wants to develop.

The speech therapist is working on a picture book. It is similar to foreign language traveler’s cards. Michele can simply point to a picture to show what she wants to discuss, say one of her grandchildren or a doctor. Food items are also included. The book gives us high hopes.

On her good days, she moves around the house with her aid and the walker, and is able to stay up for about an hour and a half each trip. Her driving is improving, but she is not ready for traffic yet. After last week’s trip to the doctor in her walker, we got a wheel chair for trips outside the home.

We have two or three routine doctor trips planned for next week, but we do not expect anything exciting to happen.

Next posting next weekend.

RKS

Quiet Friday

　

Easy Day

2345 Friday 10 December 2010

Not much happened today. A nurse came by to refurbish Michele’s port and a speech therapist tried to get Michele to talk to him -- with little success.

This was our first day with our new “Vital Signs Monitor.” At ten o’clock, the monitor started asking Michele to “Step onto the scale,” which, of course, Michele ignored. A minute later, it repeated its request. It continued to nag, so, always being a management challenge, Michele left the bedroom for the kitchen for a second cup of coffee. She hid out there while the scale continued to plead for a full half hour. When it finally shut-up, Michele returned to the bedroom.

But the scale was not about to give up. It secretly phoned a cohort human who then phoned Michele and asked her to step on the scale. Michele then handed the phone to me. I promised to endeavor compliance. Every two hours the scale or its cohort requested Michele to step up to her duty until I unplugged the machine and blocked the phone number. We shall see how cooperative Michele might be tomorrow.

Things seem to be settling in to a routine of two daily activities with a lot of sleep, so this blog will switch to a weekly summary unless something different happens. Check back in on Saturday, 18 December.

RKS

Worn Out

　

Too Pooped to Pop

830 pm Thursday 09 December 2010

Michele was booked solid from 10am to 2pm today and it wore her out. The 1pm therapist finally just moved Michele’s arms to determine her range of motion while Michele slept. Kind of funny to watch, but it was also very sad.

We had to cancel the afternoon speech therapist. What could he do when the only thing Michele could say was “ZZZZZZZZZZ?”

We only have one activity scheduled for Friday.

RKS

PS: The 15 Dec social has been canceled.

Busy Days

Early to Rise (for Michele)

1150pm Wednesday 08 December 2010

Michele was up this morning before 9am to get ready for a busy day.

We saw a psychologist this morning. He began evaluating her amnesia. The physical therapist worked with her on balance exercises.

I am beginning to be comfortable giving Michele infusions (IV) through her power port every six hours. ( Yes, we are talking about 4 am infusions. ) My high school guidance counselor warned me to stay away from “touchy-feely” occupations like nursing and social work and to stick to math-science-engineering stuff. I wish she could see me now as Bob Schultz, home health care nurse. However, in my counselor’s defense, some observers have stated that I still could improve on my bed-side manner. No matter, I get the job done; on time and on budget.

Tomorrow is packed with more therapy and exercise. In her spare time we hope to get her to go outside on the deck.

She is beginning to get motivated to accept the home rehab program and no longer says “No!” to everything she does not like. She is beginning just to give us all dirty looks--which is a big improvement from “The Look.”

RKS

Resting

Sleepy Time Down South

11pm Tuesday 07 December 2010

After a busy day yesterday with the surgeon and entertaining visitors all afternoon, today Michele lived a life of ease by sleeping the day away. We woke her up at 10am for her meds; she had a cup of coffee and immediately fell back to sleep. So much for a caffeine high. We woke her up for her 4pm meds, and again she went right back to sleep.

She finally woke up herself at 630, and said she was hungry. She went back to sleep immediately after dinner.

Not a very exciting day.

RKS

　

Doc Report

Getting There

930pm Monday 06 December 2010

We went to a post-operation appointment with Dr Kit Fox, the surgeon, today. We reviewed last week’s MRI and CT scan.

No cancer was observed. Michele does have some other problems with fluid collection and pressure. Dr Fox thinks that the fluid accumulation will be reduced over time as Michele’s brain heals. There are a few patches of blood in several areas of her brain. There is nothing that can be done about the blood patches and they will be watched closely.

The infection appears to be under control. Michele will continue the every six hours infusion treatment through early January.

Dr Fox believes that Michele should recover from the Thanksgiving eve surgery in three to six weeks. Our next appointment is scheduled for Monday, 27 December.

Dr Chadha, the oncologist, may restart chemo treatment in mid January.

========

Michele had her first home visit from a physical therapist today. They worked on using the walker. She does not drive a walker any better than she aims her automobile. She sometimes gets frustrated and simply carries the walker in front of her. I guess that she would put it down on the floor if she started to fall. I learned today that using a walker is not as easy as it looks.

She made progress today in all areas, although as always, she does much better in the mornings and experiences great difficulty talking if she does not get to nap from about 2pm to 4pm.

In summary, we are getting there, but still have a long way to go.

RKS

Progress

Gaining Strength

1130pm Sunday 05 December 2010

Michele continued to improve in all areas today.

For the first time in several days she was able to talk on the phone.

Small steps to recovery.

RKS

At Home

The First Day

11pm Saturday 04 December 2010

True to form, Michele spent most of her first full day at home sleeping.

Her physical abilities are improving. In the short time she was awake, she walked (with help) to several rooms and sat in the dining room and kitchen. That may not sound like much, but remember that Michele was flat on her back for two weeks in ICU and could not even roll over without help.

She still has all of the same mental problems (disorientation, speaking, word selection, intermediate memory) evident before and at the hospital.

Our 24 hours a day helper staff has been fantastic. We could not have come home without them. I do not think that I have ever encountered a more helpful group of people.

RKS

Home

Back on Cat Mountain

10pm Friday 03 December 2010

We came home this afternoon. 'Nuff said.

RKS

Looking Better

Home Friday ??

10pm Thursday 02 December 2010

For Michele’s birthday present, Dr Fox said tonight that Michele might get to go home Friday. This time I think that he really means it.

The wound area from the surgery was tightly wrapped all day and the fluid bulge did seem to decrease in size. Dr Fox has also ordered a head scan for early Friday morning. If the fluid bulge continues to subside and if the scan looks good, we can go home. Warren and I have arranged for 24-hour home assistance help standing by to tend to Michele’s needs and to allow me to finally get some solid sleep.

Never one to let an opportunity slip by, Mary Ann organized a birthday party for Michele and carefully filled the room to capacity. Nurse Meanie would not allow us to light the candles. But she did allow the crowd to sing “Happy Birthday. “

Wish us luck tomorrow.

RKS

　

Fluid Problems

A Step Backward

10pm Wednesday 01 December 2010

No progress today. Michele slept most of the day.

We are experiencing severe fluid build-up in the surgical area between the scalp and the skull, but no leaks.

RKS

Slow Progress

Not Much Change

9pm Tuesday 30 November 2010

Not much changed today in Michele's condition. Various re-hab folks came by and Dr Fox cleared her for moderate exercise. She is back on a regular solid food diet.

RKS

Some Progress

Dr Fox removed the drain tube between Michele’s scalp and skull this morning. The fluid collection volume has decreased every day since Thursday.

We are still in room 201 but will move up to room 403 later in the week.

Dr Fox believes that we may be able to go home next week. Warren and Robert are working on selecting in-home care workers this week.

Michele now understands almost everything said. She is doing better talking, but that is relative to last week. She also experienced medium time period disorientation today.

RKS

Moving Day

Out of ICU

8pm Sunday 28 November 2010　

The covering doc released Michele from ICU at about 7am this morning and we moved into a room on the second floor at 3pm. Administration is not this hospital’s strong suite.

After Michele had gone to sleep at 7pm, they said that the covering doc wanted us to move to the fourth floor. We shall let Dr Fox duke it out tomorrow.

Otherwise, Michele is doing better and has increased her vocabulary beyond her basic “NO!”

RKS

Some Progress

The Tube

10pm Saturday 27 November 2010

The meds continued to be reduced today. Michele was able to stay awake for several minutes at a time this morning and slept most of the afternoon. She is able to say a few words, most often a loud "No!" She doesn't seem to be enjoying her stay in ICU.


She was somehow able to pull out her feeding tube and throw it on the floor. Apparently she did not like it is my guess. The nurse was hesitant to go through the trouble of reinserting it through her nose down to her stomach and decided to have Michele tested to see if direct feeding by mouth was possible.

A therapist from rehab came in to test Michele with many of her most disliked foods: graham crackers, oatmeal, apple sauce, and chocolate milk. When she initially expressed limited interest in the menu, she was given the choice of the menu or the tube--an easy choice. She passed the test.


Tonight she enjoyed what the hospital chef calls solid food--runny mashed potatoes and triple ground beef. Yummy! We will see what he comes up with tomorrow morning.


RKS

Quiet Days

And Quiet Nights

10pm Friday 26 November 2010

The docs said today that Michele was doing OK and that they did not have any unexpected concerns.

She continues to remain sedated and only opens her eyes momentarily, with one notable exception. In mid-afternoon Miss Exuberance and (her equally evil twin) Miss Peppy made a spirited entrance into the room. The were sent over from the dreaded rehabilitation and physical therapy department. Having been foiled on the third of November (see post), apparently Miss Merry Sunshine was now sending in her cohorts to extract revenge.

Try as she could, but in her weakened condition, Michele was no match for two of them. After a valiant effort, Michele yielded to daunting persistence and superior numbers. She eventually stood on the floor and took a few steps while being supported by the two of them. When released back to her bed, she promptly fell asleep, exhausted.

RKS

　

Recovery Mode

A Quiet Day in ICU

730pm Thursday 25 November 2010

After yesterday’s late night surgery, Michele spent the day sedated -- she completely missed turkey day. The meds are being reduced as the pain subsides, and we expect her to be awake and talking late Friday morning.

A couple of scans and tests were done. Everything was as expected.

RKS

Post Surgery

.

Normal Recovery

Noon Thursday 25 November 2010

Everything concerning recovery is as expected.

We will be in ICU at least overnight.

RKS

More Surgery

　

Late Night Surgery

1150pm Wednesday 24 Nov 2010

　

Dr Fox drained the wound area early Wednesday morning and sent fluid samples to the lab for analysis.

Michele remained unconscious and her condition continued to deteriorate throughout the day.

He repeated the procedure late Wednesday afternoon.

The lab results and her condition indicated that the infection growth was not being hindered by treatment with antibiotics. (Note to medicos: Enterobacter cloacae -- cefepime / maxipime )

At 930pm he decided to perform surgery to remove a portion of her skull in front of her left ear. He planned to remove a bone flap about two inches (5cm) in diameter and replace it with a titanium screen.

The surgery began at 1030pm and was successfully completed at 1130pm.

Hopefully, we will be home by the middle of next week--02 December.

RKS

.

End of ICU in Sight?

.

Goodbye Catheter.

And Good Riddance

1030pm Tuesday 23 November 2010

Dr Fox removed Michele’s skull catheter this evening. This is the first step in getting out of ICU. As a matter of policy, patients with a skull penetration must stay in the real hospital (ICU) and are not allowed in the hotel portion of the hospital upstairs.

This is the best news all week. We still have a serious infection to worry about and are still accumulating cerebrospinal fluid under the scalp. Removing the catheter is our first sign of progress.

RKS

Staying in ICU

Holding Pattern

1030am Monday 22 Nov 10

Dr Fox decided this morning that Michele will stay in the intensive care unit (ICU) for at least a few more days. At the earliest, she may be released Wednesday, but will probably spend Thanksgiving in the hospital.

The catheter in the top of her skull has not drained much cerebrospinal fluid (CSF) during the last 24 hours, indicating that the pressure on her brain has been relieved. But CSF is still leaking from the scalp incision area.

Dr Fox drained the accumulated CSF from the scalp flap then added some stitches to the incision to stop the leakage. It still looks like a scalp infection and he sent a fluid sample from the scalp area to the lab for a 48 hour biological culture study. The microbiologist did not find any organisms during the initial inspection. Last week’s sample from the brain area proper did not indicate any bacterial growth. Is a puzzlement.

So here we sit, healing ever so slowly.

RKS

No News

Doing Fine

6pm Saturday 20 N0vember 2010

Is "no news" "good news"? Nothing happening--just waiting on Monday morning, our next decision point.

Everything getting back to normal and healing.

RKS

Back to The Hospital

.

Fluid Accumulation

4pm Thursday 18 November 2010　

Michele seemed to be recovering nicely from surgery (28 Oct) until Tuesday afternoon, (16 Nov)

Shortly after one o'clock, Michele became highly agitated and soon developed a severe headache. She said that she was experiencing the worst pain of her entire life. She believed that she was about to die.

The surgical wound area under her scalp became engorged with fluid and nearly clear fluid began flowing out of the incision area. When the ambulance arrived, her blood pressure was elevated to well over twice normal levels.

At the St David’s emergency room, morphine and other drugs were administered and a CT scan was done, The scan indicated a large accumulation of blood and cerebral spinal fluid (CSF). Dr Kit Fox, her surgeon, extracted about 50 cc of cerebral spinal fluid from between the scalp and skull in the area of last month’s surgery. This greatly improved Michele’s condition.

In the vernacular, Michele had “blown a gasket.”

Michele was sent up to the fourth floor at about 8:30 PM and was able to rest quietly throughout Tuesday night.

.

Wednesday morning, Dr Fox decided to implant (under the skin) a small “shunt” (plastic tube) to redirect or drain the excess cerebrospinal fluid from the surgical area to Michele’s abdominal area.

Michele was in surgery from 4 to 6pm Wednesday.

When Dr Fox opened the wound area, he did not like the color and texture of the fluid he found. Instead of putting in a shunt, he drilled a hole in the skull outside of the wound area and inserted a catheter to reduce the pressure and to drain the fluid into a collection bag. He has ordered an analysis of the fluid. The results will be available Saturday morning.

Another 100 cc of CSF has been collected in the 22 hours since surgery closure. Scans are scheduled at 12 hour intervals.

Michele will remain in ICU at least through Monday.

Dr Fox will evaluate the situation Monday and determine our next action.

RKS

At Home

The First Week at Home

Wed 10 Oct 10

As the astute observer has surely surmised, this surgery recovery has been much more arduous than the previous surgeries. Michele is making progress and has a mixture of good and terrible days.

Today’s problem was a cerebrospinal fluid leak from the surgical area. Cerebrospinal fluid surrounds the brain and spinal cord. A large leak can cause serious problems, hence, a quick trip to see Dr Fox, the surgeon. He evaluated it as a small leak and we will see him again Friday morning for another evaluation.

We met with Dr Chadha, the oncologist, last Wednesday. He has not found a suitable Phase III (experimental) treatment option, and he is not very confident that he will find one that will accept Michele. We have been through all of the appropriate standard FDA approved treatment options and three surgeries and have lived much longer than the median life expectancy. All of that does not make her a good candidate as a study participant. This week, we are not even sure that we would want to participate.

Dr Chadha had a sample of the tumor sent to a lab for a detailed molecular and DNA analysis. Most chemotherapy treatments are most effective against certain molecules or genes found in the various varieties of Glioblastoma multiforme (GBM). Armed with the analysis, he might be able to find a suitable treatment. (For you medicos, we want to find out, in particular, if the MGMT gene is methylated.)

Our next meeting with Dr Chadha is scheduled for Friday, 03 December, which is right after our next MRI.

.

In other news:

Last weekend, Karl, my son, and his wife Liz came in from Little Rock. It was a wonderful visit. I took a mini-vacation and put them to work. They fixed all the meals and did many drudge tasks that we had been putting off for weeks. Liz fixed an apple desert Friday that was so good that Michele had seconds. Near as anyone could remember, that was the first time Michele has ever had seconds on deserts.

Liz also baked peanut butter cookies for Michele. Can you believe that Michele would eat a cookie? Debra D-S, from the Statesman, brought some PB cookies to Michele last month and Michele gobbled up every one of them in two days. This is not the same woman that I married.

This week, Carrie, one of Michele’s dearest friends, who goes all the way back to Hong Kong, will be helping out. She is always a joy to have visit and brightens Michele considerably. We plan to find plenty for her to do.

Michele continues to work on her latest book, with much help from Mary Ann R. and Catherine R. I think that they hope to have the first edited draft finished before Christmas. It has truly been a labor of love by two very good friends.

Next week, Michele thinks that she might be strong enough to begin working out at the gym again. Audrey was working wonders with Michele before the surgery. The improvement was phenomenal.

We don’t expect much to happen until the next MRI and meeting with Dr Chadha, so the blog will be closed down until 05 December or there abouts, you all.

　

RKS

Finally, Free at Last

The Days are Just Packed

2345 Wed 03 Nov 2010

By 10am, Michele was asking everyone (nurses, techs, therapists, housekeeping, food service, volunteers, etc) in sight when she was going to be released from rehab jail and would be allowed to go home. All to no avail until noon when she hit upon a supervisor named Bill, who determined that Michele was a friend of Mary and Bruce H. Then it was smooth sailing. Bill tracked down everyone who needed to sign and initial all the forms and had everything waiting on the final signature by the admitting doctor.

The morning was filled with more evaluations and therapy. The afternoon was filled with analysis and recommendation reports. One very good bit of news is that they firmly believe that with a lot of work, Michele will be able to improve her speech and could eventually be able to read novels again. We will begin looking for a home therapist next week.

During the admitting doctor’s exit interview, he said that Michele’s progress was most remarkable. Last week he thought it would take her a week to rise to her current recovery level. He just did not know her as we do.

We arrived home just as the five o’clock rush hour traffic was peaking. And then had something most unusual--a really hot, not warm, hot dinner. Then, what else, of course, to bed and sleep.

We have a meeting Thursday with the oncologist to discuss the next treatment plan.

RKS

The Way Home

The Last Night

0900 Wed 03 Nov 2010

So tell us Ms Kay, how was your day, did you sleep well last night?

MK: Wednesday began like any other day, shortly after midnight, I guess. It might have been dreary, but I was weak and weary--recovering from surgery, you know. I was sound asleep--not merely napping.

But not for long. I heard a tapping, then a rapping at my chamber door. "'Tis nurse Twit," I muttered. Before me appeared nurse Twit, who I could plainly see because she had turned on the overhead light. She administered an unknown number of pills for an unknown malady. Apparently, the unknown malady can only be cured by consuming pills at midnight. Something to do with the bewitching hour. Halloween was Sunday, you know.

Since sleep is the golden chain that ties health and our bodies together, and all the medical folks must know that, you then had a most restful night, correct?

MK: Not quite. An hour later, nurse Twit reappeared before me in the vapor of the night light. Apparently, 1:30 am is a lovely time to test your blood sugar level. However, she could not get the blood-sucking machine to work, so she turned on every light in the room to determine the problem. Lacking the necessary mechanical skills, she left the room for remedial training. She also left every light in the room on. She appeared forty minutes later and completed the test.

What next?

MK: I reached for sleep and drew it round me like a blanket, muffling pain in the merciful dark. I slept soundly for a good twenty winks.

However, having previously implied (in a most subtle, but direct, manner) to nurse Twit that she woke me up, my tormentor reappeared before me at 3am, shinning a flashlight onto my closed eyes and attempted to make amends by forcing a sleeping pill on me.

Then you had sleep, safe and restful, sleep, sleep, sleep?

MK: Not quite. At 7:20 am Miss Merry Sunshine, the physical therapist, bounced in and asked if I was ready to do some stair climbing.

Was your response printable?

MK: Quite. I was able to open one eye and asked, “Why would I want to do something like that?”

I assume that you were giving her “THE LOOK” with only one eye.

MK: I don’t know what all this talk about “THE LOOK” is about, but Miss Sunshine did leave rather quickly and quietly.

And then?

MK: I dozed for a few minutes, then I figured that by that time, they were bound to be serving hot coffee and warm croissants soon. That would be spot on. So I got up. I was eager to have my first breakfast in my new room. You just cannot sleep the day away if you want to be a good rehab patient.

I think we had best end the interview now. Deadline, you know. Thank you, Ms Kay.

MK: You are welcomed. And thank you very much. Think that I will get some shut-eye now.

.

Going Home?

Ending Rehabilitation

2300 Tuesday 02 Nov 10

Faithful readers will recall that yesterday I noted that Michele was to start rehab at 7:30am. The faithful will also remember the closing -- wondering how much serious rehab Michele can stand. (The unfaithful can look at yesterday’s blog.)

The answer is one day.

When Michele returned to her room after her last session late this afternoon, she announced that she felt rehabilitated and that she was going home Wednesday. After much discussion, she decided to compromise and would give them until 5pm to complete their typically one week evaluation, findings, and recommendations. ( It reminded me of her compromise on where we should live when we first got married--I moved 20 miles south and she moved a mile north. )

St David’s has exceptionally nice people and great facilities, but Michele just wants to go home. Sadly, I think that she could have really gotten something out of it.

RKS

Moving Next Door

Starting Rehabilitation

2345 Monday 01 Nov 10

This afternoon we moved from the general hospital to the adjacent St David's Rehabilitation Hospital. The room, number 411, is much smaller than what Michele is used to, but is probably much nicer than most hospital rooms that I have been in.

They are serious about their rehab mission. Michele's first session starts at 7:30 tomorrow morning. I plan to be absent. Even some engineers have read Chaucer and know "It is not good a sleeping hound to wake." Seriously, I mean, this women does not believe that normal people can begin their workday at eight o'clock each morning. Phone her sometime before ten AM and you will know what I am talking about. I speak the truth. She thought the fire alarm yesterday at 8 AM was bad. Now they expect her to be up and doing something productive at 7:30? LOL.

The rehab may last two weeks. We will see how much Michele can stand.

RKS

Bong Bong Bong Bong

The bells, the bells, listen to the bells.

2345 Sunday 31 Oct 10

Michele's day started at eight o'clock with the deafening sound of the hospital fire alarm. The alarm ran for the next forty minutes. This was before she received any happy pills, let alone coffee. A difficult beginning to a difficult day.

The highlight of the day was a long walk down the hall accompanied by her eldest grandson and some visits from friends. The rest of the day is best forgotten.

RKS

Did Some Good

Visit her, gentle sleep, with wings of healing.

Saturday, 2355, 30 October 2010

Ed note: Lost wi-fi today.

Michele exhibited her remarkable resiliency today and made great progress toward recovery. She is back to talking nearly as well as earlier this month and took a little walk around the room. Today around the room. Tomorrow down the hall!

As another indicator, she gave me "THE LOOK" several times. Sparkling humor is simply wasted on her.

But there is still much work to do on the road to recovery. The doc is talking about sending her next door to the rehab hospital for a few days of intensive work. It depends upon how she does tomorrow, but I suspect that we will be moving next door Monday.

Nite all,

RKS

Hello World

Much More Better

1230 Saturday 30 October 2010

Ms Michele Kay van Winkle finally awoke this morning at 1000.



(Artist's representation of Ms van Winkle waking up, after donning Halloween costume.)

She has been awake and talking (after coffee, of course) ever since. She grabbed her phone and has had long conservations with her children (in English) and brother (in French.) There was also a parade of therapists coming through to check over everything, one of which engaged Michele with another long French conversation.

She had brunch, then, a few minutes ago, got loaded up with meds, and, as usual, is expected to conk out again at any minute. Oops, there she goes. Good night darling.

RKS

Sleep and More Sleep

.

O Sleep, It Is a Gentle Thing
0830 Saturday 30 October 2010
.

Well, this isn't any fun at all. All Michele does is sleep. In the past twelve hours she has barely stirred. I'd like to tell you how she is doing, but the only thing she has said is "Oh, hello darling. When are we going home?" Then back to sleep.

RKS

Moving on Up

.
Pomp and Circumstance
1530 Friday 29 October 2010
.

At 2:45 pm this afternoon, Michele graduated from ICU 357magnumsumacumlaudielordy and with highest honors.

We are in room 403, the same room we started in last spring. Michele continues to do what she has been doing a lot of lately--sleeping.

Don't expect much of anything to happen for the rest of the day.

Expect the next posting Saturday after Dr Fox makes rounds.

RKS

Still in ICU

.
Resting Comfortably

1300 Friday 29 Oct 10

Michele conked out at 2100 (9pm) and scarcely wiggled the whole night long. She had a hearty breakfast (for her--a snack for a bird) and her first cup of coffee in two days--probably a recent record time of abstinence for Michele.

Dr Fox looked her over this morning and thinks that she can go upstairs to the hotel portion of the hospital this afternoon. She is experiencing some brain swelling from the trauma of surgery--not unusual, but bears watching a bit longer. She is somewhat disoriented, but that is thought to be temporary.

Michele had her regularly scheduled post-MRI this morning. We should get the results by 1500.

RKS

Awake and Hungry

.
Where's the Beef?

2030 28 Oct 10 (8:30 pm for you civilians.)

Dr Fox stopped by a while back and gave Michele the twice over. He complimented her on how well she could wiggle her fingers and toes. She has had a lot of practice today. Dr Fox declared her in excellent condition. (All the way from the tips of her toes to her fingers?)

After that she was ready to eat. She wanted to order several of everything, then we figured that she was playing hostess and was ordering food for everyone in the room. Michele was also worried because we were a guest chair short.

Don't be surprised if you receive an invitation for her next party soon.

RKS

More ZZZZZZZZZZZ

.
All Quiet in the ICU

1230 28 Oct
.

No change. Michele continues to sleep and her blood pressure is near normal. It looks like wake-up is at least another hour away.

After wake up, the next big event is expected to be Dr Fox making rounds late this afternoon.

RKS

In ICU

.
ZZZZZZZZ

1000 28 Oct

Sleeping away the morning.

Michele was wheeled into ICU Room #2 at 0945 and is hooked up to all the beeping and whirling equipment.
When they wiggle her shoulder she flutters her eyes and looks like she just wants to sleep undisturbed. She counts the nurse's fingers and does the rest of the neuro check about every 15 minutes.

All vitals are returning to normal, and she should wake up in an hour or two.

RKS

Closing

.

All As Planned

0905 Thur 28 Oct 10

.

Just talked with Kit Fox.

Everything went as expected and according to the plan.

Michele should be in ICU room number 2 latter this morning and should be there for the next 24 hours.

RKS

Early to Rise

.
In OR

0700 28 Oct 2010

.

We arrived at the hoispital at 0500 because, as everyone knows, Michele never wants to be late for anything. She also seems to enjoy sitting in waiting rooms, waiting for her scheduled appointment time. Traffic on Mo-Pac expressway was the lightest that I have ever seen and we made it to the hospital in record time--all the better to sit around and wait my dear. As near as she can recollect, this may be the earliest (0330) that Michele has gotten up in her entire life.

Everyone in charge of anything in the operating room came in and quizzed Michele about what was going to happen in the OR and asked her birthday--but her birthday is not until December.

They then wheeled her out at 0700 and said not to expect an update before 0900. Will send an update when I hear something.

RKS

Surgery Prep

Preparing for Surgery

Tuesday, 26 October 2010

We spent most of Tuesday at the hospital, filling in forms and doing pre-surgical stuff for Thursday‘s surgery.
.
As part of the process, Michele had a detailed MRI performed. We met with Dr Kit Fox, the surgeon, to discuss the results.

.

It appears that the original surgical site is stable and Dr Fox plans to look at it, but not touch it during surgery. With no change in months, he thinks that the contrast area we were worried about is most likely scar tissue.

.

{ Editor’s note: Doctors do not like to call cancer “cancer” in an MRI. They like to call cancer “contrast area” or “area of concern.” }

.

The new area of concern, a few centimeters (an inch) in front of the prior site has grown at a tremendous rate--perhaps doubling in size during the past few weeks.

.

Dr Fox intends to remove the "frontal tip" of Michele’s left temporal lobe--a volume of at least 30 cc but less than 50 cc. A quick scaling of two MRI slices looked like the maximum dimensions of the contrast area were 3cm x 3.5cm x 5 cm. (1.2 inches by 1.4 inches by 2 inches.) If all of her circuits are in the right spots, Dr Fox does not believe that he would remove any critical tissue. He believes that he will be able to remove the entire visible tumor.

.

The plan is to have the surgery early Thursday morning and be home Sunday. I plan to post updates on this blog rather than trying to send e-mail’s all day long.

.

Best,

.

Robert

Very Bad MRI

.

Very Bad MRI

Friday 15 October 2010

We received the MRI results today. The results are very bad and indicate rapid growth of the cancer.

Dr Chadha, our oncologist, has recommended surgical removal as soon as possible, which will be on Thursday, 28 October, with the same surgeon, Kit Fox, at the same hospital, St David’s Central (32d Street at Red River) as the two previous surgeries.

On the bright side, Dr Fox said that he expects this surgery to be much simpler than the previous surgeries and does not expect the new surgery to impair any mental functions.

On the dark side, we are out of standard medical (chemotherapy) and radiation treatment options. Dr Chadha will spend the next few weeks looking for an experimental (Phase III) study that might accept Michele for treatment. The most promising GBM Phase III trials tend to cherry pick patients who the researchers think will have the greatest chance of success and survivability. With the treatments and surgeries she has been through the past 20 months, finding a promising study may be difficult.

One good result is that Michele will be off the very harsh Carboplatin chemotherapy, which she has been on for the past three months. We hope that, without the Carboplatin treatments, Michele will regain some the mental capacity recently lost.

　

RKS

Pretty Good MRI

.

Pretty Good MRI

.

Friday 17 Sep 10

This week’s MRI report indicated no significant change from last month, which in our world is pretty good news.

We plan to continue the current four week treatment schedule and have the next MRI on Thursday 14 October.

RKS

Next MRI

Michele's next MRI is scheduled for Thursday, 16 September.

Results should be posted on Sunday 19 Sep.

RKS

Rough Weekend

Dehydration Monday

　

Michele had an uncomfortable weekend after Friday’s first chemotherapy treatment with Carboplatin.

She experienced gastrointestinal toxicity--vomiting and nausea--which is common (65% occurrence) for Carboplatin.

She was also in bed from Friday afternoon until Monday morning, when we went back to the doctor’s office for an unscheduled office visit and a rehydration infusion. We also got some meds to combat the side effects.

Carboplatin is pretty powerful stuff. It is no wonder that it is only administered once every four weeks. The doc says that the worst is over and that Michele should be feeling better every day, but he still wants to see her again on Friday.

RKS

.

Can Do

.

Yes We Can

Friday 20 August 2010

.

As expected, the peer committee endorsed the proposed treatment plan. The next MRI is scheduled for Thursday 16 September--in four weeks. We should get the results on Friday and plan to post the results late Saturday.

If the results are good, we will continue the treatment plan. If the results are bad, we are running out of options.

On a sad note, Michele’s French chemo buddy died yesterday.

RKS

.

Better News

.

Better News

.

Michele and I visited with our surgeon, Kit Fox, and oncologist, Punit Chadha Monday afternoon.

Dr Fox showed us side by side comparisons of the May and August MRI’s. There are actually two areas of concern.

On some MRI slices (or views), the small “enhancement” in the previous cancer location does not appear to have changed significantly. Dr Fox does not believe that this enhancement should be a major concern right now, but of course bears watching. He says that it is far outside the critical “eloquent” or “word area” of the brain. ( Dr Fox seems to define “far” as over a half inch or a centimeter in distance. ) He believes that in its present size and location, removal would be a much easier surgery than either of the surgeries he performed on Michele last year. He does not see any need for immediate surgery.

The other area of concern is completely outside of the original cancer area, perhaps over an inch or about three centimeters in front of the original site. It is closer to Michele’s left eye and is in the “frontal area“ of her brain. It is common for GBM cancer to reappear in different areas of the brain.

The area of “enhancement” is very small--pea sized--5mm by 7mm. It is not in a critical area of the brain and is on the surface, just beneath the skull. If you were a highly skilled (but somewhat flippant) brain surgeon, you might say that it doesn’t get any easier. He does not see any need for immediate surgery and thinks that we should consider all our treatment options before having a third surgery in the same general area of the brain. Some surgical risks are cumulative.


Drs Fox and Chadha will decide on a treatment plan Friday morning during a peer review meeting. We expect the following treatment plan to be endorsed by the committee:

1. Stop CPT-11 and start Carboplatin this Friday, 20 August and plan to continue on a four week cycle.
2. Continue Avastin, but on a two week cycle, beginning on 20 August.
3. Rest (no treatment) on alternate weeks.
4. Have another MRI in September. (Five weeks would be 16 Sep.)
5. Re-evaluate the situation in September.

RKS

Bad MRI

.
.
Friday the Thirteenth--Bad Luck
.
.
.
We received the results of Thursday’s MRI Friday morning. The news was not good.

The radiologist found a small “enhancement” in the previous cancer location. This is most likely a recurrence of GBM cancer. There is a very slight possibility that it could be latent damage caused by the radiation treatment from early last year. The only way to tell for certain is to surgically remove the growth and have it examined by a pathologist.

We have an appointment with Dr Kit Fox Monday afternoon to have a surgery risk evaluation. Michele has had so much of the eloquent area of her brain removed that she is having great difficulty now with anything having to do with words (reading, speaking, listening, and remembering names) that we wonder how much more of her brain can we afford to have removed.

A third surgery could be as early as next week but is more likely next month.

If we do not have immediate surgery, we will change the chemotherapy mix and switch from CPT-11 to carboplatin, while continuing Avastin. Carboplatin (Paraplatin) is one of the older chemo drugs--it was first approved for cancer treatment in 1989.

Our main concern with carboplatin is that it causes the blood cell and platelet output of bone marrow in the body to decrease dramatically, sometimes as low as 10% of its usual production levels. This decrease in white blood cells ( neutropenia ) will cause a increased probability of infection, which may require hospitalization for treatment with strong antibiotics. .

　

Our most probable course will be to:

1. See Dr Fox Monday afternoon.

2. Stop CPT-11 and start Carboplatin.

3. Have another MRI in late September. (Six weeks would be 23 Sep.)

4. Re-evaluate the situation.

5. A third surgery the last week of September.

　

Best,

RKS

Next MRI -- 12 August

Dr Chada has scheduled Michele's next MRI for Thursday, 12 August. He has decided that Michele is responding to treatment well and has extended the MRI interval from nine to twelve weeks. We expect to get the results on Friday the thirteenth and will post the results on Sunday.



RKS

Five in a Row

Thursday's MRI indicated no change from the March MRI -- no evidence of cancer or anything new and abnormal. No evidence of recurrence is visible.

RKS

Four in a Row

.

Michele’s Luck Continues after St Patrick’s Day.

.

Same as before, the MRI shows no sign of cancer.

.

Even though Michele may not have a single Irish gene, her luck continues. We had originally scheduled her MRI this week for Wednesday, St. Patrick’s Day (since we Schultz’s are so Irish). However, Michele could not stand the thought of waiting two days for the results, so she rescheduled the MRI for Thursday, allowing us to get the results during her doctor’s appointment on Friday. The doctor insisted upon discussing the results face to face.

Michele’s second surgery was way back on 23 July 2009 and she is now in her eleventh three-week cycle of Avastin and CPT-11. Since it seems to be working, we plan to continue that protocol for as long as it works.

On this MRI especially, we were not expecting such good results. We had two major concerns this month.

Michele’s memory and communication skills have continued to deteriorate. In the past month, she has experienced increased difficulty in speaking and has had extreme difficulty remembering names -- even the names of relatives and close friends. The cancer was located in the eloquent (Broca’s area -- word processing speaking, word selection, word memory) portion of the brain. Back in February 2009, the first sign of trouble was difficulty in speaking and reading. A tumor recurrence in that area could be causing these current problems.

Our second concern was Michele’s “wobbliness.” Mobility has been difficult because she has had serious problems with balance and coordination. In the past month, she has experienced several very painful falls. No bones have broken, but she has some huge bruises. A completely different portion of the brain, the cerebellum, is responsible for the body's balance, posture, and the coordination of movement. If the cerebellum was now cancerous, we would be in real trouble.

Although no cancer was observed in either area, or anywhere else in Michele’s brain, considerable shrinkage of the eloquent area was observed. The doctor believes that this new shrinkage may be the result of the radiation treatment received last spring -- many brain cells were damaged by the radiation and only now are withering. Regeneration of the area will not happen. A study was published last year suggesting that speech functions can shift to nearby areas in the brain.

. [ Plaza M, Gatignol P, Leroy M, Duffau H. (2009). Speaking without Broca's area after tumor resection. Neurocase.9:1-17. PMID 19274574 http://www.ncbi.nlm.nih.gov/pubmed/19274574 ] . ..

Exercising the brain may help develop undamaged areas. We are beginning to work on this.

No explanation was given for Michele’s mobility and balance problems.

In summary, we are alive without visible brain cancer, which is an accomplishment, but continue to have serious language and mobility problems.

We expect the next MRI in nine weeks -- o/a Thursday 20 May.

Next posting expected o/a 22 May.

RKS

　

Anniversary and a Schedule Change

.

Anniversary and a Schedule Change

.

Today is the anniversary of Michele’s seizure, which was the first sign of her brain cancer. It has been a long and hard year, but we are bearing up and Michele’s British upper lip remains stiff.

.

We have also made a slight change in the chemotherapy schedule. Michele has a chemo buddy now who is French. He is about six months ahead of her in his treatment for GBM brain cancer. He and Michele are coordinating their treatment schedules so that they can get their infusions (IV’s) on the same day, Fridays. Does not sound too romantic, so I am not worried or jealous. I mean, how much can happen when you are all wrapped up with three IV bags and IV tubes?

.

She remains on the same three-week treatment cycle -- two Fridays receiving chemotherapy and one week off for much needed rest. The next MRI has also been shifted back a day. For those of you who want to mark your calendars:

Chemo Friday 26 Feb and 05 March

Rest 8-12Mar

MRI Thursday 18 Mar (the day after St Patrick’s Day)

Chemo and MRI results Friday 19 Mar

Chemo Friday 26 Mar

Rest Palm Sunday to Easter

　.

Next posting o/a 20 Mar.

.

RKS

Another Clean MRI

.
.

Three in a Row

Michele had a MRI Wednesday and received the results Thursday.

The MRI did not show any indications of renewed cancer growth. This is as close to remission as GBM cancer gets and may not be remarkable, but is certainly unusual. She has been on Avastin / CPT11 for almost six months now -- since 20 August 2009.

We will continue the same Avastin / CPT11 three-week cycle -- two Thursdays of treatment and one resting / recovery week.

The next MRI will be in about nine weeks -- on or about Wednesday, 17 March, St Patrick ’s Day -- that will be over a year after her first surgery.

RKS